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Update on Silas (another update post #18)

post #1 of 32
Thread Starter 

Thought I'd give an update on our sweet baby. Silas is five days old and will be 37 weeks tomorrow in terms of gestation. We're still working on the two main goals for discharge from NICU to go home - jaundice and eating. He's under the lights again today to get his levels back down, and hopefully that'll be it. The last milestone beyond that is having a full day of complete feedings by mouth, without use of the feeding tube. He's on breastmilk only, either nursing or bottle, and full feedings by either is ok for discharge. Right now, he's taking about half of a feed either by nursing or bottle, and the rest by feeding tube. This is very common for a preterm baby his age. 

He won't be home this weekend, and while disappointed as that was our own thought-up hope based where we thought he might be, we are reminded that things need to take place according to his readiness and God's providential timing, not ours. The nurse today felt it was realistic to expect up to another week here, which was hard to hear, but helpful for us to consider and process. In the grand scheme, a few more days is really negligible, and in the immediate future, those extra few days will be helpful for him to be here.  If we're prepared for a week, then we can rejoice greatly if it ends up being less than that.

What we hope to see and are praying for:
1. That jaundice would clear through the course of the rest of the day
2. That he will gain the coordination and strength to take a full feeding by bottle or by nursing

3. He's tongue and lip tied, like my second child was, so we are seeking the quickest remedy to have both clipped. The UW doctor who normally does them is out of town until the 28th, and the doctor who runs a clinic and clipped DD's tongue does not have privileges at UW to come to us. Having his mouth freed would help his feeding. I've most recently inquired whether one of the UW oral surgeons would be willing and available to do the procedure.
 
He is otherwise a very typical newborn and reminds us remarkably of our firstborn when he was a newborn. When he doesn't need to be under the lights, we can hold him all we want, and he's a very calm and "chill" baby (again, like DS was) and once he's done with the lights, he will move to an open bassinet since he maintains his temperature fine and is off his nutritional IV, and he has no breathing aids.
 

I am sleeping here in NICU and have spent two nights here. My recovery from birth is great, thankfully, but I am of course tired. While I limit how far I walk around the halls, I'm glad to have the ability to do a variety of things to meet Silas's needs and mine (with nursing/pumping etc) in a repeated fashion over the course of every 24 hours. It was a joy to me to have our children and my family come by today as I've been rather cut off from the world physically, and they plan to come again tomorrow for another short visit.

 

 

Before he had his IV out


Edited by CookAMH - 8/24/13 at 10:39pm
post #2 of 32
So glad thigs are progressing and Silas is doing well! A week must seem like forever but you are definitely right that a few more days will make a world of difference for him. Im hoping that his strength picks up quickly and his tongue and lip ties can be resolved so his nursing can supply all his food needs!
post #3 of 32
I'm so happy to hear he is doing well! I really hope everything he needs to accomplish happens soon and he can be home with his family. That's amazing you're able to sleep there in the nicu with him. Definitely keep us updated on that sweet handsome boy.
post #4 of 32

What personality in that face!!  He's so adorable.  Glad to hear he is progressing well and hopefully he will be home with the whole family sooner rather than later.  But it sounds like you have a really great attitude about it all.  Sending you lots of light and strength to maintain that patient and positive attitude.

post #5 of 32
He's so sweet smile.gif I hope he makes quick progress so you can get him home soon. It's great that he's on breast milk only, despite your feeding challenges- good job!
post #6 of 32
What a beautiful baby. It sounds like you are doing an amazing job being there for him and wonderful that you can sleep in the nicu to be near to him.
post #7 of 32

Thanks for the update! It's so great that you're able to spend the night in the NICU to be close to him and breastfeed. I hope the next week goes by really fast and you both can go home.

 

BTW, since I'm local to you, let me know if there's anything you need.

post #8 of 32
Oh cook!. Sending lots of good vibes your way. I hope Silas is able to meet goals easily, and that the TT/LT is resolved as soon as possible.
post #9 of 32

He is lovely, and I'm glad things are going well with him. I hope you can bring him home soon!

post #10 of 32

Love the pictures!  It's niice to hear that Silas is progressing.  Sounds like it's been an exhausting week.

post #11 of 32

What a cute little guy! Thank you for the update and pictures. A week can seem like forever at times like these, but he'll be home soon. 

post #12 of 32

Wow, he's beautiful.  Glad to hear things are going well and I hope you can bring him home soon!

 

So many babies already, and we still have quite a while until September!

post #13 of 32
Being at the hospital must be really challenging emotionally. You sound like your doing an amazing job keeping your head up!! Great to hear he is making great progress.
post #14 of 32
Oh, cook. I'm so sorry your family has to go through the nicu stress. He's so adorable, with those delicious cheeks. I hope you are snuggling him at home very soon.
post #15 of 32
Thread Starter 

Thanks for all the encouragement, it helps me!  The physical therapist remarked today, sympathetially, that NICU is an unnatural way to have a newborn and to begin parenting that newborn. It's true! This isn't how it's supposed to be. I keep reminding myself that it's short in the grand scheme of things. I realized last night one aspect that makes it harder is that I have two children at home, so my heart is torn as far as giving care. However, they are well taken care of, and I KNOW this is where I need to be for the time being, and Silas is my priority.  I got a break last night thanks to having enough of a milk stash, so I went home around midnight and got better sleep, waking once to pump. I saw my kids in the morning, showered and had breakfast and felt ready to come back. I feel great recovery wise, just a little discomfort here and there, and I just need to take one day at a time with his progress. I will rejoice when he takes a larger feed consistently because then discharge would follow soon after.  He's averaging about 50% by breast or bottle (more breast than bottle yay!) and the rest by feeding tube.

post #16 of 32

That's great that he's making progress, and that the pumping is going well. I hope you get him home with you soon!

post #17 of 32

go, Silas, go!

post #18 of 32
Thread Starter 

We're home!! Got home two nights ago. I can't tell you how wonderful it is to be home.  The steps that got us home involved a couple of things. Silas's jaundice cleared up.  I was compelled to research one night whether there was support for a family to do the gavage/tube feedings at home, to allow for early discharge for an otherwise stable preterm infant. I found some studies showing it to be a favorable option for a variety of reasons, with no readmission needed for the infants in the study. Silas fit the criteria for this so I brought it up with the doctors and expressed our strong desire to take him home in order to give him the time to mature at home, to reunite our family, and to reduce the costs of thousands per day of a NICU stay.   They agreed it would work, so the nurse trained me on administering the gavage feeding, the amount being whatever he didn't take through nursing for a particular feed, to fill him up to his total feed amount.  We were discharged Thursday in the early evening.  This was something where advocating for yourself or family had a significant impact on our life. I began to realize we'd otherwise be there a couple more weeks, just waiting for him to learn to eat.

By God's grace we were able to get in the next day (yesterday) with the doctor in our area who clipped DD's tongue two years ago (she's literally five minutes from us, and said she tries to fit repeat clients in quickly). She clipped Silas's tongue and lip yesterday, and he has already had improvement in eating. There is still maturing to do, but having his mouth freed has already helped him.    It'll probably be a couple more weeks until he's taking full feeds, which is right around his due date of Sept 8.

post #19 of 32
Cook, that's awesome news! I'm so glad you've got him home and that all is going well. Sounds like you're doing a wonderful job advocating for your family, and you're taking great care of your little guy. smile.gif
post #20 of 32
Yay, he's home! Sounds like he's doing great to me.
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