Major milestones so far:
1) Off the breathing tube and down to oxygen nose prongs. The purpose for these is simply to keep his lungs from sticking together when closing, so he is breathing fine, they're just for a little extra help.
2) Recovering well and healing wonderfully from surgery. After final confirmation from the urology surgeon, Isaac won't have another surgery for at least 6 months, which is a good thing. They need him to grow to have more "real estate"(as they call it) to work with for the surgery. That surgery will be dealing with the bladder more, as well as his pelvic bones, which were separated at birth. Not exactly sure how all that goes, but we'll know more as the time gets closer.
3) Feedings of breastmilk through his G-tube are being upped and he is tolerating them very well. This is good! :) They will continue to increase his feedings by 0.5ml-1ml every day or every other day as long as he is absorbing the nutrients and not just pooping it all out.
4) His weight is currently up - Friday he was at 3lbs. 13oz. - woohoo!
Concerns at this point:
He's had some funky ups and downs with his blood pressure and oxygen and was looking pretty anemic yesterday, so they decided to give him some blood, which made him a good pink color :) They aren't really sure where his blood is going right now, since they have drawn very little blood since he received some two weeks ago. They're checking all possibilities to figure it out.
They also performed an ultrasound on his kidneys to see if they're functioning properly. We'll have the results of that in a couple of days.
I've gotten to give Isaac sponge baths, change his diaper, and continue skin-to-skin holding with him.
Isaac's gotten several gifts from various groups and people at the hospital - gift baskets, stuffed animals, blankets, and even a special preemie octopus, which he LOVES. More about those here. 
Isaac has really amazing nurses, and usually he has one or two who always take care of him. A couple of them who've been there since the beginning are really great in particular, Christine, who is Isaac's primary nurse, and Noelle. A primary nurse means that when she works, she always has Isaac, which is so awesome because she gets to know how he acts, reacts, communicates, etc. We are very thankful to have primary nurses we love!
Jack, our 8 year old, came with me this last Monday to see Isaac. Jack was ELATED to get to hold Isaac and talk to him. Jack loves babies, like REALLY loves them. He was always talking to Isaac while in utero and couldn't wait to finally meet him. When we put Isaac back in his isolette (bed) before leaving, he opened his eyes and was looking around. Jack started talking to him, and Isaac turned in Jack's direction and was listening. The nurse practitioner, Dana, said to Jack, "Did you talk to him a lot when he was in your mommy's tummy?" And Jack said, "Yeah." Dana told Jack that Isaac obviously recognized Jack's voice. Jack was BEAMING and had a smile from ear to ear! :)
We met with a Child Life specialist, Shannon, who can talk with kids about all the experiences and stuff going on in the NICU, to kind of help them prepare/understand about everything that can maybe be confusing or a little scary. She just answered any question Jack had about all the various wires and machines around Isaac. She also put together a special teddy bear for us to bring home that was fixed with the main things Isaac has, such as the G-tube, the stoma (with a colostomy bag), the nose prongs, and the PICC line in his leg. So cool! The kids thought it was AWESOME. Shannon even gave us a couple syringes and a line to show the kids how Isaac is fed through the G-tube.
What I love the most about the bear is that the kids can have it at home to get used to seeing different things like that so when Isaac comes home it's not too much of a shock. And they can also learn how to be gentle and understand how his stuff works.
Natalya, my oldest at 11, came with me yesterday, Friday, and we had a wonderful time together. She was also very happy to finally meet Isaac and get to hold him, although Isaac and his nurse and a neighboring baby had so much going on yesterday we didn't get to hold him till after we'd been there for 6 hours. 😳 But, we made the most of it and spent a lot of the time holding his hand and being with him during most of his procedures, and that was special too. Natalya really enjoyed being there and talked to Isaac a lot. :)
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| Bird on the chair - too close for comfort! |
There is a Kids Zone at the hospital where usually patients can come with their visitors and play, but since Isaac is in the NICU, I've been able to take the kids to the Zone to play. It's a pretty awesome place - foosball table, pool table, air hockey, video games, board games, books, and themed parties from time to time. Yesterday, they had a Cinco de Mayo party with snacks, games, and arts and crafts. So that's a really neat and fun thing the kids and I have been able to do there.
That's pretty much all for now. Right now the hardest part of everything is having to be either here without Isaac or there without the rest of the kids.
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| From the video feed online. He knows I'm watching! :) |
Stephan comes to see Isaac on his day(s) off and we go together. That's been a nice time for just the two of us actually. We're always talking about how much gratitude is in our hearts for everyone who has made and is making it possible for us to not only see Isaac but also not have to worry about meals all the time. This is a difficult but definitely blessed time for our family. 😊
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