I am so sorry that it has been SOOOOO long since our last blog post.
A few posts ago, I was sitting in Jude's hospital room waiting for his nurse to bring the discharge paperwork for us to sign. It seems like that was so long ago but in fact we are only about two weeks from our half-a-year stay at MUSC.
I must be honest, it is quite strange being away from the hospital. We had a little routine going while Jude was still in the hospital and once he got home it took us a little while to get into a routine. For awhile we remained overtired (a term I have come to know quite well over the last year...there is tired and there is overtired!) and eventually we are starting to be a little less tired. But still quite worn out!
Jude seems to LOVE being at home with us! He really enjoys his sister and he certainly savors his extra snuggle time with mommy and daddy. He is quite rotten already and refuses to take his afternoon nap nearly everyday because he'd rather be held. Sweet little man.
He has enjoyed being outside (when it's not over 100 degrees, right folks?) and really enjoys rolling around in his stroller.
At least a few times a day Brian and I realize, "Wait, this really happened! Our son who had a 50/50 chance of survival is now at HOME. Sleeping in HIS crib. SNUGGLING with his mommy. LAUGHING at his daddy."
The Lord is GOOD!!!!
So, what does life look like for Jude right now?
Well, Jude starts out his morning bright and early at around 4:30am with a few throw ups (usually three). It breaks our hearts that he starts his day in such a miserable way. We respond to every throw up episode because we are so worried that he will not turn his head and therefore aspirate vomit into his lungs.
Usually, he falls back asleep until around 6 or 7am and we put two of his medications in his feeding bag. Most of the time he greets us with a BIG smile (gotta capture it with my camera soon) despite his morning of throwing up. We get him dressed and start the day with his big sister!
We sit down for breakfast and Jude practices his oral activities. We give him tastes of baby food with several oral motor tools and most of the time he is receptive. Since we've been home he throws up almost every time. We get so discouraged for him when this happens. We are still waiting to hear back from the local OT (who we have heard has a lot of feeding experience) about getting Jude started with therapy. We are so nervous that he is regressing. Will you guys lift him up in prayer regarding his feeding by mouth? Nearly every healthcare professional we've encountered has expressed that they believe Jude's ability to eat by mouth will be our biggest challenge. The thought of Jude being able to take food by mouth seems nearly impossible to me right now. He has so much work to do. But I am trusting that the Lord has plans to make a way for Jude to be a healthy, well nourished little guy....no matter what the methods for his feeding may be!
After breakfast, our little man takes a morning nap and he gets three more medications in his feeding bag. Jude is usually a big fan of his morning nap so he is usually up just before lunch and yep, you guessed it...lunch means more practice with baby food and oral activities. We all sit at the table and help Jude be a part of the social experience of eating. We all make exaggerated chewing faces and say, "num num num" a lot. I am pretty sure that he thinks we are a bunch of fools because of the giant grin on his face.
After another nap (and four more medications), we usually help him get in his work out (i.e. physical therapy exercises) and he enjoys some playtime with his sister (i.e. the crazy, snuggly wants to squeeze him all the time girl). Then the little guy gets a bath, some extra snuggles and he is off to bed at 6:30pm.
We usually head to bed at 10pm and give Jude his last round of medications (five more, friends) and try to get some sleep. Usually Jude wakes sometime between 2 and 3am...we are not really sure why...but he seems to think it is time to have a wild wiggle party. Literally. He wakes up and fusses a little...then he proceeds to wiggle like crazy and give his best attempts at extracting the tape on his face that holds down his ng tube. He does this EVERY. NIGHT. Makes us nuts and worries us to death that he will be successful at removing his only means of nutrition.
I guess I should explain...removing an ng tube is not small potatoes. Once removed, it has to be replaced and Jude HATES having it replaced. (Who wouldn't? Though I've never had it done, I'm quite certain I'd be pretty upset with someone shoving a tube down my nose, into my throat and resting in my stomach.) Replacing it is traumatic. Traumatic for him. For Brian. For me. Thus the reason why we worry EVERY NIGHT. Plus, I have this super fear that he will pull his ng tube out and that it will land in his mouth and continue to pump milk out, thus causing him to aspirate.
So, I bet you can guess what my next prayer requests are! :)
1) Prayer for management of his ng tube. It's been tough. But the little man needs it! This may sound silly, but please pray that we can find an effective way to tape his ng tube to his face. We have tried EVERYTHING and somehow it comes off at least once a day...if not several times a day. It may seems like a small worry....but it makes us a little nuts.
2) Our nerves. We are super thankful to have Jude at HOME. What a blessing to have him with us at all times...but sleep is scarce again. Mostly because of worry. Please pray for our fears and worries about Jude's throwing up and ng tube.
3) Please pray that the throwing up will go away completely and that the GI doctor (who we see on Wednesday (MUSC friends, we will be letting you know if we can swing by!) will have some answers and a plan for Jude's digestive system!
4) Please pray for Jude's oral feeding. The only way to get rid of this blasted ng tube is for Jude to eat by mouth. He has a lot of work to do and a long road ahead. Please pray that Jude will be receptive to all the work we do with him to help him learn to eat by mouth.
I know you've all been waiting for a few pictures of Jude at home! Here is one of our favorites...I hope to post more this week!