The ups and downs of this preemie mom life are crazy. It is an emotional roller coaster that's for sure. Just two weeks ago we were back to stage one. Well, Brian and I went to the hospital and had some tests done.
The results from this heart ECHO were excellent, not perfect, but much improved. In February Brian's ECHO was abnormal. They were watching the pressures in his right ventricle (the chamber of the heart that pumps blood into the lungs). His number was 41 and normal is 25. The Cardiologist said they expected an elevated number for him. Because Brian was born so early he had chronic lung disease, so his right ventricle had to constantly work harder than normal against his sick lungs. That made his number higher - 41. This week his number was 31. Down 10 whole points!! His lungs are healing! I got a call from our lung doctor late Thursday and he gave us the OK to go off oxygen officially! So we have been oxygen free for six whole days. YAY! Let's hope this time it lasts.
Our two additional night time feedings seem to be paying off as well. Brian is up to 16 lbs! I've been sending weekly weight updates to our pediatrician. She's pretty happy with the results. Now the challenge will be to keep him gaining weight while off oxygen. You can do it little buddy!
Brian's been working on his selfie face. Usually after we do our floor exercises and read some books I let him play with the phone. He loves it and tries to eat it!
I've been staying up and doing the late feed - about 11 or so - and then Carl wakes up early and does the 5 am feed then heads straight to work. Staying up late lets me have time alone and it's been great! I've been sewing up tons of leggings for our GingerCrafts show this fall. Rachel and I are pretty excited, and hoping it goes well! We both have quite a bit invested in this. And that lovely bowl of peaches is from the tree in our front yard. Delish!
We're starting him early with the CAT equipment. :)
Poor buddy was exhausted, I laid him down to quick go to the bathroom and I came back to a sleeping baby.
This baby is just so happy and cute! He laughs and giggles all the time and he's really starting to talk. He talks the most when he's really tired. He'll just rub his face back and forth in our chests while going on and on about who knows what!
We also had our first appointment with the Neuro-developmental doctor this week. Turns out she goes to our church and she knew about Brian through the prayer list! Brian really impressed her. She had only great, positive things to say about our little boy. We talked a lot about his progress and milestones and what a miracle he is for a 23 week baby.
Here's just a short list of all the things she couldn't believe:
He has no problem with his vision. He can track and follow everything even after his grade 3 ROP and eye surgery. We go back to the eye doctor next week.
He never had a g-tube and will eat from a spoon. Most preemies have oral aversions and need to be tube fed.
He is sitting up! Still a little wobbly but we work on it everyday.
He has never had any seizures and has proper muscle tone. He had brain bleeds in three parts of his brain and never suffered from any of this.
His head shape! I go on about this all the time, but the NICU at Helen DeVos Children's Hospital is amazing. A lot of preemies have an odd shaped head, or a "toaster head". Google it. :)
He is meeting milestones on time. Brian grabs for toys and will make eye contact and smile. All good things!
I'm sure there are more but she was very impressed. She told me just last week she saw a baby born at 23 weeks and weighing 500 grams (the exact same as Brian) and that baby has a trach (breathing tube in neck) is ventilator dependent with a g-tube for feedings (tube into the stomach) and totally not interactive. We really are so lucky to have our little boy. But what made me feel the best...She told me he is doing so well because he has me for a mom. I sorta got tears at the appointment. That makes all the hard work worth it! Then this nice lady doctor took my baby and had to show him off around the office. It was wonderful, and sweet baby boy just loved all the attention.
These are the wonderful NICU ladies!! We love them. Thanks for coming out to the lake you guys!
Charlotte loves Brian. Sometimes she gets a little too excited and gives him some "love pats". Soon Brian will be able to give some love back!
We are heading up to Minnesota this weekend to visit Carl's family and go to our friends wedding. It is a 7 hour drive with our little man, let's hope he sleeps the whole time. Say a little prayer!
I love this update!! What a sweet doctor. Reading that made me get teary, too. You and Carl are such wonderful, amazing parents. I don't know many people who could have handled even half of what you have been through, and raise a healthy, happy, thriving preemie on top of it with such strength, courage, and determination. I know that none of it has been easy, but your attitude and dedication is truly admirable. God is so good and Brian is a beautiful example of the power of prayer. We love you guys! And we're cheering baby Brian from afar. Can't wait to see you in September!!
ReplyDeleteOh, Lauren--so happy for you. Your updates always bring tears of joy. Love you all so much.
ReplyDeleteNow I have tears for sure! That nice doctor lady is right, he is the luckiest baby! So glad you had better news!
ReplyDeleteI cried happy tears too! Ditto stacy!!!๐๐๐
ReplyDeleteThis made me cry. That dr is right. Xo
ReplyDeleteThis made me cry. That dr is right. Xo
ReplyDeleteTears for sure! You ARE an amazing mommy!!! And what a miracle that little guy of yours is!!!!
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