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bladder exstrophy/surgeries?
my beautiful daughter was born 12/13 with bladder exstrophy which basically means her bladder is on the outside of her body. She will be having a 8-9 hour surgery on the 22nd and will be in the hospital for 3-6 weeks after surgery in traction. Anyone have any experience with extended hosptial states and not being able to hold their baby? I'm concerned that she won't be held while she is in traction. What are you supposed to do as a mother of a newborn when your child is in the hospital? I can't help but cuddle her extra right now because I know she won't be held in a few weeks...am I setting myself up for a disaster because she is constantly being held? Any advice would be wonderful!
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Re: bladder exstrophy/surgeries?
Welcome to the board, and congrats on the birth of your daughter. Our longer hospital stays were closer to the toddler age. DD2 did have multiple hospital stays starting before 1 month of age but they were usually 3-4 days at a time. I honestly didn't hold her very much though, even though it was allowed because she was content sleeping a lot.
My DD1 has bladder issues but nothing like what you are facing, I hope the surgery goes well for you & I also just wanted to link you a couple of facebook groups that I just found. Facebook groups have been a huge help in finding answers/others who are dealing with our specific diagnosis.
Again, good luck with the surgery & keep us updated!
https://www.facebook.com/groups/2261346099/?ref=ts&fref=ts
https://www.facebook.com/groups/445971600130/?ref=ts&fref=ts
Congratulations on the birth of your daughter! I have experience with a long surgery and a six week hospital stay where I couldn't hold my son because he was on a ventilator. These happened around 8 months old. Although, he was heavily sedated duringw those 6 weeks. I lived in the hospital during that time (they had a sleeping area for parents) and my husband went back and forth. It felt like I was in a fog the whole time. I was nursing, so pumping made me feel like i was doing something. Talk to her a lot, caress her head, gently stroke her arms. Just love on her as much as you can. Bring photos of her to tape to her crib. I was so glad I did this. Bring familiar things, like a mobile that plays a song she likes. Most important, though, is your presence. Even when sedated, I truly believe he knew I was there.
The surgery was 8 hours. Be prepared for it to be longer than they tell you upfront. We have learned this from several surgeries. Ask a nurse in the or to give you hourly updates on your cell phone. Bring snacks for you in case you don't feel up to going to the cafeteria.
You are in my thoughts!
My second son was born with a diagphramatic hernia, had surgery at 32 hrs, and was in hospital for 3 weeks. Unfortunately this was in the old Denver Children's Hospital building and they had no place for parents to sleep in the NICU. I spent all day at his side, then went to a hotel to sleep. I was pumping day & night so that helped me feel closer to him.
I would think that the nurses will understand your feelings and get her into your arms as soon as possible, however you should be able to touch her all you want.
Overall our hospital stay went better than I could have imagined and the NICU nurses was so wonderful.
My daughter was hospitalized the first 4 months of her life because she was 14 weeks premature. I could not hold her for the first 4 weeks. To keep myself busy, I pumped, a lot, and read up on my daughter's condition. Once I was able to hold her, I held her as much as I could. When she came home, she hardly left my arms, except after she went to sleep for the night. Since she came home from the NICU, she has been hospitalized 3 more times - usually with illnesses. I always stay at the hospital, and work remotely. I do all of her care (diaper changes, feedings, trach care), and basically shove the nurses out of room. When I am not working, or doing her care, I usually catch up on netflix. My daughter always sleeps better when she isn't held, so as much as I would like to hold her when she is sick and hospitalized, I know what she needs most is for me to leave her alone so she can recover.
I don't think you are setting yourself up for failure holding her now. Newborns need to be held. My suggestion for when she goes into recovery is to get involved in her care as much as possible. Learn all you can about her care, then help or do it as much as you can. And, even if you can't hold her, see what is allowed in terms of touching. One thing I did while I could not hold my DD was to place one hand on her head, and one hand on her bottom. This simulates the feeling of being held, and has calmed my DD down on a number of occasions. Even now, at the age of 2, I sometimes use this technique if she is having a particularly restless night.