11 weeks **updated**

AlwaysSunny925

We are 11 weeks into our NICU stay and the rollercoaster has definitely slowed down, although it's still moving. 

Our little Ryan is doing wonderfully after his shunt surgery.  Just three days after it was put in he was taken off oxygen.  That was on Thursday and he is still doing great.  Today we gave him a bottle, and they are going to offer the bottle at one feeding per day for now.  He did great and ate around 12 cc's from the bottle.  So proud of my little guy. 

As I was feeding Ryan and enjoying a "normal" mommy moment, a neo walked in to let us know Aiden is having a bad day.  Ugh. 

Here's the short of it:  The neurosurgeon straight tapped his brain last Monday to relieve some pressure before they are able to put in his shunt.  They are waiting for him to get a bit bigger.  So today he is very irritable, desatting a lot and his HR is through the roof (after having a really good week).  They even mentioned reintubating him if he keeps desatting.  That word is like a curse in our house.  I think it has to do with the spinal fluid having built up in his brain again.  We are waiting on neurosurgery to evaluate him today.  They also took a bunch of blood cultures to rule out infection.  Man, I really hope they put his shunt in this week.  I can't stand to see my baby so uncomfortable and there's nothing I can do to help him.  And I really hate the waiting game.

So, while we are celebrating Ryan's first bottle feeding, we are worried about Aiden.  Talk about a rollercoaster. 

Update:  So they didn't reintubate Aiden.  They actually took him off nasal IMV and put him on CPAP, which somehow made him less apnic.  Weird but awesome.  Also, he is having his shunt put in on Tuesday.  I am so happy he will finally have some relief. 

 

 

njdcgirl

Man, with twins it must be so difficult to get an all-around good day. ((hugs)). Sorry A is struggling, and I hope they are able to do the shunt surgery soon. Hooray for R taking his first bottles - that is a HUGE milestone!

urbanflowerpot

I hated feeling helpless - I'm sorry you're going through this right now. It's one of the worst feelings, especially when it comes to your LOs. Twins make a double roller coaster ::hugs::

SushiNoMore

I'm sorry Aiden is having a tough day!  I'm glad to hear Ryan is doing well, though.  You'll be in my thoughts - keep us posted!

Denesdia

Prayers for you, mama, and prayers for the babies.  I was getting pretty fried in as the weeks seemed to go on and on.  One day at a time.  You are an amazing mama!

Mrs. Alice

So happy to hear good news!  I know from experience how tough it can be when you want to celebrate one twins progress but feel worried about how the other twin is doing.  T&Ps  to all of you. 

 P.S. I loved when mine started nipple feedings - it finally made me feel like more of a "real" mom!  Are you going to breastfeed?

adrielegorburu

The ups and downs of the NICU roller coaster were hard enough with one baby, I'm sure they are doubly hard with two - it must be frustrating to worry about one and celebrate the other. I will be praying for little A - I hope you have some really good days for both of them coming soon - keep us updated!

AlwaysSunny925

Mrs. Alice:

So happy to hear good news!  I know from experience how tough it can be when you want to celebrate one twins progress but feel worried about how the other twin is doing.  T&Ps  to all of you. 

 P.S. I loved when mine started nipple feedings - it finally made me feel like more of a "real" mom!  Are you going to breastfeed?

Yes, I would love to!  I just have to find out when they will let me try...I will ask tonight.

OscarQ

Wow, that is just a big old jumble of emotions - happy for Ryan, worried about Aiden.  Thinking of you guys.