Just feeling time "pressure"

[hedgehog]

OK, just need to get this off my chest... have not decided to weather I'll put this in my blog or not yet...

So Abi is doing well, she will be 36 weeks corrected gestational age tomorrow). She is off cannula now and at rounds it has been nice to hear "history of RDS, now resolved". However, she still has a brady issue. First she tends to brady with her oral feeds once in a while. She just gets too excited and gulps, or gets a bit tired and does not pay attention. Then, we have tried her off caffeine about a week ago, and she started to have B's that were tied to A's two days after that (something she has not done for a long time). So she is back on caffeine.

Here is the part that scared me today. We never really believed that she would come home at 36 weeks (which we were told would be the minimum stay for her), and have always aimed for Xmas homecoming. Well, with the 5 brady free days waiting period before discharge, she now has 2 weeks to figure out this whole brady and eating thing. Also we were told that if she dc's caffeine less than 10 days before discharge, we would go home with monitors. I really do not want to bring her home if she is not ready, and by goodness, I do not want to have her brady at home... But all of a sudden time until Xmas got so short... I know, I should breath in, breath out and stop hyperventilating here...

If you got this far, thanks for listening, just needed to get it out. In my mind, I know 2 weeks is a long time, and bets are she will figure it out by then, but still...

[DebSean]

Congratulations on your little girl

My oldest was born at 32 weeks and spent 5 weeks in the NICU basically due to the issue above. Something just clicked for him at 36 weeks and his episodes really started to subside and they were able to taper off his caffeine!! Hang in there! These little ones change by leaps and bounds just in one days time!!!

[sweet em]

The end of the NICU stay is just as bad as the beginning, although in a different way. I have no advice for you, but I know how you feel. Two weeks is both a short time, suddenly it will be here, and a long time...a lot can happen. I tried to tell myself not to have any expectations until my DD was 37 weeks...suddenly that was there and she wasn't ready to go home. Two weeks later, she finally was, and the last 4 days were so long...I knew she was almost ready but not quite. Hang in there, you'll make it, she'll improve and then WA LA! You'll be in "real life!"

[spoiledbrat]

I dont know if I can help but man you brought back some memories for me, Zoie came so close to coming home so many times but it never happened and we were devastated. I have to say that you need to take things one day at a time and not put a date on when you expect her home that way when she does come home its exciting and if she doesnt make it by x-mas for some reason hopefully you wont be so heart broken. Zoie was in the hospital for exactly 100 days and came home on monitors, we were like you and scared to death but if they dont feel like you cant handle it or she isnt ready they wont release her and I am sure you will do an awesome job in taking care of her Good luck and you and your family are in my Thoughts and Prayers.

Rhonda

[milkyrn]

Hi Natasha,

Boy you brought back memories for me as well. The last few weeks were pure torture for me. Every time they'd get close to coming home something would happen to keep them in for a few more days. Tori was much stronger and had less A's and B's all along and did really well with her feeds and we knew she'd come home first. Alli struggled along and I swore we'd be leaving her behind. Well she wasn't having any of that! The night before we were to bring Tori home we got an excellent report that Alli was coming too and they weren't going to need monitors! They just got it together in the last few days.

Hang in there and try to take it day by day...

[UKCat]

Hi Natasha

I'm another that you brought back memories for ! I checked out your blog and I could answer 'yes' to all of your 'You know when you're a NICU parent' list. My DS was basically a feeder grower from the start but my DD was the one with the As and Bs. DS came home about 10 days before DD and it was heartbreaking to leave her on her own. Since my husband travelled, it was very difficult to even get back and see DD some days. It seemed like we would take 3 steps forward and 2 steps back each day and we got close to bringing her home a couple of times but like someone else said, it really did all click one day. Mine were born at 31 weeks and DD finally came home at 38 weeks. It seems such a long time ago now - DD is 16lbs and DS is 17lbs and they are just about crawling and have no issues so far. Hang in there and take it one day at a time. Those last two weeks for my DD, she made remarkable progress so it is possible.

Hugs

Cat
XX

[hedgehog]

well, the "H" word has been mentioned today. We might go home on Saturday, if she continues to behave. I am so not going to brag right now about how she is doing , just too scared to jinx it, but to say, so far so good. It will surely make this hard holiday season a little brighter, if we can have her home.

[MomNC]

I didn't read all the responses....but.....

Nicholas and Caeden were due December 24 (born Aug 28). And having them home before their due date, and for the holidays......it was sooooooo important to me!!

Neither one made it home by Dec 24. Caeden was Dec 29....close! Nicholas was Jan 31. And you know what....it was ok. Christmas in the hospital wasn't ideal, but it was where they needed to be. And their homecoming was just as special, even if it wasn't "on time."

Don't rush it.....you are close, and it is easy to get anxious in the home stretch. But it is so much worse to bring your baby home....and have to bring them back. I did this with Nicholas, and it stunk. he was home 5 days....and back in for a month.

Hold on Natasha....hold on Abi! It is coming.....promise!

[hedgehog]

oh my ... Amy, that must have been so hard to have to go back. I think that I would be in tears if we have to do that. Did you go back to NICU or PICU, not that it makes a lot of difference, except that you know all the nurses and routines in NICU... Do you mind if I ask why you had to go back? That is one of my fears as well, that the docs will let her out too soon, though our attending seems to be a very cautious guy...

[MomNC]

Nicholas had surgery on his stomach for reflux and a g-tube placement. he seemed fine at discharge from NICU.

Five days later (and I will tell you the whole story privately, since it can be very upseting to some) he had to be helicoptered back to the children's hospital and brought into emergency surgery. He had a rare complication from the first surgery.

He was in PICU for a week, then med/surg floor for 3 more weeks. Home for good on March 5.

The NICU wanted him back. We knew everyone, they knew us. But NICU policy was once you leave the hospital, you can't come back due to contamination issues. But our NICU staff came and visited us all the time.

The complication didn't happen because he came home....it was going to happen one way or the other. But if he was still in the hospital, it would have been more controled. Like I said, if you want to know what happened....PM me.

My only point is that you ALL need to be ready. The calendar doesn't count. it is more upsetting to set these arbitrary goals, and if you don't make it...it is more upseting. We thought Caeden was going to be home by Thanksgiving......and it was another month!

Nicholas was in NICU 156 days, then another month stay. Caeden was in NICU for 123 days.

Yes, I couldn't wait to get them home....but that first Christmas was just as special...because I at least had them.