Support for parents of preemies & NICU babies, #2 - Page 4

[eilonwy]

My son wasn't premature either, and I had no clue that anything might happen which would necessitate NICU time... I was totally not open to the possibility, and beyond shocked when it happened. I'm glad that you have some time to prepare for this, even though it's not the most fun thing, knowing in advance has got to be a bit of a relief. I wish you and your girls the best of care!

[sweetpeasmom]

Gabrielle- SOrry your sweet baby came too soon but glad to hear she's doing well. Mine came at 25 weeks and she's as healthy as they come now
Anna- We so understand. I think a tour is a great idea, it can be over whelming upon your first visit. Being prepared is the best thing you can do, as after they are born it will be a very emotional experience but hopefully they will be born later, so they will most likely not have as long of a NICU stay.
I wrote a little something about the first few weeks of our stay, let me go dig it up. I'll post it next

[sweetpeasmom]

ok here it is:

It was a beautiful Sunday day in October. I was 24 weeks pregnant and had just finally gotten out my maternity clothes for the first time to wear that day. It was a lovely day, we went to an apple farm. Little did I know at the time that would be the last day me, my husband and daugher would do a family outing with just us. I was just starting to feel like i was actually pregnant, showing and had just started feeling the baby kick a few weeks prior. I so desperately wanted a wonderful natural birthing experience with this baby, one that i missed out on with my first baby.
Three days later I noticed some bloody mucous. Not much really to concern me at the time but I thought it over and decided to give a call to my OB anyways. They had me come in and upon examination, I was found to be 2-3 cm dialated with my water bag bulging. I instantly began to cry, i thought i was going to lose the baby. I was brought to the hospital and I stayed there for 6 days desperately trying to keep my baby in for as long as possible. Being on the labor and delivery floor was very heart wrenching. Day and night hearing all the births around, babies crying and then bunch of clapping and cheering. I knew that was never meant to be for me.
After six days in the hospital, I ended up giving birth. Not the birth I planned for, not the birth I hoped for, not the birth I dreamed of. I did do it without any pain medications and was able to deliver vaginally. It happened very quickly, as I went to 10 cm without any contractions. As soon as I pushed her out, I started crying. I wasn't able to hold my baby, i wasn't able to see my baby and all I heared was a brief peep that she made. They had a bunch of people surrounding her and getting her intubated. All these people laid eyes on her before me, all these people touched my baby before me. I cried hysterically for about half an hour. I caught a brief glimpse of her leg as they whisked her away to the NICU. After I finally stopped crying, my cousin brought in my other daugher and I felt better. Actually I felt sorta numb to the whole experience I just had. I physically didn't feel like I just gave birth. I sorta blocked out the whole experience and just supressed my feelings in front of my family. I went about and ate my dinner that was delivered while I was birthing.
After a few hours my family went home and I was left alone. I called and requested a pump. I was able to get out a few drops. I actually didn't even think of my baby at the time, it's hard to explain but I just couldn't come to terms that i had delivered already. I was hoping to get some sleep that night, as I hadn't slept since I've been there even with the aid of sleeping pills. I did manage to get in a few hours and then morning arrived. It had been over 12 hours that I delivered and I didn't even ask about my baby and how she was doing. The nurse gave me a brief update a few hours after she was born and that was it. I called the NICU and asked if I could come and see her. They said I would have to wait a few hours as the doctor were doing rounds. So there I sat, thinking about what to expect in there. What will she look like? I had no idea. Then I finally got to go down and was told the whole procedure of scrubbing in and NICU procedures. I remember just being in a daze at the time. Then they brought me to her. She was laying there in a plastic box with all sorts of machines around her. I got a closer look and was just in shock. She had all sorts of wires, tubes just everywhere. She was so tiny, only 1 lb 11 ozs, she was just skin and bones. I just stood there. The nurses told me how she was doing and honestly I don't even think I heard them, I just stared. They asked if I wanted to touch her hand, I cried and said no. I couldn't do it. I began feeling an overwhelming feeling of sadness and grief and started feeling dizzy. I told them I need to go lie down. I went back to my room and just cried some more. That couldn't be my baby. My baby should be in my arms, my baby should be snuggled with her mommy breastfeeding, my baby should be with me, my baby should not be in a plastic box hooked up like she's some cyborg.
I went back later that afternoon when my husband came. We both went and saw her together. I was a bit better composed. Almost 24 hours after her birth, I touched my baby for the first time. I touched her tiny little hand and she grasped right on to my finger. It was so heartbreaking. I couldn't believe she was so tiny. She didn't even have her eyes opened yet. I was told I was ok to go home whenever I wanted. So we got all our affairs taken care of at the hospital and I remember saying I don't want to leave without naming her. So we discussed for a few hours and decided upon Megan Elizabeth and left for home.
I didn't go back until 5 days later. I just couldn't bare seeing her like that. When I did go to visit, I only stayed for an hour. It's so hard seeing your baby in the incubator. Not being able to hold her in your arms, not being able to feed her, comfort her, everything that a new mom should be doing for their newborn baby. I felt robbed, I felt cheated, I felt lost. Some ways I felt like this wasn't my baby. It couldn't be my baby, it just couldn't be. The next time I saw her another 5 days later, she had just opened her eyes for the first time. It was so amazing, it was like I finally saw her. The next few weeks, I only saw her one to two times a week for only about an hour each time. I was still in some sort of denial that she was actually my baby. I feel almost ashamed to admit that I felt no love for her. This baby just seemed like some strange baby I saw every now and then.
Three weeks after the birth of my baby, I was told I could finally hold her. Of course in retrospect, it didn't seem like I was really holding her. They wrapped her up in several blankets, put her on top of a pillow and I got to hold the pillow with my baby on top of it. She was still intubated so it was awkard with all the wires and tubes. I got to hold my baby for the first time. All I could think of was this just isn't the way it should be. I shouldn't have to wait three long weeks to hold my baby for the first time. Those three weeks took such an emotional toll out of me. Three weeks of being in denial that I had a new baby. Three weeks of sleepless nights wondering if I'd ever bring that baby would ever come home with us. Three weeks of wondering if I would ever feel any love for her. When I held her for that first time, some of the questions were being answered for me. Yes this was my baby, I knew one day she would be home with us and for once I started to have some feeling for her. This baby just wasn't a baby, this baby was my daughter, Megan.

[5xmom]

Here's my story: I knew I was high risk for having another preemie, as I have had 31,32, and 34 weekers and my 2 year old was born at 29w6d after 9 days post PROM. For this pregnancy, I saw a perinatologist and started on P17 shots at 16 weeks. I also went in for weekly u/s measurements of my cervix. At 20 weeks my cervix showed shortening (2.8) and I was told to rest. At my next check I was funnelling so I was admitted to the hospital and had a rescue cerclage put in at 22 weeks. I was so terrified of losing the baby at that point. I went home on total bed rest and I did well for the first few weeks, but then I had more child care responsibilities and just couldn't maintain enough bed rest. At 27 weeks I went to the hospital with a little spotting and they said my cervix felt long and the cerclage was holding. I told my husband and kids (the younger ones were with us) everything was fine, got up to go to the bathroom and my water broke. I will never forget the look on my 4 year old's face when I told her I wasn't coming home. I was admitted and made it 13 days when I saw some greenish tinge in my fluid. I told the nurse and she paged the doctor. They said it was just a little bit, gave me a non-stress test and were unconcerned. That night I woke up with contractions - definitely labor. They had a terrible time getting the cerclage out and I had to go to the OR. After that I progressed quickly but the baby was in a lot of distress. There was a lot more meconium and she had a lot of decels. They did a Biophysical profile on u/s and she scored a 2 (out of 8). It was so frightening. Just when we were thinking c/s I had to push and she was born. She looked better than expected but was definitely sick with an infection. She was intubated and sent up to the NICU and has had an up/down course since then. I started running a fever and ended up having a uterine infection - I stayed in the hospital 5 days on 3 antibiotics by IV. I am still not 100%. Josephine will be 5 weeks tomorrow and she is almost 4 pounds. She needs some o2 now and then and she is still being gavage fed breastmilk (I pump every 2 hours). I hope she will be able to come home in another month (she was due 2/11). I had my tubes tied after delivery because I just cannot go through this again. Thanks for listening.

[JesseMomme]

Subbing.

[5xmom]

forum idea?

Is there a possibility of starting a sub-forum under Parenting? Then we could have different threads, etc.

[CarenSwan]

5xmom, I'm so glad to hear that your babe is doing well. That's awsome that you're able to pump for her! That is SOOO much work! I pumped exclusively for 3.5 weeks, and then for another month I pumped a few times a day. Now I'm in my 8th month of nursing my dd and it's wonderful!

To the mom with the twins (from the last page) I second the Sears book recomendation, and taking a tour of the NICU. We set up camp there, literally spending 12+ hours a day (dd is our first). Our #1 ally was our lactation consultant. Good luck, and let us know how you're doing.

[tikva18]

subbing.

I can't begin to ssay how moved I am by the stories recorded here. My babies were born at 35w5d and were preemies (but not compared to many of the other babies on this thread). I felt a number of the same feelings which the other mothers here shared. With great thanks to G-d, my babies were able to come home after only 4 days. Four days was an eternity and beyond; I have no idea how any of you managed without your babies home with you for weeks on end.

May G-d give us strength for our children and may they be strong and healthy.

[justmama]

Wow Gabrielle, what a story! I'm happy to hear baby Josephine is doing well and I hope she comes home soon. That's such a long time to be in the NICU and so sick. I cannot imagine how you deal with that everyday. My Sara was only in for 11 days and it was horrific for me. You are a saint!


Meg

[sweetpeasmom]

hugs Gabrielle!
Sounds like a horrid ordeal. Hope you are feeling well soon. I know the feeling how you said I don't want to go through this again, i so would love to have another baby by my chance of another preemie is too great and I can't go through this ordeal again. Mine needed 02 a bit almost up till the time she went home. Good for you for pumping! I pumped for 9 mths before we were successful at breastfeeding. It was well worth the effort. Hope she gets to come home soon

[jkpmomtoboys]

Hi everyone,

Just found this thread and wanted to introduce myself as the mom of an older preemie, so I will subscribe and may be able to offer advice or reassurance to those of you travelling this road now.

My placenta abrupted at 29 2/7 weeks (see--you never forget) while on hospital bedrest for complete previa.

My son was on the respirator for 5 days, after receiving artifical surfactant because his lungs were so terribly bad, even for a 29 weeker.

After that he was on CPap for several weeks, finally discharged 50 days after being born.

He was exclusively given breastmilk, though fortified initially to encourage weight gain. He started breastfeeding at 31 weeks.

He also had severe reflux, resulting in being put on a combination of renetidine (sp?) and reglan (sp?) for awhile.

When he finally came home, we spent the next calendar year only leaving the house to go to the dr. and the grandparents. Otherwise, we kept him at home and away from all children (he was our first) and he stayed pretty healthy, finally contracting RSV when he was 3 and more able to fight it.

The only lasting impact from being premature is some virus-induced asthma, which his ped. is confident he will outgrow.

Anyway, that's the synopsis of him in a nutshell. These days he's a bright, active 5 1/2 year old that you could never tell was a preemie (not that I'm not proud of that fact; it just doesn't come up anymore).

Hope to be talking with you guys in a sub-forum thread soon!

[nepenthesea]

I am subcribing to this thread, having just given birth three weeks ago to 31-week twins. I just found out two weeks before that I was even having twins, and then they decided to make a surprise appearance on New Year's Day, while I was four hours away from home, visiting relatives. they have been in NICU for three weeks, but they are doing very well. They each weigh almost five lbs. (each weighed a little over four lbs. at birth), and are slowly being weaned off of oxygen. I started pumping right away, but my colostrum didn't kick in until about a week later. They started breastfeeding last week, and are doing well with that, though they receive expressed breast milk and formula (until my supply kicks in better), fortified to 22 calorie (if that makes sense) in their NG tubes.

One twin, Furie, was a little more sick than the other. She was on a respirator for several days, and after extubating herself, was placed on cpap for two days, then put on a nasal cannula. The other twin, Fenix, was on a respirator for only a few days, on cpap for one day, and then got the nasal cannula. They are not taking to being weaned off the oxygen all that well (they keep desatting), so they are being given Reglan now to help with that. They had lung x-rays taken that showed a small amount of fluid on the lungs, and are geing given a diuretic for that, in the hope that it will help with their breathing. They were also medicated for heart murmurs, but that cleared up quickly, and they only have a very small murmur now.

That's about it for their health problems. They are amazingly healthy. If we can get them weaned off the oxygen, and get them on full feedings, we can take them home. My due date was March 6th, and I'm sure they will be out before then.

I will post my birth story, because it's a pretty crazy story, and I enjoy sharing it. I can't wait to read the other posts here. I read a few that are sad, and make me feel bad about writing about how great my little girls are doing . I wish for all of you NICU/Preemie mamas the best, and hope that your sweet babies will be in your arms very soon!

-Jolene

[nepenthesea]

My birth story

Here it is, copied from the March 2006 DDC forum:

Well, I started off the new year with a bang (or two!). Dh and I went to Amarillo, where my family lives, to see them for probably the last time before the babies came. I had just found out I was having twins two weeks before, and I was getting more uncomfortable, and didn't want to make the four-hour drive again. We spent New Year's Eve hanging out with family, just watching movies.

Minutes after midnight, I was about to go to the bathroom when I felt a trickle. I KNEW I had not just wet myself. I went to the bathroom and smelled the fluid. It was not urine, as far as I could tell. I yelled at my husband to come in, and told him what was happening. I called one of my midwives, who told me she thought it was possible that I had a small tear in the amniotic sack. Since there wasn't much fluid, and no other symptoms, she thought it might repair itself, and told me to lie down and try to relax. I laid down and rested a little, but kept having to get up and go to the bathroom. Almost everytime I went, fluid would come out of my vagina - not much, but it was starting to scare me. It was tinged a bit pink. We called the mw back, and she had us call the other mw to let her know what was happening. She also told me to try to sleep, unless I started having cramps/contractions, or any other symptoms. She told me to not leave town for a few more days, and to stay in bed.

My husband and his sister put me to bed and covered me up. They brought me towels to lie on, and a robe for when I needed to get up. My SIL lit candles, had some aromatherapy going, and made it very nice and cozy in there. They both did Reiki on me for awhile. I kept having to go to the bathroom, and was peeing and pooping, which were supposed to be good signs. Sometimes I wouldn't leak anymore, and I started to think that I might be okay. Then I would start dozing off, and right when I was starting to dream, I would get a pain in my back. I ignored it at first, but it kept happening, and then the pains were coming from my lower abdomen, too. Finally, after a couple of hours (I think; I lost track of a few hours while this was happening), I told my husband that I needed to get to the hospital. He called the mw, and she said to take me right away. She was thinking we might be able to get a magnesium shot to stop the contractions. At this point, I wasn't even sure if that's what I was having, because I never had any Braxton-Hicks or anything like that. It didn't hurt much, so I wasn't sure what was happening.

The sun was coming up at 6:30 A.M. as dh and SIL drove me the 20 minutes to the hospital. I was really scared, because I'm not a fan of hospitals, and I was afraid I was going to end up giving birth there at only 31 weeks. When I got out of the car, I felt ALOT of water gush out, and I knew what was going to happen.

They put me in a room, in a gown, and started testing me and putting the monitors on me. It turned out that I was indeed having contractions (Duh!), and they were getting closer and stronger. My husband wanted us to try something to stop them , but I told him I just knew the babies were coming. We were offered a mag shot, but after discussing it together and with our mws, we decided against it. I laid in the hospital bed, and between contractions I thought about these little babies that were coming too soon, and how my dreams of a gentle waterbirth were pretty much up in smoke. This was my worst fear - that I would end up in the hospital, and that I would have a c-section. I also worried about my babies, and wondered if they would be alright.

The labor wasn't bad for a little while, but it got more and more intense. The pain was getting to where it was just unbearable. I had told the nurses I didn't want an epidural, but I was seriously starting to re-think my decision . I didn't want dh near me, which ended up hurting his feelings (I don't think the Bradley Method works that great when you have a bunch of monitors on you, and you are lying down, because I wanted EVERYBODY away from me). I was using visualization techniques and deep breathing, which did work alot of the time, but there were times I thought I might die. I know that sounds melodramatic as hell, but I was only seven months pregnant, and I didn't know what was wrong with me or the babies that they would be trying to come out this soon. I was cold and hot, shaking, nauseous, etc. I thought, maybe I'm in transition, in which case, I can handle the pain. I asked two nurses, and they said it wasn't likely because I hadn't been in labor long and I had only been at a 1 when they checked. I started freaking out then. I asked the nurse to get me an anesthesiologist. I felt bad about it, but I hurt so much I couldn't stand it. She said she would, but she never did. She kept telling me how great I was doing, and was very encouraging. Dh came in and I told him I wanted an epi. He told the nurse "No, she doesn't. She's just emotional. Don't get her one." I had made him promise me that he wouldn't let me get one no matter what, earlier in my pregnancy . He kept telling me I didn't need it, that I was just in transition. I was arguing back at him that I HAD to have one, and that I wasn't in transition . I told him the nurses said I still had a long time to go . Finally, I threw up a couple of times. An OB came in and checked me and said, "Youre' a 9; it's time to start pushing!" I immediately cheered up and said, "That's the best news I've heard all day!"

They took me to an operating room, in case I had to have an emergency c-section, of course. It was freezing in there, and I could not stop shaking. It was very surreal. I think I pushed for about twenty minutes and a little past 2:00 P.M., the first baby came out. She was a girl. The neonatal team whisked her away, and I didn't get to see her. Dh went with them to NICU. I guess I should've been more upset, but I had another baby to worry about. The room was full of doctors, nurses, and another neonatal team waiting for the second baby. We waited and waited...the doctors and nurses chatted with me. The neonatal team left. Finally it was just me and a nurse. They managed to get me warm by putting a "bear hug" on me - a sheet that was blown up with hot air. At least I wasn't shaking any more. The doctors and nurses kept coming back to check on me. They were amazed. The second baby just decided that her roomy new surroundings were to her liking, and she wasn't going anywhere! Two doctors said they had never seen a twin take so long to come out. They knew I really didn't want a c-section, and since I managed to push the first one out, they didn't push things. After about 5 hours, a couple of doctors talked to me about the possibility of having a c-section. They wanted to give me more time, though, so we decided (Drs., dh, and I) that if the baby didn't come out within another couple of hours that we might have to resort to a c-section. To make a long story a little bit shorter, I had the c-section. By that point, I was okay with it. We had another girl! We didn't know what one of the babies was going to be, so it was a total surprise.

I didn't get to see my girls until 4:00 A.M. because of the surgery. My mom and I stayed up until then so I could be wheeled to NICU to meet them. I could hardly get out of the bed! I knew a surgery would do that to me, though.

I felt very empowered by these births, considering that my worst fears had come true (hospitalization and c-section). I felt like everything happened the way it was supposed to, and I still feel that way. Turns out the NICU my girls are in is the best in the region. They are getting excellent care, and are doing very well considering they are two months premature. They were each just over 4 lbs. In fact, there has been alot of debate over how old they actually are, because some of the staff feels they are too big to be 31 weeks, and some staff feels that they are too under developed to be older. The girls are known for being rowdy and rambunctious already! The nurses seem to like them, though. Some of the nurses specifically request to work with them.

After about four days, and much debate and brainstorming, we named them Furie Sioux (baby #1, 'Sprout'), and Fenix Eden (Baby #2, 'Sprig'). We thought they should have good, strong names for their big, strong personalities to grow into.

I am disappointed in some ways that I didn't get the birth experience I wanted (although it came close to it in the beginning, thanks to SIL), but like I mentioned, I think it all happened for a reason. My family all lives here, and if we had the babies closer to home, they wouldn't get to see them much. They have been very supportive, and see the girls almost everyday. They give me rides to the hospital when I need (dh has had to go home to check on things), and make sure I have food and anything else I need. One sister used to work at this very NICU. It made her a PITA while I was still pregnant, because she worried about them being premature , but now it's cool, because she knows what's going on in there, and explains things to me when I don't understand. She also appreciates the little things more, like when Fenix was moved from a respirator to a cpap, and to a cannula in two days. Nobody else knows what that means!

Also, I figured that since I had had midwives, I would be treated like an irresponsible nutcase, but it really wasn't like that. There were a couple of snarky comments, but mostly I have been treated very well by everybody. A few of the staff have even told me that they had considered homebirths.

This hospital really supports breastfeeding, and gave me a pumping kit that works with an electric pump, or as a manual pump. They also gave me a really cool insulated bag for transporting my milk to NICU (too bad it is from Similac ). I never was even offered any formula samples. My babies got my colostrum today for the first time. I was SO happy...I have been gloating about it and showing off my bags of milk evey chance I get (No, not THOSE bags of milk! ).

Anyway, my babies seem to be improving daily, and everybody talks about how well they are doing. I am recovering really quickly, too. I have no episotomy to heal from, no tears, hemmorhoids, constipation, hardly any bleeding, etc. My incision is healing nicely, and doesn't bother me much. I am up and moving almost completely normally, and have had a minimum of pain killers. I'm not really all that depressed, considering I have to live here for a couple of months, not seeing my pets and being away from home. At first, I cried everytime I thought of my fur babies (Still do sometimes ), but I'm feeling better. I spend all of my time at NICU, which should be depressing, but things are going so well that it's really not. I miss my babies at night when I go home to my SIL's house, though. I miss being pregnant, and having those girls in my belly, oddly enough. I envy all of you for still being pregnant, since I didn't get to have the complete experience. But it's kind of cool to have my babies here, KWIM?

[Lousli]

I'm bumping this thread for the newest NICU mamas to come and get support.

[tikva18]

My babies have been so sick...they've had ear infections plus a cold. They've had fevers since Monday and one isn't nursing at all. He just spends the day wimpering. Do you think that preemies get hit harder than other babies? Plus I'm worrying way more with these babies than i ever did w/my other kids.

[Lousli]

Rivka,
I'm not sure. I have hd really good luck in terms of health with both my kids. My little one gets sick a little more frequently than my older one did, but i think that is because Mel is bringing germs home from preschool. Melanie has only ever had one ear infection, Hazel never has. I think that there are so many factors in getting sick, but I know preemies are at higher risk for lung-related infections, or that if they get them it can be more serious. I think that is more an issue for babies that had less developed lungs at birth. to you and your sick babies though!

[jkpmomtoboys]

Preemies definitely get sicker than other kids. That's why many preemies get the RSV shots monthly during cold and flu. For my 29weeker, he was going to be prone to so many illnesses that would have been really bad for him, that we were advised (and did) to keep him away from other people and public places for the first calendar year.

And doubtless you will always worry more about your preemies than your other kids. I know I do and my "preemie" is almost 6!

Good luck--cold and flu season is almost over!

[etoilech]

I think it really depends on your preemie. My son was as healthy as a horse after he came home from the hospital. He was a 29 weeker. He did not have any breathing issues at birth or after though. They do not recommend RSV vaccinces here in Switzerland for preemies unless they had breathing issues.

Fortunately cold/flu season will be over in less than a month. Well, hopefully.

I do not agree with keeping (preemies) kids away from people for the first year. We kept Erik away from people we KNEW had colds and were sick, but I think you do them a disservice by not exposing them to normal environments. That's how their immune system grows.

We are very fortunate to have a have a wonderful paediatrican who is also a neonatalogist. He never recommended us keeping Erik away from people, then again maybe he'd have thought differently if we'd had a very sick child or a baby that had breathing issues...

I hope your little ones are better soon!

[eclipse]

My guy (36 weeker) had RSV last month. He was the first of any of my kids to get more than the sniffles in their first 2 years or so. He's the only one that has ever been to a sick visit at the doctor, and he didn't even have any breathing problems at birth. (My oldest son who was full term but was in the NICU for breathing issues is probably the healthiest of all three)

[sweetpeasmom]

Rivka- sorry your babies have been so sick.
think it just depends on the baby. My 25 wker has been extremely healthy, only had one minor cold, just some sniffles thats it. I didn't even bother with the rsv shots either. I did keep her home somewhat when i brought her home for a few months but did take her out to family, once flu season was over i just brought her everwhere, think it helps her immune system.