Today was an eventful day! Liam is finally asleep after a busy day playing at his friend Jackson's house. His mother is so sweet. She literally kept Liam all day so Keith and I could bring Alanna to the High Risk Clinic. I think after today I deserve some cookies and I'm in luck. I have a whole batch of cookie dough in the fridge. I'm going to bake a few... ok maybe more than a few. Some people pull out the wine but I pull out the cookies :)
Ok back to High Risk Clinic: Here's the 411 on High Risk Clinic... It's located at Cincinnati Children's Hospital and it's a place where babies who are born sick go. It has Neonatologist doctors who follow-up on your child's care. A Neonatologist is basically a step up from your regular pediatrician. They went to school longer to specialize in the field. We see Dr. Jason Wiles at the clinic and absolutely love him and he loves Alanna. He was there in the delivery room working to save her and was there at the NICU by her side through it all. We will always have a special place for him in our hearts. I do love to see him but also dread High Risk Clinic. For one it's a 3-4 hour appointment and it's also a reminder that I'm never quite out of the woods with Alanna. I'm still on the roller coaster ride going up and down hills. It's a good thing we have this clinic though because when I called Alanna's regular pediatirician the nurse thought "Hydrops" was an inner ear condition. You can now see why this clinic with specialists is important for her :)
Dr. Wiles was overall pleased with Alanna's progress. She's finally on a growth chart. For her first appointment back in August, she was to small to be placed on a normal and even a preemie growth curve. Dr. Wiles told us today that Alanna is very unique in that we can't place her in the race against other babies her age. She had a rough start and had to lose weight the first month and a half and she was born premature on top of that. He said she is basically in her own race and it's more of a marathon for her. She has to play catch up but she is gaining the right amount of weight each day to be on a good path. Alanna has terrible reflux and spits up all the time on top of being tiny. Dr. Wiles says this is normal for preemies and he feels she will grow out of it as she get's bigger and achieves more gross motor skills where she is upright and more mobile. He said it should improve with age.
As far as language, cognition and gross motor skills Alanna is presenting overall at 3 months of age. This is good news because with preemies you are suppose to go by their adjusted age and not their chronological age. Adjusted age is the age they should be if they were born on their due date. So Alanna should be 2:5 months not 4 month really.
I'm feeling very thankful today and blessed. I know Alanna is still very small and get's mistaken for a newborn all the time and that could be upsetting but I still feel on top of the world. My experience with my battle has only allowed me to feel thankful in every given situation. It's amazing how it takes going through hell and back to finally teach one to improve. I used to feel sad in the beginning when I had to leave Alanna in the hospital. I felt cheated I didn't get to bring my little newborn home. I felt like I was going to miss out on that cute "little baby stage". My feelings of thankfulness since my experience has channeled in our Lord and he has taken care of my "newborn desire" need. I feel he has given me this special newborn time longer than I would've ever imagined. She's 4 months and I still feel like I have a newborn. I have my little bundle of love, my baby doll my everything. I look at this situation as a surprising gift from God rather than a negative shameful event. I feel nothing but blessed and thankful. He has given me my little newborn longer than I could've ever imagined.
Some Alanna at home Updates!! Alanna is grasping toys and mouthing them. She is cooing all the time, laughing and is constantly smiling and happy. She is so happy all the time. She has a little dimple on her right cheek just like her daddy but other than that people say she looks just like me. She loves music and Miley's "Party in the USA" is her favorite song. Every time it's on the Pandora she coos and smiles. I swear that girl is trying to sing. She is also very nosey (like her mother). She loves to listen to me talk to people on the phone. She becomes very alert, wide eyed and stares me down intently. It's like she's trying to take in every detail. I will admit we need to do better with her tummy time and gross motor skills. I spoil her to much and she hates tummy time so I tend to let her off the hook sooner than I should.
That is the latest on Alanna tonight. I'm going to continue my battle story when I get the opportunity as I still have lots of feelings I need to let out. It helps so much opening up to you all. I feel your love and it's so comforting.
Thursday, October 25, 2012
Tuesday, October 23, 2012
The Battle for Alanna's Life: A Mother's story and Journey
Ok so here I go... It feels strange starting this blog when Alanna just turned 4 months but I needed an outlet to release some of these feelings that have been haunting me each day. I really feel like I have been through a real battle. Now that Alanna is home and is doing better I'm starting to process what I've been through and it's been haunting me each day. . I'm haunted with thoughts and playbacks of my time in the hospital. Hearing the words for the first time at 33 weeks "Your baby is very sick. I'm so sorry. Your baby is very sick. I'm so sorry"... Is all the doctors would tell me. These words were the beginning of a war. A war of fighting and dodging bad news left and right and trying to not get hit in the heart with a bullet of news that will kill my hopes and dreams forever. The doctor warned me when I got home that I might develop some post traumatic feelings and he sure was right. I hope this blog and release of my story will help conclude and put to rest some of my feelings. I really wish I would've blogged in my hospital room when I was there experiencing this but all I could do was sit and stare out in space and cry.... Ok so here is my story. I also want to say before I write it that mommy's intuition is always right!! I'm not kidding. Our intuition is the most powerful thing that is never wrong. You will see what I mean.
May 25th The day I believe Hydrops Started with Alanna
I walked into my mom's house and the first thing my mom says is "Wow Nikki you look really big". "Thanks mom I replied" and went running upstairs to cry. I felt terrible that day and unusually huge that day of my sister's wedding and the last thing I wanted to hear was someone else bring it to my attention. I didn't think anything of this until each day from here on out I started gaining pound after pound... Something doesn't seem right...
I tell my doctor that I feel really huge and at this point I'm 31 weeks pregnant. The doctor assured me I was not to big and was normal. Then the pains started to come. My stomach felt like a rock all day long and I felt terrible pains in my stomach constantly. It really felt like contractions! I told the doctor this and they once again assured me I was normal and that the second baby is always harder and to expect Braxton Hicks to occur more often.
June 5th: Nikki the Pest and Girl who Can't handle normal Pregnancy Pains!!
Here I am being a pest and calling the dr again!! This time I was crying and said I'm feeling pains every minute and not feeling the baby move. The doctor told me to go to Christ in Labor and delivery. I was put on monitors and told the baby and I were fine. I was sent home. This cycle happened a few more times in and out of the hospital. One time the doctor looked at me and said "Honey I had 4 boys and it sucked having these Braxton Hicks but I just toughened up and got through it." At that second I wanted to throw my cell phone at her face and scream at her. All I could do was cry and tell her "something just doesn't feel right". She looked at me and said "well maybe something else is going on." I said "yes there is!" I was then sent home....
June 11th Doctor Finally Makes a Good Call
"Nikki were going to your doctor! I'm going to drive you. Let's go" Those were the words of my wonderful supervisor at Children's. She saw me struggling all day and saw the tears I was shedding in my office. The Lord must've called her to help me because I was trying so hard to be tough and get through the pains. I was told to toughen up so that's what I was doing. When I got to the doctor he ordered me an ultrasound and sent me to Christ because he said I was having contractions. He also told me I had a good size baby in me. I laughed thinking "wow I have a big healthy baby causing me pain." Little did I know I had a baby growing inside me being filled with lymphatic fluid flooding her chest and invading her body. Fatal fluid that kills 80% of babies who get this condition. This fluid was also invading my body as well which is why I was huge.
June 13th Ultrasound of Terror!!
So here's the day of my ultrasound. The ultrasound that still haunts and makes me feel ill to this day! I'm feeling sick now writing about it. I know it will help me in the long run. Here I go...Keith and I walk into the room and I'm so happy to see my baby girl again. The baby girl I so longed to have and have a room full of pinterest crafts and décor I have been pouring my love and heart into. A room with the name Alanna on the wall with colorful scrapbook paper designs. A room with a custom closet organizer that my husband slaved over filled with clothes that I've been collecting. A room with a wall of painted stencil that Keith spent 4 hours pouring his love into so she can have a room that will suit a princess. All my ultrasounds have been such a joyous experience with the techs laughing smiling and telling me how perfect everything looks. Well you know things are not perfect when you have a tech that puts the apparatus on your belly and immediately turns white and silent. She looks at me and says " You will need a level 2 ultrasound". There is a lot of fluid all over your baby and in her chest". She then says "Do you want me to just stop?" I said "Is this bad? What does this mean? What is wrong with my baby". All the tech could say were those famous words that doctors seem to like "I'm so sorry. She then said "I can't say anything the doctor will have to talk to you." She gave me a box of tissues and cup of water and once again said "I'm so sorry" as I walked out the door. All I could do was cry and cry and my wonderful husband who is so positive stayed strong didn't shed a tear. He looked into my eyes so lovingly and said "Nikki everything will be ok". We then drove to Christ again... I was in complete disbelief.... Little did I know the worse was yet to come.
I will end for now tonight. I will continue my story and also incorporate current Alanna updates and feelings. I'm feeling much better tonight. Thanks for going back in time and hearing part 1 of my journey. It will get more positive...bear with me..
Part 2
June 13th Doctor Smart A
This part of the story gets me really angry. I am so angry at my obgyn doctor who was on call that day in the hospital so I apologize in advanced for some harsh words and name calling.
Keith and I arrived at Christ. I don't remember getting out of the car or how I got to the room. All I remember is the elevator ride to the 9th floor and some nurse in the elevator saying " Congrats honey and good luck." How ironic this lady assumed I was heading up to deliver because I was so huge and looked like I was in pain. Yes I was so huge and in mental and physical pain but little did she know I was not in labor. I was heading up to for the verdict on my baby's condition. Is she ok or not ok? It just goes to show we go out in the world seeing other people but never really know their story.
I was admitted into a room and waited for what seemed like forever for the next step. I was expecting a level 2 ultrasound right away! The arrogant dr who I dislike from my obgyn practice came in with a smart ass smirk on his face. I'm going to call him Dr. Smart A (and you can guess what the A stands for) He looked at me and said "So why you here? You feeling pregnancy pains-hahah" He was trying to make a stupid joke. Not a good time for a joke! I looked at him and cried and said "Something is wrong. My ultrasound looked bad and they sent me here for a level 2. At the time my husband, being the problem solver or as I always call him Macguyer, was frantically on his cell phone googling "fluid in fetus chest". He found a condition called "hydrops". Keith asked Dr. Smart A if he thought our baby had hydrops. Dr. Smart A laughs and says "Hydrops is NOT a condition it's a term meaning fluid". He then tells me the ultrasound center is closed and I have to wait until tomorrow to get my level 2. I immediately start to lose my breath and the tears pour down. I think to myself "How am I going to wait all night for this news?". Keith notices how distraught I am and suggests we leave and go to University or Good Sam. Dr. Smart A says "You can do that but I wouldn't recommend University. I would recommend you stay here and be on monitor and he then he diagnosed me with severe constipation. He recommended enema's throughout the night. I know, I know... TMI... but really this was very traumatic for me. Who wants enema's when they are already feeling mentally and physically terrible. Looking back he could have done terrible damage. I was filled with fluid so why was he having nurses pump more fluid in me!?! Well that is why he earned his wonderful name of Dr. Smart A, S.S. I gave him S.S. credentials instead of M.D. (meaning So Stupid)! I'm still bitter if you can't tell but it's helping me.
June 14th Level 2 Ultrasound
I hope I can get these feelings out completely. This is one of the most traumatic experiences ever for me. This experience brought me to a complete out of body state. It was horrible, just terrible!!! Here I go... breath... here I go. I'm trying to do this but (pause...) I don't want to................ Ok the Lord is telling me I have to, will and can so here I go....
It was 8am and lucky me here comes Dr. Smart A who happens to be at the hospital still on duty. I am wheeled down to the ultraound and Dr. Smart A and the young tech are in there. I'm in such pain at this point laying on the table. I feel like a ton of bricks have been laid on my heart and I can hardly breath. I'm also terrified of what this sonogram will show. The whole time I'm expecting to get news and insights as they are scanning but nothing. It's literally like hearing crickets in there. Complete silence. Dr. Smart A just watches the sonagram screen with the same smart ass smirk. The tech is quickly scanning around and copying images and printing them off. Finally it's complete and I still know nothing. I have no clue! I just sit in my room and wait for someone to come in and say something.
Finally a female fetal medicine doctor comes in and sits down in a chair. Keith and I move and sit on the end of my hospital bed. She has a neutral smile on her face so I'm thinking to myself clearly she is going to tell me my baby is fine and the fluid reading was an error. I was hoping that would be the case but no. I was so very wrong. She looked at Keith and I and said "Well we all took a look at your ultrasound and I'm so sorry (those words again!!!) to tell you your baby is very sick." I said "What is wrong? What do you mean". The doctor said "She is very very sick. She has a condition called hydrops. It's very serious and you need to leave now and go to University Hospital. There is a specialist there who will deliver you today and I'm so sorry that your baby is so sick". I said "Are you trying to tell me my baby is going to die" The doctor said "This doesn't look good at all"
Ok................ I need a break now....................
She said "If we don't get your baby out now she will be a stillbirth by week 35.". At that point I look over at my strong, positive husband who never cries and is my rock. He was clearly crumbling. The tears rolled down his face. That was the moment I mentally left my body. It was like someone took a shot of Novocaine and injected it into my whole system. I felt nothing but pure shock. I kept thinking this isn't real!! There is no way! I passed my 20 week ultrasound, my baby has a strong heartbeat. I passed my 20 week ultrasound so this means I'm out of the woods. I was told by the female physician an ambulance from University would be on it's way to get me and bring me there. Keith and I just sat hugged each other and cried and cried....
This is enough emotional pouring for one night. I will continue Part 3 which is the ambulance ride and my meeting with the best doctor in the world Dr. Jaekle the fetal medicine expert in the city. He has a new plan but this plan was not at all what I expected. I never thought this next phase of my journey would ever happen to me. Thanks for your continued support and following of my story. It means more than you know.
June 14th Ambulance Adventure!
I finally get some quiet time to continue releasing my thoughts. I'm hoping Liam and Alanna stay asleep so I can get it all out. I have been dying to write more. It is helping me more than I ever thought. I'm going to write this part as best I can but honestly some parts I don't remember at all.
I do recall after receiving the bad news and waiting for the ambulance, I called my mom right away. I called her and cried saying "Mom it's not good at all. They told me my baby is very sick and will probably not make it." My mom without hesitation said " Nikki, I'm coming down there right now." I said "They are going to take me to University Hospital. I'm not going to be at Christ". She said "I'll be at University waiting for you." I couldn't do anything but cry and feel sick to my stomach. Keith and I just stared at the clock crying trying to make sense of what just happened. It took forever for the University people to come and get me. They finally arrived in my Christ hospital room with a large gurney and 3 transporters and all this equipment to connect to me to keep baby monitored. All I remember is sitting up real high on the gurney afraid I was going to fall. I also remember it was so uncomfortable laying flat down on my stomach strapped down because I had such an enormous amount of fluid pushing against my baby and organs. Everything felt like it was getting smashed. I was burning with pain. I remember the University transporters looking at me with such empathy it made me start to hyperventilate and couldn't catch my breath. I have never been so scared in my life. I didn't feel strong enough to handle what was happening to me. Keith held my hand and stayed right next to me. He would've rode on that gurney with me if he would've fit. As I was wheeled out of my room I saw Dr. Smart A S.S. waiting out my door. All he could do was look at me blanked faced. He just finished a delivery and had his blue scrubs on. He said "I'm so sorry" and that was it. I was wheeled away and remember thinking please don't take me away from Christ Hospital. This is where I had my baby Liam and everything was ok with him. This is the hospital where babies live. Please don't take me to University where my baby is going to die. I passed a room and saw a mommy holding her new baby it was that point I checked out of my mind completely. I don't remember anything at this point until we're outside and I'm getting lifted into the ambulance. The transporters said to Keith. "You can get your car and follow us to University." Keith said "No thanks I'm leaving the car here and will ride with Nikki.". Keith was told to sit in the front with the young driver. I sat in the back with 2 transporters. As they closed the doors the whole ambulance got dark. Everything shut off. I was thinking to myself "Oh great, now I'm going to be stuck in here so hot with no air conditioning, miserable and about to have a mental breakdown with Keith not right by me ." Later Keith told me the ambulance driver was a pretty cool fellow.... When the ambulance shut down the driver said to Keith "Hey man can you open that glove compartment and hand me that piece of paper." The driver then took a wire and performed a fuse by-pass. Keith was quite amused at the prompt way this guy was able to practically hot wire the ambulance and get me to University. In most cases I would've been freaking out this being my first impression of University Hospital but in this case I was desperate to get moving and didn't care what they did!
University Hospital and my Meeting with Dr. Jaekle-The fetal medicine physician
We arrived at the hospital and I don't remember where the ambulance parked or anything until the elevator opens on the 3rd floor Labor and Delivery. I see my whole family in the waiting room. My mom, sister and Keith's siblings. We had an entire crew waiting to support us. This was my first experience with true unconditional love and people literally dropping everything to support another person in need. I was wheeled into my room and my mom immediately pulled out angels, bibles, prayer books and a rosary, She said "Nikki I will be here for you. I know how you feel because I have been in your shoes when I lost your brother." She gave me a hug and held me tight. We all just sat around waiting to hear the next piece of news. I didn't know what this new doctor who was so highly recommended was going to say.
Then I hear the knock on the door. The door opens....
In walks Dr. Jaekle!! He looks like he's in his early 50's, big man with light brown hair. He reminded me more of a retired football player or sit around and watch the game kind of guy rather than fetal medicine doctor. I call him "The legend in his own mind" doctor. He always said quite frequently whenever I would ask him questions "Well Nikki... I am a legend in my own mind.." It always made me smile. Right when he walked in the room he said to me. " I took a look at your ultrasound and the worst thing to do would be deliver your baby now." She would have less than an 20% chance at this point if we delivered her premature.". I had no clue what was going to happen next..... Then Jaekle said " First I can tell you are in enormous pain and I can see you have excessive fluid. I'm going to drain fluid from you abdomen." He then said " Your baby has a lot of fluid in her chest. I'm going to drain her chest also."
After hearing all this I was completely confused. I asked "How are you going to drain me and my baby." He looked at me and smiled and said "using a needle I'll insert into your stomach and then a needle I will insert into your baby's chest. At that I was wheeled down the hall to the ultrasound room.
I entered the room and there were a few students with notebooks getting ready to watch me. Jaekle handed one of the students his cell phone and said "Here man you take this and if anyone calls answer for me." He then started opening cabinets trying to find needles. He was scrambling around and making a mess of everything. He called to a student to go to another room and fetch the bag of needles. I lay on the table and closed my eyes thinking... "Oh my goodness... This man is really going to insert needles in me and my baby! This is the most laid back display of medical professionalism I've ever seen for such a scary procedure." Then the needles came and Jaekle pulled them out of the bag. I kid you not these needles were the longest needles I've ever seen. He took a brown liquid and brushed it on my stomach. I asked him what that was and he said " Well it's my special baby worchestire sauce that I've developed and the babies have taken a liking to." I couldn't help but laugh because I couldn't believe the things coming out of his mouth. I needed someone like him to lighten the mood. I felt like he was like a dad-joking around with his daughter out of love not disrespect. He then said you might feel a little pressure and at that he punctured the needle through my stomach and started draining. He drained 2 liters of fluid off me. It was very tedious in that the fluid literally dripped out of this needle like an eye dropper. Jaekle said to one of his students "I need someone to turn on the golf game because this is taking to long and is bad for my ADD" Once completed he drained 5 lbs off me. He said he didn't want to do more for fear of inducing labor. He then at that point said now it's baby's turn.
This part is hard for me because my poor innocent baby laying so sweetly inside me, safe and sound had no clue this terrible sharp needle was about to prick her in her chest. This whole experience was a real eye opener that babies in our tummies are really "babies" and act like babies. They are not these mysteries beings that only turn into "baby" once they are born. Jaekle scanned for Alanna and said "ok I see my way in and baby is sleeping and won't see the needle coming". He took off the scanner and stuck the needle in a second time through my stomach. I closed my eyes and turned my head the other way. I didn't have it in me to see it on the ultrasound. I dreamed of the beach and sitting there looking at the ocean. I thought of waves crashing and the warm sun beating down on me. I needed something to keep my body still so I wouldn't jerk and make things worse for Alanna. Keith watched Alanna on the monitor the whole time. I felt this enormous intense pressure and I wanted to cry because I knew the needle had hit her. It was very evident. I could feel her tense up inside me. I didn't like it one bit but I had no choice. Keith said to me later he saw Alanna wake up and scrunch her body. Jaekle said" I got the fluid from the right side of the chest now I have to go back in for the left side". He stuck the needle back in and this time Alanna actually started to fight it on the ultrasound. She moved back and forth trying to get away. Jaekle took the needle out and started thinking of a plan to outsmart Alanna. He said "I hate when babies do this to me, but lucky for me I always outsmart them" With that he found a way and stuck it back in and drained her left chest. Afterwards he told his student to deliver the 2 liters of fluid down to the lab and have them run tests. He laughed and said "Oh those lab guys are going to love me now when they see these 2 liters." I will admit it was funny. Then Jaekle had me wheeled back to my room and said now we have to wait and see if the fluid comes back...
I will continue my story with the results of the test and what happened after the ultrasound. I hope this blog will be a good recap for Alanna. I'm trying to be as detailed as possible because I want Alanna to know her whole story as if she was right there. She needs to know it so she can feel how special she truly is to her family.
What's the Cause/What's the Plan?
As I entered my room my whole family was already in there waiting for me. My sister ran up with a bag full of goodies to keep me busy while I waited. She brought board games, magazines and the complete series of "Roseanne". My sister and I have a secret love for that sitcom and always watch it when we are feeling blue. I was not able to do anything but sit in my bed and stare out in space. So those games, books, etc sat untouched.. Then after a few minutes was a knock at the door and a voice saying "Jaekle here!" I said "come in". Jaekle saw the crowd in my room and said "What's this? A party?" Keith's brother said "Yeah it's a party" Jaekle replied "I'll go make some Margarita's". Once again he put a smile on my face during this tough time. Jaekle pulled up a rocking chair started rocking and made himself right at home with everyone. It was as if we were sitting together as one big family mingling during a holiday get-together. Jaekle said "So what are your questions? Everyone please ask me questions." I said "What's the plan". Jaekle said "You are going to stay at this hospital until the baby is born. You are not to leave and our goal is to keep that baby inside you and fight off the fluid for as long as possible. The longer we can keep your baby in the greater the chances of survival." He then said "We are working to find out the cause of all this. If we can find a cause for the hydrops then we have a greater chance of treating this." He went on to say that there is a whole page of causes and questioned me. He brought up my job and asked me since I work at Children's if I've been around any sick kids. "I said yes some kids have seen me who have been sick. parents bring in their kids who are sick but I have not been sick my whole pregnancy." Jaekle's face dropped and he said "Hydrops can be caused from a virus that has crossed over to the placenta. If any kid was sick it could have infected your baby." They were planning on running tests to see if this was the case. I then tried to think back on all the things I did pregnant that might have been potentially bad... I said "I drank Crystal Light" He laughed and said "that is fine." I mentioned I had eaten deli meat but only a few times. He said "well this might keep me up at night worried." He was serious. He said the bacteria in lunch meat could've caused this. He also went into my family history, if I had anemia, diabetes, etc. There were going to be lots of tests run on me throughout my stay. After we asked questions he left and then someone was sent in to take 20 viles of blood. I have never seen so many tubes. They were running test after test. Test for diabetes, anemia, genetics, viral, turners syndrome, downs syndrome, etc..... I was told I would get results from diabetes, anemia in a few days, genetics a week or longer, syndromes were unknown how long it would take for results. I just had to sit and wait. It was the waiting game from hell. I was also told some of these causes could indicate a positive or terrible prognosis for Alanna. For example if it was anemia it could be treated, viral could be fatal or treatable with antibotics if it was a combination of a few then definatley fatal. It was pure mental torture. I felt like my mind was in a "Saw" movie. It was just so evil to put this sort of mental anxiety on a pregnant mother who almost has a full term and what she thought to be a healthly baby. The battle continues. Still no end or answers and hoping to dodge these bullets of bad news.
Long Night
That night I did not sleep at all. How could I? I was hooked to so many monitors everytime I moved something would come undone and beep and a nurse would come in. The only thing that brought me comfort was Alanna's heart monitor. All night long I stared at the screen reading her heartbeat It was always around 130/140, so stable. I would listen to the beat and the beating was the most soothing sound. Alanna hated the monitor. She would kick it off my tummy each time the nurse would put it on. I found it funny and kept thinking "how can she be so sick". Look at her wonderful heartbeat, such a strong kick. My baby is so strong. I kept thinking over and over how strong she was but then I would have to hear doctors keep reminding me of how sick she was. It didn't make sense. I learned a lot about Alanna through the heart monitor. I learned that her and I were almost acting as one. When I would get upset her heart rate would rise, when I was hungry it would rise again when I would laugh and be happy her heart rate stayed stable. I felt this strong bond that was unlike anything I have ever felt. I loved her so much and could feel how much my feelings impacted her and how much she impacted me. This ended up being my late night pattern with her. Her heartbeat was my security blanket of comfort. As long as I have that I still have hope. I also decided that first night to become a human incubator. My body was all for Alanna not me. I turned my feelings off and decided to try to keep as calm as possible to keep her stable. I checked out.... I did decide the next day to finally let people know on facebook. I thought that reading comments while I was in bed would help get me through my days. Reading all the nice messages, prayers and words of comfort got me through the long days of waiting. I also had visitors coming at all hours. Everyone stepped up to the plate put their own priorities on hold to be with me. I felt so much love from people. It was so powerful. I truly saw the eyes of God through each visitor. This situation enhanced my friendships, created new friends, brought my families closer and proved that true unconditional love and compassion for others is the only thing that truly brings peace.
I will continue my blog with the the second ultrasound and stories of love. Eventually I want to open up about how I truly met our Lord and not in heaven but the hospital. I have so many stories of our Lord carrying me without me asking. It has renewed my faith. I feel so close to his spirit that thinking about church and going gets me emotional. I know it sounds crazy but it's true. I have a everlasting channel to his peace. To be continued....
PART 3
Updated 11/10/12
July 17th Ultrasound Number 2!!
Just to re-cap Dr. Jaekle drained my belly of 5lbs of fluid and also drained Alanna's chest of fluid during the first ultrasound. This ultrasound number 2 is suppose to determine if the fluid stayed away or came back.
The ultrasound tech came into my room and wheeled me down to the ultrasound to check on baby's status. Once she put the scanner on my belly it was evident the fluid came back. Dr. Jaekle came in and said yes the fluid came back. I was so discouraged and kept asking what that meant. He said he was going to do another procedure where he drained more fluid off of me and also Alanna. He thinks at this point there might be a leak or blockage in Alanna's lympatic system because the fluid came back. The problem is we don't know why her body keeps leaking fluid. During this ultrasound I found it interesting that Keith was asking Dr. Jaekle if Alanna would look normal when she is born. I kept thinking "what type of question is that?..." Little did I know that Keith had been googling "hydrops" and looking at all these images of babies born with the condition. I kept away from the computer because I didn't want to read about it. I just wanted to be carried in the arms of God and not let pictures or articles influence my mindset. Dr. Jaekle said that Alanna would have significant swelling but look like a "normal" baby, just bigger. This made Keith and I feel better but looking back I never realized how scared my husband must've been. He looked at terrifying images and never once told me or vented to me his fears after seeing the photos. I didn't end up looking up the images until weeks later... This incident really made me look up to Keith even more and see the strength of the man I married. I don't think I could've been that strong but he was. Once again he was my rock through all this. He was like my sercurity blanket bringing me comfort. The next day I was drained of more fluid. I had to endure my baby feeling the pain of needles again also...
Reflecting and God Revealing True Unconditional Love and Kindness from Others
After the second procedure I was a mess!! I was not getting much hope from any of the doctors. I had visitors coming all day long which was so helpful. It kept my mind off everything and helped me survivie my days. These days were my lowest or at least I thought.... I would experience overwhelming waves of grief where I would cry and moments of feeling love and peace like I had never felt before. It's amazing how God can make ashes disappear while your literally standing in the fire. I was also feeling so much love for others, more than ever. I realized that no matter what we feel about the people in our lives that people are truly good. Sometimes we have to take the bad with the good but good always wins in the end. I had so many friends and family who really stepped up. Keith was by my side every second. His parents had Liam living at their house and I know it had to of been difficult because Keith's mom works from home and his father has health issues of his own. They never once complained and kept a smile on their faces the whole time. Keith's brother and sister came over all the time to hang out for hours and would help his parents with Liam. Keith worked from my hospital room with his laptop but eventually he had to leave overnight during the week because Liam had school. We had to find a way to make life normal for Liam. My sister dropped everything and spent the night with me in the hosptial. She was there daily. We layed together and told funny stories and watched Roseanne. It was such a special bonding time. She brought her work clothes and took a shower in the yucky hospital bathroom and slept on the mini plastic couch just so I wouldn't be alone.She is a true saint on this Earth. My mom worked from my hosptial room. She sat right next to my bed all day long with her laptop making sure she was there for my every need and left late at night. We had neighbors taking care of our yard and a group of them even mulched our whole landscaping because Keith had ordered mulch and forgot about it. I had a special neighbor friend get all the other neighbors together to plan meals. All of them took turns planning to bring a meal down to the hospital and offering to watch Liam anytime. I had wonderful friends who had been through similar situations come down almost every day and show me support and love. I had the same special friend who coordinated meals call me in the early morning hours and talk to me for awhile because she knew I was alone in the hosptial and kept me company until Keith was able to come back to the hospital at 8:30am from dropping Liam off at school. (I'm crying now thinking of this because I'm feeling overwhelmed with love). She would also come multiple times during the week giving me so much love and sit at my bed and hold my hand showing me the most loving comfort. Friends and family were dropping off games, books, candy and tons more stuff. I had friends calling and praying with me and giving me words of encouragement. I was getting so many messages on facebook, text and phone calls.
God worked through others to give me the strength I needed so I didn't crumble completely. I truly saw God work through people, The feeling of love I felt surpassed any wonderful feeling in life I've ever felt. I never thought of myself as worthly of such kindness because I admit I'm not perfect. I can be negative, I can get annyoed with people, gossip, I can complain and feel down in the dumps so I never thought people would care about me to this extent. I learned that God thought I was special and he sent others to prove that to me. I "do" matter in his eyes. I needed this support so much. I will never forget all of you who were there for me. I look at you with the most positive image, love and think you are the most wonderful beings ever. I will always have a special place in my heart for the kindness.
With all that said.... it brings me back to having strange irrational thoughts about Alanna and God also. I kept thinking maybe this is happening because God is teaching me a lesson to be a better person. If it wasn't for Alanna I would've never had my eyes open to this kind of love and peace I'm experiencing. I would get angry at these thoughts and think please God don't send this beautiful innocent baby into a world where she only knows my womb and a needle. Don't take her away from me because I sinned somewhere terribly and now need to be taught a lesson. I know this thinking is awful but that is how I felt at the time. One day all my feelings changed and this is wrong thinking I know but can't help it!! I looked at my husband who I think nothing but positive thoughts and he is genuinally a good person who does not need these lessons. I thought God isn't taking Alanna away from just me, he is taking her away from Keith too! Keith doesn't need to be taught these lessons because he doesn't have flaws the way I do. There has to be another reason this is happening. I still don't know to this day why this happened to me but I do know my feelings of peace, love and gratitiude and only seeing the good in others has stayed.
I will continue my story with the 3rd ultrasound and it's quite devasting so I need to preserve my energy and focus to write the next chapter in my story. I have many stories of God and feeling his peace and him communicating to me. I hope my stories of God will inspire you to appreicate your blessings and not to focus on the small stuff. I had to be thrown into the fire to learn these lessons but I hope that I can somehow communicate God's message and love to you all and spread my peace. Lots of love.
Update 11/17/12
3rd Ultrasound: Not again!!
I was the medical mystery case at the hospital. Still no answers as to why Hydrops was happening. Attending physicians and residents were meeting every morning doing rounds on my case. I was getting students left and right coming into my room interviewing me and asking me questions. I had to laugh at one resident doctor because she was trying to track down my 20 week ultrasound from my OBGYN practice. I later asked Dr. Jaekle why they are looking for my 20 week ultrasound and he admited one of those residents were put to work as sort of a punshiment for not knowing answers regarding my case during morning rounds. This made me laugh. I felt like I literally was on a an episode of "Grey's Anatomy" with all these residents and adventures I was encountering each day.
Monday June 18th, it's time for my 3rd ultrasound to check if the 2nd fluid drainage stayed clear. Here comes the ultrasound tech again! I'm gettting used to this routine with getting wheeled to and from my room to the ultrasound room. She brings me in and starts scanning my belly. I know if there's fluid again Dr. Jaekle mentioned he would do a shunt surgery on Alanna while she was in my belly. He would insert a shunt into her chest that would keep the fluid coming out. I knew something wasn't right in the ultrasound again because once again crickets.... no words of hope or encouragement just pure silence. My stomach feels sick! (I think I'm going to be forever aversed to ultrasounds after these horrendous experiences). The tech takes a bunch of pictures and then prints them out and silently hands them to me to take to my room. I immediately hand the pictures to my husband who looks at them and smiles. I felt like this lady handing me pictures was a cruel action. I've been told my baby has little hope but here you go here are a bunch of pictures of your baby who looks perfect on the ultrasound. I was afraid looking at these pictures would only make losing her harder :(
So once again mommy's intuition is right. I arrived in my room I could fill my stomach tensing up and it even felt bigger which told me fluid came back. I kept telling Keith I have a bad feeling about this. He gave me words of encouragement telling me it was all ok. Then there was a knock on the door... "Jaekle here!" Dr. Jaekle and his resident Dr. Regan both walked in. Dr. Jaekle immediately said "Well Nikki, I'm about to rock your world". I said "why?". He said "We are going to deliver you tomorrow" I stared in shock. I couldn't even cry until he said these words.... "The fluid came back again and this time it's spreading to her stomach. We don't know why this is happening and we consulted Children's neonatal team and they feel she would have a better chance if we get her out and work on her." Then the tears started pouring. I was shaking uncontrollably because I never felt such fear in my life. I was told keeping her in was the best option now I'm told she has to come out. I then asked the dreaded question ... "What are her chances at this point" Dr. Jaekle said less than 40% at this point. I started crying more. Dr. Regan his resident who had been working with me also came by my bed and started tearing up. She said "I'm so sorry this is happening to you. You are such a nice person and don't deserve this." I just cried and cried. They told me the Children's hosptial neonatologists who would be there at delivery would come and talk beforehand about what to expect at delivery.
I had some visitors waiting to see me and I kept turning people away left and right. I was too devasted to see anyone. My family came and all sat in my room to give me support. One of my special friends who I said not to come came anyway and it was a good thing. She brought me the comfort I needed and it was so helpful.
Dr. Ward and her fellow Dr. Wiles the neonatologists finally arrived that evening and said "What questions do you have?". They had grim looks on their faces. I asked "How bad is she?" They said "She is very sick. I'm so sorry." They said "She will be really swollen, she won't cry when she comes out and we will have to take her immediately to start working on her." They didn't give me much hope or information because they didn't know why this was happening to my baby so they had no answers. I just cried and cried and cried....... They asked me if I had any other questions and I just said "I'm ready for my sleeping medicine." (The nurse prior to them coming said she could give me a pill that would help relax and get me to sleep).... I just wanted someone to knock me out and wake me up when this was over.....
The nurse came in and said she was going to remove all my monitors so I can be comfortable while I slept before my c-section. I said "no" I want Alanna's heart monitor connected to me. I've been wearing it for over a week and was not ready to stop listening to that beautiful heartbeat which was still so strong. Dr. Jaekle sent a resident in to give me one more ultrasound so they could check the baby one last time before I deliver. She came into my room and started scanning my belly. Once again crickets.... She clearly was having trouble finding what she needed or saw something terrible. I will never know... All I know she was frantically scanning around and then looked at me and said "I'lll be right back I have to use the restroom." I looked at Keith and my mom and we actually started to laugh. I couldn't believe she just said that!! Then a minute later she came back with another resident doctor and they both were working together to find whatever it was they were suppose to find. They both eventually left and a it was starting to get late. I knew I wouldn't be able to sleep due to my nerves. I was shaking uncontrollably in my bed with cold chills of fear after hearing all this news... I still couldn't sleep even with the meds... If you are wondering what a mother does the night before she fears her baby's death which also feels like her own death, well here it is. At least in my case...
I layed in my bed and continued to shake. I read Psalm 97 in my bible and held onto a special rosary my sister gave me. I begged God to please save my Alanna. I promised to be a better person from this day on. Nothing else in life mattered. All I wanted was my baby. Career, money, shopping, vacations, hobbies, etc meant nothing to me. I would've given up everything in my life that brought me joy just to have her be ok. As I started to close my eyes I sang the "Prayer of St. Francis" over and over in my head until it was time to wake up the next morning..
The next part of this blog with lead into my delivery and what it's like being a mommy without your baby with you but in the NICU.
Updated 11/29/12
June 19th Delivery "Best and Worst Day of My Life"
It was 6:00am and a sweet nurse entered my room telling me it's time to get up and shower before my c-section. I was still laying on my bed holding my rosary and shaking with my bible wrapped in my arms as if it were my teddy bear. I felt so numb and lifeless. I kept thinking how am I strong enough to do this? There is no way I can handle what is about to happen to me... I was absolutely terrified. The nurse handed me a special soap to use to sterlize my body while I took a shower. I felt like I was in a nightmare. Like I was washing myself in preparation for death. Alanna had a strong heartbeat all night and I felt her move and I kept thinking this can't be the end. Eventually another nurse came into my room with a wheelchair ready to take me to labor and delivery.
I entered the room where they started getting me ready. Keith stayed next to my side. My sister and mom came in and I could tell they had been crying but were trying so hard to stay strong for me. I lay on the bed shaking with fear. I forgot my rosary after my shower and my sister searched through my bags and found it. She handed it to me and I just laid quivering and quivering. Finally they told Keith to leave and get his scrubs on and I was going to be wheeled into surgery. I entered surgery and they gave me my shot and I laid down. I had never seen so many medical professionals in one room! I had Dr. Jaekle the fetal medicine doctor with a resident getting ready to drain my belly again and Alanna's chest again before surgery. I had the obgyn doctor ready to perform the c-section and the anesthesiologist, neonatolgist teams from Children's waiting behind a glass window and lots of others.
Keith finally came into surgery after the amniocentesis and thoracocentesis procedures (fluid drainage of Alanna and I) were complete. I still held tightly to my rosary and waited for what God had in store for me. Well what he had in store was nothing more than a pure miracle!! Only God can only turn your worst day into your best day. He made ashes from the fire disappear and brought me sunshine. I was told my Alanna would not cry from all the fluid in her chest but God had a different plan. I knew that Alanna had entered the world because at 9:11am I heard a cry! As I heard the sound I looked at Keith and said "did she just cry?" He looked into my eyes with a glowing joy and said "yes". They quickly grabbed her and showed her to me for a second. I got to give her a kiss and then she was gone like that! Just one quick kiss and then it was just Keith and I alone with the dr's. I was scared for Alanna. When I saw her the first thing I noticed was her color. She was dark purple, her eyes swollen shut but mouth moving. Her ears looked like cauliflower because she was so swollen. I knew she looked sick and her features were dimorphic from fluid but to me she looked perfect and beautiful. All I wanted was to hold her and take her home and I didn't care if she had cauliflower ears for the rest of her life. I just wanted her.
Another interesting thing is somehow Keith's dad felt her presence and cry even though he was not in the room. Once again I feel it was God sending others a message she was ok. Keith's dad was so scared for us as was everyone else. The whole time we were in surgery he waited next to the double doors leading to surgery leaning on his cane crying. Keith's father is a very deep, loving man and at 9:15am he said he looked up and his tears were gone and he felt peace. He somehow knew at that point Alanna was here. He said to our whole family "Alanna is here and is ok" Within minutes after him saying those words Keith walked down the hallway and looked through the window of the double doors giving a thumbs up sign to everyone. Everyone just fell to the ground with tearful joy. It was the most wonderful moment. My sister also reported that around the same time as Keith's dad she had a calm peaceful feeling overcome her telling her it will all be ok.
Anyway back to my c-section and what happened next.... Dr. Jaekle came back to me from going to check on Alanna and I asked how is she? Dr. Jaekle responded "Well I went in to check on her and there are a bunch on people just standing around and only a few people working on her so I would say that's a good sign." Those words were pure music to my soul. I knew Alanna was still very sick and not out of the woods but hearing anything remotely positive was all I needed to fuel my spirit.
Dr. Ward the attending neonatologist after a few hours of my recovery came to speak with me. She smiled and said Alanna did better than they thought at delivery and that made me happy to hear. Then her face got grim and she said "She is still very very sick and we are going to be working on her to stablize her levels. She has large amounts of fluid in her chest and is very swollen. These first 3 days in the NICU are going to be the most crucial and I'm going to let you know it's going to be a roller coaster ride for awhile." I then started to cry because I was reminded of how sick and critical Alanna was and once again I'm going to be put through an emotional roller coaster of can she come home or is she not coming home? It was pure torture...
I was in the hospital for 4 days after delivery. Things are different when you have a baby in the NICU. You don't have your baby with you in or even near your room. You don't have photographers, birth certificate people, etc constantly coming in to talk about your baby. Your visitors don't get to come and see you with your baby in your room. They have to be escorted into the NICU with either Keith or I one at a time. You have to spend time at the cleaning center sterilizing your hands and you have to sign in and get a bracelet before you can even enter Alanna's suite. Once you see her all you can do is look and maybe touch her for a few seconds.
The NICU is an interesting place.... To me I describe it as a portal between earth and heaven. I always felt like I was so close to God when I would enter and be surrounded by all the innocent babies fighting for their lives. I felt this sense of warmth and peace as I would pass by each crib seeing the smallest babies I never knew could even exist. The nurses were all so incredibly nice and loving. You could tell they absolutely had a passion for babies and truly cared. Alanna had a one on one nurse on duty for her 24/7. They would literally stand over her clear bassinet all day long attending to her every need. It made me feel better knowing someone with knowledge on how to help her was with her at every moment. I was dreading the fact I had to get on this horrible roller coaster ride with tons of ups and downs. Dr. Jaekel gave me some interesting NICU facts. He said the first 72 hours usually set the stage for the journey. Basically if Alanna does good these first 3 days we can expect the progress to most likely continue if not we are going to be stuck on this horrible roller coaster.
I will stop now. My next section will talk about leaving Alanna and NICU life and more miracles in the making. I am very anxious to write these next parts as this special time with Alanna in the NICU was purely life changing. I am totally transformed.
Updated 12/15/12
NICU our new way of life
Before I talk about what it was like leaving Alanna in the hospital I'm feeling compelled to write about my hospital stay after Alanna's birth. I was in the hospital for 4 more days after Alanna's birth before I was discharged. Each day Keith and I would go to the NICU to visit Alanna. This was very difficult for me for a few reasons. 1: It was incredibly difficult to see her laying with all the tubes and thinking are these things really helping her or is she suffering? 2: Hearing the dr's and nurses telling me things like "she doing fairly well...." 3. No one telling me when she can come home because no one knows if she will actually be able to come home. I would not dare ever ask the question of when she was coming home because I didn't want to hear their answer 4. Recovering from a c-section and for those of you who have been through a c-section it is incredibly hard to get up and down from your bed. Keith would set an alarm and get up every morning at 7:30 am to make it to the NICU in time for dr's rounds. Each morning around 8:00-8:30 dr's would do rounds arond Alanna's crib talking about her plan for the day and how treatments were going. This was so stressful for me and I couldn't bear to go. I was to fearful of anything negative they would say. Keith was my rock and he would strongly get up each morning and bring his camera like a proud father taking pictures of her while dr's did their rounds. This was our routine each morning. While Keith was up there I would sit in fear not knowing what would be said. Each night in the hospital before Keith and I would go to bed we would go up to the NICU around 10:30-11:00pm and say goodnight to Alanna. It was the best part of my day being there with Keith and knowing that Alanna completed another day of life.
Time to go HOME-Nikki!
Well this part of my story is another big milestone. I get to finally leave the hospital and go home. I did not want to leave. I wanted to stay in my protected bubble of being in my hospital room and have Alanna under the same roof. I was not ready to go on with life like it was normal when my life was anything but normal. I remember that day so well. Alanna was not doing well that day. Her x-rays did not look good and the dr's didn't know why. I just cried and cried. I was not ready to leave especially when she was like this. I wish I could comprehend what they told me specifically but I was in a complete daze and couldn't grasph any detail of her condition. My sister came to give me moral support and help me pack. Keith and I went to the NICU I layed over Alanna who still was intubated and was obviously still fighting for her life. Her little chest was moving up and down so fast and I had to tell her good-bye. The nurses reassured me that she would be loved and be in good care. They also gave me a card with a special password and number that I could call at any hour and get updates.
It was offically time to leave. My sister wheeled me out of my room and Keith pulled the car around. This is so much different than with Liam. The last time I did this I got to carry my baby boy in my arms and Keith wheeled me out. This time it was just me.... The second I entered the car I felt numb all over. As we got on the highway to pick up Liam from Keith's parents house I had a meltdown. I started crying, screaming I was so mad. I'm embarassed to admit this but I feel I was so emotionally flooded that I had to explode. After we picked up Liam I got home and just felt like a zombie. I hated my house, I hated that I was home and I hated that I had to wake up the next day and act normal. I felt so sick and icky all over. Keith went back to the hospital that night which made me feel better. Keith also was the one to call the nurses and check up on Alanna because I wans't emotionally able to handle any bad news. Liam continued to attend Primrose so I could recover. All I did all day was sleep in my bed and cry for my baby. It was a very difficult time. I would look at the card with the nurse's number and my password and feel hesitant to call because I was scared of what I would be told. One night Keith must've sensed that I wanted to know about Alanna all the time but was afraid to call. He said "Nikki why don't you call tonight?" I said "I can't. I'm to scared" Keith said "I think you should do it. Just give them a call. It will be ok." So I did and to my surprise it was ok. The nurse was so nice and reassuring. She told me Alanna was having an uneventful day and that they all love her. I felt so good about the call from that day on I was making all the calls and taking charge. It gave me a lift and stength to go on.
The NICU became our new life. In the mornings I would go there, at lunch Keith would go and meet me, my mom would go in the afternoon's and then Keith and I or one of us would go again at night. It was literally a new way of life. I would have family and friends watch Liam while I went in the mornings and I would always take one morning a week when it was just Liam and I doing something special together. That was the hardest time.. It was hard going out to the world seeing others with new babies and just seeing people in general who would look at me and no nothing about what was going on. I would walk around and think "no one knows that I'm in a battle.. No one knows that I have a baby... No one knows that I'm so sad..." It was the weirdest feeling but really puts life into perspective. You don't really know others stories. Things don't always appear as they seem.
My mornings at the NICU started feeling so special. Alanna was doing better each day. All the sudden the dr's were reporting her chest x-rays were looking better than ever! They said her fluid is draining. They couldn't tell me why but just that they were happy and hopeful! - another MIRACLE. No explanation! All I can think of is that it was the work of God if doctors don't have answers. My Alanna was starting to respond to my voice. She had a little smile come through even with the large intubation tube. Her smile, the way she would open her eyes, all these little milestones were pure gifts for me. The Lord allowed me to savor and he made it clear the sacredness of each little skill these babies have that I always took for granted with Liam. Keith and I grew closer as a result of this as well.
NICU and Marriage and God
Through such a troubling experience our Lord provided me with many unexpected gifts along the way. Being at the NICU had it's positive points. I got to see Keith everyday for lunch and in the mornings. He would always meet me there and sit with me in the mornings. We would both lean over each side of Alanna and talk to her, talk to the nurses and just talk to each other. We would go to lunch together just us 2 and be able to talk about Alanna. It was very therapeutic. I fell in love all over again with my wonderful husband. He was always there for me. He didn't have to meet me there in the mornings but he did. Keith and I would spend our weekends and Saturday nights at the NICU. Liam would stay at his grandparents for the weekend and Keith and I would spend our days by Alanna's side. We would play iPad games, get visitors, bond with the nurses and doctors. We would also go out to dinner every Saturday night and then afterwards around 9:00pm head back down to the NICU. Yes you know your officially a parent and no longer college cool when your Saturday nights involve hanging out in the hospital with nurses and doctors. I will say the Univeristy emergency room was a great people watching place where there was also some crazy action. The University was an interesting place. Keith and I would have to be police escorted to get to Alanna's NICU on Saturday nights.
God found me and wrapped me in Peace and Love
A good friend once told me that the key to channeling in our Lord is "thankfulness" I truly believe this statement because let me tell you as Alanna's progress started improving each day I felt such a powerful sense of thankfulness. I was feeling blessed, grateful and full of peace. Alanna wasn't out of the woods but each little milestone was an out of this world experience. It was then when I felt the Lord. He came to me and stayed with me and is still here with me. Feeling the Lord is like getting a warm rush of happiness. You feel completely at peace and so relaxed. You feel nothing but pure love for others, the world and your life. This is how I felt whenever Alanna would do well. Then the Lord actually came to me and I will tell you how... He came to me in many ways through people, tv, scripture, written notes and gifts. It was truly as if I channeled in his spirit, like someone who has channeled in a ghost. I know that's a weird comparison but it's how I felt.
1. The first time he came I was praying and journaling my experience. One night when I was journaling I was watching "Shallow Hal" yes I know weird but it was on Oxygen around 8:00. After the movie all the sudden a minister popped on the t.v. and said "The power of prayer works..." It then got even more strange. They started showing parents of sick children and how those children got better. Keith then walked into the room and said "Nikki what are you watching? What did you turn on?" I said "Keith I didn't turn this on it came to me..." It was very weird.... Once again I felt so thankful like the Lord is real and is here for me.
2. There was another day I was having a low day and feeling sad. I opened the fridge and when I closed it I saw written on Liam's artwork calendar in pen "Find the joy in the day." I'm sure it might have always been there but this was the first time it popped up at me and I noticed. The calendar had been on the fridge for awhile. It gave me chills which told me it was a message. I followed that message. It was like now I have channeled in our Lord and he is making it impossible for me not to feel thankful...Whenever I was feeling down he would bring me back up with some sort of sign.
3. Another experience happened after I made a post on facebook about feeling happy for Alanna's progress at being 2 months old but being sad at the same time that she wasn't home with me. God must've heard me because the second I walked into the NICU after writing that post a nurse came up to me telling me a family near Alanna was losing their baby and there is a priest and lots of people around and they might ask me to leave. I started tearing up and dropped my head down next to Alanna. I saw Alanna looking more healthy and I just started to pray for that family and once again God gave me the feeling of thankfullness of my Alanna's healing rather than sorrow for not having her home.
4. I have a dear friend who is a prayer warrior and has a true gift with prayer. She came down to the NICU one night with me and prayed over my sweet Alanna. She said she saw visions of Alanna being wrapped in the hands of God. It was like an energy. She prayed for Alanna's healing and told me she felt peace with Alanna like God was protecting her. I interpreted it as she was no longer in my womb where she should but but God was carrying her through and healing her since my body could not. It was the very next morning after prayer that I walked into the NICU and a nurse came running up to me. I panicked because I thought she was going to tell me terrible news. She said "Nikki Alanna is ready to feed from a bottle today with special formula." I was caught completely off guard because it was not in her schedule to start feeds that early. I guess it was in God's plan to have her start. He demonstrated the power of prayer and all things are left in his hands. I was over the moon. I just cried and told the nurse how my friend came and prayed on Alanna and the nurse started to tear up and said "Alanna is truly a miracle"
5. There was another time I entered the NICU and saw the cutest outfit hanging on Alanna's crib. It was an outfit in her size and one that I was wanting to get for her. It was a onsie set with legging pants. The mystery is no one knows how it got there. I asked everyone who is on our list of allowed visitors and no one got it for her. I asked the nurse if it was put there by mistake and she said "No. We would not put an brand new outfit on Alanna's crib by mistake. It's a gift for her". She only had one baby next to her and that baby was a lot smaller so the outfit wasn't that babies size. To this day I look at it as a gift sent from God. Yes I'm sure some human being put it there but I feel God was acting through whoever that person was.
6. Another gift from God was the day I got to finally nurse Alanna. I was very skeptical of this because my son never took to nursing and he was born perfectly healthy. I thought for sure Alanna would struggle because she had already violated every breastfeeding rule in the book. On top of that she was weak and sick so I thought for sure I would not get this opportunity once again. Alanna had already been given a binky, special formula through a bottle nipple and was used to NG tubes, etc. Well once again God said trust in me. Through me all things are possible. The lactation consultant was there for the first feed. I did as I was told with Alanna. She latched right on and was a champ. The lactation consultant was so surprised. She said "She is going to be a really good breastfeeder. She has a great latch." I started crying with tears of joy because I longed for such an expereince with my baby.
7. Another act from God came as the form of another gift. It was getting close to the time Alanna was going to be discharged. She was scheduled to get pictures taken at our house. I was driving all over trying to find a dress for her. I had no luck. I was so discouraged.... I remember after an afternoon of shopping with Liam I pulled my car up the driveway and on my front porch was a box. I thought that is strange.... I brought the box inside and opened it up. Inside the box I kid you not were the most beautiful baby clothes. One being a blue dress. It's the dress she is wearing in our family photo. It was send by a family friend. I swear God works through people and people don't even realize it. I was blown away.
I see each day now as a gift from God. Looking at Alanna is a constant reminder that there is a God and he is real. He works actively through my life and I know he works through everyone's as well. You just have to take the time to see his work at hand. Alanna is my proof. She is my closest link to God. When I see her, hold her, talk to her I feel that same feeling of peace, warm and love. The interesting thing about Alanna is her name means "peace" This is so true in that she has brought my life peace. Her name also mean's "God's breath" She took breath from God the day she was born. Alanna is truly a miracle and her name says it all. God is real and true. As I'm writing this right sign number 8: "Hallelujah" started playing on my Pandora and I'm not listening to a religious station. I'm listening to classical. How suiting. I'm going to end this blog with goosebumps, a tear of joy and leave you with this. Hallelujah praise the Lord! Thank you dear Lord. Through him all things are possible. Amen
May 25th The day I believe Hydrops Started with Alanna
I walked into my mom's house and the first thing my mom says is "Wow Nikki you look really big". "Thanks mom I replied" and went running upstairs to cry. I felt terrible that day and unusually huge that day of my sister's wedding and the last thing I wanted to hear was someone else bring it to my attention. I didn't think anything of this until each day from here on out I started gaining pound after pound... Something doesn't seem right...
I tell my doctor that I feel really huge and at this point I'm 31 weeks pregnant. The doctor assured me I was not to big and was normal. Then the pains started to come. My stomach felt like a rock all day long and I felt terrible pains in my stomach constantly. It really felt like contractions! I told the doctor this and they once again assured me I was normal and that the second baby is always harder and to expect Braxton Hicks to occur more often.
June 5th: Nikki the Pest and Girl who Can't handle normal Pregnancy Pains!!
Here I am being a pest and calling the dr again!! This time I was crying and said I'm feeling pains every minute and not feeling the baby move. The doctor told me to go to Christ in Labor and delivery. I was put on monitors and told the baby and I were fine. I was sent home. This cycle happened a few more times in and out of the hospital. One time the doctor looked at me and said "Honey I had 4 boys and it sucked having these Braxton Hicks but I just toughened up and got through it." At that second I wanted to throw my cell phone at her face and scream at her. All I could do was cry and tell her "something just doesn't feel right". She looked at me and said "well maybe something else is going on." I said "yes there is!" I was then sent home....
June 11th Doctor Finally Makes a Good Call
"Nikki were going to your doctor! I'm going to drive you. Let's go" Those were the words of my wonderful supervisor at Children's. She saw me struggling all day and saw the tears I was shedding in my office. The Lord must've called her to help me because I was trying so hard to be tough and get through the pains. I was told to toughen up so that's what I was doing. When I got to the doctor he ordered me an ultrasound and sent me to Christ because he said I was having contractions. He also told me I had a good size baby in me. I laughed thinking "wow I have a big healthy baby causing me pain." Little did I know I had a baby growing inside me being filled with lymphatic fluid flooding her chest and invading her body. Fatal fluid that kills 80% of babies who get this condition. This fluid was also invading my body as well which is why I was huge.
June 13th Ultrasound of Terror!!
So here's the day of my ultrasound. The ultrasound that still haunts and makes me feel ill to this day! I'm feeling sick now writing about it. I know it will help me in the long run. Here I go...Keith and I walk into the room and I'm so happy to see my baby girl again. The baby girl I so longed to have and have a room full of pinterest crafts and décor I have been pouring my love and heart into. A room with the name Alanna on the wall with colorful scrapbook paper designs. A room with a custom closet organizer that my husband slaved over filled with clothes that I've been collecting. A room with a wall of painted stencil that Keith spent 4 hours pouring his love into so she can have a room that will suit a princess. All my ultrasounds have been such a joyous experience with the techs laughing smiling and telling me how perfect everything looks. Well you know things are not perfect when you have a tech that puts the apparatus on your belly and immediately turns white and silent. She looks at me and says " You will need a level 2 ultrasound". There is a lot of fluid all over your baby and in her chest". She then says "Do you want me to just stop?" I said "Is this bad? What does this mean? What is wrong with my baby". All the tech could say were those famous words that doctors seem to like "I'm so sorry. She then said "I can't say anything the doctor will have to talk to you." She gave me a box of tissues and cup of water and once again said "I'm so sorry" as I walked out the door. All I could do was cry and cry and my wonderful husband who is so positive stayed strong didn't shed a tear. He looked into my eyes so lovingly and said "Nikki everything will be ok". We then drove to Christ again... I was in complete disbelief.... Little did I know the worse was yet to come.
I will end for now tonight. I will continue my story and also incorporate current Alanna updates and feelings. I'm feeling much better tonight. Thanks for going back in time and hearing part 1 of my journey. It will get more positive...bear with me..
Part 2
June 13th Doctor Smart A
This part of the story gets me really angry. I am so angry at my obgyn doctor who was on call that day in the hospital so I apologize in advanced for some harsh words and name calling.
Keith and I arrived at Christ. I don't remember getting out of the car or how I got to the room. All I remember is the elevator ride to the 9th floor and some nurse in the elevator saying " Congrats honey and good luck." How ironic this lady assumed I was heading up to deliver because I was so huge and looked like I was in pain. Yes I was so huge and in mental and physical pain but little did she know I was not in labor. I was heading up to for the verdict on my baby's condition. Is she ok or not ok? It just goes to show we go out in the world seeing other people but never really know their story.
I was admitted into a room and waited for what seemed like forever for the next step. I was expecting a level 2 ultrasound right away! The arrogant dr who I dislike from my obgyn practice came in with a smart ass smirk on his face. I'm going to call him Dr. Smart A (and you can guess what the A stands for) He looked at me and said "So why you here? You feeling pregnancy pains-hahah" He was trying to make a stupid joke. Not a good time for a joke! I looked at him and cried and said "Something is wrong. My ultrasound looked bad and they sent me here for a level 2. At the time my husband, being the problem solver or as I always call him Macguyer, was frantically on his cell phone googling "fluid in fetus chest". He found a condition called "hydrops". Keith asked Dr. Smart A if he thought our baby had hydrops. Dr. Smart A laughs and says "Hydrops is NOT a condition it's a term meaning fluid". He then tells me the ultrasound center is closed and I have to wait until tomorrow to get my level 2. I immediately start to lose my breath and the tears pour down. I think to myself "How am I going to wait all night for this news?". Keith notices how distraught I am and suggests we leave and go to University or Good Sam. Dr. Smart A says "You can do that but I wouldn't recommend University. I would recommend you stay here and be on monitor and he then he diagnosed me with severe constipation. He recommended enema's throughout the night. I know, I know... TMI... but really this was very traumatic for me. Who wants enema's when they are already feeling mentally and physically terrible. Looking back he could have done terrible damage. I was filled with fluid so why was he having nurses pump more fluid in me!?! Well that is why he earned his wonderful name of Dr. Smart A, S.S. I gave him S.S. credentials instead of M.D. (meaning So Stupid)! I'm still bitter if you can't tell but it's helping me.
June 14th Level 2 Ultrasound
I hope I can get these feelings out completely. This is one of the most traumatic experiences ever for me. This experience brought me to a complete out of body state. It was horrible, just terrible!!! Here I go... breath... here I go. I'm trying to do this but (pause...) I don't want to................ Ok the Lord is telling me I have to, will and can so here I go....
It was 8am and lucky me here comes Dr. Smart A who happens to be at the hospital still on duty. I am wheeled down to the ultraound and Dr. Smart A and the young tech are in there. I'm in such pain at this point laying on the table. I feel like a ton of bricks have been laid on my heart and I can hardly breath. I'm also terrified of what this sonogram will show. The whole time I'm expecting to get news and insights as they are scanning but nothing. It's literally like hearing crickets in there. Complete silence. Dr. Smart A just watches the sonagram screen with the same smart ass smirk. The tech is quickly scanning around and copying images and printing them off. Finally it's complete and I still know nothing. I have no clue! I just sit in my room and wait for someone to come in and say something.
Finally a female fetal medicine doctor comes in and sits down in a chair. Keith and I move and sit on the end of my hospital bed. She has a neutral smile on her face so I'm thinking to myself clearly she is going to tell me my baby is fine and the fluid reading was an error. I was hoping that would be the case but no. I was so very wrong. She looked at Keith and I and said "Well we all took a look at your ultrasound and I'm so sorry (those words again!!!) to tell you your baby is very sick." I said "What is wrong? What do you mean". The doctor said "She is very very sick. She has a condition called hydrops. It's very serious and you need to leave now and go to University Hospital. There is a specialist there who will deliver you today and I'm so sorry that your baby is so sick". I said "Are you trying to tell me my baby is going to die" The doctor said "This doesn't look good at all"
Ok................ I need a break now....................
She said "If we don't get your baby out now she will be a stillbirth by week 35.". At that point I look over at my strong, positive husband who never cries and is my rock. He was clearly crumbling. The tears rolled down his face. That was the moment I mentally left my body. It was like someone took a shot of Novocaine and injected it into my whole system. I felt nothing but pure shock. I kept thinking this isn't real!! There is no way! I passed my 20 week ultrasound, my baby has a strong heartbeat. I passed my 20 week ultrasound so this means I'm out of the woods. I was told by the female physician an ambulance from University would be on it's way to get me and bring me there. Keith and I just sat hugged each other and cried and cried....
This is enough emotional pouring for one night. I will continue Part 3 which is the ambulance ride and my meeting with the best doctor in the world Dr. Jaekle the fetal medicine expert in the city. He has a new plan but this plan was not at all what I expected. I never thought this next phase of my journey would ever happen to me. Thanks for your continued support and following of my story. It means more than you know.
June 14th Ambulance Adventure!
I finally get some quiet time to continue releasing my thoughts. I'm hoping Liam and Alanna stay asleep so I can get it all out. I have been dying to write more. It is helping me more than I ever thought. I'm going to write this part as best I can but honestly some parts I don't remember at all.
I do recall after receiving the bad news and waiting for the ambulance, I called my mom right away. I called her and cried saying "Mom it's not good at all. They told me my baby is very sick and will probably not make it." My mom without hesitation said " Nikki, I'm coming down there right now." I said "They are going to take me to University Hospital. I'm not going to be at Christ". She said "I'll be at University waiting for you." I couldn't do anything but cry and feel sick to my stomach. Keith and I just stared at the clock crying trying to make sense of what just happened. It took forever for the University people to come and get me. They finally arrived in my Christ hospital room with a large gurney and 3 transporters and all this equipment to connect to me to keep baby monitored. All I remember is sitting up real high on the gurney afraid I was going to fall. I also remember it was so uncomfortable laying flat down on my stomach strapped down because I had such an enormous amount of fluid pushing against my baby and organs. Everything felt like it was getting smashed. I was burning with pain. I remember the University transporters looking at me with such empathy it made me start to hyperventilate and couldn't catch my breath. I have never been so scared in my life. I didn't feel strong enough to handle what was happening to me. Keith held my hand and stayed right next to me. He would've rode on that gurney with me if he would've fit. As I was wheeled out of my room I saw Dr. Smart A S.S. waiting out my door. All he could do was look at me blanked faced. He just finished a delivery and had his blue scrubs on. He said "I'm so sorry" and that was it. I was wheeled away and remember thinking please don't take me away from Christ Hospital. This is where I had my baby Liam and everything was ok with him. This is the hospital where babies live. Please don't take me to University where my baby is going to die. I passed a room and saw a mommy holding her new baby it was that point I checked out of my mind completely. I don't remember anything at this point until we're outside and I'm getting lifted into the ambulance. The transporters said to Keith. "You can get your car and follow us to University." Keith said "No thanks I'm leaving the car here and will ride with Nikki.". Keith was told to sit in the front with the young driver. I sat in the back with 2 transporters. As they closed the doors the whole ambulance got dark. Everything shut off. I was thinking to myself "Oh great, now I'm going to be stuck in here so hot with no air conditioning, miserable and about to have a mental breakdown with Keith not right by me ." Later Keith told me the ambulance driver was a pretty cool fellow.... When the ambulance shut down the driver said to Keith "Hey man can you open that glove compartment and hand me that piece of paper." The driver then took a wire and performed a fuse by-pass. Keith was quite amused at the prompt way this guy was able to practically hot wire the ambulance and get me to University. In most cases I would've been freaking out this being my first impression of University Hospital but in this case I was desperate to get moving and didn't care what they did!
University Hospital and my Meeting with Dr. Jaekle-The fetal medicine physician
We arrived at the hospital and I don't remember where the ambulance parked or anything until the elevator opens on the 3rd floor Labor and Delivery. I see my whole family in the waiting room. My mom, sister and Keith's siblings. We had an entire crew waiting to support us. This was my first experience with true unconditional love and people literally dropping everything to support another person in need. I was wheeled into my room and my mom immediately pulled out angels, bibles, prayer books and a rosary, She said "Nikki I will be here for you. I know how you feel because I have been in your shoes when I lost your brother." She gave me a hug and held me tight. We all just sat around waiting to hear the next piece of news. I didn't know what this new doctor who was so highly recommended was going to say.
Then I hear the knock on the door. The door opens....
In walks Dr. Jaekle!! He looks like he's in his early 50's, big man with light brown hair. He reminded me more of a retired football player or sit around and watch the game kind of guy rather than fetal medicine doctor. I call him "The legend in his own mind" doctor. He always said quite frequently whenever I would ask him questions "Well Nikki... I am a legend in my own mind.." It always made me smile. Right when he walked in the room he said to me. " I took a look at your ultrasound and the worst thing to do would be deliver your baby now." She would have less than an 20% chance at this point if we delivered her premature.". I had no clue what was going to happen next..... Then Jaekle said " First I can tell you are in enormous pain and I can see you have excessive fluid. I'm going to drain fluid from you abdomen." He then said " Your baby has a lot of fluid in her chest. I'm going to drain her chest also."
After hearing all this I was completely confused. I asked "How are you going to drain me and my baby." He looked at me and smiled and said "using a needle I'll insert into your stomach and then a needle I will insert into your baby's chest. At that I was wheeled down the hall to the ultrasound room.
I entered the room and there were a few students with notebooks getting ready to watch me. Jaekle handed one of the students his cell phone and said "Here man you take this and if anyone calls answer for me." He then started opening cabinets trying to find needles. He was scrambling around and making a mess of everything. He called to a student to go to another room and fetch the bag of needles. I lay on the table and closed my eyes thinking... "Oh my goodness... This man is really going to insert needles in me and my baby! This is the most laid back display of medical professionalism I've ever seen for such a scary procedure." Then the needles came and Jaekle pulled them out of the bag. I kid you not these needles were the longest needles I've ever seen. He took a brown liquid and brushed it on my stomach. I asked him what that was and he said " Well it's my special baby worchestire sauce that I've developed and the babies have taken a liking to." I couldn't help but laugh because I couldn't believe the things coming out of his mouth. I needed someone like him to lighten the mood. I felt like he was like a dad-joking around with his daughter out of love not disrespect. He then said you might feel a little pressure and at that he punctured the needle through my stomach and started draining. He drained 2 liters of fluid off me. It was very tedious in that the fluid literally dripped out of this needle like an eye dropper. Jaekle said to one of his students "I need someone to turn on the golf game because this is taking to long and is bad for my ADD" Once completed he drained 5 lbs off me. He said he didn't want to do more for fear of inducing labor. He then at that point said now it's baby's turn.
This part is hard for me because my poor innocent baby laying so sweetly inside me, safe and sound had no clue this terrible sharp needle was about to prick her in her chest. This whole experience was a real eye opener that babies in our tummies are really "babies" and act like babies. They are not these mysteries beings that only turn into "baby" once they are born. Jaekle scanned for Alanna and said "ok I see my way in and baby is sleeping and won't see the needle coming". He took off the scanner and stuck the needle in a second time through my stomach. I closed my eyes and turned my head the other way. I didn't have it in me to see it on the ultrasound. I dreamed of the beach and sitting there looking at the ocean. I thought of waves crashing and the warm sun beating down on me. I needed something to keep my body still so I wouldn't jerk and make things worse for Alanna. Keith watched Alanna on the monitor the whole time. I felt this enormous intense pressure and I wanted to cry because I knew the needle had hit her. It was very evident. I could feel her tense up inside me. I didn't like it one bit but I had no choice. Keith said to me later he saw Alanna wake up and scrunch her body. Jaekle said" I got the fluid from the right side of the chest now I have to go back in for the left side". He stuck the needle back in and this time Alanna actually started to fight it on the ultrasound. She moved back and forth trying to get away. Jaekle took the needle out and started thinking of a plan to outsmart Alanna. He said "I hate when babies do this to me, but lucky for me I always outsmart them" With that he found a way and stuck it back in and drained her left chest. Afterwards he told his student to deliver the 2 liters of fluid down to the lab and have them run tests. He laughed and said "Oh those lab guys are going to love me now when they see these 2 liters." I will admit it was funny. Then Jaekle had me wheeled back to my room and said now we have to wait and see if the fluid comes back...
I will continue my story with the results of the test and what happened after the ultrasound. I hope this blog will be a good recap for Alanna. I'm trying to be as detailed as possible because I want Alanna to know her whole story as if she was right there. She needs to know it so she can feel how special she truly is to her family.
What's the Cause/What's the Plan?
As I entered my room my whole family was already in there waiting for me. My sister ran up with a bag full of goodies to keep me busy while I waited. She brought board games, magazines and the complete series of "Roseanne". My sister and I have a secret love for that sitcom and always watch it when we are feeling blue. I was not able to do anything but sit in my bed and stare out in space. So those games, books, etc sat untouched.. Then after a few minutes was a knock at the door and a voice saying "Jaekle here!" I said "come in". Jaekle saw the crowd in my room and said "What's this? A party?" Keith's brother said "Yeah it's a party" Jaekle replied "I'll go make some Margarita's". Once again he put a smile on my face during this tough time. Jaekle pulled up a rocking chair started rocking and made himself right at home with everyone. It was as if we were sitting together as one big family mingling during a holiday get-together. Jaekle said "So what are your questions? Everyone please ask me questions." I said "What's the plan". Jaekle said "You are going to stay at this hospital until the baby is born. You are not to leave and our goal is to keep that baby inside you and fight off the fluid for as long as possible. The longer we can keep your baby in the greater the chances of survival." He then said "We are working to find out the cause of all this. If we can find a cause for the hydrops then we have a greater chance of treating this." He went on to say that there is a whole page of causes and questioned me. He brought up my job and asked me since I work at Children's if I've been around any sick kids. "I said yes some kids have seen me who have been sick. parents bring in their kids who are sick but I have not been sick my whole pregnancy." Jaekle's face dropped and he said "Hydrops can be caused from a virus that has crossed over to the placenta. If any kid was sick it could have infected your baby." They were planning on running tests to see if this was the case. I then tried to think back on all the things I did pregnant that might have been potentially bad... I said "I drank Crystal Light" He laughed and said "that is fine." I mentioned I had eaten deli meat but only a few times. He said "well this might keep me up at night worried." He was serious. He said the bacteria in lunch meat could've caused this. He also went into my family history, if I had anemia, diabetes, etc. There were going to be lots of tests run on me throughout my stay. After we asked questions he left and then someone was sent in to take 20 viles of blood. I have never seen so many tubes. They were running test after test. Test for diabetes, anemia, genetics, viral, turners syndrome, downs syndrome, etc..... I was told I would get results from diabetes, anemia in a few days, genetics a week or longer, syndromes were unknown how long it would take for results. I just had to sit and wait. It was the waiting game from hell. I was also told some of these causes could indicate a positive or terrible prognosis for Alanna. For example if it was anemia it could be treated, viral could be fatal or treatable with antibotics if it was a combination of a few then definatley fatal. It was pure mental torture. I felt like my mind was in a "Saw" movie. It was just so evil to put this sort of mental anxiety on a pregnant mother who almost has a full term and what she thought to be a healthly baby. The battle continues. Still no end or answers and hoping to dodge these bullets of bad news.
Long Night
That night I did not sleep at all. How could I? I was hooked to so many monitors everytime I moved something would come undone and beep and a nurse would come in. The only thing that brought me comfort was Alanna's heart monitor. All night long I stared at the screen reading her heartbeat It was always around 130/140, so stable. I would listen to the beat and the beating was the most soothing sound. Alanna hated the monitor. She would kick it off my tummy each time the nurse would put it on. I found it funny and kept thinking "how can she be so sick". Look at her wonderful heartbeat, such a strong kick. My baby is so strong. I kept thinking over and over how strong she was but then I would have to hear doctors keep reminding me of how sick she was. It didn't make sense. I learned a lot about Alanna through the heart monitor. I learned that her and I were almost acting as one. When I would get upset her heart rate would rise, when I was hungry it would rise again when I would laugh and be happy her heart rate stayed stable. I felt this strong bond that was unlike anything I have ever felt. I loved her so much and could feel how much my feelings impacted her and how much she impacted me. This ended up being my late night pattern with her. Her heartbeat was my security blanket of comfort. As long as I have that I still have hope. I also decided that first night to become a human incubator. My body was all for Alanna not me. I turned my feelings off and decided to try to keep as calm as possible to keep her stable. I checked out.... I did decide the next day to finally let people know on facebook. I thought that reading comments while I was in bed would help get me through my days. Reading all the nice messages, prayers and words of comfort got me through the long days of waiting. I also had visitors coming at all hours. Everyone stepped up to the plate put their own priorities on hold to be with me. I felt so much love from people. It was so powerful. I truly saw the eyes of God through each visitor. This situation enhanced my friendships, created new friends, brought my families closer and proved that true unconditional love and compassion for others is the only thing that truly brings peace.
I will continue my blog with the the second ultrasound and stories of love. Eventually I want to open up about how I truly met our Lord and not in heaven but the hospital. I have so many stories of our Lord carrying me without me asking. It has renewed my faith. I feel so close to his spirit that thinking about church and going gets me emotional. I know it sounds crazy but it's true. I have a everlasting channel to his peace. To be continued....
PART 3
Updated 11/10/12
July 17th Ultrasound Number 2!!
Just to re-cap Dr. Jaekle drained my belly of 5lbs of fluid and also drained Alanna's chest of fluid during the first ultrasound. This ultrasound number 2 is suppose to determine if the fluid stayed away or came back.
The ultrasound tech came into my room and wheeled me down to the ultrasound to check on baby's status. Once she put the scanner on my belly it was evident the fluid came back. Dr. Jaekle came in and said yes the fluid came back. I was so discouraged and kept asking what that meant. He said he was going to do another procedure where he drained more fluid off of me and also Alanna. He thinks at this point there might be a leak or blockage in Alanna's lympatic system because the fluid came back. The problem is we don't know why her body keeps leaking fluid. During this ultrasound I found it interesting that Keith was asking Dr. Jaekle if Alanna would look normal when she is born. I kept thinking "what type of question is that?..." Little did I know that Keith had been googling "hydrops" and looking at all these images of babies born with the condition. I kept away from the computer because I didn't want to read about it. I just wanted to be carried in the arms of God and not let pictures or articles influence my mindset. Dr. Jaekle said that Alanna would have significant swelling but look like a "normal" baby, just bigger. This made Keith and I feel better but looking back I never realized how scared my husband must've been. He looked at terrifying images and never once told me or vented to me his fears after seeing the photos. I didn't end up looking up the images until weeks later... This incident really made me look up to Keith even more and see the strength of the man I married. I don't think I could've been that strong but he was. Once again he was my rock through all this. He was like my sercurity blanket bringing me comfort. The next day I was drained of more fluid. I had to endure my baby feeling the pain of needles again also...
Reflecting and God Revealing True Unconditional Love and Kindness from Others
After the second procedure I was a mess!! I was not getting much hope from any of the doctors. I had visitors coming all day long which was so helpful. It kept my mind off everything and helped me survivie my days. These days were my lowest or at least I thought.... I would experience overwhelming waves of grief where I would cry and moments of feeling love and peace like I had never felt before. It's amazing how God can make ashes disappear while your literally standing in the fire. I was also feeling so much love for others, more than ever. I realized that no matter what we feel about the people in our lives that people are truly good. Sometimes we have to take the bad with the good but good always wins in the end. I had so many friends and family who really stepped up. Keith was by my side every second. His parents had Liam living at their house and I know it had to of been difficult because Keith's mom works from home and his father has health issues of his own. They never once complained and kept a smile on their faces the whole time. Keith's brother and sister came over all the time to hang out for hours and would help his parents with Liam. Keith worked from my hospital room with his laptop but eventually he had to leave overnight during the week because Liam had school. We had to find a way to make life normal for Liam. My sister dropped everything and spent the night with me in the hosptial. She was there daily. We layed together and told funny stories and watched Roseanne. It was such a special bonding time. She brought her work clothes and took a shower in the yucky hospital bathroom and slept on the mini plastic couch just so I wouldn't be alone.She is a true saint on this Earth. My mom worked from my hosptial room. She sat right next to my bed all day long with her laptop making sure she was there for my every need and left late at night. We had neighbors taking care of our yard and a group of them even mulched our whole landscaping because Keith had ordered mulch and forgot about it. I had a special neighbor friend get all the other neighbors together to plan meals. All of them took turns planning to bring a meal down to the hospital and offering to watch Liam anytime. I had wonderful friends who had been through similar situations come down almost every day and show me support and love. I had the same special friend who coordinated meals call me in the early morning hours and talk to me for awhile because she knew I was alone in the hosptial and kept me company until Keith was able to come back to the hospital at 8:30am from dropping Liam off at school. (I'm crying now thinking of this because I'm feeling overwhelmed with love). She would also come multiple times during the week giving me so much love and sit at my bed and hold my hand showing me the most loving comfort. Friends and family were dropping off games, books, candy and tons more stuff. I had friends calling and praying with me and giving me words of encouragement. I was getting so many messages on facebook, text and phone calls.
God worked through others to give me the strength I needed so I didn't crumble completely. I truly saw God work through people, The feeling of love I felt surpassed any wonderful feeling in life I've ever felt. I never thought of myself as worthly of such kindness because I admit I'm not perfect. I can be negative, I can get annyoed with people, gossip, I can complain and feel down in the dumps so I never thought people would care about me to this extent. I learned that God thought I was special and he sent others to prove that to me. I "do" matter in his eyes. I needed this support so much. I will never forget all of you who were there for me. I look at you with the most positive image, love and think you are the most wonderful beings ever. I will always have a special place in my heart for the kindness.
With all that said.... it brings me back to having strange irrational thoughts about Alanna and God also. I kept thinking maybe this is happening because God is teaching me a lesson to be a better person. If it wasn't for Alanna I would've never had my eyes open to this kind of love and peace I'm experiencing. I would get angry at these thoughts and think please God don't send this beautiful innocent baby into a world where she only knows my womb and a needle. Don't take her away from me because I sinned somewhere terribly and now need to be taught a lesson. I know this thinking is awful but that is how I felt at the time. One day all my feelings changed and this is wrong thinking I know but can't help it!! I looked at my husband who I think nothing but positive thoughts and he is genuinally a good person who does not need these lessons. I thought God isn't taking Alanna away from just me, he is taking her away from Keith too! Keith doesn't need to be taught these lessons because he doesn't have flaws the way I do. There has to be another reason this is happening. I still don't know to this day why this happened to me but I do know my feelings of peace, love and gratitiude and only seeing the good in others has stayed.
I will continue my story with the 3rd ultrasound and it's quite devasting so I need to preserve my energy and focus to write the next chapter in my story. I have many stories of God and feeling his peace and him communicating to me. I hope my stories of God will inspire you to appreicate your blessings and not to focus on the small stuff. I had to be thrown into the fire to learn these lessons but I hope that I can somehow communicate God's message and love to you all and spread my peace. Lots of love.
Update 11/17/12
3rd Ultrasound: Not again!!
I was the medical mystery case at the hospital. Still no answers as to why Hydrops was happening. Attending physicians and residents were meeting every morning doing rounds on my case. I was getting students left and right coming into my room interviewing me and asking me questions. I had to laugh at one resident doctor because she was trying to track down my 20 week ultrasound from my OBGYN practice. I later asked Dr. Jaekle why they are looking for my 20 week ultrasound and he admited one of those residents were put to work as sort of a punshiment for not knowing answers regarding my case during morning rounds. This made me laugh. I felt like I literally was on a an episode of "Grey's Anatomy" with all these residents and adventures I was encountering each day.
Monday June 18th, it's time for my 3rd ultrasound to check if the 2nd fluid drainage stayed clear. Here comes the ultrasound tech again! I'm gettting used to this routine with getting wheeled to and from my room to the ultrasound room. She brings me in and starts scanning my belly. I know if there's fluid again Dr. Jaekle mentioned he would do a shunt surgery on Alanna while she was in my belly. He would insert a shunt into her chest that would keep the fluid coming out. I knew something wasn't right in the ultrasound again because once again crickets.... no words of hope or encouragement just pure silence. My stomach feels sick! (I think I'm going to be forever aversed to ultrasounds after these horrendous experiences). The tech takes a bunch of pictures and then prints them out and silently hands them to me to take to my room. I immediately hand the pictures to my husband who looks at them and smiles. I felt like this lady handing me pictures was a cruel action. I've been told my baby has little hope but here you go here are a bunch of pictures of your baby who looks perfect on the ultrasound. I was afraid looking at these pictures would only make losing her harder :(
So once again mommy's intuition is right. I arrived in my room I could fill my stomach tensing up and it even felt bigger which told me fluid came back. I kept telling Keith I have a bad feeling about this. He gave me words of encouragement telling me it was all ok. Then there was a knock on the door... "Jaekle here!" Dr. Jaekle and his resident Dr. Regan both walked in. Dr. Jaekle immediately said "Well Nikki, I'm about to rock your world". I said "why?". He said "We are going to deliver you tomorrow" I stared in shock. I couldn't even cry until he said these words.... "The fluid came back again and this time it's spreading to her stomach. We don't know why this is happening and we consulted Children's neonatal team and they feel she would have a better chance if we get her out and work on her." Then the tears started pouring. I was shaking uncontrollably because I never felt such fear in my life. I was told keeping her in was the best option now I'm told she has to come out. I then asked the dreaded question ... "What are her chances at this point" Dr. Jaekle said less than 40% at this point. I started crying more. Dr. Regan his resident who had been working with me also came by my bed and started tearing up. She said "I'm so sorry this is happening to you. You are such a nice person and don't deserve this." I just cried and cried. They told me the Children's hosptial neonatologists who would be there at delivery would come and talk beforehand about what to expect at delivery.
I had some visitors waiting to see me and I kept turning people away left and right. I was too devasted to see anyone. My family came and all sat in my room to give me support. One of my special friends who I said not to come came anyway and it was a good thing. She brought me the comfort I needed and it was so helpful.
Dr. Ward and her fellow Dr. Wiles the neonatologists finally arrived that evening and said "What questions do you have?". They had grim looks on their faces. I asked "How bad is she?" They said "She is very sick. I'm so sorry." They said "She will be really swollen, she won't cry when she comes out and we will have to take her immediately to start working on her." They didn't give me much hope or information because they didn't know why this was happening to my baby so they had no answers. I just cried and cried and cried....... They asked me if I had any other questions and I just said "I'm ready for my sleeping medicine." (The nurse prior to them coming said she could give me a pill that would help relax and get me to sleep).... I just wanted someone to knock me out and wake me up when this was over.....
The nurse came in and said she was going to remove all my monitors so I can be comfortable while I slept before my c-section. I said "no" I want Alanna's heart monitor connected to me. I've been wearing it for over a week and was not ready to stop listening to that beautiful heartbeat which was still so strong. Dr. Jaekle sent a resident in to give me one more ultrasound so they could check the baby one last time before I deliver. She came into my room and started scanning my belly. Once again crickets.... She clearly was having trouble finding what she needed or saw something terrible. I will never know... All I know she was frantically scanning around and then looked at me and said "I'lll be right back I have to use the restroom." I looked at Keith and my mom and we actually started to laugh. I couldn't believe she just said that!! Then a minute later she came back with another resident doctor and they both were working together to find whatever it was they were suppose to find. They both eventually left and a it was starting to get late. I knew I wouldn't be able to sleep due to my nerves. I was shaking uncontrollably in my bed with cold chills of fear after hearing all this news... I still couldn't sleep even with the meds... If you are wondering what a mother does the night before she fears her baby's death which also feels like her own death, well here it is. At least in my case...
I layed in my bed and continued to shake. I read Psalm 97 in my bible and held onto a special rosary my sister gave me. I begged God to please save my Alanna. I promised to be a better person from this day on. Nothing else in life mattered. All I wanted was my baby. Career, money, shopping, vacations, hobbies, etc meant nothing to me. I would've given up everything in my life that brought me joy just to have her be ok. As I started to close my eyes I sang the "Prayer of St. Francis" over and over in my head until it was time to wake up the next morning..
The next part of this blog with lead into my delivery and what it's like being a mommy without your baby with you but in the NICU.
Updated 11/29/12
June 19th Delivery "Best and Worst Day of My Life"
It was 6:00am and a sweet nurse entered my room telling me it's time to get up and shower before my c-section. I was still laying on my bed holding my rosary and shaking with my bible wrapped in my arms as if it were my teddy bear. I felt so numb and lifeless. I kept thinking how am I strong enough to do this? There is no way I can handle what is about to happen to me... I was absolutely terrified. The nurse handed me a special soap to use to sterlize my body while I took a shower. I felt like I was in a nightmare. Like I was washing myself in preparation for death. Alanna had a strong heartbeat all night and I felt her move and I kept thinking this can't be the end. Eventually another nurse came into my room with a wheelchair ready to take me to labor and delivery.
I entered the room where they started getting me ready. Keith stayed next to my side. My sister and mom came in and I could tell they had been crying but were trying so hard to stay strong for me. I lay on the bed shaking with fear. I forgot my rosary after my shower and my sister searched through my bags and found it. She handed it to me and I just laid quivering and quivering. Finally they told Keith to leave and get his scrubs on and I was going to be wheeled into surgery. I entered surgery and they gave me my shot and I laid down. I had never seen so many medical professionals in one room! I had Dr. Jaekle the fetal medicine doctor with a resident getting ready to drain my belly again and Alanna's chest again before surgery. I had the obgyn doctor ready to perform the c-section and the anesthesiologist, neonatolgist teams from Children's waiting behind a glass window and lots of others.
Keith finally came into surgery after the amniocentesis and thoracocentesis procedures (fluid drainage of Alanna and I) were complete. I still held tightly to my rosary and waited for what God had in store for me. Well what he had in store was nothing more than a pure miracle!! Only God can only turn your worst day into your best day. He made ashes from the fire disappear and brought me sunshine. I was told my Alanna would not cry from all the fluid in her chest but God had a different plan. I knew that Alanna had entered the world because at 9:11am I heard a cry! As I heard the sound I looked at Keith and said "did she just cry?" He looked into my eyes with a glowing joy and said "yes". They quickly grabbed her and showed her to me for a second. I got to give her a kiss and then she was gone like that! Just one quick kiss and then it was just Keith and I alone with the dr's. I was scared for Alanna. When I saw her the first thing I noticed was her color. She was dark purple, her eyes swollen shut but mouth moving. Her ears looked like cauliflower because she was so swollen. I knew she looked sick and her features were dimorphic from fluid but to me she looked perfect and beautiful. All I wanted was to hold her and take her home and I didn't care if she had cauliflower ears for the rest of her life. I just wanted her.
Another interesting thing is somehow Keith's dad felt her presence and cry even though he was not in the room. Once again I feel it was God sending others a message she was ok. Keith's dad was so scared for us as was everyone else. The whole time we were in surgery he waited next to the double doors leading to surgery leaning on his cane crying. Keith's father is a very deep, loving man and at 9:15am he said he looked up and his tears were gone and he felt peace. He somehow knew at that point Alanna was here. He said to our whole family "Alanna is here and is ok" Within minutes after him saying those words Keith walked down the hallway and looked through the window of the double doors giving a thumbs up sign to everyone. Everyone just fell to the ground with tearful joy. It was the most wonderful moment. My sister also reported that around the same time as Keith's dad she had a calm peaceful feeling overcome her telling her it will all be ok.
Anyway back to my c-section and what happened next.... Dr. Jaekle came back to me from going to check on Alanna and I asked how is she? Dr. Jaekle responded "Well I went in to check on her and there are a bunch on people just standing around and only a few people working on her so I would say that's a good sign." Those words were pure music to my soul. I knew Alanna was still very sick and not out of the woods but hearing anything remotely positive was all I needed to fuel my spirit.
Dr. Ward the attending neonatologist after a few hours of my recovery came to speak with me. She smiled and said Alanna did better than they thought at delivery and that made me happy to hear. Then her face got grim and she said "She is still very very sick and we are going to be working on her to stablize her levels. She has large amounts of fluid in her chest and is very swollen. These first 3 days in the NICU are going to be the most crucial and I'm going to let you know it's going to be a roller coaster ride for awhile." I then started to cry because I was reminded of how sick and critical Alanna was and once again I'm going to be put through an emotional roller coaster of can she come home or is she not coming home? It was pure torture...
I was in the hospital for 4 days after delivery. Things are different when you have a baby in the NICU. You don't have your baby with you in or even near your room. You don't have photographers, birth certificate people, etc constantly coming in to talk about your baby. Your visitors don't get to come and see you with your baby in your room. They have to be escorted into the NICU with either Keith or I one at a time. You have to spend time at the cleaning center sterilizing your hands and you have to sign in and get a bracelet before you can even enter Alanna's suite. Once you see her all you can do is look and maybe touch her for a few seconds.
The NICU is an interesting place.... To me I describe it as a portal between earth and heaven. I always felt like I was so close to God when I would enter and be surrounded by all the innocent babies fighting for their lives. I felt this sense of warmth and peace as I would pass by each crib seeing the smallest babies I never knew could even exist. The nurses were all so incredibly nice and loving. You could tell they absolutely had a passion for babies and truly cared. Alanna had a one on one nurse on duty for her 24/7. They would literally stand over her clear bassinet all day long attending to her every need. It made me feel better knowing someone with knowledge on how to help her was with her at every moment. I was dreading the fact I had to get on this horrible roller coaster ride with tons of ups and downs. Dr. Jaekel gave me some interesting NICU facts. He said the first 72 hours usually set the stage for the journey. Basically if Alanna does good these first 3 days we can expect the progress to most likely continue if not we are going to be stuck on this horrible roller coaster.
I will stop now. My next section will talk about leaving Alanna and NICU life and more miracles in the making. I am very anxious to write these next parts as this special time with Alanna in the NICU was purely life changing. I am totally transformed.
Updated 12/15/12
NICU our new way of life
Before I talk about what it was like leaving Alanna in the hospital I'm feeling compelled to write about my hospital stay after Alanna's birth. I was in the hospital for 4 more days after Alanna's birth before I was discharged. Each day Keith and I would go to the NICU to visit Alanna. This was very difficult for me for a few reasons. 1: It was incredibly difficult to see her laying with all the tubes and thinking are these things really helping her or is she suffering? 2: Hearing the dr's and nurses telling me things like "she doing fairly well...." 3. No one telling me when she can come home because no one knows if she will actually be able to come home. I would not dare ever ask the question of when she was coming home because I didn't want to hear their answer 4. Recovering from a c-section and for those of you who have been through a c-section it is incredibly hard to get up and down from your bed. Keith would set an alarm and get up every morning at 7:30 am to make it to the NICU in time for dr's rounds. Each morning around 8:00-8:30 dr's would do rounds arond Alanna's crib talking about her plan for the day and how treatments were going. This was so stressful for me and I couldn't bear to go. I was to fearful of anything negative they would say. Keith was my rock and he would strongly get up each morning and bring his camera like a proud father taking pictures of her while dr's did their rounds. This was our routine each morning. While Keith was up there I would sit in fear not knowing what would be said. Each night in the hospital before Keith and I would go to bed we would go up to the NICU around 10:30-11:00pm and say goodnight to Alanna. It was the best part of my day being there with Keith and knowing that Alanna completed another day of life.
Time to go HOME-Nikki!
Well this part of my story is another big milestone. I get to finally leave the hospital and go home. I did not want to leave. I wanted to stay in my protected bubble of being in my hospital room and have Alanna under the same roof. I was not ready to go on with life like it was normal when my life was anything but normal. I remember that day so well. Alanna was not doing well that day. Her x-rays did not look good and the dr's didn't know why. I just cried and cried. I was not ready to leave especially when she was like this. I wish I could comprehend what they told me specifically but I was in a complete daze and couldn't grasph any detail of her condition. My sister came to give me moral support and help me pack. Keith and I went to the NICU I layed over Alanna who still was intubated and was obviously still fighting for her life. Her little chest was moving up and down so fast and I had to tell her good-bye. The nurses reassured me that she would be loved and be in good care. They also gave me a card with a special password and number that I could call at any hour and get updates.
It was offically time to leave. My sister wheeled me out of my room and Keith pulled the car around. This is so much different than with Liam. The last time I did this I got to carry my baby boy in my arms and Keith wheeled me out. This time it was just me.... The second I entered the car I felt numb all over. As we got on the highway to pick up Liam from Keith's parents house I had a meltdown. I started crying, screaming I was so mad. I'm embarassed to admit this but I feel I was so emotionally flooded that I had to explode. After we picked up Liam I got home and just felt like a zombie. I hated my house, I hated that I was home and I hated that I had to wake up the next day and act normal. I felt so sick and icky all over. Keith went back to the hospital that night which made me feel better. Keith also was the one to call the nurses and check up on Alanna because I wans't emotionally able to handle any bad news. Liam continued to attend Primrose so I could recover. All I did all day was sleep in my bed and cry for my baby. It was a very difficult time. I would look at the card with the nurse's number and my password and feel hesitant to call because I was scared of what I would be told. One night Keith must've sensed that I wanted to know about Alanna all the time but was afraid to call. He said "Nikki why don't you call tonight?" I said "I can't. I'm to scared" Keith said "I think you should do it. Just give them a call. It will be ok." So I did and to my surprise it was ok. The nurse was so nice and reassuring. She told me Alanna was having an uneventful day and that they all love her. I felt so good about the call from that day on I was making all the calls and taking charge. It gave me a lift and stength to go on.
The NICU became our new life. In the mornings I would go there, at lunch Keith would go and meet me, my mom would go in the afternoon's and then Keith and I or one of us would go again at night. It was literally a new way of life. I would have family and friends watch Liam while I went in the mornings and I would always take one morning a week when it was just Liam and I doing something special together. That was the hardest time.. It was hard going out to the world seeing others with new babies and just seeing people in general who would look at me and no nothing about what was going on. I would walk around and think "no one knows that I'm in a battle.. No one knows that I have a baby... No one knows that I'm so sad..." It was the weirdest feeling but really puts life into perspective. You don't really know others stories. Things don't always appear as they seem.
My mornings at the NICU started feeling so special. Alanna was doing better each day. All the sudden the dr's were reporting her chest x-rays were looking better than ever! They said her fluid is draining. They couldn't tell me why but just that they were happy and hopeful! - another MIRACLE. No explanation! All I can think of is that it was the work of God if doctors don't have answers. My Alanna was starting to respond to my voice. She had a little smile come through even with the large intubation tube. Her smile, the way she would open her eyes, all these little milestones were pure gifts for me. The Lord allowed me to savor and he made it clear the sacredness of each little skill these babies have that I always took for granted with Liam. Keith and I grew closer as a result of this as well.
NICU and Marriage and God
Through such a troubling experience our Lord provided me with many unexpected gifts along the way. Being at the NICU had it's positive points. I got to see Keith everyday for lunch and in the mornings. He would always meet me there and sit with me in the mornings. We would both lean over each side of Alanna and talk to her, talk to the nurses and just talk to each other. We would go to lunch together just us 2 and be able to talk about Alanna. It was very therapeutic. I fell in love all over again with my wonderful husband. He was always there for me. He didn't have to meet me there in the mornings but he did. Keith and I would spend our weekends and Saturday nights at the NICU. Liam would stay at his grandparents for the weekend and Keith and I would spend our days by Alanna's side. We would play iPad games, get visitors, bond with the nurses and doctors. We would also go out to dinner every Saturday night and then afterwards around 9:00pm head back down to the NICU. Yes you know your officially a parent and no longer college cool when your Saturday nights involve hanging out in the hospital with nurses and doctors. I will say the Univeristy emergency room was a great people watching place where there was also some crazy action. The University was an interesting place. Keith and I would have to be police escorted to get to Alanna's NICU on Saturday nights.
God found me and wrapped me in Peace and Love
A good friend once told me that the key to channeling in our Lord is "thankfulness" I truly believe this statement because let me tell you as Alanna's progress started improving each day I felt such a powerful sense of thankfulness. I was feeling blessed, grateful and full of peace. Alanna wasn't out of the woods but each little milestone was an out of this world experience. It was then when I felt the Lord. He came to me and stayed with me and is still here with me. Feeling the Lord is like getting a warm rush of happiness. You feel completely at peace and so relaxed. You feel nothing but pure love for others, the world and your life. This is how I felt whenever Alanna would do well. Then the Lord actually came to me and I will tell you how... He came to me in many ways through people, tv, scripture, written notes and gifts. It was truly as if I channeled in his spirit, like someone who has channeled in a ghost. I know that's a weird comparison but it's how I felt.
1. The first time he came I was praying and journaling my experience. One night when I was journaling I was watching "Shallow Hal" yes I know weird but it was on Oxygen around 8:00. After the movie all the sudden a minister popped on the t.v. and said "The power of prayer works..." It then got even more strange. They started showing parents of sick children and how those children got better. Keith then walked into the room and said "Nikki what are you watching? What did you turn on?" I said "Keith I didn't turn this on it came to me..." It was very weird.... Once again I felt so thankful like the Lord is real and is here for me.
2. There was another day I was having a low day and feeling sad. I opened the fridge and when I closed it I saw written on Liam's artwork calendar in pen "Find the joy in the day." I'm sure it might have always been there but this was the first time it popped up at me and I noticed. The calendar had been on the fridge for awhile. It gave me chills which told me it was a message. I followed that message. It was like now I have channeled in our Lord and he is making it impossible for me not to feel thankful...Whenever I was feeling down he would bring me back up with some sort of sign.
3. Another experience happened after I made a post on facebook about feeling happy for Alanna's progress at being 2 months old but being sad at the same time that she wasn't home with me. God must've heard me because the second I walked into the NICU after writing that post a nurse came up to me telling me a family near Alanna was losing their baby and there is a priest and lots of people around and they might ask me to leave. I started tearing up and dropped my head down next to Alanna. I saw Alanna looking more healthy and I just started to pray for that family and once again God gave me the feeling of thankfullness of my Alanna's healing rather than sorrow for not having her home.
4. I have a dear friend who is a prayer warrior and has a true gift with prayer. She came down to the NICU one night with me and prayed over my sweet Alanna. She said she saw visions of Alanna being wrapped in the hands of God. It was like an energy. She prayed for Alanna's healing and told me she felt peace with Alanna like God was protecting her. I interpreted it as she was no longer in my womb where she should but but God was carrying her through and healing her since my body could not. It was the very next morning after prayer that I walked into the NICU and a nurse came running up to me. I panicked because I thought she was going to tell me terrible news. She said "Nikki Alanna is ready to feed from a bottle today with special formula." I was caught completely off guard because it was not in her schedule to start feeds that early. I guess it was in God's plan to have her start. He demonstrated the power of prayer and all things are left in his hands. I was over the moon. I just cried and told the nurse how my friend came and prayed on Alanna and the nurse started to tear up and said "Alanna is truly a miracle"
5. There was another time I entered the NICU and saw the cutest outfit hanging on Alanna's crib. It was an outfit in her size and one that I was wanting to get for her. It was a onsie set with legging pants. The mystery is no one knows how it got there. I asked everyone who is on our list of allowed visitors and no one got it for her. I asked the nurse if it was put there by mistake and she said "No. We would not put an brand new outfit on Alanna's crib by mistake. It's a gift for her". She only had one baby next to her and that baby was a lot smaller so the outfit wasn't that babies size. To this day I look at it as a gift sent from God. Yes I'm sure some human being put it there but I feel God was acting through whoever that person was.
6. Another gift from God was the day I got to finally nurse Alanna. I was very skeptical of this because my son never took to nursing and he was born perfectly healthy. I thought for sure Alanna would struggle because she had already violated every breastfeeding rule in the book. On top of that she was weak and sick so I thought for sure I would not get this opportunity once again. Alanna had already been given a binky, special formula through a bottle nipple and was used to NG tubes, etc. Well once again God said trust in me. Through me all things are possible. The lactation consultant was there for the first feed. I did as I was told with Alanna. She latched right on and was a champ. The lactation consultant was so surprised. She said "She is going to be a really good breastfeeder. She has a great latch." I started crying with tears of joy because I longed for such an expereince with my baby.
7. Another act from God came as the form of another gift. It was getting close to the time Alanna was going to be discharged. She was scheduled to get pictures taken at our house. I was driving all over trying to find a dress for her. I had no luck. I was so discouraged.... I remember after an afternoon of shopping with Liam I pulled my car up the driveway and on my front porch was a box. I thought that is strange.... I brought the box inside and opened it up. Inside the box I kid you not were the most beautiful baby clothes. One being a blue dress. It's the dress she is wearing in our family photo. It was send by a family friend. I swear God works through people and people don't even realize it. I was blown away.
I see each day now as a gift from God. Looking at Alanna is a constant reminder that there is a God and he is real. He works actively through my life and I know he works through everyone's as well. You just have to take the time to see his work at hand. Alanna is my proof. She is my closest link to God. When I see her, hold her, talk to her I feel that same feeling of peace, warm and love. The interesting thing about Alanna is her name means "peace" This is so true in that she has brought my life peace. Her name also mean's "God's breath" She took breath from God the day she was born. Alanna is truly a miracle and her name says it all. God is real and true. As I'm writing this right sign number 8: "Hallelujah" started playing on my Pandora and I'm not listening to a religious station. I'm listening to classical. How suiting. I'm going to end this blog with goosebumps, a tear of joy and leave you with this. Hallelujah praise the Lord! Thank you dear Lord. Through him all things are possible. Amen
Well I heard there was a secret chord
that David played and it pleased the Lord
But you don't really care for music, do you?
Well it goes like this:
The fourth, the fifth,
The minor fall and the major lift
The baffled king composing Hallelujah
Hallelujah, hallelujah, hallelujah, hallelujah...
Your faith was strong but you needed proof
You saw her bathing on the roof
Her beauty and the moonlight overthrew you
She tied you to her kitchen chair
She broke your throne and she cut your hair
And from your lips she drew the Hallelujah
Hallelujah, hallelujah, hallelujah, hallelujah...
Baby I've been here before
I've seen this room and I've walked this floor (you know)
I used to live alone before I knew you
And I've seen your flag on the marble arch
and love is not a victory march
It's a cold and it's a broken Hallelujah
Hallelujah, hallelujah, hallelujah, hallelujah...
there was a time when you let me know
What's really going on below
But now you never show that to me, do you?
But remember when I moved in you
And the holy dove was moving too
And every breath we drew was Hallelujah
Hallelujah, hallelujah, hallelujah, hallelujah...
Maybe there's a God above
all I've ever learned from love
Was how to shoot somebody who outdrew you
And it's not a cry that you hear at night
It's not somebody who's seen the light
It's a cold and it's a broken Hallelujah
Hallelujah, hallelujah, hallelujah, hallelujah...
Hallelujah, hallelujah, hallelujah, hallelujah...
Hallelujah, hallelujah, hallelujah
Hallelujah, hallelujah
that David played and it pleased the Lord
But you don't really care for music, do you?
Well it goes like this:
The fourth, the fifth,
The minor fall and the major lift
The baffled king composing Hallelujah
Hallelujah, hallelujah, hallelujah, hallelujah...
Your faith was strong but you needed proof
You saw her bathing on the roof
Her beauty and the moonlight overthrew you
She tied you to her kitchen chair
She broke your throne and she cut your hair
And from your lips she drew the Hallelujah
Hallelujah, hallelujah, hallelujah, hallelujah...
Baby I've been here before
I've seen this room and I've walked this floor (you know)
I used to live alone before I knew you
And I've seen your flag on the marble arch
and love is not a victory march
It's a cold and it's a broken Hallelujah
Hallelujah, hallelujah, hallelujah, hallelujah...
there was a time when you let me know
What's really going on below
But now you never show that to me, do you?
But remember when I moved in you
And the holy dove was moving too
And every breath we drew was Hallelujah
Hallelujah, hallelujah, hallelujah, hallelujah...
Maybe there's a God above
all I've ever learned from love
Was how to shoot somebody who outdrew you
And it's not a cry that you hear at night
It's not somebody who's seen the light
It's a cold and it's a broken Hallelujah
Hallelujah, hallelujah, hallelujah, hallelujah...
Hallelujah, hallelujah, hallelujah, hallelujah...
Hallelujah, hallelujah, hallelujah
Hallelujah, hallelujah
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