Whats next?

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.

Re : Whats next?

Postby preemomof2 » Wed Jun 16, 2010 03:01 pm

Also, right now K'Lynn is being monitored really close. Her entire stay she'll probably be monitored. Did you guys remain to measure the baby vitals when you bought them home and if so, how?
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Re : Whats next?

Postby preemomof2 » Wed Jun 16, 2010 10:58 pm

Do you know anything about Bradying? K'Lynn experienced that today after being switched from CPAP to the High Flow Nasal Cannula. I tried to research it but I haven't really seen anything that will give me a lot of information or anyone who has spoke about it.
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Re : Whats next?

Postby aggie95mom » Thu Jun 17, 2010 03:31 pm

Welcome! I learned very early on in my son's NICU days that every step forward was a reason for celebration and it sounds like your daughter is doing well respiratory wise, already off CPAP! What the nurse told you about bradycardia episodes is correct. Docs/nurses will often call them A's and B's for apnea and bradycardia. In one case your little one forgets to breath and in the other the heartrate drops too low. They often go together. From my experience with my 26 weeker, they were very common until he finally grew out of them around the time he left the NICU (78 days after birth). It can be scary to watch, but most times the baby just needs to be tapped lightly or his/her position changed to remind them to take a breath. And, thankfully, that's why they are hooked up to all those beeping monitors!

As for monitoring vitals at home, my son did come home with an apnea monitor, as well as a pulse ox (the machine that measures the oxygen saturation in his blood ... we called it his ET light). He came home on low flow oxygen, though, so we only kept the monitors as long as he was on oxygen (about 4 months).

I hope you are together with your daughter soon. You are definitely in good company here with a lot of gals on your side who have been there ... not that it's a club any of us wanted to join, but it's nice to know you aren't alone.
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Re : Whats next?

Postby preemomof2 » Thu Jun 17, 2010 03:38 pm

Okay thanks. It is definitely easier to digest knowing that I have someone to ask questions to that have been through it before. Yes this is also not something that I wanted to join. But its nice to know I'm not alone that its people out here going through this with me that can talk about different ways to handle things. Thanks again.
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Re : Whats next?

Postby season » Fri Jun 18, 2010 03:53 pm

Congrats on the birth of your little girl. It does sounds like so far your little one is doing well. I can imagine it is extra difficult not being able to see her often. You will grow in confidence for how to care for her before she comes home. She will still be smaller than most newborns but she will be bigger than she is now.
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Re : Whats next?

Postby preemomof2 » Tue Jun 22, 2010 07:52 am

Ok thinking ahead.. I was wondering what kind of sleeping funiture you guys used..
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Re : Whats next?

Postby somtamfetcher » Sun Jun 27, 2010 03:52 am

Congratulations on the birth of your daughter. As a new dad of twin preemies myself born at 32 weeks, I can share some of your emotions. I also sympathize with the distance issue. Our twins were born in Thailand, and the rules here are substantially different than in the US. So while I am allowed to visit them and stare at them through the glass, I am not allowed to interact with them.

This is similar although not exactly the same as your situation being an hour and half away from K'Lynn. Don't worry too much if you are not able to spend time with her in the NICU. There are thousands of babies born all over the world whose parents can not spend time with them in the NICU, and they all turn out just fine. Be grateful for any chance you get to spend with your daughter before she comes home from the hospital. Some of us didn't get introduced to our children until they were discharged.

We brought our son home 3 days ago after 18 days in the hospital. Our daughter is still there but progressing nicely and we expect to have her out in about 4-5 days. That makes our son being discharged at about 34.5 weeks and our daughter should be home at about 35.5 weeks. Both of them have sailed through their time in the hospital with no difficulties at all. From what I have read, these are pretty typical numbers for preemies without serious complications. These numbers seem to be largely independent of the extent of prematurity. There are simply certain reflexes that are not developed before this time.

It is dangerous to assume anything, but I would say you have a high likelihood of taking your daughter home during this time frame if there are no complications. Possibly earlier if you can handle feeding through a gastric tube and your doctor agrees.

In the mean time, don't beat yourself up. Kangaroo care and spending hours in the NICU is great if it is possible, but it is not an absolute requirement for a healthy child. Your daughter will be home soon enough, and my wife can attest to the fact that you will not sleep at all for a few days when she first arrives. Take the time now to get mentally and physically prepared.

As for sleeping, we are using a blanket on our bed between the two of us, and have no plans for anything more sophisticated. If you have alot of money you can spend thousands of dollars for a typical nursery setup, but results from millions of families globally show that it won't make any difference to your child. We have so far spent exactly $30 on a second hand car seat, alot of donated second hand clothes and a few bottles, and about $20 so far in disposable diapers. That's it.

There is nothing more comforting than looking over at night and being able to visually see your child breathing. You will constantly worry about them during the first few days. My advice is keep her close, and don't let her out of your sight.

One other thing. You should start pumping your breast milk if you haven't already and freezing it. Even if you can't physically go to the hospital, you can ship it there frozen in a box with dry ice. It'll keep just fine, and there is nothing better for the child. Even if the doctor's decide to use formula, your milk will keep up to 3 months in the freezer. You can give it to her when she comes home.

Congratulations again. It is such a treat to hold their small hands and realize that they are your children. No greater pleasure in the world.

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Re : Whats next?

Postby preemomof2 » Sun Jun 27, 2010 09:13 am

Thank you. This was great to read. I'm not that into spending a lot of money on sleeping equipment but I've heard that its not good to sleep with the baby in the bed. I really am just thinking bout using a bassinet so that she'll be everywhere I go. She has advanced so fast. She'll be at 31 weeks tomorrow and is 3 weeks today. I think she'll probably come home at the end of july or beginning of Aug. However, time is jus flying by so as long as she's doing well inside of the NICU all I can do is wait. I try to get my sleep in whenever I can but lately I've just been losing weight so I'm kinda focused on that and K'Lynn more than anything. It kinda of scary because within a week and a half of being discharged I lost almost 2oLBS, and it seems like I'm still losing it. Its kind of stressful. But thanks again
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Re : Whats next?

Postby preemomof2 » Thu Jul 01, 2010 04:05 pm

hello all,

so k'lynn is out of the nicu, & has been transfered to a level 2 nursery. did this happen to any other parents?
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Re : Whats next?

Postby tracym » Thu Jul 01, 2010 08:23 pm

That's great news :) At my hospital the nurses called that the fat farm...it's where the feeders and growers go to fatten up once their medical conditions are resolved/under control. Next stop after that is home!!

Congratulations :)
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