Micro Preemie Support Thread Winter - Mothering Forums

Forum Jump: 
 
Thread Tools
Old 01-11-2009, 12:56 AM - Thread Starter
 
Amys1st's Avatar
 
Join Date: Mar 2003
Posts: 8,322
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Since we have had a few new people come to the NICU area and several who have had micro preemies, its time to start a support thread.

Us NICU graduate parents would love to lend a hand and support to any of you plus you can support each other.

So intro yourself and ask or vent away!

FYI a micro preemie is born under 1200 grams or 28 weeks or earlier. Of course that could have changed since I last had to read all this but we all have been thru that emotional rollar coaster. Also, micro parents have different issues or questions than preemie parents. This is not to one up or say I have it worse but support the parents who have had or are in the nicu w a micro baby. Believe me, there are different questions facing the further along babies and they also have an emotional rollar coaster but different issues.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
Amys1st is offline  
Sponsored Links
Advertisement
 
Old 01-11-2009, 02:46 PM
 
PE&M's Avatar
 
Join Date: Jul 2008
Posts: 68
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Molly was born at 27 weeks (according to the US) 26 weeks according to my chart. However because of strict hospital bed rest, her weight was over 2lbs.

She's 7 months & 10lbs now! We face many hurdles!
PE&M is offline  
Old 01-12-2009, 12:23 AM
 
Join Date: Jul 2005
Location: Kingston, NY
Posts: 932
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hey all--

My twins were born at 27 weeks. Conan has/had a grade IV IVH w/ PVL. Over the last three years we've seen more than our share of specialists (pulmonologist, opthamologist, ENT, neurologist, physiatrist, osteopath).

He's been in EI since he was 3 mos old (if I had any post-NICU advice for grads, it would be refer to EI as soon as possible; someone was at our house the second week the boys were home!), and next week he will (hopefully) begin preschool through the county. He has sensory issues, problems attending, speech delays, echolalia, etc etc...he's doing GREAT though.
BetsyNY is offline  
Old 01-12-2009, 12:44 PM
 
skylarsmama's Avatar
 
Join Date: Mar 2002
Location: Birdsboro,Pa.
Posts: 538
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I've shared a lot of my story in various threads here but I'll sum it all up here.
Addison and Riley were born at 25w4d. Addison weighed 1lb. 5.2oz and Riley weighed 1lb. 3oz. Both were 12.25" long. When they were born, the nicu doctors told us that they had a 50% chance of survival.
Comared to a lot of other people, we had a fairly uneventful nicu stay. Addison had a slight heart murmur due to PDA that closed on it's own within the first week. Riley developed a minor staph infection and was on antibiotics for about 2 weeks and then had a partially collapsed lung.
They both managed to avoid brain bleeds and they both developed ROP but neither of them were bad enough for surgery. They were both diagnosed with chronic lung disease and we were told that their lungs were already starting to heal and that in a few years, we should see no signs of any lung damage.
Addison was in the nicu for 81 days and Riley was there for 87 days. They both came home on apnea monitors and on poly-vi-sol and Addison was also on Zantac. Addison came home weighing 4lbs. 4oz. and Riley was 3lbs. 13oz.
I was able to pump and keep up my supply while they were in the nicu and with a few weeks of hard work, they were nursing and had no need for nipple shields or EBM bottles. Riley came off the apnea monitor about 3 weeks after coming home and Addison came off of his in mid-November.
Now, at 7 months old (almost 16 weeks adjusted), they're doing really well. Addison weighs just over 8lbs. and Riley is about 7.5lbs. They still have reflux and sleep in their carseats but they don't need zantac anymore. They have a physical therapist come to the house once a week or help their muscle tone. They're both rolling from belly to back and they're starting to work on sitting.
They smile and coo and have started teething.
We know it will take some time but they're fully expected to "catch up" and not have any long lasting health problems. We've adjusted to a life filled with with various appointments and the boys, as of Jan. 1st, will have state insurance as a secondary so we won't go broke paying co-pays. We've taught our big kids all about handwashing and using sanitizer (which is placed all over the house) and they understand and are ok with not having play-dates or doing fun, out of the house stuff as a family.
My summary seems to have turned into a novel. My oldest was a 32 weeker and spent 21 days in the nicu but having micro-preemies is really a whole different ball game. Our lives changed drastically and I am so thankful that this forum is here. Googling the term "micro-preemie" right after giving birth to 25 week twins is NOT a good thing. This forum helped me answer a lot of questions and ease my mind.

Lindsey- SAHM to Skylar (7-12-01), Leah (10-29-04), id twin boys Addison and Riley (6-17-08, born at 25w4d), and Terran (5-29-11, born at 28 weeks)

skylarsmama is offline  
Old 01-12-2009, 02:11 PM
 
irangel's Avatar
 
Join Date: Aug 2005
Posts: 1,178
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Great idea to have this thread. I have two preemies (29wks and 25wks). My 25wkr will be 3yrs old in 6wks! She spent 225 days in the NICU and came home on a ventilator, oxygen, monitors and has been tube fed since birth. She continues to be about 40-50% globally developmentally delayed and is yet to start saying more than single words here and there. She has a progressive lung disorder, a kidney disorder, growth hormone insensitivity, is glucose intolerant and has a chromosome deletion. All of that combined makes her the sweetest little girl ever.
irangel is offline  
Old 01-13-2009, 03:35 PM - Thread Starter
 
Amys1st's Avatar
 
Join Date: Mar 2003
Posts: 8,322
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thanks Emily! I always love hearing about Dakata.

My Maggie was due June 1st, 06 and came 2/15/2006. She was just over 15 weeks early so she would be refered to as 16 weeks early. I was healthy but had a UTI while pregnt. As a flux, Maggie put her foot into the birth canel somehow and caused me to fully dialate. Since she was a footling, they did an emergency c section a 1/2 hour later. She screamed and came out kicking and pink. She was tranfered to a Level 4 nicu nearby and spent 93 days in the hospital. She was 810 grams or 1 lb 12oz and 12 inches long when born.
As everyone else, they gave us a 50/50 chance of survival and all the other stats. She was vented 11 days until her PDA closed w 2 rounds of the blood thinner. Then she caught a staph infection and went back on the vent and blew the PDA open again. After another round of the blood thinner, she did pretty good. Still the As and Bs and several transfusions but made it to feed and grow and then home.

Today, as she is approaching her 3rd bday, she is a normal child. But as DH says- she is as sweet as pie but subborn as a bull. She is also a tough kid. I guess you need to be like that to survive all she did. DH and I for the first time are looking forward to her birthday and not freaking out and getting PTSD like we did the last 2 years. She has done speech the last 7 months and now she can talk your ear off. DH told her to quiet down the other day and then stopped and slapped his hand to his forehead and said "What did I just say????".

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
Amys1st is offline  
Old 01-13-2009, 04:29 PM
 
buckysprplmonkey's Avatar
 
Join Date: May 2006
Location: Pittsburgh, PA
Posts: 604
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I didnt' realize it, but I guess Levi was a micro too. He was right on the border. 28 weeks, 3 days and 1163 gms. He was diagnosed in utero with amniotic band syndrome affecting the hands and umbilical cord and we underwent fetal surgery at 21 weeks. My water broke due to the ABS and surgery at 28 weeks exactly and was in the hospital for 3 days before we developed a placental infection and went into labor. He was born by emergency cesarean on August 17, 08 and came home October 5th, exactly 1 month before his due date. He was in the hospital for 49 days- exactly 7 weeks. His was a pretty uneventful stay.

He's now almost 5 months old and has been home over three months. He has had no lasting problems from prematurity, but will soon be undergoing some minor surgeries to repair some of the damage to his hands from the ABS (We're just thrilled that he HAS hands after what we went throguh). He is getting synagis this winter and so far hasn't had so much as a sniffle, despite having three older siblings in the house (two in school).
buckysprplmonkey is offline  
Old 01-14-2009, 08:35 PM - Thread Starter
 
Amys1st's Avatar
 
Join Date: Mar 2003
Posts: 8,322
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Ugh that first winter out is rough. We kept in a lot. We skipped the mall, crowds, parties, playgroups or playdates of people we didnt see often, all kinds of precautions. I also remember the shots every month. They were $$$ even though covered by insurance thats still a lot of money.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
Amys1st is offline  
Old 01-14-2009, 11:45 PM
 
sunflowers's Avatar
 
Join Date: Sep 2006
Posts: 2,062
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Our first 2 winters were spent pretty much in near isolation. We did plenty of Dr visits and therapists came out to us but otherwise, dd and I kept close to home.

I remember having incredible cabin fever by this time both winters! I was always looking for new ideas of things to do, so I'll offer one of the best ideas I came across to entertain the baby... Mylar balloons! DD loved them as an infant (lloking at them) and again as a 1yo playing with them. I could get them at the Dollar store and they lasted a few days each
sunflowers is offline  
Old 01-15-2009, 11:34 AM
 
MJ13's Avatar
 
Join Date: Jun 2007
Location: NC
Posts: 438
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Kane was born right at 28 wks weighing 1208 grams - but my water broke at 24 weeks so he had really bad lungs... The Drs said he had basically stopped developing at 24 weeks and was just gaining a bit of weight.

He was on a vent for 4 days, then CPAP for a few days and finally on nasal canula. He came home on O2 and was released getting a lot more than they wanted but I begged . We spent 11 weeks in the NICU and came home at 6lbs 4oz.

He turned 1 this past Sunday and mommy had a pretty hard day -

He has just started crawling and really started babbling a lot. I'm so proud of this little guy!!!

We're doing feeding therapy once a week right now and might be switching to twice a week soon. Recently he has started trying foods that are completely pureed but if it has any texture forget it! We are going this afternoon for his 1 yr checkup and I'm willing to be he's over 18lbs (which is what my full term daughter weighed at a year woohoo!!!!)

We're also getting the RSV shots and tolerating those pretty well.

I'm still feeling a LOT of guilt around breastfeeding I had no problems with my DD but with my DS my milk never came in. I pumped and pumped and tried fenugreek, reglan and finally domperidone. I had some milk for a while with the dom. but it only lasted about a week and since I was still eating a bit of dairy at that point he couldn't even tolerate it when they gave it to him I am still so heartbroken that I couldn't give him my milk - so he is unfortunately an Alimentum formula baby. But he is happy and growing ( I keep telling myself that but it isn't helping...)

I can't believe he's a year already!!! :

Mariah
Mommy to Lily & Kane and we're homeschooling joy.gif
MJ13 is offline  
Old 01-15-2009, 07:20 PM
 
KeLs 37's Avatar
 
Join Date: Jan 2009
Location: Philadelphia, PA
Posts: 8
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I'm new to this board, and also to the NICU. My daughter was born 10/21 due to my IC. I was admitted to the hospital on 10/12 for some bleeding, they put me on strict bedrest in trendellonberg (not comfy at all). I lasted 6 days like that until my water broke at 3am on the 20th. Amelia came at 8:34 am on the 21st. I was in labor from 5pm on the 20th until 8am when I was fully dilated. The nurses did not believe that i was in labor because my contractions weren't showing on the monitor- but i sure felt them!

I was 24 weeks & 3 days when Amelia arrived into this world, she weighed 1lb 7 oz and was 12 inches long. She came out flailing her arms and legs (which i didn't see because i was crying my heart out in fear). She also was breathing on her own, but they did put on her on the oscillator. She was on that for the first 2 days, then cpap for 13 days, then back to the oscillator for another 6 days, then she was back on the vent and was then transferred to a different hospital because she came down with NEC. I have never been so scared in my life- she looked HORRIBLE. She was as white as a piece of paper and had dark blue rings around her eyes, and her tummy was blue. After a couple days she started looking better, then she swelled up really bad, like twice her size, that was also scary, her eyes were basically swollen shut it was so bad.

After almost a month on antibiotics and numerous xrays to watch if she perforated, she got better on her own. They performed a barium enema 3 weeks ago and that went fine, right through. 2 weeks ago they did an upper GI and that didn’t go so well, she had a blockage somewhere so they wanted to schedule her for exploratory surgery. They scheduled her for Monday 1/5- but right before surgery, the opthamologist examined her eyes as she had been following her, and said that she needed laser surgery right away, she had Stage 3 ROP with plus disease. Yet another crazy/scary moment. So they rescheduled the bowel surgery until Friday. She had the ROP surgery on Wed, and turns out the ROP was very close to the center of vision and we were told she would have tunnel vision the rest of her life, I’m getting choked up now just thinking about it all. The exploratory surgery was more extensive than they had expected. Apparently she had perforated in 2 places and they hadn’t caught it. So they had to remove a good amount of her small intestine and we aren’t quite sure how she will do with feedings when they try in a week or so.

My fiancé just told me she now has an infection in her belly and a blood clot in her neck from her first broviak (they saw the clot 2 weeks ago but it was apparently dissipating on its own). They say its in the wall but getting flow around it. She is on antibiotics again for this new infection. My poor girl, I feel so helpless, I just want to hold her and tell her everything is going to be okay. Its been a week since I’ve been able to hold her and its killing me. With everything that’s happened I’ve only been able to hold her about maybe 10-15 times, not enough at all.

I know I’m not to blame for all of this, but I cant help but blame myself. I was playing softball while pregnant, it wasn’t very strenuous and only 1x/week, but still. I wasn’t able to give her breastmilk because pumping wasn’t working. The most I ever got out of one session was ½ an ounce and only that one fluke time. I tried fenugreek and reglan, but that only increased droplets. I feel like such a failure, I have wanted a baby so much, but was told it would be difficult or maybe even impossible because I have a condition called PCOS, but then Amelia came as a surprise, she is truly my miracle baby but I feel so guilty that she is going through all of this. I have always wanted 2 children, but I don’t want to put another baby through this because there is no guarantee that it wont happen again.

I just want my baby home and healthy.

Sorry for the novel, i dont vent often to people because i dont want them to feel awkward because they dont know what its like..
KeLs 37 is offline  
Old 01-16-2009, 11:33 AM
 
buckysprplmonkey's Avatar
 
Join Date: May 2006
Location: Pittsburgh, PA
Posts: 604
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
The nurses did not believe that i was in labor because my contractions weren't showing on the monitor- but i sure felt them!
The nurses didnt' believe me either when I told them I was having contractions 3 min apart until they did an exam and saw a foot sticking out. I think I was the fastest cesarean prep ever for that team, lol (we had complications that would have made vaginal delivery really bad for DS, on top of him being a footling breech). They didn't see the contractions on the monitor at all.

Anyway, congrats on your sweet baby. I hope you find this group as big a help as I did during our NICU stay.
buckysprplmonkey is offline  
 
User Tag List

Thread Tools


Forum Jump: 

Posting Rules  
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off