10 days!!!!! not happening...the countdown is on again

[Joyful Mama]

IF all goes well, Asher will be coming home in 10 days!! They are taking him off his caffeine on Thursday (once he's 35 weeks), and then he has to go 8 days without an apnea or brady. As long as he does that and feeding is going well, we can take him home! I'm not too worried about the breastfeeding, because he's doing AMAZING! they're not topping him up when i BF anymore (3 times per day, will be 4 by Thursday), and i'll be bunking in at the hospital starting Friday or Saturday so I can do one of the night feeds, and we'll be moving it up to all BFs from there. i'm just really hoping that he does okay without the caffeine. please pray that he does well without it, and that we can take him home soon!!!!!

his weight was 4 lbs 10 oz tonight. we signed the consent for the Synagis, so as soon as they do that, he'll be moved to an open-air cot.

[raeinparis]

yay! you must be delighted that asher is getting ready to come home! and excellent news about the breastfeeding.

[Amys1st]

Uh Karen, hate to throw a huge rainstorm on your parade, but in your mind and when speaking to people, add another week to the date. The caffiene takes about a week or so to wean and then it may bring back the apneas. He also has to pass the carseat test and thats only if he goes 5 days w/out any As or Bs. I dont mean to do this, but you have been thru so much like the rest of us and I want you to have an idea what the next 1-3 weeks will bring. But congrats on Asher doing amazing!

[felix23]

I hope that everything goes to plan and he gets to come home soon, but do try to prepare yourself just in case things get delayed. I was heartbroken when Lilly didn't get to come home when they told me she could. Sending coming home vibes your way!

[Joyful Mama]

Originally Posted by Amys1st

Uh Karen, hate to throw a huge rainstorm on your parade, but in your mind and when speaking to people, add another week to the date. The caffiene takes about a week or so to wean and then it may bring back the apneas. He also has to pass the carseat test and thats only if he goes 5 days w/out any As or Bs. I dont mean to do this, but you have been thru so much like the rest of us and I want you to have an idea what the next 1-3 weeks will bring. But congrats on Asher doing amazing!

i know, i know! it's 10 days MINIMUM, but it's nice to be talking about going home, KWIM? we're trying not to be too positive, but he is doing VERY well. they have already started to wean him off the caffeine, and he's had no problems. he'll be off it completely tomorrow - i guess we'll see how it goes. i think they usually do the carseat test a day or two before discharge. i'll definitely keep you posted!

[intorainbowz]

Yay. Hurry home Asher.

[susienjay]

Originally Posted by Joyful Mama

i know, i know! it's 10 days MINIMUM, but it's nice to be talking about going home, KWIM? we're trying not to be too positive, but he is doing VERY well. they have already started to wean him off the caffeine, and he's had no problems. he'll be off it completely tomorrow - i guess we'll see how it goes. i think they usually do the carseat test a day or two before discharge. i'll definitely keep you posted!

That's great he's doing do well. It's awsome he's breastfeeding so well. Lydie's due date was last week and I'm still only able to get her to nurse 1-2 times a day.

My twins wound up staying about 2 weeks longer than we were told (we had 3 different discharge dates and one or the other would have an apnea- it was so frustrating to keep starting those 5 days over).

[ksera05]

yay!!

and I'm not going to rain on your parade except to say that the apnea count can start over a lot. Is he coming home on monitors? We used that to our benefit - they released her 2 days after a major spell, which is unheard of in our NICU, because we had monitors and we threw a huge fit.

[Amys1st]

Maggie unded up coming home on caffiene and monitors and O2. That caffiene is way expensive-like $14 bucks a day out of pocket.

Also, dont tell people the date and dont tell when he is coming home. We told people Maggie was coming home a few days after she did so they stayed away.

[sehbub]

Originally Posted by Amys1st

Maggie unded up coming home on caffiene and monitors and O2. That caffiene is way expensive-like $14 bucks a day out of pocket.

Also, dont tell people the date and dont tell when he is coming home. We told people Maggie was coming home a few days after she did so they stayed away.

Samantha came home on the caffeine too. Luckily (thank Goddess!!!!) our insurance covered it, so we didn't have to pay anything out of pocket.

And we told people when she was coming home, but told 'em they couldn't come visit until we were ready. That was almost a month.

Congratulations on getting him home soon!! Keep us posted.

[Joyful Mama]

i think they do things way differently in Canada...they don't send babies home on monitors, and they have to be off caffeine. what requirements/guidelines did your NICUs have for discharge?

[Amys1st]

Originally Posted by Joyful Mama

i think they do things way differently in Canada...they don't send babies home on monitors, and they have to be off caffeine. what requirements/guidelines did your NICUs have for discharge?

Here they send some babies home on the monitors, O2, and caffiene for various reasons, usually having to do w medical insurance. Others for reasons of- they do better thriving in the home environment than the nicu environment. But that said, apnea spells should be none for at least 5 days and then they will do the carseat test. They take the amount of time it takes you to get home from the hospital and double it. Then they test to make sure the baby dosent have any spells.

[susienjay]

Originally Posted by Joyful Mama

i think they do things way differently in Canada...they don't send babies home on monitors, and they have to be off caffeine. what requirements/guidelines did your NICUs have for discharge?

I think it varies by hospital in the US. I had my twins in OH and the hospital there wouldn't discharge on caffeine (my twins weren't on it but another baby near them was and the dad got into a big argument with one of the Neos because they wouldn't discharge her until she'd been off caffeine for 5days). That same hospital supposedly rarely discharged with monitors. I didn't see any babies go home on them and that was part of the reason why my babies stayed so long. They were nippling all feeds for almost 3 weeks before discharge.

My youngest dd I had in Maryland near DC and that hospital seemed to give most of the babies monitors. At least that's what several of the nurses told me. My dd did come home without one though.

[ksera05]

Originally Posted by Joyful Mama

i think they do things way differently in Canada...they don't send babies home on monitors, and they have to be off caffeine. what requirements/guidelines did your NICUs have for discharge?

At my NICU, babies (especially micropreemies) routinely come home on oxygen, basically I think because if all the baby needs is O2 the insurance company forces them out the door With oxygen comes a pulse oximeter that is either continuous or spot check (they're supposedly two different machines...we have a continuous one) and an apnea monitor.

In my daughter's case, she had a HUGE spell the morning she was going to come home, after going quite a few days without one. We already had the apnea monitor so we really pushed them to let her go, pointing out that there wasn't anything that they could do there that we couldn't do at home. We ended up winning, although we did get somewhat lucky in that we had one of the more "liberal" doctors discharging her. If the head neonatologist had been discharging her, she probably wouldn't have come home for a few more weeks. :

She had a few more spells once she came home. She then outgrew them and we got taken off the apnea monitor this week.

Sydney had been off caffeine for quite a long time when she was discharged so I have no idea what the rules are there...

[jkpmomtoboys]

Originally Posted by Joyful Mama

i know, i know! it's 10 days MINIMUM, but it's nice to be talking about going home, KWIM? we're trying not to be too positive, but he is doing VERY well. they have already started to wean him off the caffeine, and he's had no problems. he'll be off it completely tomorrow - i guess we'll see how it goes. i think they usually do the carseat test a day or two before discharge. i'll definitely keep you posted!

Congratulations on getting closer to coming home!

[snowbird25ca]

Originally Posted by Joyful Mama

i think they do things way differently in Canada...they don't send babies home on monitors, and they have to be off caffeine. what requirements/guidelines did your NICUs have for discharge?

First, yay on a possible discharge day. Sending good vibes that the weaning from caffeine goes well. I was so nervous when they stopped ds's caffeine. (The neonatologist on that week preferred to stop cold turkey - said babies self weaned as they gained weight anyways...)

I'm in Alberta and I stayed in the hospice at our hospital so I could nurse ds as much as possible - or at least attempt nursing anyways. My room-mate had a little girl born at 28wks who had a lot of a&b's when they weaned her from the caffeine, so they actually were planning to discharge her home on caffeine. There was another baby in our NICU going home on caffeine too. So maybe it varies by NICU? Or maybe they just won't cross that bridge until they come to it?

[ella*enchanted]

Congrats on getting close!!!! I almost found that time to be the most frustrating because you can see the end coming, but it never comes quickly enough.

Evan was taken off caffeine cold turkey and he did fine. He did have brady's with feedings, but that was about it. We did come home on a monitor though because I swear Evan is/was the Brady King. LOL!

[Joyful Mama]

quick update while i'm home for a bit. i'm bunking in at the hospital until asher comes home, but i've got a few hours off right now because his next feed is gavage. thankfully the hospital is only 10 minutes away

asher is doing so well! he is now nursing four feeds a day (two breasts : one gavage), and since he is still gaining weight well (up to 4 lbs 12.5 oz now), last night i started trying one feed at night. the doctors, nurses, and LCs are so happy about how he's doing. they can't believe how well he picked up nursing - he has no problems at all! and at our hospital, it's apparently amazing for a baby to go home at 36 weeks, which it LOOKS like we'll be doing (keeping our fingers crossed for no more As or Bs - his last brady, which was self-resolved, was on thursday morning, so it COULD be friday (he'll be 36+1)...), so they're all pretty shocked about that, too. i'll keep you posted

[DoubleLove]

Seeing your words of mentioning 'discharge' brings tears to my eyes. I can remember so well the feeling I got when the neo's began discussing discharge planning. My DS actually came home earlier than they said (amazingly) and DD came home when they said, but that was only after I had a long talk with 2 neo's about how I was noticing her become distant and too over stimulated & stated my rationale and what I was willing to do about it.

Originally Posted by Joyful Mama

i think they do things way differently in Canada...they don't send babies home on monitors, and they have to be off caffeine. what requirements/guidelines did your NICUs have for discharge?

Normal discharge requirements were that they could take all their feeding orally for 24 hours, continue to gain weight, had no a&b for 7 days, passed the carseat & sleep study, and were basically equivalent to a one day old term baby. My DS met that at 36w3d. DD didn't but I sucessfully negotiated me assuming her care at home (I'm fortunately an OB nurse and have level 1 nursery experience). She came home at 37w0d with an apnea/brady monitor, caffeine, and an NG tube. The first few weeks were really challenging and I could see why it isn't commonly done that way. Nevertheless I knew it was better for Kiana to be home as the NICU was beginning to change her negativley.

I really hope discharge planning goes smoothly for you and your wee one. :

[Joyful Mama]

: you warned me, but i'm still disappointed...

he had a brady last night/early this morning , one that needed stimulation for him to come out of it. the doc this morning said she probed the nurses to see if maybe he could have come out of it on his own (and then she would have overlooked it - she wanted to let him come home!), but that both of them agreed that it was a significant drop. so we're starting the countdown again. as it stands, the earliest he'll come home is next thursday. :