Parents of Micro Preemies - Mothering Forums

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#1 of 43 Old 07-26-2006, 11:26 PM - Thread Starter
 
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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?

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#2 of 43 Old 07-26-2006, 11:36 PM
 
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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.

Jayme-
Boy13, Boy12, Boy10, Girl7, Girl5, Twin Boys 6/14/09
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#3 of 43 Old 07-26-2006, 11:58 PM
 
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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.
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#4 of 43 Old 07-27-2006, 12:15 AM
 
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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.
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#5 of 43 Old 07-27-2006, 02:28 AM
 
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Quote:
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.

Jen, former attorney and now SAHM to 11 yo ds and 8 yo ds

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#6 of 43 Old 07-27-2006, 07:54 AM
 
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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.
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#7 of 43 Old 07-27-2006, 08:15 PM
 
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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!
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#8 of 43 Old 07-27-2006, 08:18 PM
 
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Quote:
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.
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#9 of 43 Old 07-27-2006, 10:14 PM - Thread Starter
 
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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.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#10 of 43 Old 08-05-2006, 08:36 AM
 
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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?

mum to 3, 8 yo dd: 6yo ds and 4yo dd
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#11 of 43 Old 08-05-2006, 11:29 AM
 
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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.
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#12 of 43 Old 08-05-2006, 11:37 AM
 
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Can't find a pic of the arm, but here's the preemie head!

http://www.borninaugust.com/pictures...oey_at_8mo.jpg
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#13 of 43 Old 08-07-2006, 07:32 PM
 
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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?
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#14 of 43 Old 08-07-2006, 08:02 PM - Thread Starter
 
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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?

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#15 of 43 Old 08-07-2006, 08:11 PM - Thread Starter
 
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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?

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#16 of 43 Old 08-09-2006, 03:00 AM
 
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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
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#17 of 43 Old 08-09-2006, 09:32 AM - Thread Starter
 
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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.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#18 of 43 Old 08-10-2006, 08:30 AM
 
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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!
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#19 of 43 Old 08-11-2006, 02:18 AM
 
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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!
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#20 of 43 Old 08-21-2006, 02:43 PM
 
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Quote:
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
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#21 of 43 Old 08-21-2006, 03:18 PM
 
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"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*
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#22 of 43 Old 08-21-2006, 04:24 PM
 
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"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?
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#23 of 43 Old 08-21-2006, 06:24 PM - Thread Starter
 
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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.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#24 of 43 Old 08-21-2006, 08:46 PM
 
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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.
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#25 of 43 Old 08-22-2006, 01:12 AM
 
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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

-sarah-
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#26 of 43 Old 08-22-2006, 09:25 AM
 
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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
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#27 of 43 Old 08-22-2006, 11:31 PM
 
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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.
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#28 of 43 Old 08-23-2006, 11:45 AM - Thread Starter
 
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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.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#29 of 43 Old 08-23-2006, 03:06 PM
 
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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
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#30 of 43 Old 08-24-2006, 12:10 AM
 
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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!
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