Totally In Love! Noah’s Improving!

Ronald McDonald basement wall:

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Well, I have absolutely nothing in the world to complain about. Nothing. We have a super fabulous accommodation that is keeping us really close to our fighting boy. Ronald McDonald housing is phenominal, and we’ve met so many fighting families while we’ve been here. I met a 3-1/2(ish) year old. I’m not sure what was wrong with her, but she speaks ASL primarily with a few English words. She can eat food, but has a g-tube. She saw Josh and I walking and in all ASL she asked me if I just had a baby (I still had all my hospital bands on and I was holding my belly walking very slowly. She may have also heard whatever it was we were talking about). I told her that yes, I had two babies. She asked me where they were, and we had a conversation about both. Then I asked her if I could ask about how she eats. Her mommy was feeding her though a g-tube, and when I met her I told her Noah might had to have one. She told me all about it. 3 years old. Signing. With mama interpreting for me. Sooo sweet and inspiring.

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Like his sister, Noah Gabriel is tough. Seriously though, he is! He has made such huge improvement, much faster than he was to be expected. His brain surgery placed him in the highest-risk wing of all four NICU sites, but he is now considered one of the most stable babies in there. It shouldn’t be much longer until he can be transferred into the progressive unit, in my opinion. Doctor’s have not given us a come-home hopeful date.. and they also haven’t performed another ultrasound to find out if his condition is severe hydrocephalus or hydroancephaly as described in a prior blog. We know he is diagnosed with L1Syndrome and ACC. I will ask tomorrow about the other part.

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Tonight we were allowed to hold him a little more than 3 hours consecutively. Our nurse tonight is absolutely fabulous. I’m in love with her, her attitude, and how she cares for Noah, and us! During the three hours we had with him, we had a few visitors. My mom and dad as well as Josh’s grandmother and three aunts have all had the opportunity to meet Noah now. I think they’re all pretty smitten ❤ Guests are still not holding him, and touching is minimal as he’s easily over stimulated… but thankful for our blessings, we love having him loved!

So … lets see the facts! ❤

    • His shunt surgical site is healing nicely.
    • He is completely off nutritional fluids. He is on a small heparin amount to keep his PCVC line from clogging. HOWEVER, if he continues well on the feedings tonight, nurse predicts his PCVC will come out tomorrow sometime.
    • Speaking of feeding, he’s taking a full ounce from a bottle, offered 40mL’s at a time. Sometimes he digs into the extra 10mL’s, and sometimes not, but doctors are happy with the ounce.
    • Happy? Say what? Doctors allowed me to start nursing. I’ll have an LC come by tomorrow to double check latch, but he nursed his feedings at 9pm and 12am tonight. He took 4mL’s from bottle after nursing and 1mL after his second feeding. We offered the supplement as there was no way to tell how much he got from me, and nursing is more difficult than bottles. This is great news simply because with L1, it was another he may never be able .
    • And by never being able, through research I’ve learned a lot of L1 babies don’t cry until months and months after birth. Guess what more great news is? Little man cries. No wait, he just screams. LOL. He’s got some lungs… some really strong lungs! 5 days old and he goes nuts. Not often, only when we move him until he is settled again. But, he makes sure anyone in the entire wing can hear him. And I love it! ❤

What else can I think of? I have yet to see his left eye open. I’ve only seen his right open. No one is sure, even the neurosurgeon, why this is happening. It could be low muscle tone, it could be pressure on the brain. It could correct itself as the pressure continues being relieved or he could end up wearing an eye patch to try to make those nerves and muscles reach better. We just don’t know.

I know everyone had/has questions and needs/wants answers. There are still a lot of unknown questions. More than I can even think of. Some I have myself include how is muscle spasticity and how hypotonia will affect him. Will he walk? How’s his brain? How’s his lifespan? Will he need hand surgery or just splints? Can he learn to write? Well, we will have to wait years for some of these answers. But tonight I bask in the greatness of his accomplishments in only the first 5 days of his life. God blessed his doctors with their intelligence and ability to perform good strong medicine.  And he blessed Gabriel with life. He blessed Josh, Kara, and I with the fourth member of our family ❤ We are whole. We are full. And we are thankful!

Thank you to ALL of you for praying!

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PS: A friend of mine, and follower of Noah, MaryAnn, is selling the nail wraps for Noah Gabriel. She and a friend of hers created hydrocephalus awareness wraps just for him, although any of the patterns for sale go toward Noah too. If you want to purchase a wrap, take a look at my facebook page for how to join the or I think you can click here and join directly? Please let me know if you can’t figure it out and I’ll see how to help you….

 

PSS: I saw Kara yesterday. She ran up to me and was so excited she started crying. She tapped my belly wanting Noah Noah Noah. I told her Noah wasn’t there, he was sick in the bed at the doctors. When she found out Noah wasn’t with me (to her, in my belly anymore) she cried and cried inconsolable bawling crying screaming. It took me a bit to calm her down. She’s so ready to meet her baby brother ❤

 

Previous Posts about Noah:
What is Wrong with Our Baby Boy?
Baby Boy Eagle Has A Name! He’s Born!
My Two Day Old Warrior

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8 thoughts on “Totally In Love! Noah’s Improving!”

  1. first of all Congratulations on your little Man’s safe arrival!
    My youngest is almost 8 and also has L1CAM, and All of the things you wonder about and questions you have, I had them too. My Favorite bits of advice are; Don’t worry about the what-if’s, live each day & celebrate the little things. Our Boys are going to do Big Things, even if it takes them a lot longer to.
    Logan can now write his name with some help, and he can use his legs to push himself around the floor on a Radio flyer toy. It has taken him almost 8 years to to do it but he can.
    A friend once told me “you can take a lot of things away, but you can’t take HOPE, there is always Hope! You and your family are stronger than you know, Noah WILL surprise everyone! Good luck on your L1 journey.

    1. Brenda, thank you for sharing your successes with me! It’s nice not to be alone, and it’s inspiring to read “success” stories so to speak. I will say …. Keeping things in perspective is what is helping josh and I. Moments to reflect and just be. For me, it was going outside and having a daytime and night time again. For Josh, it was spending quiet time alone in the waiting room where it was complete silence tonight. Our boys are certainly amazing, that is for sure – with purposes in life.

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