Parents of Micro Preemies

[Amys1st]

If your baby was under 1500 grams, you had a micro. If your baby was more than 12 weeks early, you had a micro. Lets talk.

How long was your stay, if you're there now, what questions do you have of us who have been there?

Which of these applies to you?
PDA, IVH, ROP, GERD, NEC, PO, PCBC, As & Bs, did I get them all?

What support did/have you received?

[ApplePieBaby]

Elora was 500 grams, 15 weeks early.

So far, she's had surgery for a meconium plug that perforated part of her intestine... but they haven't called it NEC... and for her PDA.

They have a NICU parents support group right at the hospital that meets each Wednesday evening during the shift change & they feed us dinner & have nurses/therapists of various sorts/etc of the staff come talk to us and answer any questions.

[crissei]

I'm not sure if DS counts as a micro-preemie or not. He was 1,299 grams and 30 weeks. He had GERD, A's and B's, and BPD. He was released from the hospital at 47 days old, (36 wks,5 days gestation). He came home on nasal cannula oxygen and continued on that until he was 4 months old (2 months AGA).
He was on thickened feeds for the GERD until he switched to exclusive nursing
(obviously the BM wasn't thickened then )

Another, kind of odd, complication that he had was hypothyroidism, supposedly unrelated to his prematurity. He developed it at 33 weeks gestation. Ironically if he had been full term he possibly would have been brain damaged from the lack of thyroid hormone.
He is on synthroid, we may be able to stop that at 2 but, it may be a lifelong thing.

[twins10705]

Malachi was 965 grams and Asher was 1265 grams, both born 11 weeks early.
Both had PDAs, Malachi's was asymptomatic so they did nothing. Asher's was wide open after some trauma with one of his lines(and he went back on the vent because of it), but shrunk to very small after one round of endocin.
Malachi worked through a sepsis infection the second week of his life. He came down with hypothermia at 5.5 weeks after his brother came home(they were cobedded in an open crib). He had double inguinal hernia repair surgery when he was three months old(did not like the anesthesia - big scare). His huge umbilical hernia finally finished up closing on its own about a month ago. He seems to be doing quite well now, except for his oral aversion...we are going on two weeks now that he completely refuses to nurse. He'll only take a certain type of bottle held in a certain way. His total NICU stay was 51 days and he came home weighing 3lb 12oz.
Asher was bigger and fared better(ie no infections), though he went back on the vent for three days when he was four days old(due to neglect of one of his lines which went bad and caused his leg to swell to 3X normal size -- the trauma opened up the PDA which made it too difficult for him to breathe on just the canula). It took 5 months of working at it till he finally started nursing and hasn't looked back(well there was that one three day strike when he got his first teeth ). His total NICU stay was 41 days and he came home weighing 4lb 6oz.

[jkpmomtoboys]

Originally Posted by Amys1st

If your baby was under 1500 grams, you had a micro. If your baby was more than 12 weeks early, you had a micro. Lets talk.

How long was your stay, if you're there now, what questions do you have of us who have been there?

Which of these applies to you?
PDA, IVH, ROP, GERD, NEC, PO, PCBC, As & Bs, did I get them all?

What support did/have you received?

Ds was 1475 grams and 29 weeks. Was he a micro? Not in the definition used by UCSF, but I am happy to jump aboard the thread.

Our stay was 50 days. Of the list you mentioned, we didn't suffer from those, though I think we had A's and B's--it's been a while. Our biggest hurdle was severe reflux.

[sweetpeasmom]

Mine was 750 grams, 15 weeks early. All she had was As and Bs, honestly not even sure what the other stuff you mentioned are luckily. She had a small bout with reflux when she was put back on caffiene but was only on it for a month, then the relux slowly went away.

She was in the NICU/SCN for 102 days and came home at 6 lbs 7 ozs.

There was a moms group there and also a psychologist I spoke with and I forgot what her exact title was but she was a former nicu mom who was there to help us out.

[munkeesmama]

I'm Elaina, mom to my micro preemie Emma Who was born at 27 weeks 2 days. weighing 2 lbs 2 oz. and got down to 1 lb 10 oz. I've forgotten the grams. LOL. Our nicu stay was 9 weeks and 4 days. Emma had a pda at birth but it was resolved with meds. She also was very jaundiced and under the bili lights for quite some time. She was on a vent for a week. They removed it and she went onto a nasal canula but the very next day she went back on the vent for another 2 weeks or so. Once going back on the oxygen she stayed on it until about a week before we came home. She liked that 30% oxygen. Which leads me to her ROP (retinopathy of prematurity). They're thinking it may be caused by her long time on the oxygen. After over a month being home we were back in the hospital and she had eye surgery to stop the rop from progressing. She didn't want to come off the vent after surgery and continued to have a's and b's after coming off the vent for a week. So after a week she came home again. Aside from the typical preemie things she didn amazing. Her feed were started and stopped a few times for blood in the stools which were never explained and we're still facing issues with her eyes and she's going to OT now for development. But she is truly amazing. You can read the whole story on my blog. www.munkeesmama.blogspot.com I wish I had found this forum while we were still in the nicu!

[munkeesmama]

Originally Posted by twins10705

He seems to be doing quite well now, except for his oral aversion...we are going on two weeks now that he completely refuses to nurse. He'll only take a certain type of bottle held in a certain way. .

Emma also has an oral aversion she will only take a certain bottle. Has issues with pacifiers and we have to somewhat slide the nipple of the bottle through the side of her mouth and over her tongue.

[Amys1st]

I forgot to post my Maggie

Maggie was born 24 weeks 6 days, 12 hours along but was considered a 24 weeks. She was 1 lb 12 oz or 810 grams. 12 inches long on feb 15th 2006

As of today she is just shy of 10 lbs at 5 1/2 mos.

Her stay was uneventful in the NICU compared to some babies there. 93 days. Maggie had an open pda and it closed after 2 rounds of the meds. Then after she had feeds and went off the vent, she got a central line infection and back on the vent and boom- the pda opened again. She was scheduled for surgery etc and then the last round of the meds- it closed.

She had plenty of transfusions, a few infections and plenty of apnea. but she out grew the apnea and went home on monitors and 1/36 of oxygen which she pulled out around a week or two into it. All that is behind us but now we are just letting her grow!

Our biggest issue w DH & I is seeing Maggie do soo so well and seeing other babies not. We watched a couple being told their baby was going to die, we saws others hear about their child's grade 4 IVH, we saw countless babies checked in etc. We bonded w quite a few parents and even had a nicu dinner at our house. When we left we suffered PTSD. We still are. Its not as bad though. We both felt like we left our friends behind in the trenches and went to better places.

[aris99]

Caidren was born at 26 weeks weighing 750g. She was in the NICU for 11 weeks. She had a PDA, some problems w/digestion but not NEC, reflux. 7 mos later she has some cp-like issues (they don't consider it true cp until 2 yrs I think) and she is on neocate due to food allergies. Even on bm she had chronic diarrhea.

Curious as to how many other micros have some residual cp-like tendencies?

[5xmom]

Joey was 1350 and then down to 1150 (she was swollen at birth from infection) within 2 days. She stayed in the NICU for 70 days and had A's+B's, reflux, infection. She is now 8+ months and 11 pounds, so slow weight gain is still an issue. She does seem to have some motor issues that worry me - particularly that she folds one arm over in a weird way - I'll see if I can post a pic. She was exactly 29 weeks but the docs feel she acted more like a 28 weeker.

[5xmom]

Can't find a pic of the arm, but here's the preemie head!

http://www.borninaugust.com/pictures...oey_at_8mo.jpg

[kondonis]

hi everyone!

so nice to see this subforum! I checked the request thread randomly today and was soo soo happy to see it!

my son Will was born last february at 24 weeks, 3 days weighing in a hefty 800 grams (14lb, 12oz) and 12.5 inches long. he spent 173 days in the NICU between two hospitals - and dealt with the following -

RDS/CLD
PDA ligation
NEC - removed most of the illium
double barrel ostomy
TPN fed for 5 months and suffered liver and spleen isssues
ROP 3 laser surgery and is now -3 vision (near sighted)
gtube (just got this out a few weeks ago)
needed enteral feeding (tube) until his intestines grew back
sepsis
developmental delay.

Now at 17 months actual, 13 adjusted, he is off the gtube, breathes well, and is on track developmentally (started walking last month).

He's 24 lbs, 10 oz and 33 inches long. we've come a LONG way.

I am so glad this subform is here - I will probably spend most of my time here.

I don't have too many posts, but that will change soon!

nice to meet all of you -

any of you from the bay area?

[Amys1st]

Welcome Kondonis!
I only wish I was in the Bay area!

My dd Maggie is also a 24 weeker but it was 24 weeks, 6 days and 18 hours. So it defaults to nicu standards that way but I say 25 weeks since in another few hours she would have been 25.

I'm glad your boy is doing well. It sounds like you had a long way getting to this point.

Are you using Early Intervntn?

[Amys1st]

I am lucky enough to know about nursing before Maggie was born. I am nursing her round the clock and as much as her sister. But she is gaining weight and growing like a weed. I nurse her as much and she still needs a bottle or two to supplement. Any one else?

[kondonis]

hi amy -

sounds like your maggie and my will were about the same size - 24 and 25 weekers can be. you beat me by 4 days though - did have any time before Maggie came to get the steriod shots? I had 4 hours - it was quick! I didn't get it and Will had a lot of breathing problems and gut problems as a result.

we do get early intervention - since will was discharged last year. we get OT twice a week since February and since he's walking now expect to go down to 1x a week. it's amazing and so so important for them.

what are you guys doing in your therapy?

stella

[Amys1st]

Hi Stella!

no EI here since Maggie is only 6 mos old but who knows down the line.

MAggie was a footling breach. I had a nasty UTI and a irrable uterus. She was in the breach position and stuck her foot in the birth canel. With all this, it caused a tear in the sac and then I fully dilated. With all the uncomfortable feelings, I was at my OB and he confirmed I was fully dilatated. If I wansnt there, God knows what would have happened since she was in that position. So at 4:45pm, he confirmed it, my dh (who worked down the street) came in at 4:50 and at 5pm I was at the hospital which was a mile away. Maggie was born at 5:56 via c section and transported to the Level 3 nicu an hour later.

So no time for steriod shots. She was on the vent for 3 weeks, would have been earlier had she not had the pda close which did after 2 rounds of meds but then reopened from a central line infection. It closed again after another round of the meds though and that was the last of the vent.

[sweetpeasmom]

Megan has had EI since she was about 2 mths old. She had some low muscle tone and had a hard time sitting and crawling. But once she mastered that, she didn't stop and just went full steam ahead. We are still doing EI, once a month focusing more on speech, she is labeled as mildly delayed but we all think she's just perfect.

I was able to get 2 rounds of steroids in and Megan was still on vent for over 3 wks, so sound like Maggie did great!

[jenmparrott]

My micro was 27 weeks, 2 pounds, 7 ounces, 14 inches long. Had PDA ligation after 3 rounds of meds, A's and B's (still having them and still on monitor), BPD, ROP, and severe GERD. We spent 9.5 weeks in the NICU and we found very little support there. He came home on 7 meds and monitor and 1/4 litre of O2. He is now off finally and we still have issues with all of it. He is 6.5 months old (a little over 3 months AGA) and 10 pounds exactly. He is formula fed due to an absorption issue in his tummy and the fact that I had to have a hysterectomy due to cervical cancer. But other than that doing GREAT!

Jennifer

Cody (9.1.04) 36 weeker with SEVERE GERD that needed surgery and vent support
Caleb (2.5.06) 27 weeker with all the above!

[melissa725]

Originally Posted by Amys1st

Hi Stella!

no EI here since Maggie is only 6 mos old but who knows down the line.

MAggie was a footling breach. I had a nasty UTI and a irrable uterus. She was in the breach position and stuck her foot in the birth canel. With all this, it caused a tear in the sac and then I fully dilated. With all the uncomfortable feelings, I was at my OB and he confirmed I was fully dilatated. If I wansnt there, God knows what would have happened since she was in that position. So at 4:45pm, he confirmed it, my dh (who worked down the street) came in at 4:50 and at 5pm I was at the hospital which was a mile away. Maggie was born at 5:56 via c section and transported to the Level 3 nicu an hour later.

So no time for steriod shots. She was on the vent for 3 weeks, would have been earlier had she not had the pda close which did after 2 rounds of meds but then reopened from a central line infection. It closed again after another round of the meds though and that was the last of the vent.

Amy-
I just came across this site last night and was anxious to write in. I just gave birth to a 24 weeker on July 25. Baby Charlotte was 24 weeks, 5 days weighing 1 lb. 6 oz. and 13.25" long. Her feet were also haning in the birth canal. I did my best to keep her in longer (in Trendelenburg for 4 days) until I started bleeding and was taken in for a section. She will be 4 weeks tomorrow.
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