Alanna 10 months old

Alanna is growing so fast. Alanna continues to impress us each month with her growth and development.  Here are some of her 10th month dvelopments:

Feeding: Alanna's really gotten into eating more solid types of foods.  She loves picking up little puffs with her fingers and eating them independently.  She also was introduced to Skyline cheese by her wonderful daddy and loves to eat that as well.  She is especially interested in everything that we are eating and tries to sit with us at the table.  She loves sitting next to her mommy in her booster seat and the big table rather than sitting in her highchair. She stares at all of us so seriously while we are eating and looks at our mouths like she is trying to figure things out. It is so cute!! She is also working on using the sippy cup.  She enjoys drinking water out of cups but is better with an open cup that I'm supporting rather than a sippy cup with a lid.  She prefers to chew on the lid. 

Language Development:  Alanna continues to babble all the time and says "mama, dada, hi, nana, baba",  "Hi" is her most recent development. She is not using it consistently but every once in awhile when she see me she will lift her hand up as if to wave and I will hear a soft sweet pitched "hi" come from here mouth.  It makes me smile each time.  She watches my mouth all the time with strong interst whenever I get into her face and say sounds.  She still enjoys making kissing noises and is constantly signing "more".  She uses that sign for everything!! She loves the song "Patty Cake" and will smile real big when we start singing and clap her hands.  She likes the game peek-a-boo also.  It makes her laugh everytime I say "boo".   Alanna is constantly playing around with sounds and is rarely quiet at home.  She is also stringing sounds together into jargon which makes her mommy so happy to hear. 

Gross Motor Development:  Alanna continues to improve slowly but yet surely with this skill.  I have decided to get her additional physical therapy at Children's Hospital in addition to the PT she get's at home.  This will bring her up to about 2X's a week with PT.  I was happy to hear at Children's that the PT didn't think she was really to far behind given her remarkable medical history.  Alanna is sitting up indepdently and has started catching herself with her hands as she starts to fall.  She is also rolling all the time in both directions and has become less rigid with her legs, arm and neck muscles.  Her trunk continues to be rigid which is making it a challenge for her to crawl.  She needs lots of stretching each day to help loosen those muscles.  The PT mentioned she also has a lot of back focus and is using her back muslces to try to accomplish motor tasks when she should be using her stomach muscles.  It appears all that fluid build up in her stomach and chest early on has caused lots of rigidity and since Alanna was unable to use those muscles during her early development she really hasn't figure them out yet.  She is doing a lot better though and contuines to try so hard.  She has the motivation to get around because she is constantly trying to get on the floor and move but doesn't seem to know what to do with her body.  Alanna is very strong and can bear weight on her legs.  She most recently started trying to pull up to stand but once again needs lots of support to complete successfully.  I know she will get there with time and practice so I just have to be patient.  I just always try to look on the bright side and think well at least I don't have to chase her around all over the place.  She is making my job easier by staying in once place.

Play Skills:
Alanna loves to play with her pretend make-up toy.  She especially likes chewing up the blush brush.  Alanna also likes to sit with me at night and tear up magazines while I read.  She loves knocking over stacking cups, playing with tv remotes and my cell phone.  Playing with any object she really shouldn't be playing with.  She loves snatching and mouthing on Liam's hot wheels which causes him to get incredibly upset.  He is starting to accept this because she is constantly getting into his hot wheel box!  She loves playing in the bath with bath toys and chewing wash rags and laughing at her big brother when he splashes her and moves her around in her little tub which he calls "Alanna's boat."  It is so cute seeing the 2 of them play and laugh together.  As she gets older the playing get's more and more adorable!!! Alanna also enjoys wathcing all the kids play outside especially the girls on the street .  Whenever she goes outside and they see her they yell " baby Alanna" and she will smile and become very interested in whatever it is they are doing.  She loves to listen to others and be where all the action is.  Her favorite thing to do is have me hold her all day and talk.  She wants that constant direct attention. 

Alanna brings us so much joy.  Just writing this blog is such a refreshing experience for me to reflect on her as a unique person.  It brings me such peace and closness to the Lord because I am once again reminded of this precious gift in my life. 

Alanna 9 months!!

My Alanna is 9 months!!  I'm so proud of her and she is the light of my world.  She continues to show great progress and just recently had her follow-up visit to the high risk clinic at Children's.   Her neonatologist Dr. Wiles was overall very pleased and happy with her progress.  Her weight is in the 22nd percentile which made me so happy to hear.  Her length actually made it on the growth curve at the 5th percentile which is also pleasing to hear-considering last time she wasn't on the curve at all.   Head circumference is in the 50th percentile.  Even though she is a little peanut, her length, weight and head are all proportionate which is also reassuring.  Dr. Wiles wants to continue to follow her growth so we are due back in 4 months. 

An Occupational Therapist also came in during the exam to do an overall screener on Alanna for her fine motor, gross motor, speech-language and social skills because I brought up concerns with her not liking to be on her tummy.  She scored within normal limits for all areas except gross motor.  She still does not like being on her tummy so she is not crawling yet.  She is getting Physical Therapy at our house through Help Me Grow to assist her with this skill.  I have taken notes on all the exercises and do them everyday with her every day.  I know my Alanna will get there with time.  It's just going to be on her time. 

Really Get's you Thinking: Thoughts at the High Risk Clinic!!!-My Reflection

Before I left I told Dr. Wiles how much he means to my family.  I told him we will always have a special place for him in our hearts.  He mentioned that he just took a call from Dr. Ward the other neonatologist that had been with him helping Alanna when she was in the NICU. I told him to tell her we said "hi" and asked if she remembered us.  He looked at me with a grin and said "well I'm sure she does!"  NICU's in our city get on average 1 hydrops case a year.  Alanna is their one big case so she will be hard to forget.  I mentioned to Dr. Wiles he must have gotten a lot of experience on hydrops from a congenital chylorax with Alanna.  He said yes, he has only seen 3 cases and Alanna by far was the one pumping out the most fluid from her chest.  He mentioned she was pumping out a liter a day!  Can you imagine a little preemie baby born at 34 weeks pumping out a liter of fluid a day from their chest!!! It amazes me when I hear those words.  It really puts into perspective how strong Alanna is.  She was so sick but yet so strong.  How does one so little become so strong.  It reminds me of the bible story David and Goliath.  Alanna beat the giant named Hydrops with her little body through the power of our Lord.   I find it amazing that not a day goes by where I'm not gifted with the love of the Lord through Alanna's recovery.  He shows me his love every day.  The way Alanna looks at the world say's it all.  When I look in Alanna's eyes I can see her appreciation of life.  She has a glow about her and a look that say's I'm so happy to be here and earth is an amazing place!! When the wind blows on her, when we walk through the glare of the sun, when I spin her around and tickle her all I see is pure bliss.  It's almost like she's found her little piece of heaven through her battle. 

I can't wait to continue my updates and see where Alanna's continued journey brings her. 

God Bless!

Alanna 8 months!

I don't know where the time has gone but my little miracle is 8 months old!!! I can't believe it.  Even though 8 months has passed since Alanna's battle for life I still have those same feelings of gratefulness and joy each day.  She is a constant reminder of God's love and power.  Even Liam has felt the Lord's love through her at such a young age.  He has been talking about Jesus a lot and even enlightened me with his profound words.  He said last month "Mommy where is Jesus?"  I said "up in heaven with God".  Liam paused and then said "No mommy Jesus is in our hearts".  He paused again and then went on to say "He is also by the blue doors at Alanna's hospital...." Wow those words coming from Liam's mouth gave me chills because I knew it was a sign.    I knew the NICU was a special place and I could feel God's love so much there but having Liam say those words were confirmation that God was really there.  Even though 8 months has passed from my direct channel to the Lord which I feel was the NICU; the Lord still speaks to me and allows me to feel his love every day. He shows me signs through my friends, words he sends me each day and family.  He has followed me home and literally when I look into Alanna's eye's I see Jesus's love looking back at me.  I am so blessed! 

So onto Alanna updates!!
Alanna had another genetics appointment Wed February 13th and once again the doctors are puzzled at how her congenital chylothorax (hydrops) occurred.  They have looked into a possible syndrome called Noonan's syndrome as a last option for answers but are feeling confident that is not the case.  She is not showing any classic signs of the syndrome so as of now it's a spontaneous unexplained event. To me it's "miracle".  Miracles cannot be explained and that is why I'm not getting any answers.  Alanna's case is so unique that only our Lord knows the reason and it's beyond any medical professional's understanding.  Either way at this point I don't really care why it happened.  What matters to me is she is ok and is doing so well. 

Alanna is eating so many solid foods now.  She loves sweet potatoes, northern beans, peas, squash, pears and bananas.  She has imitated many signs (i.e. more, milk) and gestures (i.e. clapping, hi and "so big") and is fascinated with people's faces and speech.  She started babbling a ton using actual phonemes which makes her speech pathologist mommy so happy!!! She of course says "mama" all day long.  She babbles syllables (i.e. dada, nana, mama) all day.  I can't get her to stop talking.  It's music to my ears.  She also started giving kisses as well.   If I say "kisses Alanna"  she will smack her lips together and make kissing sounds.  Keith and I could've sworn last night she tried to say her name.  We were saying "Alanna" over and over again and she was smiling from ear to ear.  She was so interested in hearing her name repeated.  She then went on to say two times in a row "Ahna"  "Ahna".  It was so funny. Keith and I both looked at each other and said "she just said her name.".  Not sure if she really said it but either way it melted our hearts and brought us joy. 

Alanna is also completely in love with her brother!  She smiles and gives him looks of amazement all day long.  Liam can do no wrong in her eyes.  He can grab toys from her, knock her over, be really loud in her face and she just stares at him a face glowing full of joy.  It's so wonderful to see the love between them.  Liam is the only one that can really get her giggling like crazy.

Alanna is rolling over and sitting up for the most part on her own.  She is still very stiff in her chest area from having such a large amount of fluid for so long.  She hasn't acquired the range of motion and strength to start actually crawling yet.  She is getting PT and we are all working really hard at stretching her muscles to make this happen. I'm hopeful it will happen soon because Alanna is really trying hard to be mobile.  She has such a strong desire but her poor little body isn't quite ready yet.

I can't wait to see what other surprises and joys Alanna brings me through her 8 month of life.  She is truly a gift!

Alanna 7 months (almost) High Risk Appointment

Alanna had another appointment on 1/17 with Children's high risk neonatologist Dr. Wiles. Alanna overall is doing really well. Her weight has picked up a lot as a result of fortifying her milk. She is on a regular growth curve in the 15 th percentile weighing at 14 lbs 10 ounces. Her length was a slight area of concern because she has not grown lengthwise in proportion to her weight. Her length is 24:5 inches. They told me that length tends to always take longer to catch up in premature babies and they feel she needs protein added into her diet. I now have to fortify her milk with neosure for added protein. They also suggested instead of puree fruits/ veggies to try some meat or beans. They said Alanna may need to do the baby food thing a little backwards due to her protein needs. Apparently regular formula and breast milk do not have a lot of protein and since she's getting formula mixed with breastmilk for added calories this is helping to pick up her weight but not really doing much to work on length catching up. So I'm hopeful this new fortifier will help Alanna continue to catch up.
Developmentally:
Alanna is doing great cognitively/ communication wise. I started sign with her. She is very interested and after a few weeks of drilling the sign "more" she is starting to do it. She loves when I read to her so I enrolled her in a Rock-a-Bye readers program through the library. It's a early literacy program for infants. She loved it! She smiled, laughed and stared at the librarian the whole time. She was mesmorized by all the activities and movements that went a long with the books. She is also babbling and cooing a ton and laughing. She loves being around others all the time.
Gross Motor:
This area is another story. She got the label developmentally delayed due to this area. I was told this is most likely temporary due to her hydrops condition. Alanna gets Physical Therapy at home and the therapist noticed she has a lot of tightness and is stiff. She needs to loosen up those muscles so she can have more success with rolling, tummy time and sitting up. Apparently the physical therapist feels that since Alanna was so big in my tummy full of fluid, she didn't get much opportunity to move around like normal babies. She also said being born premature and sick also prevented her from performing some of the important early movements that help set the stage for rolling, etc. So Alanna needs some work in this area. She does not enjoy it but goes with the flow. In a perfect world Alanna would be perfectly content laying flat on her back kicking her legs around while smiling.

Foods
Alanna is a champ at eating. Her reflux is completely gone and she has been off Zantec for awhile now. She eats pureed sweet potatos, peas, apple's and bananas. Sweet potatoes are her favorite. ( just like her mommy). < Alanna is also completely out of her elevated bassinet and into her crib. She still gets up once or twice during the night but loves her crib. The transition went way better than I imagined. She has been sleeping in her crib since Christmas day :) /p>

I'm so proud of my little angel. She is the most happy and joyful baby I know. She only cries when she's tired or hungry. She smiles all day long. I feel so blessed having her with me after her long and hard battle to be here. We both fought so hard to have each other. Everyday is such a gift and I'm so appreciative.

Alanna 6 months God is amazing!

Alanna turned 6 months this week!  Alanna had a fun week because she got to experience our annual family tradition of seeing the Sharon Woods Holiday in Lights.  Every year we drive through the woods while Liam sits on daddy's lap and drives the car.  Haha! Scary thought I know but Liam really get's into it.  This year Alanna got to sit on my lap in the front seat and she was waving her arms up and down with excitment because of all the colored lights.  Alanna has a thing for lights so I knew the light show would be a huge hit for her!  I was feeling especially thankful that night and wanted to freeze the moment in time. It was such a precious moment to have my little family together full of love and hapiness.  Six months ago I could've only dreamed and wished for a moment like that and on Thursday night I got to actually experience it.  It was the best Christmas gift I could've received. The feeling of thankfullness really has power and I beleive channels in our Lord.  I was having such powerful feelings of love and thankfullness for my sweet Alanna and Liam that once again God proved his amazing works in the universe.  After the light show we visited Santa Land in Sharon Woods.  Liam and Alanna sat on Santa's lap.  I know this sounds cheesy but the Santa there looked so real.  When he saw Alanna he looked into my eyes and said "What a precious little girl. Give her to me."  The look in that Santa's eyes and the tone of his voice gave me chills.  It sounded like idf God had a voice it could've been him talking to me.  I swear I want to tear up now thinking of it. To make matters more miraculaous 3 people behind us in line for Santa was Alanna's neonatioloist who I blog about all the time and who saved her life.  He was there with his family and came up to talk to us.  It was so random and he's not even from the area.  He said he happened to be off work that night and brought his family.  I tell you with God all things are possible.  God can create the most amazing situations.  How else can something like this happen.  It has to be the act of God.  The God who I can thank my Alanna for bringing into my life.  This Christmas is going to be so amazing.  I just hope I can make it through mass without feeling overwhelmed with emotion.  At least I know God won't mind.
Sending Lots of Love for the Holidays!

Alanna 5 months

December 2012:
Alanna is really taking off with her growing. She's eating all the time now.  She's at 5-6 ounces every 3 hours and her milk continues to be fortified with formula for added calories.   Help Me Grow has been coming to our house every 2 weeks to keep an eye on her development and determine any needs for services.  I was having concerns with her gross motor skills since she doesn't tolerate tummy time due to reflux issues.  A PT came and is going to start working with Alanna and I.  She discovered that part of the reason Alanna struggles with tummy time could be due to a lot of tightness within her chest and neck area.  Alanna is treating the 2 units like one and has a lot of tension.  The PT mentioned this is very common with premature babies.  She is going to start cranial-sacral therapy with her to release some of the tightness. She taught me some exercises to do with her each day as well so Alanna has her first homework assignment at 5 months. 

Alanna's reflux has gotten significantly better so I have started to feel more comfortable transitioning her to her crib for naps at least.  We tried the crib one night but Alanna nor I seemed ready.  We ended up putting her back in her bassinet in our room.  I know this night time sleeping will be one of our biggest struggles to transition her to the crib but I have faith it will all work out when it's meant to be. 

Alanna is such a happy and laid back baby.  She only cries when she's tired, hungry or is in pain from reflux. She coos and acts like she is trying to talk all the time.  She is constantly playing around with sounds which is pure music to my ears.  She is also shaking, mouthing and grabbing toys all the time.  She seems very interested in the way things work.  She loves to listen to books.  She will sit on my lap in her glider while I read book after book and she appears to be listening.  She brings me so much joy and seeing her smile with her adorable dimples is pure bliss.  I am so in love.  She has completely captured my heart. 

I will continue updates as significant events/milestones occur.  I would like to eventually turn this whole blog into a book for Alanna to have when she's old enough to read and understand. I feel it will be helpful someday to have these little milestones and events documented to add to long term effects from hydrops since many babies do not make it through.  Doctors are not able to tell me what Alanna's future developmentally will look like because there is not much research on these babies. 

Alanna's 4 month Check-up

Alanna had a little bit of a health scare a few weeks ago. She had a fever of 99 and was very congested.  I took her to her regular pediatrician to get checked out and they thought she was coming down with RSV. Luckily after a few days of complete staying at home, some Tylenol and a cool mist humidifier, she was ok.  Once she was better we went back to the doctors for her well check-up and shots.  The doctor was pleased with her overall development but we're still working on gaining  weight and growing.  She actually made it on a normal growth curve and is in the 8th percentile for weight and 1th percentile for length. This is for typical 5 month olds not a premie growth curve so I was happy with that.  Her head is in the 40th which is a good thing. It's a good sign for brain development..  She weighs 12.10 ounces and is 23 inches long. She's making some good progress.  She smiled the whole time at the doctors and did not cry once.  She only cried for a little bit when she got her shots. I don't blame her though.  She's such a sweet girl.  She has her high risk appointment in January. I hope she gets even bigger then maybe we can stop adding extra calories to her milk.