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.
mymiracles2
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Re : New mom of micropreemie

Postby mymiracles2 » Tue Apr 21, 2009 08:11 pm

First off, take a deep breath, your deserve it:0) I can remember the emotions that you are feeling right now, and the isolation, remember that you are not alone. Our 1st daughter was born just over a pound at 24 weeks. It was a scary experiences, and the days seemed surreal, one day was positive, the next seemed like no progress. I know it is difficult to believe right now, but it will get easier, and more "normal" and you will learn to celebrate the little miracles. We took a picture of the scale and had a party the day that our daughter hit 3 pounds. Despair is a common feeling to feel, but have faith an remain strong. I can attest to the fact that our little preemies are some of the feistiest that you will ever meet, they defy the odds daily.

Be sure to take the time to rest and feel EVERY emotion that you are feeling, vent often and remember that we are all here to listen:)

char069
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Re : New mom of micropreemie

Postby char069 » Mon Apr 20, 2009 02:58 pm



Hey Recca!
I have just read your message and i just want to tell you that you are doing a fab job!
You have brought back so many memories of how i felt when my angel Mason was first born at 26 weeks weighing 750 grammes.
I know you are feeling that you need to be at the hospital every day and at every moment, but it is really impossible and u will go insane. you need time for yourself, you are already doing so much for others!
Your baby girl sounds like a little fighter, too! My son Mason had a bleed on his brain and lungs in his first 2 days of life, he also had yellow jaundice, bowel surgery and never managed to get off the ventilator due to severly damaged lungs.
I spent alot of time in the hospital, but i also took a day or two out of every week where i would stay at home and relax, it didnt mean that i didnt care, but i needed it, i remember calling the NICU with my anxious phonecalls to ask if my baby was still doing ok while i was away, and if it wasn't i would go and be with my baby.

I also worried about how my partner was dealing with things, it's funny but i know him better than he does, so i knew he cared more about my feelings while trying to hide his own, he couldnt always come to see the baby due to work but he knew that if i was there the baby would be fine.

I think what helped me the best was to talk to all the other mums in the unit, the support was amazing, because i knew all these other mothers were feeling the same as me.

My only problem was trying to express milk for my baby, i started off really well, but slowly it faded out, the breastfeeding specialist recommended relaxation and suggested i stopped stressing out.

I hope Lily keeps fighting strong, it's amazing what baby's can do!

((((hugs)))))


aggie95mom
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Re : New mom of micropreemie

Postby aggie95mom » Thu Feb 26, 2009 12:10 am

Late to the game, but congratulations on your baby Lily! Beautiful name for I'm sure a beautiful girl. Like others have said, you've been through a lot and are doing really well. No one ever wrote an instruction manual for this and goodness knows there's unfortunately not a one size fits all approach/recipe.

We didn't qualify for Medicaid once my son left the hospital, but he kept the 'disabled' label for quite a while due to numerous other delays and even though I, initially, was very sad by the word/label, it enabled him to get excellent therapy whenever he needed it and as often as he needed it. I think that's why he's now 4 1/2 and doing so well.

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hannahsmom
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Re : New mom of micropreemie

Postby hannahsmom » Mon Feb 23, 2009 02:38 pm

We have a 7 and a half year-old that was a micropreemie and had severe IUGR. She's fine and your little one will be, too!!

christine lyn
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Re : New mom of micropreemie

Postby christine lyn » Mon Feb 16, 2009 09:13 pm

Our son was a micro-preemie at 1 lb. 9 oz. and qualified for social security/medicare(?) until he came home and qualified also for Early Intervention for having a speech delay but being a micro-preemie was a factor even if he didn't have the delay.

trish724
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Re : New mom of micropreemie

Postby trish724 » Thu Feb 12, 2009 05:25 pm

Hi Recca,
My oldest daughter, who is also Lily, was born at 29 weeks due my severe preclampsia. She was 2 lbs 14 ounces and it sounds like she had a similar path in the NICU. It sounds like you guys are on the road to getting out the door. The NICU is a hard place to be--physically and emotionally. Keep pumping and do not feel guilty, you are doing such great things for your baby.

My secodn daughter is in the NICU now. Chloe was born 2 weeks later weighing 3lbs 3.7 ounces. She is doing well--but I the NICU sucks.

It is an impossible situation. But you are the perfect mother for your baby and doing everything right.

you both will be okay. congrats on your beautiful and brave Lily.

pld0804
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Re : New mom of micropreemie

Postby pld0804 » Wed Feb 11, 2009 09:42 pm

Recca, congratulations on the birth of your precious little girl! Lily is such a beautiful name. I have not had experience with a micropreemie (my preemies were born later), but wanted you to wish you strength and let you know I'm thinking about you and Lily.

swagner23
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Re : New mom of micropreemie

Postby swagner23 » Wed Feb 11, 2009 03:16 pm

Recca,
I am also a mother of a micropreemie. I had severe PE with HELLP and had an emergency C-section at 24 weeks. My daughter Bethany was born on Oct 6, 2008 at 450 grams (just under a pound). She too had some difficulty eating where they getting green bile. The doctors told me that this was common for micropreemies and they continued to give her small feedings. She eventually grew out of it.

She is still in the hospital's ICC ward due to feeding issues. Bethany’s now about 4 months old, adjusted age is 3 weeks. She has trouble swallowing - she hasn't matured enough to know how to cover her airway when she swallows, so she ends up breathing in the milk. My husband and I are waiting til she's 6 lbs 10 oz, then she can have a surgery to put in a feeding tube so we can take her home. While that's not our optimal choice, it may be months before she learns to swallow. The doctors told us she may even bypass the bottling phase.

I just want to encourage you that there is light at the end of the tunnel! My daughter is very strong. She's had PDA ligation surgery, was on an oscillator, then a ventilator, then a CPAP, then a high flow nasal canula, then a regular canula, was at high risk for needing laser surgery to correct the retinopathy in her eyes, and the list goes on. Currently, she breaths entirely on her own, is in a crib, has overcome retinopathy, coos, likes strawberry lip smackers on her lips, enjoys listening to "Baby Beatles", and is 6 lbs 7 oz. SHE'S BEATEN THE ODDS. The hospital staff fight over who gets to care for her.

My biggest suggestion to you is to take care of yourself! Lily needs two healthy parents - get enough sleep, eat right, exercise, and take vitamins. Do not be afraid to ask for help! We also applied for SSI and medical assistance through the state - they help pay for the cost of her health insurance premium. Through all this I’ve learned to just take everything one day at a time, one mountain at a time. Whenever things get hard for me, I just remember that I could have lost my little girl. The fact that she’s alive makes it a little easier to endure these stressful situations.

recca
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Re : New mom of micropreemie

Postby recca » Wed Jan 14, 2009 04:32 am

quote:Originally posted by griffin042504

Recca -
Here's something that I didn't really 'know' until we went through it. Because of Lily's size and gestation she (I think - Kara can you validate for me??) will qualify or should qualify for medicare/medicaid. THAT is a godsend - whichever it is, medicare/medicaid (I can remember which) will help pick up any remaining costs that your insurance doesn't.

For example: Our insurance had a $1500 deductible, which, since we went over a year end turned into $3,000 - medicare/medicaid picked a good deal of it. Mine on the other hand, not so much so we are left with a lot of bills, but, Anna Grace, it did pick up some. Also, they will give you a small stipend to help pay for incidentals while Lily is in the hospital.

That is *probably* one of the reasons that they suggested that you apply for disability - every penny will help so please take them up on their offer to interceed on your behalf. I found it very difficult to wrap my head around it - I had never taken any assistance from anyone but, honestly, they WANT you take this and they WANT to be able to track your little one.

They will also talk to you about things like Babies First (or whatever it's called in your area) - kind of scary when you aren't aware of WHY they are telling you this but, in reality, they are trying to set you up and get you into the services you can qualify for - even if you never use them - they are still already set up for you.

Does that help?

So glad that Lily continues to do well and good job on the sleeping - it really, really helps!


It does help, thanks. I actually had applied for medicaid as soon as I ended up on bedrest because we lost my income (half our total income) when I had to stop working. Because of the timing of this baby, both my husband and myself were out of work when she was created. It was definitely not expected, especially after 4 years of unsuccessful infertility treatments, but she was definitely loved and wanted from day 1. Anyway, we were paying for our prenatal care out of pocket because DH's insurance didn't start until 3 months after he started his new job (which he started a month after we found out about the pregnancy) and my job (which I started about a month after DH) was only part time with no benefits. Then we find out that DH's insurance won't cover me for prenatal care because I wasn't the primary and it was a pre-existing condition. Anyway, we were doing fine moneywise until I got sick, and then the bills started coming much faster than we could pay them and I lost my income and we bit the bullet and applied for medicaid. Now it is just a matter of getting the "right" medicaid because Lily's birthweight qualifies her for disability, which requires me to reapply for medicaid for the disabled, rather than medicaid for pregnant women and infants. The good news is that if Lily gets this coverage we are protected somewhat in terms of income if I end up going back to work (which is kind of a long shot at this point) and it will help defray some of the costs when she comes home.

Now that I have gotten past the "disabled" label for my baby when we don't KNOW that she will be disabled, I can see the benefits of it, but I cried the WHOLE day when this was suggested to me. I am also happy that we will be tracked and will be offered several benefits for Lily, like an assessment and early intervention therapies if she needs them. I am hoping that she doesn't, of course, but it would be much worse to find that we need them, and then have to wait months on end for the bureaucracy of the government to get on board.

amanda
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Re : New mom of micropreemie

Postby amanda » Tue Jan 13, 2009 11:06 am

Recca -
Here's something that I didn't really 'know' until we went through it. Because of Lily's size and gestation she (I think - Kara can you validate for me??) will qualify or should qualify for medicare/medicaid. THAT is a godsend - whichever it is, medicare/medicaid (I can remember which) will help pick up any remaining costs that your insurance doesn't.

For example: Our insurance had a $1500 deductible, which, since we went over a year end turned into $3,000 - medicare/medicaid picked a good deal of it. Mine on the other hand, not so much so we are left with a lot of bills, but, Anna Grace, it did pick up some. Also, they will give you a small stipend to help pay for incidentals while Lily is in the hospital.

That is *probably* one of the reasons that they suggested that you apply for disability - every penny will help so please take them up on their offer to interceed on your behalf. I found it very difficult to wrap my head around it - I had never taken any assistance from anyone but, honestly, they WANT you take this and they WANT to be able to track your little one.

They will also talk to you about things like Babies First (or whatever it's called in your area) - kind of scary when you aren't aware of WHY they are telling you this but, in reality, they are trying to set you up and get you into the services you can qualify for - even if you never use them - they are still already set up for you.

Does that help?

So glad that Lily continues to do well and good job on the sleeping - it really, really helps!


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