Admitted to Children's - Update! Post 70 - Page 3 « Back to Group Discussions

[shastalily]

That's great news!  I'm  so happy it went well.  Continued prayers.
 

[rozziemama]

Thinking of you and your sweet baby girl - so glad everything went smoothly and hope you got much needed rest, mama. Many, many hugs.

[cristeen]

A real quick update here...

She came off the ventilator yesterday and is breathing on her own.  Today they cut her blood pressure meds in half and she's still looking good.  They also removed her catheter and are happy with her urine output right now.  She's still in the critical care ward until her chest tube comes out, but they're thinking that'll be in a few days, since it doesn't seem to be producing much at the moment.  Sounds like once that's out she'll get moved back to the NICU.  We won't know for a few days whether her suck/swallow was damaged by surgery - her throat has to heal from the vent tube before we'll know that.  If it was damaged, that's a 6 week recovery period and she'll have to relearn suck/swallow once she's healed.  I'm really hoping not.

Also found out today that the hospital is going to require us to learn infant CPR before we can bring her home.  That's a little bit freaky feeling.  Not sure why that's any more freaky than the rest, but there you are...

DH will be working from home for a while as he can.  At least until she comes home, possibly beyond that a bit, depending on her condition.  The plan is that the 5 hours DS spends in therapy every day will be DH's time to do work, and my time to spend at the hospital.  I'll come home for dinner and DH'll spend the evenings at the hospital while I take care of bedtime.  Bedtime this last week has been really rough, as DS is reacting very badly to me being gone so much.  Last night he screamed all the way from his room to ours at 3 am, crawled into bed with us and was fine again.  Of course DH and I were on an adrenaline high by that point... but I'm hoping me taking back bedtime will help him cope a bit.  He has been asking for the baby every day though, which is so sweet and makes me cry at the same time.  

2 nights of solid sleep though have me back to a functional level, although I'm hoping for a few more nights of solid sleep, since I am still worn out. 

I have a freezer full of donor milk waiting for her and the hospital will be getting milk bank milk for the rest of her stay (once they start feeding her).  And I have a few donors that are willing to sit on their milk until she comes home from the hospital so we can get some more space in the freezers - never thought when I packed them full of pp food that I'd have to be contemplating dumping the food to make room for milk. 

I really am struggling with coping with the level of support that has come our way this last week.  I never expected this, even from family, but especially from complete strangers, and it's really faith restoring.  DH is a cynic and is really having a hard time with the adjustment to his world view.  People really are good at heart when you give them the chance.  It's truly amazing. 

Ok, DS is asking for some lunch, so I'm going to get back to my day with him.  DH asked for Father's Day at the hospital, so I'm spending time with the monkey. 

[Sky]

The progress is great news Cristeen sending many prayers and healing thoughts to you and LO. I found it amazing how much support we got when DD was in the NICU for 4 weeks truly a blessing. BTW yes when you have a LO in the NICU it is usually required to learn a CPR video we also had to watch other videos because she was preemie.  So don't let it alarm you hugs!

[lightheartedmom]

Cristeen, so glad she's making progress. You've been in my thoughts and prayers these last few days! It's great you guys are finding such overwhelming support. I hope things start to improve with your DS and that you can get enough rest!

[lindsayjean]

So glad she is doing well.  Since we'll be there soon.... what part of surgery affects suck/swallow?  We need open heart surgery and nobody told us that as a side affect.  Hoping chest tubes come out soon!  Thinking of you guys!!

[BubbleMa]

I'm glad she's doing so well!  Hang in there! 

[shastalily]

It's great to read your update.  I'm glad she is doing well.  How wonderful to have so much support!  You are in my thoughts and prayers.

[cristeen]

They have her on positive pressure ventilation right now, and OT is refusing to do the swallow test until she can breath on her own, so they said they'd start tube feeding her tonight.  The initial rate they mentioned was 3.5 mL per hour, which is about 1/10th of an ounce of milk (milk bank milk, which I had to request specially but actually got approved!) per hour.  Since she hasn't had anything in her tummy for a week now, they have to move slowly. 

Her chest tube came out this morning.  It did cause some breathing problems (hence the PPV), but they're hoping that those will clear on their own given a little time.  She's down to just a few meds now, and with luck they'll start removing some of her lines soon.  The cardiologist indicated this morning that she should be able to be moved back to the NICU today or tomorrow.  She's still on morphine for pain, and she can't really cry, but hopefully a few more days will resolve both of those issues.

Another day or so and we may be able to hold her again.  The lactation consultant asked the nurses today about that - since I need all the help I can get with my milk supply, they want me kangaroo-ing ASAP. 

Originally Posted by lindsayjean 

So glad she is doing well.  Since we'll be there soon.... what part of surgery affects suck/swallow?  We need open heart surgery and nobody told us that as a side affect.  Hoping chest tubes come out soon!  Thinking of you guys!!

It may not be a concern for a bigger child/person.  The nerve that controls the vocal cords runs right behind the heart, so we were warned that it could take damage during the surgery (they said "stretched").  If that happened she wouldn't be able to swallow until it healed.  A lot of the risks we had though were because of her size.  She's still only 8 lbs, and everything is so close together that the risks were increased. 

[sosurreal09]

Just saw this! So sorry Cristeen!
 

[cristeen]

Today they transferred her back to the NICU and I got to hold her!!

She's doing wonderfully, I even got to feed her (with a bottle) today.  Tomorrow they're going to let me try to BF. 

Her IVs have started being removed, since they don't need (so many of) them any more, and it's looking like she'll be coming home soon-ish.  They just have to make sure she can eat and gain weight on her own first. 

[forestmushroom]

Originally Posted by cristeen 

Today they transferred her back to the NICU and I got to hold her!!

She's doing wonderfully, I even got to feed her (with a bottle) today.  Tomorrow they're going to let me try to BF. 

Her IVs have started being removed, since they don't need (so many of) them any more, and it's looking like she'll be coming home soon-ish.  They just have to make sure she can eat and gain weight on her own first. 

Cristeen, so happy that you got to hold your little E! 

So glad that everything seems to be going as smoothly as possible and you will all get home soon. 

Sending good thoughts and prayers.

[BubbleMa]

Wonderful news! 

[JynxGirl]

Such wonderful news!!!

I'm so glad you got to hold her!!
 

[lindsayjean]

Oh they didn't tell me that risk when we were thinking we needed OHS the week we were in (also about albs at that point) ... maybe they would've if we gad decided to do surgery  then.  I just found a message board for moms of kids with heart problems, let me know if you are interested!  

Soooooo glad you got to hold her!!!!!!  That was so emotional for me after almost a week of not getting to hold my baby.  I haven't really set her down much since.... and its been over a week now lol.  

Sounds like she rocked it!!!!  What a fighter you have.

[Astraia]

That's awesome, Cristeen, it sounds like she's doing great. So glad you got to hold her, it must have been great after all this waiting.

[Sky]

yay! this is wonderful, I am so glad she is doing well yay!

[cristeen]

So I walked in this morning to discover that her PICC line was gone.  Apparently it came out this morning and they decided not to replace it.  It was her last IV line, so now she just has an NG tube for feedings.  She hasn't been feeding on her own, and she's been puking everything up, so they started feeding her through the tube.  But this morning I got her to latch on the breast and drink some.  And then this afternoon we gave her almost her entire feeding by mouth.  Once she can take a full feeding (2 oz or so) by mouth every 3 hours and keep it down, then she's ready to come home.  I'm hoping that'll be beginning of next week. 

This weekend I'm going to coordinate some more milk pick-ups, and see how much of the food in the freezer we can eat in one weekend (I hope it's hot this weekend - it'll make ice cream more appealing) to make room for the milk.  So that next week when she comes home we have a fully stocked freezer (it's already got quite a bit of milk in it, but more doesn't hurt). 

[Astraia]

That's fabulous Cristeen! She's moving along really well- hopefully she starts keeping things down soon.

[rozziemama]

Yay! What a great update and what a strong baby girl you have Cristeen!
I hope mommy and daddy (and big brother?) are also hanging in there...