Transfusion
On Weds Noah had a blood draw, and his hemoglobin had dropped to 7.2. By Friday he was so lethargic that he was desaturating, not nursing well, and his "awake time" was spent laying limp. I called Friday, and they determined he needed a transfusion. After spending much time on the phone, it just wasn't going to work to have it done in Mankato (frustrating!). Saturday he would have a transfusion in Rochester. Meanwhile Dave and the boys had a parade on Saturday. I was so sad to be...
Perfect
It is easy to get stuck on thinking Noah is not perfect like the other boys. To know that he won't achieve the same things the other kids is the hard reality. Against my own willpower, I dwell on his less than perfect future. 13 For you formed my inward parts; you knitted me together in my mother's womb. 14 I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. Psalm 139 There’s a song on the Hide ‘em in your heart album that quotes these...
Trust
In the last several weeks they have had to do extra bloodwork as we are watching Noah's hemoglobin go down. Hemoglobin is at 7.6, platelets and immature white blood cells have stayed almost exactly the same for the last several weeks. He has had some sleepy days where he has a hard time staying awake long enough to eat. Without realizing, I had grown accustomed to improvement, so hearing this news has been tough. "What if..." interrupts my thoughts. Can I trust God even if my baby needs to...
Just Noah
During our stay in Rochester, a friend of ours gifted us a newborn photography session for Noah. This the perfect gift as all of our photos from the first several weeks of his life were taken on our phones, dim and blurry. On Noah's 6 week birthday Liz brought arm loads of studio, and took amazing pictures right here in my living room. She gushed over the sweetness and the cuteness of my baby, and tenderly arranged him on beautiful crocheted blankets. She recorded him. Not the Down Syndrome,...
1 month old!
Noah is 1 month old on his due date today! Right on time, he has been awake and looking at things more intently. Sweet boy has also learned how to manipulate momma and grandma to holding him while he sleeps. I am thankful for: My sweet snuggly baby:) Insurance! We have gotten some BIG bills! (Did you know a helicopter ride to Rochester costs $24,000?!) Noah is nursing better! Big brothers who have been (mostly) gentle and loving! Calvin wants mommy to now (instead of insisting on "Grandma...
Going Home!
On May 9th Noah came to St. Mary's hospital, and on May 29th, he was discharged! It was hard to contain my excitement as we left those other mommas and their babies in the NICU. I am so thankful for the nurses and doctors who took care of Noah. There was one nurse in particular who gushed over Noah and how cute and sweet he is. She made little signs for me in the night using pictures of Noah. She listened and let me cry with her when we thought Noah was deaf. On those days when all I...
3 weeks old!
It hurt my heart this morning when during rounds, the nurse said he was 21 days old. Another "normal" thing I always took for granted with my other babies was snuggling our 3 week old baby on the couch at home. I can't wait to introduce Noah to life outside the hospital where where his brothers will poke him instead of needles, the too bright sun shine in his eyes instead of florescent lights, and the people around him love him instead of those who chart about him. The angel of...
Patience. (Days 16-18)
We are not home yet. I've been thinking about God's faithfulness through (what feels like) wilderness today. How impatient I am! How patient He is! First some good news: Noah has been off oxygen much of the day! He has been waking up to nurse, and has exclusively done so for the last 2 days. He's weighing in at 6lbs 1oz. His platelets have been hovering around 20,000, and have not dropped drastically for about a week. I just have to laugh about Noah's fickle heart! Cardiology now doesn't...
2 steps forward, 1 step back (Days 14-15)
Noah was so awake yesterday and nursed successfully 7 times!! This is a huge improvement!! Because he's doing so well, I got to move back in the room next door to the NICU, and I could nurse him overnight:) His platelets were down again, but because they have shown they can go up, we are waiting until tomorrow to see if he will need another transfusion. They did a chest x-ray and echocardiogram yesterday and discovered his heart murmur is causing his lungs to have extra fluid, which could be...
Good news! (Day 13)
Noah can hear! After failing twice, he passed the third newborn hearing test! His white blood count has dropped into the normal range, AND his platelet count went up all on it's own for the first time ever! He was off oxygen for about an hour this morning! He nursed 3 times in a row without needing a tube feeding, and was awake for longer periods! Happy, relieved tears shed! As I was walking into the hospital this morning, feeling unsure, I saw a flowery picture on the wall with the verse...