Parents of Micro Preemies - Page 2

[munkeesmama]

"I was told not to cry near her isolette but sometimes I can't keep it together. Help! When does it get easier?"

Who told you not to cry near her? That is total BS. Feel free to show your emotions, love your daughter and cry when you need to. Unfortunately, I will not lie. It does not get easier until she is home and even then it takes awhile. The little milestones pick you up though. when you can hold her, when youo can feed her etc. If you'd like to read about ym experiences I started a blog when My daughter was born at 27 weeks and it's filled with raw emotions. It starts in thr archives of the blog from febrruary www.munkeesmama.blogspot.com. Wleomce to the forums. If you hae any questions there are alot of us who have been there done that. Please know that you are NOT alone. *hugs*

[BetsyNY]

"I was told not to cry near her isolette but sometimes I can't keep it together. Help! When does it get easier?"

What?!? That's the biggest load of I ever heard. You cry if you need to, mama. I never had ANYONE in my NICU tell me not to cry--they just supplied more tissues.

It's so, so hard, isn't it? You just have to put your head down and plow through it. Do whatever you need to do to make it easier for yourself. If it feels better to talk, talk; if talking is too much, don't talk. If want to cry, cry. If you need to take a break from the NICU, take a break! Like munkeesmama said, the little milestones will become the toeholds that you cling to, like when they weighed 3 pounds each (that was HUGE for us) or had their IVs out or took their first nippled feeding.

So hang in there! and PLEASE, if you ever need anything, PM me or any one of us. In the meantime, bring us up to speed: Is she on a vent? CPAP? Are you pumping? How much does she weigh now? Are you doing kangaroo care?

[Amys1st]

Welcome and congrats on your baby girl!

I am so sorry you were discouraged from crying at the isolette, cry away mama! Also please visit here and talk to anyone of the micro mamas- we all have been there.

[BetsyNY]

Oh, and to answer the OP:

Let's see: Conan weighed 2 lbs 3 oz at birth; Dennis weighed 2 lbs 5 oz. Both of their PDAs closed on their own (I think, it's hard to remember)--I know C's closed on his own, because they did a head u/s before they could administer any medication, and that's when we found out about his IVH. First they told us it was a grade III, and then when discussing it mentioned it was a grade IV. : Say wha? So Conan has IVH w/ PVL on the right side of his brain, a "small" area, supposedly. He didn't develop hydrocephalus or need a shunt, thank you God. : I didn't go to his MRI or meeting with the neurologist; I had a cold, so my H had to go alone. The MRI was terrible, Conan had to be sedated and he stopped breathing on the table. H heard him code and heard the ruckus as everyone came running. Poor guy, he was so traumatized by it.

Enough about the brain thing. Dennis was on the vent for at least a week, but they were both off CPAP and onto a cannula by the time they were three weeks old. Dennis's prolonged issue was bradycardia; Conan's was desaturations. He would desat down into the 30's, and then go right back up to 90-95, lather, rinse, repeat. They both had GERD, which was contributing to their respective issues, and once that was corrected (Reglan, Zantac, thickened feeds) they did a lot better with the desats and A's & B's. Part of their problem was central apnea, so they came home on caffeine and monitors.

Conan has chronic lung disease, and they're both monitored by a pulmonologist. He came home with O2 and a pulse ox, but luckily we never had to use the O2, and they just took it away a couple of weeks ago! No more equipment in the house, huzzah! No ROP and no surgeries.

[ksera05]

Sydney was 560 grams, 16 weeks early, on July 27th of this year due to severe preeclampsia/HELLP syndrome.

So far we had a PDA that closed on its own without medicine or surgery but bled out and flooded her lungs before doing so She was on the nasal cannula before that happened but once they were flooded she was intubated on a regular ventilator. Her lungs have been getting worse and worse so we started a one-week course of Decadron last Wednesday. She hopefully will be extubated to CPAP tomorrow (knock on wood and pray really hard...)

There's a support group that meets during evening shift change at the hospital every Monday, and I've made friends with two of the moms in the NICU, one of whom has twin girls and understands exactly what I'm going through because she's about 5 weeks ahead of me

[sweetpeasmom]

Originally Posted by melissa725

Amy-
I need help with this whole NICU thing! I think the initial shock of what was happening has worn off - I was told not to cry near her isolette but sometimes I can't keep it together. Help! When does it get easier?
Melissa

OH MY GOSH!! TOld not to cry? what cold hearted person said that? I cried almost all the time in the beginning when I was there with her and no one ever told me not to cry, all the staff totally understands. You need to cry, don't keep it bottled up. Cry wherever you need to. Hang in there, we are all here for whatever support you need

[Rachel J.]

Noah was born Aug. 9th at 29 wks, 6 days by C-section due to restricted fetal growth and blood flow issues. He was 2 lbs., not sure the grams. He's been breathing room air since about day five and has had no complications. I feel so blessed that he's progressing so well and is healthy. I kind of feel like a guilty NICU mom because can I only go see him once, maybe twice a day.

[Amys1st]

Originally Posted by Rachel J.

I kind of feel like a guilty NICU mom because can I only go see him once, maybe twice a day.

dont feel guilty at all! I could only go once twice a day as well sometimes only once and then dh would go twice since I had my older dd at home as well.

[sweetpeasmom]

Originally Posted by Rachel J.

I kind of feel like a guilty NICU mom because can I only go see him once, maybe twice a day.

please don't feel guilty. For the first few weeks, i only saw her 2 times a week. After that only once a day most of the time, never twice a day, that was just too much to handle. Stay strong you are doing a great job

[melissa725]

Charlotte started on the oscillator, moved to a vent a week later tried CPAP, went back to the vent and is now back on CPAP since Monday. We started Kangaroo Care when she moved to the vent. I pump faithfully and four weeks later pump about 650 CCs per day - is this normal? Charlotte is up to full feeds and weighs 1lb 14.9oz. - can't wait for 2 lbs! She had a level II IVH that appears to have resolved itself. I think the next big test is for her eyes. What should we expect with that? I'm so scared about her future health!

By the way, I feel terrible guilt about not keeping her in longer. I don't think anyone should feel guilty about visiting the NICU only once per day. I can only make it once per day - we live almost an hour away!

[Amys1st]

Originally Posted by melissa725

. I pump faithfully and four weeks later pump about 650 CCs per day - is this normal? Charlotte is up to full feeds and weighs 1lb 14.9oz. - can't wait for 2 lbs! She had a level II IVH that appears to have resolved itself. I think the next big test is for her eyes. What should we expect with that? I'm so scared about her future health!

By the way, I feel terrible guilt about not keeping her in longer. I don't think anyone should feel guilty about visiting the NICU only once per day. I can only make it once per day - we live almost an hour away!

I understand your entire post. What is full feeds at this point? MAggie didnt get but 1cc until she was about 3-4 weeks old. I pumped 4-5 5 oz bottles everyday the first month. Then it started to go down. Be careful with that btw.

They check all the babies under 1500 grams eyes. They will keep it up for at least 6-9 mos and that is if she is developing normal. They really need to keep an eye on her since she was on the high freq vent. MAggie goes on Monday for her eye check.

[OGirlieMama]

I'm excited to have found this thread! Would you believe I am another Betsy in NY with micropreemie twins? (Hi BetsyNY! Nice to see you here, too! )

Lillian and Kate were born at 29 weeks GA. Lilly was 1400 grams and Kate was 1280. Both of them had PDAs that resolved after the 2nd dose of indomethecin. A few As and Bs but mostly desats from both of them. Lilly was on CPAP for 10 days I think, then nasal cannula, and come home free of assistance after 63 days in NICU. Kate was intubated for 14 days,then on CPAP and then cannula, which she came home with after 65 days in NICU and stayed on the O2 for nearly 2 months longer. That was rough but we managed it. Both had reflux which they seem to have outgrown now.

Now they are 7 months old and super-healthy. For their adjusted age they are in the 90th and 75th %tiles, as of last month. When we are out and people ask how old they are, no one says "My, they're small!" anymore. They actually tell me they look so big and strong, and when they ask their birthweights I watch the shock on their faces.

Other than the prematurity, the biggest disappointment was my lack of success with nursing the 2 of them. I started pumping right away, and we did nurse a bit in NICU, but when we came home it got really difficult with the O2 and reflux, exhaustion, thrush, bad latches, etc. I wasn't able to get them enough time on the breast in addition to feeding them EBM and pumping, so now I am exclusively pumping and wishing it were different. I still try sometimes to get them on the breast, but they are not interested usually.
Still, they are getting my milk and that has fattened them up to the point that they are both pushing 15 pounds (I will found out at their next check-up a week from today) so I at least feel good about that.

[sweetpeasmom]

so now I am exclusively pumping and wishing it were different. I still try sometimes to get them on the breast, but they are not interested usually.

Good for you for pumping, i can only imgaine it's more work for twins. I tried for 6 mths to get her to the breast, she wasn't interested at all and then when she was about 9 mths (5 1/2 adjusted) she took to the breast! We are still nursing strong today and she turns 2 in a few weeks. Just saying you never know, it can happened. If it doesn't, then you've done your best in a difficult situation


Well Megan had an EI evaluation the other day. She is no longer considered "delayed" in anything, not that i was concerned with anything anyhow. She actually was ahead in some areas even for her actual age, so way ahead for adjusted age. It was just so great to see, i was proud of my little sweetpea. I remember being told by the neonatologist when she was about 6 mths old that she most likely will be a very late walker and may have issues and here she was at 22 mths walking a balance beam I just shedded a few tears of joy for her

[melissa725]

The docs have Charlotte on 17 ccs of breast milk with additional lipids and 4 packs of human milk fortifier every three hours. She has just started to develop reflux and I saw my first apnea yesterday. I now understand what "dusky" is. They also upped her caffeine dose this week so I wonder if that doesn't have something to do with the reflux.

Does anyone know the rules about glove use for nurses? I had a nurse yesterday who suctioned her WITHOUT wearning gloves! I lost it! These little babies are so prone to infection. I'm still waiting to see how the hospital will handle this beyond changing the nursing assignment.

How is Sydney doing with her CPAP?

[munkeesmama]

I think it depends on their comfort level. Gloves are mostly to protect the nurses anyways. Nurse SHOULD wash their hands well before handling your baby. As long as the nurse washed her hands or use the gel before suctioning I wouldn't worry. Especially if she needed to suction your baby quickly to help your baby breathe. I know it's hard getting used to things in the nicu nd each nurse does things a bit different. If the glove thing bothers you you can put a note on her bedside which says "please use gloves". I hope your baby outgrows the reflux soon, we're still dealing with reflux at 6 months (3 months adjusted) and it's not easy. From my expierence the caffiene really didn't affect the reflux. I'm not sure on others experience. ALOT of preemies have reflux ust because everything is still so immature.

[Amys1st]

I do know the caffiene has nothing to do w the reflux. But if they try to wean the caffience, it takes about 5-7 days to get it out of the babie's systems. Maggie was taken off and had apnea within days.

Our nicu did not really use glovces unless it was a planned procedure but usually the nurse washed her hands immediatly before doing anything in urgent matters

[sweetpeasmom]

They very rarely used gloves in our NICU, except for like IV's, blood draws etc...

Actually my dd developed reflux due to the caffiene. They put her back on caffiene before she left to go home. They told me that it's possible she could develop reflux from it and within a few weeks she did. It went away when we took her off the caffiene. She never had reflux before that, she even had that test for reflux before she was discharged.

[OGirlieMama]

Originally Posted by sweetpeasmom

Good for you for pumping, i can only imgaine it's more work for twins. I tried for 6 mths to get her to the breast, she wasn't interested at all and then when she was about 9 mths (5 1/2 adjusted) she took to the breast! We are still nursing strong today and she turns 2 in a few weeks. Just saying you never know, it can happened. If it doesn't, then you've done your best in a difficult situation

Thanks for the kind words and inspiration! I will keep trying with them and hope for the best. It would be great to pump less. But then, my pumping time is my internet time, so at least that's the silver lining!

And congrats on your daughter's checkup! It sounds like she is doing fantastically!

[melissa725]

Amy-

How did Maggie's eye check go?
Charlotte had her first eye exam today - stage 1 - they told me not to worry...

[Amys1st]

We went for the eye check today. I hate it since she has to have her eyes dilated and at least today its rainy. She is doing real well and dosent have to go back until January. The dr said she is moving along just fine. I hate having that exam done though. At least now we are used to it. Maggie oth, hates it! She is sleeping now.