Jacob finally got to wear clothes today!It is the little things in life that make us so happy. I got to bath Jacob tonight, dress him, change diapers. It was almost like life was somewhat normal. Although bathing and changing him with the monitor wires was a bit tricky.
The Scary Stuff:
Jacob still does not have much sound when he cries. He has a whine but when he cries really hard its just a raspy sound. His vocal cords may have been damaged by the vent or during surgery. They said that this usually heals on its own it just takes time. It is scary though because when he cries really hard he turns blue (This is completely normal for hypoplasts). Its not a problem here when he is attached to monitors but at home I need to know when he cries so I can calm him down. Babies will cry but you don't want them to cry for a long period of time due to the low oxygen levels. So although it sounds funny to say, I hope he can cry LOUD before we go home.
Seeing Jacob turn blue is scary but I am learning what his base color is and what he looks like when he is upset and when to worry. Luckily he is pretty easy to calm down. I am also learning tricks like you can puff a breath of air on their face and that triggers them to take a deep breath. I am sure this will all become second nature to me one day but for now it's all pretty scary. I am trying not to listen to the monitors but to look at him because at home I won't have the monitors. Mainly I need to just know that if his sleep, eating or any other behavior changes then I need to have him checked out.
I think I won't sleep until after his Glenn (second surgery) lol.
Medical update:
Jacob is on room air and should be off oxygen completely by morning. The only thing left to tackle is learning to drink from a bottle.
Feeding:
He was getting continuous feeds. This is where they would give him a certain amount of breast milk over a 4 hour period. Today they switched to bollis feeds. This is where they give him more volume and do it over a 2 hour period, then an hour off. Next they will give it to him all in an hour with two hours off. This gets them more on a normal feeding schedule. When he switches to bottles he has to take it all in 20 minutes. Anymore than that would be too much of a workout for his heart and he would burn to many calories trying to eat. They still have not tried a bottle but should by tomorrow. Learning to suck, swallow and breath all at once may be difficult so pray that Jacob does well with this last hurdle we face before we can go home.
Now for what you came here for... PICTURES!
Wide awake after a bath from mommy!
Doesn't he look so cute in clothes!
Hanging out with Mommy!
Grandma holding Jacob for the first time.As always, thank you all for the continued prayers. We are so blessed to have so many people love our son and praying for him. God continues to hear the prayers and for that we are so blessed. Thank you all!
What a sweet baby!!!!! He looks so wonderful in clothes! Aww! I hope he does well with the bottle.
ReplyDeleteIf I haven't already said it, thank you so much for sharing your journey. It's you and other HLHS moms that help me prepare for my journey that will start in July.
Ask if they will send him home on a heart and oxysat monitor. Our hospital required it and although our insurance does not pay for it ($267/mo), it has allowed us to sleep much better!!!! We will only have it until after the Glenn. Jacob looks really good. Good luck with the bottle feeding!
ReplyDeleteWow, he is doing SO well - and looks so good! LOVE the pics! I second Nicole's comment on the pulse-ox monitor. We actually bought a refurbed one (the company was recommended to us by another HLHS mommy) for $500 - I can get the company's info to you if you like. Totally worth it, in my opinion - helps me sleep much better (although, I still can't wait to be past the Glenn as well!)
ReplyDeleteSorry to hear about his weak cry - but he hasn't been extubated too long yet, has he? Sounds like there's a good chance it will come back soon. As you know, Bodie has vocal cord paresis on one side - and don't worry, even if little Jacob has it, you get used to it and you will hear him. Mama knows, don't worry - I can hear Bodie from just about anywhere in the house even though his cry is still so weak!
And I totally relate to the comment about him turning blue. Bodie doesn't turn blue - he turns a deep burgandy, almost black. Freaked me out beyond belief the first time - but you get used to it, don't worry!
Hang in there mama - Jacob is doing great!
Aly did the same thing when she came off the vent. She had NO voice at all. By the time we left the hospital she was screaming as loud as any other baby. And the same thing with the turning blue. The hospital kept saying she'll learn, she'll stop doing it soon and they were right. It wasn't more than a few days. So glad to hear Jacob is doing so well!!!
ReplyDeleteThank you all for the advice. Amy, yeah he turns a burgundy color to. I say blue but burgundy is more accurate. Purplish. Anyway I know its something I will get used to, just scary right now. I will def. look into the heart monitor for home.
ReplyDeleteJacob was breathing a little to fast last night on the bollis feeds so they are going to try again today. Praying he does well so we can start trying bottles.
One day at a time.
Just curious, have you looked into having a home monitor? We have one, and many others do too... the doc just needs to order it with a letter of medical neccessity. It gives such peace of mind at home... and if there is vocal chord issues along with the heart, I cannot imagine insurance refusing! So glad he is doing so well, he looks wonderful, and you too!! Heart hugs, Joy
ReplyDeleteMy goodness! He's so handsome! Love the pics -- thanks for sharing!
ReplyDeleteChase had a paralyzed left vocal cord after his Norwood but his cry got stronger after about 4 weeks. Do they plan to send an ENT doctor over to do a bedside bronchoscopy to check his throat and vocal cords?
Totally random, but when we met with Chase's surgeon immediately following his Norwood, we asked him when he breathes a sigh of relief, and he told us not until after his Glenn! It's so true! But life after the Glenn truly is fantastic! In the meantime, keep doing what you're doing. Watch Jacob, not the monitors. You'll be home before you know it! :)