Your Premie/NICU Story

[penguin129]

Let's share our stories. Questions for thought: how was your pregnancy? If you found out ahead of time that you would have a preemie or nicu baby, how far along were you and how did you handle it? Tell us about your birth experience. Tell us about your nicu experience. How long was baby in the nicu? Complications? If they are out of the nicu, how are they doing? Do they see specialists? Any delays or other issues? How are YOU doing? PPD? PPA? PTSD?

I have a feeling these will be longer posts than usual, so don't disappoint me.

ETA:

*** Copied from a previous thread***

[spring78]

That is a lot of questions, penguin129. I'll see what I can do...

how was your pregnancy? My pregnancy itself was fine and mostly uneventful. No blood sugar issues, blood pressure always good. I had bad nausea and food aversion the whole time, but that is it for me. I did have added stress as it was twins and we knew one of the babies had some problems, which I will talk about below.

If you found out ahead of time that you would have a preemie or nicu baby, how far along were you and how did you handle it? We knew it was a possibility from the beginning, as twins are often early. Then, at our anatomy scan we learned Baby B was small and had a congenital deformation of his left kidney (multicystic dysplastic). The doctor assured us he could live a normal life with one good, working kidney and the fact that he had enough amniotic fluid suggested his other kidney was fine. We took comfort in that. They thought there might be a heart problem, too, so we got sent to a specialist for that, but they didn't see anything on the scan. B was diagnosed IUGR and we were warned that he would be tracked closely and if he started to do worse (stop growing, lose blood flow from placenta, etc), we would have to take them early, which would make things worse for Baby A. Helping one baby would hurt the other -- Not a fun position to be in. We were in for regular scans after that, but things continued to go as well as could be hoped. The MFM talked about preparing for NICU possibility and arranging a tour of facility to help us get ready. At my appointment at 31 weeks 4 days, everything looked great! I had a minor bladder infection, but everything else was going well -- baby B was growing, blood flow was good, amniotic fluid levels were good. MFM said she saw no reason we couldn't go to 36 weeks. She even said we could skip the NICU tour. The next day, at 31+5, I went into spontaneous labor.

Tell us about your birth experience. My birth experience was actually really good, all things considered. Of course I was terrified that they were coming so early and would much rather they had stayed in a while longer, but other than that I do not think I would have changed much of it. So, here is how it went down: I started cramping that morning as I was getting ready for work. I was in denial. Told myself it was Braxton Hicks or digestinal issues. Cramping continued at work. I work at a museum and have 2 hours a day out with the public. Cramping got so bad, I had to excuse myself from public time. A co-worker must have called my boss because suddenly she was there telling me I needed to go to hospital, but I was still in denial. When I realized I was bleeding, I gave in. My boss called security to come wheel me out of the building and she drove me to the hospital. Once I got to triage, I was already 5cm dialated. There was no stopping it, though they tried to slow things down so they could get in the two steroid doses. I called my husband and my OBGYN sister who worked in the same hospital system. My sister got there first and she stayed with me (after dismissing my boss) as they gave me the first steroid shot, hooked up the magnesium and continued assessing the situation. Both babies were fine on the monitors and positioned head-down, so nothing to do but wait. I met one of the OBs on call (of course, my doctor wasn't there) and we clicked pretty well. She agreed that I should have the chance at a vaginal delivery of I wanted, as long as babies didn't get stressed. I was admitted and moved to a private room to wait. My DH finally arrived, followed by my folks and his. We all hung out in the private room. Magnesium sucked. I got so hot, they had to give me cold packs and wet wash cloths to cool me down. I had miserable back labor so was grateful for the epidural when it came. Babies still looked great on mintors. We waited. Nothing worked to slow labor and it became obvious we wouldn't make it to second dose of steroids, which stressed me out. A new OB came on service, met her and she seemed nice. Still not my doc, but again, we clicked. She was still on board for vaginal delivery. About midnight they took me to delivery room and I met the 15-20 people I would be sharing the experience with, including a second OB, my nurses and two NICU teams waiting to whisk babies away. They ruptured the first bag of water and I started pushing. No progress for an hour. Sorry everyone, false alarm. They wheeled me back to the room to wait a while to try again. I dozed on and off. Sent my in-laws home. Around 4am things started moving again, so back to the delivery room. They let me listen to my music of choice -- Def Leppard radio on Pandora. Gave everyone a good laugh and lightened the mood immensely. There were jokes and laughs -- especially when the second bag of water broke spontaneously while I was in the stirrups and shot water out like a water cannon, soaking one doctor, the nurse and my sister's shoes. DH was standing far enough back to avoid it. At 4:41am, out came Baby B (now Baby A) to the dulcet sounds of Gun's n Roses "Sweet Child." He was tiny (3lbs4ozs) but screaming for all he was worth. Best sound I ever heard. I got a quick glance as NICU team rushed him away. He was followed 15 minutes later by his big sister Baby A (now Baby B). None of us could recall what was playing when she was born other than that it was a song by Boston and luckily not what started mere moments later -- Warrant's "Cherry Pie," which would have been totally inappropriate for baby girl's birth song. She weighed in at 3lbs14ozs, also came into the world screaming and was whisked away by her NICU team. I waited anxiously for word on the babies while they finished with me, continuing to laugh at Pandora's offerings.

Best choice I was able to make for the experience was having fun music. One of the nurses laughed and said she had never had a mother play Hair Band music before -- New age spa music, sure, whale songs sometimes, lots of meditation type music -- but never 80s rock. It was a blast and so much more "me" than any of that calming nonesense.

Tell us about your nicu experience. How long was baby in the nicu? Complications?
The start of our NICU stay was a little rough. My DD was transfered to the specialty Children's Hospital the day I was released from the hospital. She had a suspected meconium plug, which they could not properly diagnose or treat at the regular NICU. My son stayed at the original NICU at first. Luckily, the diagnostic test for a meconium plug is also the treatment, so she was fixed up real quick. But once transfered, you don't get sent back, so had two babies at different hospitals for over a week. That sucked. Meanwhile, my DS was not doing well. He soon went into renal failure after birth. He was eventually transfered to Children's Hospital, too. They put him in room across the hall from his sister, which made things much easier for me. DD dealt with jaundice and then was just a feeder and grower from that point on. She was in NICU a month until she was released. DS was another story. On top of renal failure, he was diagnosed with a massive VSD and had breathing issues. After first week at New NICU, the nephrologist visited for first time and introduced herself with "Well, of course you know, he is going to need a transplant." Well, no, no one had mentioned a kidney transplant yet. That was a huge shock. We had thought his right kidney was okay, but it wasn't. It is under sized. That was the first "well, shit" moment. Next, at 3 weeks old he went into heart failure due to the VSD. So there was my beautiful baby boy, hooked up to all those machines, being told two major organ systems are in failure. That sucked. I mean, really, really sucked. I could only get through those days by putting one foot in front of the other and taking things step by step as they came. Slowly, the renal situation improved, against nephrologist's prediction. He went from renal failure to renal insufficiency. Woo-hoo! They managed to control the heart failure with medication. He stabilized, but he still struggled to gain weight and experienced frequent vomitting episodes. Diagnosed with reflux. Unable to eat due to heart failure related weakness and breathing issues. Eventually came home on feeding tube after 2 months. Renal situation looking better, though doctor still predicted dialysis by 8 months and transplant as soon as he was big enough. Also waiting for him to get big enough for open heart surgery. I could say so much more, but this is already a short novel.

If they are out of the nicu, how are they doing? Do they see specialists? Any delays or other issues? Both have been out of the NICU for nearly a year. DS will be out a full year on Dec 8. DD is doing great! She was a tad behind in physical development at 9 months, but she is caught up to her actual age in every way now. Walking like a champ now, starting to talk. She is too clever for her own good! DS is a different story. 2 surgeries and two illness related hospitalizations since the NICU. He still sees a host of specialists -- but we are down to only the cardiologist, nephrologist, GI, and developmental peds on a regular basis, plus physical and occupational therapy. He had his open heart surgery in June. At that point, he was starting out developmentally little more than a newborn, as the struggle to survive with his VSD had left him with little energy to invest in development up to that point. He has been coming along in leaps and bounds since then! He is doing so well, almost like a whole new kid! His kidney function continued to improve until it is within normal range (even if just barely) -- proving the nephrologist wrong. No dialysis in the foreseeable future. The doctor still says the time will come, that the kidney will fail to keep up as he grows and a transplant is inevitable some day. But that day is not today. The VSD repair was mostly successful. They could not close it completely, but the residual hole is small enough they say it should not cause problems. Fixing the heart fixed his breathing problems. He is still on a feeding tube, still has bad reflux and vomitting, but even so, he is just the happiest little boy most of the time. He is working on learning to walk now, though he has no balance. Trying to build muscle tone in PT to improve balance. His neurological development is on track, even if he is still behind in physical development. He loves to examine things and figure things out. DD is always on the move, flitting from one thing to the next, but DS is our problem solver. They are starting to show interest in each other more and actually play together, which is so cute! I am loving watching their relationship develop.

How are YOU doing? PPD? PPA? PTSD? I am doing okay. Life with twins is exhausting, especially with one with special needs. I have never fully dealt with my emotions through this experience and neither has my DH. It has been rough on the marriage. But we endure. I still cry at the drop of a hat, especially if I let myself think about DS's future. I get anxious and a bit flash-backy when I take DS to appointments at the Children's Hospital. I still have dreams in which either DS is lost or someone has him but won't give him to me. But overall, on a day-to-day basis, life goes on. I am so happy to have my two little monsters and amazed every day at how well they are doing and how far they have come.

[penguin129]

spring78 I know it is I found the thread lurking one night and thought it was really good. You can see I haven't gotten around to it yet either.

[cosmicav]

How was your pregnancy? Overall, uneventful. I had some spotting in first tri, but nothing otherwise out of the ordinary.

If you found out ahead of time that you would have a preemie or nicu baby, how far along were you and how did you handle it? I did not know in advance that I would have a preemie, and I was completely blindsided. I was sure I would go overdue since he was my first, and everyone in my family who has had kids has gone over. My water broke when I got up to pee in the middle of the night. I was 35 weeks. Before this, I had not even had a single contraction throughout my pregnancy. When I got to the hospital, I was 3cm dilated and 90% effaced. He was born about 17 hours later. It was surreal.

Tell us about your birth experience. Overall, I had an uncomplicated, vaginal birth. I had a 3rd degree tear. LO did not cry when he was born, so that was terrifying. It took him a minute but it felt like forever. My post partum experience was ROUGH. I felt so broken, and I felt so cheated out of the end of my pregnancy. I had enjoyed being pregnant. I was not "ready" to be done. I felt like I had failed my son, and I was in shock for weeks and months. Like, the rest of the month went by and internally, I would look at the calendar and think "I should be 37 weeks today." I had wanted to breastfeed, but LO could not latch and could not stay awake and needed the supplementation. He had really bad jaundice and had an IV and nasal cannula and monitors all over the place. Breastfeeding did not work out. I could not pump. There were signs in the maternity ward that said things to the effect of: "Get your baby to full term! At 35 weeks, their brain is only half the size it needs to be at full term." I cried every time I saw those goddamn signs. I felt like it was all punishment for every sin I had ever committed through my life.

Tell us about your nicu experience. How long was baby in the nicu? Complications? If they are out of the nicu, how are they doing? LO was in the NICU for 1 week. It was a blur. I would look at his tiny little self and just cry that he was not supposed to be here yet, and I couldn't even sit down because I had a bajillion vagina stitches and everything was sore. I couldn't focus on anything.

Currently, LO is 19 months old and is overall advanced for his age, especially in his language skills. He is doing great. I love that kid so fucking much.

Do they see specialists? Any delays or other issues? None.

How are YOU doing? PPD? PPA? PTSD? My anxiety has been godawful recently, but I know that this is because I am pregnant now. All I can think about is what if this next one comes early too? I mean, we are getting extra monitoring and hormone shots, but we have no idea why LO1 showed up early, and that could just as easily happen again. I wouldn't be able to be by LO2's side the same way as with LO1, and I am feeling guilt about it already, and it hasn't even happened! I guess I just have a lot of unresolved feelings about it. I am uncomfortable now in my pregnancy but I hope and pray to get to 37 weeks all the time. I can't stand people telling me that I "look so done." Yes, I am tired and sore but this baby needs to stay put! I will do whatever I can to get baby as far as they need to go! I haven't seen anyone about it, but it has been on my radar. I just have a lot of anxiety.

[penguin129]

I moved these over to the new NICU board. I wonder if you all could copy and paste over there. It is a subforum at the top of the page.

[penguin129]

Hugs to you cosmicav.