New mom of micropreemie

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.
recca
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Re : New mom of micropreemie

Postby recca » Sun May 04, 638600 9:44 am

Thank you to everyone for your suggestions and support.

I am feeling much stronger, and I think it is because I have been taking more naps during the morning and evening in between pumping. Instead of just getting the 5-6 hours of sleep at night I am getting in several 1-2 hour naps during the day and I am finding that I am emotionally much more stable.

Thanks for all the positive stories as well. Friday I had a nurse tell me that it would be a miracle if Lily didn't have serious long-term problems given her age and weight, and a hospital administrator told me that I should sign up for disability for Lily. It was not a good day. But today I feel much stronger and much better. I have also been taking a stronger stance with the nurses in the NICU and have been requesting to diaper, turn, and feed her. Most of the nurses have been extremely receptive to that and have helped me out a lot to learn how to position her properly and arrange the wires so that they aren't hooked on anything.

Anyway, Lily is doing really good, she is tolerating her feeds, which have been increased to 2ml every 3 hours, and she is maintaining herself on 2L of high flow oxygen, which fluctuates between 21% and 35% depending on her saturation level. The nurses are telling me that she just needs a bit more time to adjust to the lower pressure of the oxygen and to not worry about the increased oxygen level (when she was on 3L she was only at 21% oxygen) or that she has had some bradys since moving her down to 2L. They are saying that she is doing really well and that the increased oxygen and bradys are temporary and expected reactions to the lowered pressure.

So I have a lot to be grateful for, including that I found this board and all the support here. :)

pixie323
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Re : New mom of micropreemie

Postby pixie323 » Thu Apr 24, 638600 7:53 pm

Hi Recca,

Congratulations on the arrival ov Lily!! She sounds like she is doing great :)

I had a 29 wker in March 08. He weighed 1 lb 12 oz... so very similar to your little one. We had many scares, such as NEC, infections and very slow growth while we were in the NICU, HD and SCU. We've also had other complications since coming home, which haven't been related to being a prem. But now my little man is doing great and is reaching all his milestone within normal limits for his corrected age.

It is a scary journey having a prem, but looking back, it goes so quickly and is such a special time.

Definitely take the other ladies advice. Take care of yourself and rest up. You've just gone through major surgery and when she gets home, then you really won't get much time to recover.

Please keep us upto date on how she is going!!

Lisa.

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panguitch02
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Re : New mom of micropreemie

Postby panguitch02 » Wed Apr 23, 638600 7:18 pm

Rebecca,

Please also take care of yourself. You just went through major surgery, PE, and HELLP. I know you want to be with Lily every minute, but you also need to heal. She is with the highest paid babysitters around, so get a little extra sleep....while you have the chance.


jacobkaden
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Re : New mom of micropreemie

Postby jacobkaden » Tue Apr 01, 638600 6:59 pm

First of all, take a deep breath, exhale, deep breath, exhale. The best advice given to me was to only worry about preemie conditions that your daughter is actually diagnosed with - don't read everything or you will drive yourself crazy with worry. The good news is she's a girl - they fare much better and even with the IUGR, she is very much acting like a 29 weeker. To be off the vent so soon is fantastic!

To echo what the others have said, you have to take care of yourself during this stressful time. The driving back and forth must be exhausting, as well. Try to get some local accommodation, as Kara mentioned. The Ronald McDonald house is awesome.

Your little miracle baby will be home before you know it!

amiejo
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Re : New mom of micropreemie

Postby amiejo » Mon Mar 31, 638600 2:37 pm

Hi Recca,
I really dont have alot to add to what the others have said. My first was also 29 weeks and was only 1 lb 9 oz. Because of feeding issues in the beginning, she lost down to 1 lb. They had to take her feeds very slowly until her digestive system matured some little by little. We had a definate roller coaster ride with her between feedings and breathing but she did well. Like the others said, I went through every emotion possible while she was in the NICU and sometimes all in the same day! We ended up spending 87 days in the NICU.

Alyssa is now 7 and in the second grade. She is doing wonderfully. She isn't the most athletic kid around and is still very skinny (but very tall). But she doesn't have any major academic or behavioral issues. I am thankful for my miracle every day and take pride in every accomplishment she has. Sometimes they are just that much more special because I know how far she has come since those first few days that she had to fight for her life.

I wish you all the best and please feel free to come here and vent or ask questions. The ladies here are very supportive. We will be thinking of you and looking for updates on her progress.

recca
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Re : New mom of micropreemie

Postby recca » Sun Mar 30, 638600 2:49 am

Thank you all so much for the positive stories and support.

I really needed something positive to hang onto today. Lily is still doing remarkably well, the pressure on her oxygen is down to 2L, her feeds are up to 2ml every 6 hours, and she is off the bililights (which means I finally got to see her face today!) but she is having some trouble adjusting to the changes-she is starting to have bradys and she is still having some trouble with residuals and green bile.

I know I’ve only been doing this a week, but it feels like forever and I’m really starting to wonder how I’m going to get through the next 2 months. I know that it is just a matter of getting through them, and when she comes home it will all be like a blur, but right now it seems like a huge insurmountable mountain of time.

And I am constantly worried over the possible problems that will come from Lily’s struggle both in the uterus and in the NICU. I know the statistics and they scare me-a lot. On the other hand, I was never supposed to get pregnant in the first place. We had unexplained infertility for 4 years and finally gave up on infertility treatments. A year later we got unexpectedly pregnant with Lily. So she is my miracle baby in so many ways, maybe she will surprise everyone and be a miracle this time too.

christine lyn
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Re : New mom of micropreemie

Postby christine lyn » Thu Mar 20, 638600 11:23 pm

Hi Recca, I've been were you are right now. My son was born at 29 weeks also and at 1lb. 9oz.. It does get tiring and you do need to take care of yourself for your babies sake. I only lived 30 min. from the hospital so the first few weeks I could not drive so I had to wait for my husband to get home from work to take me. I hated leaving him at night that was the worst. I kept his picture by my bed to feel closer at night to him. I felt guilty because I was home and he was not. After 4 weeks of delivery I went back to work part time until he came home. I'd get up early to the hospital and stay until after noon time and go to work until 8:00 and start all over again the next morning. I did this until he was ready to come home. By the end I was getting exhausted but you know...you just do it. I'm lucky that I didn't live so far away or have any other children at home to worry about. Take care of yourself and you will get through this whole thing. You'll look back in a few years and think nothing of it. Today my son is 4 and in preschool and loving it. He has a speech delay but is doing good with that also. Health wise he's doing great for being such a peanut at birth. I thank God every day for him he's my miracle for sure.

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Re : New mom of micropreemie

Postby kara » Wed Mar 19, 638600 10:43 pm

Welcome Recca! Glad you've found us, but so sorry that it's under these circumstances. COngratulations on your precious little one. The NICU is a very emotional, unstable roller coaster ride. These micropreemie sometimes take two steps forward and one step back. It sounds like she is going really well.

She is in the best place possible in the hands of wonderful care providers. You need to take care of yourself too so that you can get some sleep and have energy to produce milk. Is there a Ronald McDonald house, or on site quarters you could stay over night at the hospital so you wouldn't have to make the drive two and from everyday? Ask the nurses in the NICU if there are any accomodations. Even if you were able to stay over one night a week, that would give you time to rest and you could sleep easier knowing you were only a few minutes away.

I also suggest using the hospital electric breast pumps, if you aren't already. They are really the best for a brand new preemie mom trying to keep her supply up.

Hugs to you....many of us have been right in your shoes. We're here for any support we can provide you, even if that is just listening. Take care!

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panguitch02
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Re : New mom of micropreemie

Postby panguitch02 » Wed Mar 19, 638600 10:17 pm

Welcome!!! I can't really add anything new. Sounds like Lily is doing wonderful. I am so sorry that the NICU is so far away. You DH will get lots of time with Lily when she comes home in the next month or so.

amanda
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Re : New mom of micropreemie

Postby amanda » Wed Mar 19, 638600 5:05 pm

Hi!
I'm so sorry that your daughter is in the NICU but so happy she is doing so well. It IS wonderful that she's almost off the oxygen - that's a huge, wonderful step (as is every wire they remove!). Wanted to address the residuals. My daughter had them for a while once she was born- they told me that it wasn't anything unusual that they just needed to go slower on her feeds. In fact, if anything, they chose to go REALLY slow on upping the feeds until she was 35 weeks (born at 33/5 - later than your LO but still really IUGR for her age 2 pds/13 oz).

I also wanted to say, take care of yourself first right now. I know that it's hard to do, you want to be there all the time but honestly, taking care of myself first, at least while recovering was the BEST advice I was given while Anna Grace was in the NICU. Do you feel comfortable with her care? If so then *sometimes* letting them rest is really the best thing for them - they rest and grow. I know and so understand that it's hard to do that but remember that a healthy mama is the best mama right now.

We've had a number of babies that were early and have done really, really well. Going one day at a time is hard but every victory is a treasure. They will come, just slowly at first - try and hold on to the positives and remember that every slide back is normal - sometimes it seems like one step forward, two back for a while but, eventually, they take two steps forward and none, or few back - it just takes time.

Feel free to vent, cry, and get assurance here - we've all been there! Soon, her time in the NICU will seem like a blip and you will be off, on your way, with one of the newfangled 'wireless' babies!

I love Lily's name by the way, post some pics if you want, we love to see little ones!


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