Introducing myself - kinda...

[TMonster]

Hi, I am not sure if this is where I should be posting but I am not really sure there is a section for my questions and this one seems to fit best.

Did anyone know in advance their child would be in the NICU for an extended period of time? How do you prepare yourself emotionally for it?

My daughter is going to be born with a severe congenital heart defect. She is going to need major heart surgery within days of her birth and most likely twice within her first year and several times after that throughout her life.

She is going to have to stay in the NICU for 4-6 weeks under the best circumstances and possibly much longer. I don't know how to prepare myself for the stay and the surgeries and everything else that is going to follow. I am trying to get myself emotionally ready and know that I won't be able to bring my baby home right away and have so many limits to what I can do as far as feeding and touching and playing with her and I can't help but start crying and I havent even delivered her yet.

I know it may sound strange but part of me doesnt want to go through labor because I just want to keep her with me. I don't know how I am going to go through the process of a natural birth only to have her taken from me as soon as she is born. Part of me even wants a C-section because I think that will be easier on me emotionally.

Are there ways to make the coping with this easier? Am I just being overly hormonal and irrational? Should I get therapy?

I am trying to stay happy and still enjoy my pregnancy but its so hard for me when everyone else seems to be having a normal pregnancy and I know that I am going to be dealing with all these severe complications right away.

I can't stop crying.

 

[lilesMom]

hugs honey xxxxxx
i didnt know in advance my boy would be in neo for a while, he had a stroke after he was born. if it is anything like our hospital u will be fine. xx
it is horrible seeing ur babysick dont get me wrong but the staff there are utterly amazing and so helpfull. they look after the babies so well and can do soo much to help them .im not sur eif u can ever really prepare urself for it hon, id say enjoy ur pregnancy as much as u can for now and take it one day at a time or even one hour at a time in hosp. xxx hugs xxxx

 

[lilesMom]

ps im totally over possesive since i got simon home.
it does feel a little like the staff steal ur baby, soo irrational but hormones and feelings arent rational.
just try and keep in mind it wont last forever and ye will get to go home xxxxxxxx

 

[justhoping]

one day at a time....each day from start to finish...
it is very hard with your baby in the nicu...each case is different but knowing that the there in the best place they could be with the best care helps as well...
anytime i went further then the one day at a time I used to panic...a kind nurse told me to do one day at a time from start to finish and it helped me alot...
you going to have good and bad days.....

honestly i wish i can tell you a magic something to get through it...but there isnt all i can say is

i also brang tons of baby books and read them to my son so he always heard my voice even when i couldnt touch him... it helps alot as they recognize you and its comforting

 

[lilesMom]

how u doin now tmonster? any better xxx
hope so xx

 

[TMonster]

I toured the NICU on Tuesday, it was a terrifying experience. The neonatologist tried to be very nonchalant about it all so I wouldn't stress as much but it was kind of hard when she is pointing out all the different machines my daughter will be hooked up to.

Basically, I am going to go into labor naturally and I am going to opt for a vaginal birth with no epidural if possible so that I can head to the NICU and see my baby sooner.

After she is born I will get to hold her for just a moment. She said long enough to kiss her and take a picture and then I will have to give her to the neonatologist who will be waiting during my delivery and they will take her to the NICU. They will be inserting a pic line and giving her prostaglandin intravenously as well as monitoring all her stats.

Once I am allowed to walk around I can head over to the NICU and hold her hand and decorate her crib and possibly hold her a bit.

She will need an echocardiogram and possibly other tests which will be conducted over a couple of days and then the surgeon will review everything and determine whether he will attempt a "full repair" or the palliative shunt procedure.

If she has the shunt procedure, it will be 2-3 weeks before she is discharged and then she will have to return for the full repair in a few months. If he attempts the full repair, she will be in the NICU for 4-6 weeks assuming all heals well and then I get to take her home.

She will need to meet with the cardiologist once a month for the first year and then every 3 months and then every 6 months to monitor the leakage and possibly calcification of the homograft etc.

She will need more surgeries in the future but in an absolute ideal scenario she can have the full repair at a few days old and then not need a valve replacement until she is a teenager. In a worse scenario she will need surgery every 3-4 years or so until she is a teenager/adult at which point she can be fitted with a pig valve or at that point a valve made from her own stem cells and that will be the end of it.

I am terrified. I have no idea how long is normal to spend in the NICU each day, I have no idea how I am going to get past those weeks and I am worried about her getting an infection or having something else happen that will extend her stay even longer.

I am even more terrified about a premature birth in which case it will be even more complicated to operate on her and the side effects of the prostaglandin can become problematic.

This is all so overwhelming, I am just hoping for everything to go smoothly.

 

[lilesMom]

hugs honey u poor girl, its a lot to take in xxxxx
my boy simon had a stroke and we wont know for sure till he grows how he will be affected , but how I deal with it is just forget about it
not in an I don't care way , In a im gonna take one day at a time , enjoy him now and work on any problems that arise later if and when they do xx
we don't make it any better by thinking too far ahead and upsetting ourselves.
do one day at a time and its miles easier, if my head starts galloping on ahead, I rein it in it does no one any good, only stresses u out more xx
I know it is easier said than done xx
when simon was in neo, I sometimes fretted if I couldn't get down to him fast enough (I was still in hosp too with infection and high blood pressure ). I felt bad for not being with him enough and even thought docs would judge me if I wasn't there enough .
believe me , no one checks , no one judges, it is up to u and how healthy ur body is after birth as to how long u will be able to spend at a time there.
u don't want to neglect urself while she is in , cos u need to be fit and healthy for when bub comes home, xxx
big hugs sweetie xxxxxx

 

[Kellen]

We had absolutely no idea that our LO was headed for a stay in the NICU. I went into labor at 38+5 and she came the next day. However, after a successful round of breastfeeding she decided that breathing was optional. Seeing your baby hooked up to umpteen monitors and a breathing machine is a horrifying, but positive experience. In the end watching the heart monitor, CO2 monitor and respiration monitor became my favorite thing to do as it meant she was still alive and fighting to survive.

As for planning... Are you planning to breastfeed? If so I would advise asking for a hospital grade pump to be put in the NICU room before you even give birth. This will give you something productive to do. Because we wanted to exclusively breastfeed I was generally at the hospital from 9am to 6pm and then went back from 8pm to 11pm for feeding purposes. I also pumped every 2 hours at home so she would have plenty of milk while I was away.

However, since you will have an extended NICU stay I wouldn't recommend those long hours as it can become very boring and tedious in the NICU. I would stay for a couple hours in the morning and evening, but spend the rest of the time recovering at home and getting things ready for when your LO comes home. We had our carpets cleaned and windows washed during the 6 days before she came home. It was nice to feel prepared.

I wish you the best of luck with the rest of your pregnancy. If you think you need counseling now and after I would go ahead and set it up. I understand that you are grieving the loss of the perfect birth that everyone dreams of. It is terribly hard, but you'll make it. Our NICU nurses were amazing and we got to be very good friends with them. I hope your NICU stay is as positive as ours was.

 

[GettingBroody]

There's some good advice from other NICU parents on this - https://www.lifeafternicu.com/2013/05/free-printable-advice-for-parents-in.html

We spent 10 weeks in hospital with our lo - just accept that some days will be harder than others and take each day as it comes. There will be ups and downs and setbacks but the little NICU milestones (into a crib, off oxygen, wearing clothes etc!) more than make up for the hard times. And like the previous poster said we found the staff to be AMAZING! Good luck!

 

[GettingBroody]

As for planning... Are you planning to breastfeed? If so I would advise asking for a hospital grade pump to be put in the NICU room before you even give birth. This will give you something productive to do. Because we wanted to exclusively breastfeed I was generally at the hospital from 9am to 6pm and then went back from 8pm to 11pm for feeding purposes. I also pumped every 2 hours at home so she would have plenty of milk while I was away.

On the same note, our hospital had extra hospital grade pumps that parents of babies in the NICU could take home (with no cost) for the duration. Might be worth enquiring about...

 

[TMonster]

The NICU at my hospital has a lactation room with multiple breast pumps and booths set up for women to pump there. She will be on TPN for a while and then they will start her on my milk through tubes and then gradually shift to bottle/breast and work on the transition so that my flow doesnt make her choke.