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Support for parents of preemies & NICU babies, #2 - Page 3

post #41 of 284
Quote:
Originally Posted by etoilech
Many hugs to you.

How is she doing now? Good I hope.

Olivia
Thanks.

She is up to 7 lbs 6 or 7 oz. She is growing about 2/3 of an ounce a day and they want her to grow a full ounce a day so they are stressing me out. I can only guess that when we have to take her back at the end of the month they are going to want to supliment her with formula.

That's another thing, some one here, I don't recall who, mentioned not seeing formula in their NICU. I am not sure any child is discharged from our NICU NOT on formula of some sort. Even if the bf is going well and there is no supply issue or anything most prems "need" to have two feeds a day of special formula here.

Just makes me so angry when I think about her start in life. Yes, I am grateful they were there and could save her life (her apgars where 1 & 3) but they could have been more baby and bf friendly.
post #42 of 284
Quote:
Originally Posted by ErinEmily
She is up to 7 lbs 6 or 7 oz. She is growing about 2/3 of an ounce a day and they want her to grow a full ounce a day so they are stressing me out. I can only guess that when we have to take her back at the end of the month they are going to want to supliment her with formula.
Wow, you guys are doing great! I wonder why they are so hung up on one ounce a day. That is a lot. Do you have a good pediatrician? That can make all the difference. They can fihgt some of the battles for you. I would say as long as she is gaining steadily, I would ignore them and their formula. Does she have any other issues besides, just being premature?

As a mum to a preemie, I was told to count diapers and he was weighed every 2-4 weeks. We have a mother's clinic where you can go to weigh the baby when ever you like. I'm just a bit confused why they would suggest formula when you're doing well breastfeeding and she's gaining. I'd get a second or even third opinion. The formula is certainly not going to help your milk supply. Are they going to have you add the formula TO your milk to increase the calorie load? B/c the formula itself is not as calorie rich as your milk, even the preemie ones so I've been told.

Your little one sounds like such a fighter. I hope you can get all the silly things with the doctors sorted out.

A page that really helped reassure me when I was nursing Erik is www.kellymom.com

Keep in touch.

Olivia
post #43 of 284

Our Birth & Nicu Story-long(naturally)

It's been very healing to read all the NICU stories posted here and in the old thread, and it's gone a long way towards making me feel not so alone. I thought I would finally add my story as well.
My pregnancy seemed perfectly healthy all along, and I read everything I could get my hands on, researched and did everything I could to keep everything perfect. DH and I took a Bradley class. I switched providers at 20 weeks to a wonderful CNM who was really dedicated to natural birth. I hired a doula(monotrice actually) with a great reputation and many years of experience. We planned to deliver at a hospital a few towns over with a reputation for respecting mamas. I followed the Brewer diet, took my vitamins, did prenatal yoga, attended my midwife appts religiously, got regular chiropractic adjustments and all those other wonderful natural pregnancy things. DD was an athletic mover the whole time, and her heartbeat sounded good at every appt. I even had a 36week ultrasound (to check size since I was measuring a bit big for a few weeks in a row-was extra fluid), and she looked perfect-est. size was 6lb 4oz then, so we were expecting a big baby, and I was feeling really thankful to have a midwife that wasn't scared of a big baby and really believed in my body's ability to birth.
I worked up until 38weeks 6days, then went on maternity leave. I had been waking up with braxton hicks every night for a couple of weeks that petered out about an hour after I would get up and moving, and I was really ready for some rest. The following Tuesday (39w3d) I woke up with the same, got my morning cereal, checked my email and later realized the contractions had not dissapeared. They weren't very intense, but already less than 4min apart. My mom and grandma had histories of fast labors, so I called my doula & mama to let them know. I got dressed and DH and I went to his chiro appt. Still contracting when i got home, so I told mom, sis & aunt friend to come on over. Since they weren't very intense DH went to work for the morning (his coworkers gave him a baby shower that day too )I had a couple of hours before anyone got there, and I baked a "Birth Day" cake with a 0 candle on it. My family arrived with some Wendy's for lunch, and DH came home for lunch shortly afterwards. By then the contractions were a little more intense, and getting closer together and longer (every 3min, 45sec long) so I called my doula to head on over to check me. I think she took in the Party atmosphere and expected to find very little, but her dropped a little when she told me I was already a stretchy 6cm. We hung out for a little bit longer, but when I started feeling very quiet and a bit nauseous, we decided to head for the hospital. Got there about 5:00pm and contractions had slowed way down, but I knew that could happen so I just prepared to try to relax once were settled in. They hooked me up to the monitor for the mandatory initial strip and were concerned that the hb was dropping with each contraction. They put the telemetry monitors on me and moved me to a room. We tried alot of different positions to see if it helped her hb. Had some problems with the monitors not picking it up too. Midwife's supervising OB came in to consult with us. Being upright helped a little at first, but when it started dropping again, we decided to break my water to put on an internal monitor to verify what was going on with her.
When the OB broke my water there was no fluid, but lots of brownish green gunk (meconium, but much more than i would have imagined a baby could have). The internal monitor confirmed her distress and we headed to the o/r for a c/s. I remember being insulted that the OB assumed my biggest concern was the loss a natural birth (cause we just do it for the experience, right? : ) Thanks to the Bradley class I was more than educated enough to know that we were looking a true fetal distress, and while I was definately scared and dissapointed, my natural birth was the least of my worries at the time.
I was still contracting, but no longer measurably progressing by now(had actually dilated backwards-not sure if that was true change or difference in people measuring. with the stress, I might have actually closed some), and going to the o/r and getting my spinal was the first time the contractions really seemed unbearable. state of mind and feeling safe makes such a difference.
They didn't show us the baby when they pulled her out at 7:19pm. She wasn't breathing and was covered in meconium at the time. They reasuringly told us that they just needed to suction her and clean her a bit.
My midwife was great, came into the o/r and held my hand the whole time, which was a big comfort when they called DH over for a peek at the baby while they were working on her. He wasn't gone long, but I felt very alone. She still wasn't breathing when they wheeled me back to our room.
I lost alot of blood, and wasn't entirely coherent as they wheeled me back to my room afterwards. I was shivering uncontrolably from the anesthesia too. We waited, and the minutes turned into hours without any news. Our pastor had been called and told that we had a rough start, and he came to be supportive.
A little before midnight, the neonatologist came in to speak to us. Most of what she said was a blur to me. Apparently I had placental problems, that had limited her nutrition, O2, and decreased the amniotic fluid. No one could ever tell me why though. I remember that her cord was around her neck twice and had been compressed during labor (causing the decels during contractions i think). She had lost weight since the last ultrasound. She only weighed 4lb 10oz. They could barely believe that she had been as active and strong as she had seemed those last few weeks. Her heartrate and movements then had never, ever given us cause to worry.
She had suffered a stroke at some point and had probably been in distress for a while. I remember the words "brain damage". They said if (yes, IF) she made it through the next few hours and days, then she had a good chance of survival, but they couldn't tell the extent of the damage and how it would affect her. They said if she didn't improve quickly she might need to be moved to a bigger city for ECMO. A few minutes later they brought her in for me to see her for first time. I actually didn't see her the day she was born, since this was well after midnight. They were getting ready to transfer her by ambulace to the main hospital NICU across town. She was in an isolette and had so many tubes and wires. Our pastor baptised her through a little port hole in the box, and I got to stroke her hand for a few seconds before they whisked her away.
They tranferred me to the main hospital a little later that night and I saw her again about 3 am. The nurse and Dh helped me out of bed and I fell as well as i could into a wheelchair.
That was when the miracles started. When she arrived in the NICU they put a new tube into her lungs to try to clear some more of the fluid and meconium, and it began clearing immediately. They were able to start turning down the O2 on her ventilator the very next day. She was off the ventilator by saturday when i was discharged and moved to the ronald mcdonald house accross the street. Sunday (Easter Sunday) DH and I got to hold her for the first time. I was having a tough recovery, but I pushed myself to be by her bedside as much as possible. They gave her her first tube feeding that monday. They gave her 1cc of formula for her first tube feeding because the nurse didn't think to check the freezer for my milk. (I had started pumping breastmilk for her the day after she was born).
In retrospect I'm dissapointed in the way they treated parenting and breastfeeding in our NICU, and in myself for not being courageous enough to question the treatment of my daughter. (there were two great, encouraging, AP style, kangaroo care encouraging nurses, but the rest were very
"old school") We were discouraged from holding her too often (they said it would tire her out). They wanted her to take a bottle before they would let us try breastfeeding. But they were worried about feeding her a bottle though because she wouldnt suck a pacifier(arrgh!!), so she kept the tube in until the next sunday when my little girl pulled out the tube herself. (Yey!!) The nurse gave her a bottle(at least it was of my milk) and she took it right down. Monday they let us try bfeeding for the first time (not a success) but I was thrilled to hold and cuddle her and feed her the bottle at each feeding time. I was just craving my baby so badly by then!
Then Tuesday (as I was attempting breastfeeding again with another lactation consultant) the doctors came around to make their rounds, and stated that they would take her off her IV fluids, and If she did well, discharge her the next day! I was stunned and had both the nurse and the LC repeat what I had just heard. My little angel was coming home! From not being sure if she would make it, to homecoming in 15 days. We were stunned again and this time in a good way.
We haven't had an easy road since being home, but she gets stronger and more beautiful every day. We follow up with a neurologist regularly, and get regular OT. All the doctors and therapists have been so pleased with her progress. Babies brains are so flexible and resiliant, still forming new connections, that in the future, possibly no one will ever know that she even had a stroke. She has some very mild weakness on her right side, so she has to work a little harder than other babies to meet her milestones, but so far she's done everything on time, or even early! She's been described as socially precocious too!
The biggest issue has been that she never latched on to the breast. Despite more lactation consultants and la leche league help, and sooo many tears at every nursing attempt, I'm still pumping breastmilk and feeding her with a bottle. I try to "bottle nurse" though, and make sure she's held every feeding. I really grieved (and am still grieving) the loss of a nursing relationship with my little girl, but as she's still growing strong on my milk, I'm making peace with it. I also think about it a little less now that she's so much more active. She has the most beautiful little smile, and the prettiest little features. She was so thin and gaunt when she was born and now she's chubby and adorable, she looks like a different baby every time I turn around. Everyone stops us when we're out to tell me what a pretty baby she is. (Can you tell I'm proud? lol)
She's not a great sleeper, and we get lots of advice (CIO, mostly ) to help us get more sleep, but we love co-sleeping and our Ped has been very supportive. He said alot of NICU babies are just very alert and very light sleepers because of the hyper-stimulation in the hospital, and It's definately not anything we're doing as far as "sleep habits". I've started telling everyone who questions her frequent nightwaking that she's advanced and learning to count (1am, 2am, 3am, 4am, LOL) Laughter counters the criticism.
She loves to ride in and sleep in our slings though. We have 4 now! LOL just got a solarveil water sling and dh took her into the pool with him. fun!!
We've also started cloth diapering, and that's turned into our new obsession. She's still tiny, so the CDs poof up her bum to wear some of the cute bigger clothes we have. LOL
Her neurologist had considered taking her off phenobarb since she hadn't had any repeat seizures, but an EEG last week still looked very abnormal, so we're staying on the meds for another 6mos.
It's been quite a roller coaster, but I finally feel like we're settling into our new role as a family, and I'm definately head over heels in love with my daughter.
Thanks to everyone for "listening"
Heather
Bridget Ann 3/22/05
post #44 of 284
Welcome Heather! Your story is so moving. You've all been through so much.

The breastfeeding is hard and doesn't get better without constant work. It sounds like you've been doing everything and time is just what's needed. How amazing that you've given her mama's milk all this time.
post #45 of 284
Another welcome Heather. I am so glad to hear your daughter is doing so well. Good for you for pumping. You are an iron woman. I had to do it for 3 months when DS was in the NICU, pumping mamas have my utmost respect. It must make you happy to see her thrive because of your hard work.

My son has mild cerebral plasy. He also attends PT and soon OT. Neurologists are tricky creatures aren't they? We finally found a fabulous one. I wish you the same luck.

I am always so happy to hear a good outcome after a rough start. Hang in there and admire your little one for me.

Olivia
post #46 of 284
Quote:
Originally Posted by ErinEmily
She was 20 days old before I was alowed to hold her, .

That's just horrific. I bet you hold her much closer now because of that.


Meg
post #47 of 284
Quote:
Originally Posted by faerybugmady
That's just horrific. I bet you hold her much closer now because of that.


Meg

Thanks. Yeah, I try and hold her as much as I can. It's funny though, she is much less of a happy sling baby than my term son. She seems to LIKE laying in the bassinet in the middle of the kitchen rather than the sling as I make supper.

I guess I have to listen to her wants and needs and respond accordingly.

Erin
post #48 of 284
Quote:
Originally Posted by mizmerricat
When the OB broke my water there was no fluid, but lots of brownish green gunk (meconium, but much more than i would have imagined a baby could have). The internal monitor confirmed her distress and we headed to the o/r for a c/s.


They didn't show us the baby when they pulled her out at 7:19pm. She wasn't breathing and was covered in meconium at the time. They reasuringly told us that they just needed to suction her and clean her a bit.

They said if (yes, IF) she made it through the next few hours and days, then she had a good chance of survival, but they couldn't tell the extent of the damage and how it would affect her. They said if she didn't improve quickly she might need to be moved to a bigger city for ECMO.

Sunday (Easter Sunday) DH and I got to hold her for the first time. I was having a tough recovery, but I pushed myself to be by her bedside as much as possible. Heather
Bridget Ann 3/22/05
Heather - these things are exactly what happened with us(except we did need to be moved for ECMO). Including getting to hold her for the first time on EAster Sunday.

I am glad to hear that Bridget is doing so well.


(((((((((HUGS)))))

Lisa
post #49 of 284
I haven't read everyone's stories yet, but I'll post mine. my NICU baby will be 3 in december and I'm really trying to finally work through his birth before I give birth again (in Feb).

here is the birth story
http://schnoogly.com/pages/birthstory.htm

and the surgery stories (warning--some scary pics on these pages)
http://schnoogly.com/pages/birth/our...iainsheart.htm

Short version--DS was born full term after a long, painful labor and vacuum extraction and dx with a severe congenital heart defect a few hours after birth. He was in the NICU for 14 days, had surgery, came home at 17 days. Spent another 6 days in peds cardiac ICU after a second surgery at 3 months.

I suffered severe PPD and have been on meds for a couple years, and am currently in therapy for PTSD as well related to the birth and surgeries. I'm trying to work through/around? the fear of another traumatic birth and complications while pregnant. Anything that helped you prepare for another birth after a traumatic/NICU experience?
post #50 of 284
I am subscribing to this thread.
I posted on the original, heading back there now to see what all I have said before I post a story here.
post #51 of 284
It's been awhile since i've posted on this thread.

I know what you mean about holding your baby. I wasn't able to hold until she was around 3 weeks old. I remember it like yesterday, it was Halloween day. The put a little special pumpkin hat on her. It was just such an odd feeling holding her for the first time, she wasn't even 2 pds yet, she seemed like a little doll.
I hold her a lot now. It was so nice to be home and to be able to hold her whenever I wanted. I kiss her like a million times a day and give her lots of hugs everyday, trying to make up for all the lost time we had together.

She turned one last week. It was a tough week as i kept reliving the whole experience over again. But I'm so fortunate I have her in my arms and in good health now, so that I am thankful for.
post #52 of 284
I've been wondering what dd's 1st bday will be like here. I have a hard time wrapping my mind around the idea of celebrating that day. I think it will get easier as time passes, and maybe it won't be an issue by the time she's old enough to know what a birthday is. But this first one will be tough. I still see that basically as the worst day of my life (and then I feel guilty for feeling that way). After all, it's the day I almost lost her....
I get to thinking about the moments that make a birth wonderful and special...seeing the baby, baby's first breath, first cry, holding the baby, etc, etc...and none of those things happened that day. It was well past midnight when I finally got a glimpse of her. Her first breath wasn't really until she came of the ventilator. It was a few more days before we heard her first cry because her throat was so sore from the vent. We didn't get to hold her until her chest tube and umbilical IV came out (Easter Sunday...and that's what I think of as the happiest day of my life ).
Just rambling here....I am sure it will get easier as time passes..
How did some of the rest of you celebrate/mark/commemmorate/get through the first birthday for your NICU baby??
post #53 of 284
Another NICU mom here. My little Clara was born at 32 weeks after the most uneventfull pregnacy ever. I'll post her birth story another time (I'm too tired and emotional now after reading this thread).

A note to sleepymama: the book Birthing from Within has some wonderful stuff about healing from a traumatic birth, not NICU specific, but still good.

I'm really glad to have found this thread.
post #54 of 284
I have a first birthday coming up soon here, and I'm really having a hard time with it. She'll be 10 months tomorrow, just barely learning to crawl, and I haven't yet bought invitations, or made any plans for her birthday. I know I need to, since it is around the holidays, but it is hard.

I went to a NICU/SCN reunion at the hospital, and that was hard as well. There wasn't anyone there I recognized, as I got there early. It was only as I was leaving that I saw her doc. It made me feel guilty all over again about not going to the hospital enough because I was trying to be with my other child, who really needed to have life be normal for her after all the events around her sister's birth.

I'm glad to be able to express the thoughts to other mamas. I still feel all the time like I have to explain that my dd is a preemie. I feel that the emotions are still so close to the surface after all this time, and I still mourn the birth I wish I had.
post #55 of 284
I didn't get to hold her til 3 weeks after she was born. It was actually the day before Halloween that I held her for the first time. They gave her a little pumpkin hat It is just so sad that I didn't get a chance to hold her or see her after she was born, same thing happened with my first. i really wanted to hold my babies as soon as they were born but that wasn't meant to be

Lousli- I kind of felt guilty also about not spending more time at the NICu but I didn't want to ignore my other dd as well considering that was the last few months that she would the only child in the house.
post #56 of 284
Bumping this thread so Farmlife3 can find it. Hugs to you mama.
post #57 of 284
Hi - I've been looking for this group! I have a new daughter - born at 29 weeks and currently in the NICU. I also have 3 other kids who were preemies, although my youngest is also my earliest. I had a cerclage with this pg and did the p17 shots weekly. I really thought I'd go further, but my water broke at 27 weeks and I made it to exactly 29 before delivering a month ago. My daughter is doing pretty well, although she has more breathing problems than my other preemies did. She is now off Cpap but still needing some occasional o2 support.
post #58 of 284
Congratulations 5xmom! I'm sorry to hear you had another preemie despite your best efforts, though. My son was born at 29 weeks and is a healthy little boy. How's your daughter growing? Well? I remember vividly how tough it is in the NICU. I hope you're holding up.

Keep us posted on her progress.

Olivia
post #59 of 284

New to the thread...

My husband and I are currently pregnant for the second time, with monoamniotic twin girls. The girls are in the same amniotic sac and risk cord entanglement and compression that could lead to their death, every hour of everyday. There will either come a time after 26 weeks that they will be delivered in an emergency when we see signs of stress, or they will be delivered at 32-34 weeks simply because their safety is threatened the longer they remain inside.

I am scared to death of what this birth experience holds for me, my family, and mostly the girls. We were told to schedule a tour of the NICU to help educate ourselves and begin to accept where the girls would spend the first part of their lives. We are in a unique situation... from reading your stories I know that we are lucky to have advance time to prepare ourselves.

The girls will be delivered by c-section, possible under general anasthetic in the event of an emergency. How can I stand missing hearing the first cry or touching them while they are still coated in blood and vernix? What if we can't hold them at all for several days or weeks? I can't get myself to come to terms with it just yet.

Thank you all for sharing your stories. It does help hearing how supportive the NICU staff will likely be to our family. If you could tell us one thing that you wish you had've known before birth, what would it be?
post #60 of 284
Anna,
to you! What a stressful time you must be going through!! Being pregnant and responsible for another life is a big deal under the best of circumstances. To be carrying two who may have problems..wow! again!
It's hard to say how much you can prepare yourself for the NICU and those early, tough days. My dd was not early, but very sick, and it was a complete surprise to us, so we had no time to prepare. I would highly, highly recommend Dr Sears' The Premature Baby Book. I got this book about a week into our NICU experience, and even though it didn't all apply to us since dd was term, so much of it did. It did wonders in helping me understand what was going on, and when he talks about emotions that come from the traumatic experience, I simply burst into tears to know I wasn't so alone!! I seem to remember that he also addressed preparation for parents who knew ahead of time to expect a preemie. It might also give you tips and questions to ask when you tour the NICU.
I noticed you're from Knoxville, TN, And just to be nosy, , I was wondering if you will be delivering there or traveling to Nasheville or Chattanooga?? My dd spent her NICU stay at Erlanger/TC Thompson's in Chattanooga.
She got wonderful care there. My only complaint was that the staff was not that educated about breastfeeding, and I feel like their bottlefeeding and policies may have contributed to our nursing problems. It's a relatively minor complaint in comparison to the miracle that is my dd. And with your extra time you can be more educated and prepared to deal with that question later if it comes up.
One more and lots of : for the health of you and your little ones!!
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