Parents of premature babies check in here.

[LisaFB]

Can I join too? My DD, Jackie will be 4 in Nov and was due Feb. She was 28 weeks and wasn't breathing when she was born. I was almost lost as well. At my level II U/S they saw a problem with her kidneys and I was sent to a perinatologist. At 26 weeks, it was suggested that I have an amnio to rule out Down's. DH & I weren't thinking that we wouldn't do anything no matter the outcome and we agreed. I got an infection from it. I was in L&D a week after the amnio in labor and was given Brethine and steroid shots (OUCH!). A week after that I was in full active labor (contrx were less than 1 min apart and my water broke on the way to the OR for my c/s). I was transferred to another hospital with a Level II NICU just in time.

Jackie was born Nov 28 at 10:50 PM and was HUGE for a 28 weeker at 3lbs 5.4 ozs!! THANKFULLY they got her intubated and breathing. She was intubated "only" for 6 days and in the NICU "only" for 45 days. She was given an 80% chance of survival and only 50% of no complications. I was told "if she ever catches up, it'll take AT LEAST 3 years" but to "expect complications throughout her life."

She was dismissed from preemie follow up at 9 months actual (6 months corrected) and by her 1 year WBV she was officially labeled as ahead by her ped! She walked 10 days before her 1st bday (9 months corrected) and started talking and hasn't stopped since!!

Now Jackie finished her first 1/2 year of school. She went Tues & Thurs mornings only from Jan till June and was actually AHEAD! She was put in a class with older kids since she misses the cutoff, but everyone saw she needed to be with them. She's continuing to move up with them in Sept and will be in the 4s room even though she'll still be 3. She'll be taking the test to start kindergarten early (it's a private school that goes form age 2 up through 8th grade so it's a real full blown kindergarten) and should be starting a year early in Sept '08! She's truly my miracle baby!!!!

Oh, BTW, having a preemie didn't scare me form getting PG again as I'm currently 11 weeks PG with baby #3 (she was baby #1!)!

 

[Girly_Qs]

Y'all (and your incredible babies!) are AMAZING!!!

I just popped on to read, thinking I might find something in common (and did!): HELLP Syndrome. Thankfully mine didn't strike til 34 weeks and didn't worsen til 35+ weeks, so dd#2 was plenty big and healthly (TG!).

Funny thing for us: it IS affecting our family planning. Severe Pre-E meant dd#1 was 37 weeks (full term, no worries for her - I took a while to get out of the woods, but all was fine eventually). Then HELLP leading to delivery at 35 weeks (again, dd was fine, I again was not!) . . . I just can't bring myself to put us all through that again (I'm just not strong enough).

Bless y'all for all you've been through (and for some, continue to go through)!

 

[MSSANDRA]

I remember the topic of a second baby being a huge topic of discussion in the NICU. Often a 2nd baby can be more premature. We were not really planning on a 2nd child but were trilled with an oops but we lost her in the 2nd trimester.

The lasting effects of a premature baby are much broader than others often realize.

 

[LisaFB]

Mssandra, I'm so sorry for you loss. {{HUGS}}

I was lucky in a way, I guess. Even my doc said DD being born so premature was a "fluke" related to the amnio. So even though I'll always be labeled high risk, my chances of going early again are much smaller than other preemie moms. I completely understand those of you who don't want to risk it again. I was scared while PG with DS (and even ended up having a high fever and was in L&D for 2 days the same day of the PG that DD was born) but I now know I can go full term so this time I feel less scared.

Actually, since DS ended up having over 37 food allergies (yes, my full term, BFed baby got stricken with tons of allergies, while my FFed preemie baby didn't!) I'm more scared about this baby having so many allergies than coming early.

 

[maedelken]

MSSANDRA I am so sorry for your loss. My friends and family always ask me why are you getting pregnant again. Why do you want to put yourself thru that. It is hard not to feel some type of responsibility for your childs premature birth. Though most of the time it is a fluke something that you could not of prevented. For me I carry a lot of guilt because of the shape of my uterus I am prone for early labor. I feel guilty that my body is flawed and could not carry my babies to term. I feel like I failed my children. I do try my hardest to stay pregnant which is what makes my pregnacies sooooo hard. When we found out we were pregnant with our fourth, which was a surprise, (I know I have three already I should know how this happens) I was excited but really scared. With my last baby I made it to 39 weeks but you never know what will happen. With my DS my blood pressure got high and I got complex migranes so that just adds to my worries. I am 14 weeks now and around 8 weeks I started with complex migranes again. I had numbness vision issues nausea and then after I was done I was just out of it for days. It was awful I was whining I told my husband I don't think I can do this but of course I am. What made it worse was my doctors did not really help. Finally at 13 weeks the most recent doctor gave me a prescription for fioricet. I have not had one for a week and hopefully they will stop because I am in the second trimester. But before I was having them every other day so by the time I recovered I was getting another. I just pray that that will be the worst of my problems and I can get away with no preterm labor. Every little miracle is so worth the period of hardship I went thru to get these little guys. I feel so lucky everyday that my kids all ended up being healthy. Reading everyones stories brings everything back things I haven't thought of in years. I went through all my NICU pictures last night of DD conected to all of the tubes and wires. My daughter asked me Mommy how did you hold me with all those wires and did that hurt me. DH had to answer her questions because I was crying remembering our past and from all of your stories. I want to thank all of you for sharing I know that it is hard remembering.

 

[TinkerValkyrie]

Parents of full term babies can not understand that there is a greiving process involved in a premature birth.

Actually, some parents of full term babies do understand the grieving process. My son may have been full term when he was taken by c section at 38.5 weeks, but he spent more time in the NICU then some preemies. He also went through more then some preemies do. It pains me that people assume that parents of full term babies always have it easier.

My son was transverse breech so the OB scheduled a c section. We assumed all would be well and we even brought a special little Valentines Day outfit for him. During the delivery they had some difficulty getting him out, but other than that things went smoothly. I got to hold him for about 2 minutes when the nurse noticed that RJ was having a tough time breathing. She monitored him for a bit and then decided he needed to be checked out in the NICU "just in case". He was put in the little plastic box and wheeled away. They took me to my room and settled me in. They came in later and told me that he had been put on an oxygen hood, and that if his respiration got better he'd be brought back up to me. They gave me that little polaroid. Later that night they wheeled me down to see him. He had all these wires and tubes, he was full term, it wasn't supposed to be like that.

I had problems of my own. The spinal they gave me for the c section had caused my spinal fluid to leak and I had a spinal headache. If you've never had one, imagine having the worst migraine of your life and then drop a heavy weight on your head. it kind of feels like that. I had to have a blood patch done. They made me bend over a pillow(hello fresh c section incision), while they had an IV in one hand and were taking blood from the other. The blood was then injected into my spinal column. During all of that my BP was skyrocketing due to the absolute pain. I needed to get it done though, as I wanted to be able to see my baby.

The other NICU babies got the cute hats and knitted things. RJ was too big. People don't assume that fullterm babies can spend as much time in the NICU as some preemies so they don't make the things in regular baby sizes. They eventually did go over to the pediatric section and get a blanket from Project Linus for him since the other babies were getting all these beautiful things. I still have the blanket. It was so warm and soft in a place that was all antiseptic and full of beeps and alarms.

He continued to get worse. He went from the hood to a canula to a vent. He then developed jaundice. They then diagnosed him with Respiratory Distress Syndrome. The nurses said he was behaving like a preemie. They weren't sure if he was going to survive, and if he did, they thought he' might have permanent breathing problems. He couldn't maintain his oxygen sats, so they did all kinds of testing. They found a possible problem with his heart. His lungs looked like they were filled with snowflakes. In actuality they were filled with fluid. I would call several times a day and there was never any good news.

They eventually decided to give him surfactant. This was his turning point. In a few days he was eventually weaned from the vent and put on the canula. He was later able to come off the vent and then 2 weeks after his birth he was finally able to come home.

RJ is now doing better than we could have expected. His breathing is fine and the problem with his heart seems to have fixed it's self. He appears to have no ill affects from all he went through.

I know the pain parents to preemies have. I never had him with me in my hospital room. One morning the photographer came in and asked where my son was, because she was there to photograph him. I just burst into tears. The nurses would come in and not be aware of where he was and I'd start crying as I had to tell them. I had to leave without him. It brings tears to my eyes even now to remember that, a year and a half later. Leaving with empty arms is the hardest thing. My husband and I had to trade off in the NICU. We couldn't be in there together because it was cold and flu season and we had a 3 year old and didn't have a sitter. Our families lived too far away to help out. My older son spent hours in the hallway outside the NICU because there was no place for him to play.

It took over a year for me even to come to grips with how his birth went. I was depressed and no one really understood why. They just kept telling me that he's healthy now, and I should just move on. They didn't have to sit in their hospital bed hearing other people's babies cry. They didn't have to go home with empty arms and explain to their son why his baby brother wasn't there. They didn't have to see their baby covered in wires and tubes. RJ may have not been a preemie, but I went through a lot of the same stuff.

Here I am a year and a half later expecting my next child. I'm terrified that the one on the way will have to go through the same thing. I worry about it frequently. I'm sure other moms who've had their babies in the NICU understand.

 

[LisaFB]

I remember going out to dinner with a now former friend and her DH while Jackie was still on the vent (I must have been home only a day or two and I think DH suggested we get out to try to get our minds off of things). She was telling me about her c/s and how she didn't even want to hold her DD because of the pain. When I told her that I was hoping to be able to at least change Jackie's diaper in the next day or two, her reply was that I should be grateful since I'd have tons of diapers to change and holding off on doing so would be heaven. Um, hello, my daughter almost didn't make it, was on a vent in the NICU, forget about us holding her we had to ask permission just to touch her toe! Who the heck was she to tell me I was lucky I couldn't change diapers yet?

Do ya think I'm still upset by this almost 4 years later?! LOL

 

[TinkerValkyrie]

I remember going out to dinner with a now former friend and her DH while Jackie was still on the vent (I must have been home only a day or two and I think DH suggested we get out to try to get our minds off of things). She was telling me about her c/s and how she didn't even want to hold her DD because of the pain. When I told her that I was hoping to be able to at least change Jackie's diaper in the next day or two, her reply was that I should be grateful since I'd have tons of diapers to change and holding off on doing so would be heaven. Um, hello, my daughter almost didn't make it, was on a vent in the NICU, forget about us holding her we had to ask permission just to touch her toe! Who the heck was she to tell me I was lucky I couldn't change diapers yet?

Do ya think I'm still upset by this almost 4 years later?! LOL

She didn't want to hold her DD do to c/s pain? I can't even comprehend that. I drug myself out of bed and into a wheelchair the night after my c/s to be able to be near my child. I wasn't even allowed to touch him that night. When I was finally allowed to hold him and change his diapers I didn't care about the pain.

 

[MSSANDRA]

TinkerValkyrie,

I am sorry, That was not the best choice of words. There were plenty of full term babies in the NICU that we became friends with. I know their grief process over not having the perfect birth/ healthy child was as great if not greater than that of a premature child's parents. Guess I search for a word to describe all these warrior infants. Special needs maybe? CErtainly did not mean to in any way belittle any parents experence. HUGS TO ALL PARENTS THAT HAVE FOUGHT THE BATTLE.

 

[tweedlemom]

I'm still amazed at some things that have been said to me by friends and family regarding my son's prematurity. (I posted earlier.) I've been told that his prematurity "wasn't that bad" since he was "ONLY" 5 1/2 weeks early. Since my husband is 6-11, they saw my newborn son's size and insisted "he couldn't be a preemie." My sister in law, who knows full well the trauma my baby and I went through in the NICU has no problems detailing, over and over again, "how easy it is to give birth. I just pushed twice, and out she came!"--re: both of her daughters. Some people that know what we went through still don't get that it's our choice to not have another baby, considering what our last little guy went through, and still ask, "why not? Don't you want another baby?" Ugh!
Yes, I do stand up for myself and my family and I explain all the info and statistics about premature birth, but it still hurts that people, even loved ones, can be so ignorant.

 

[kileybeth]

and all these stories are exactly why moms of preeemies have that special connection. there is just no explaining it.

and this is from me, a mom of 6 children. #1-3 all born around 37 weeks, all had jaundce but blue lights did the trick over a few weeks time at home after 4-5 day hospital stays.

#4 born at 36wks, readmitted for a week with serious bilirubin issues then "stuck" in labs for a month after that every day.

#5 induced and born at 36.4 weeks, spent 8 days in NICU with juandice issues again and an infection they could not pin down. yes, he looked huge (7lbs)next to his other NICU budies!

none could nurse well at first. ended up bottle feeding first two (no support back then) and pumping for 3 months before baby could nurse w/ #s 3 and 4


but it is #6 , who is the preemie and the one who connects me to all of you. It is something that I have never been able to explain. moniters, classes, reviving a blue baby, medicating with caffiene to keep them alive knowing it would also keep them from sleeping properly, thinking in A's an B's instead of pees and poops, calling in to download the apnea incidents, all those trips back to the hospital for sleep studies. . .

coming out the other side with a beautiful toddler who you know is somehow a fighter beyond what we could do for them. (can we say fiesty, sassy, and strong willed all in one breath?)

And once those initial 6 months passed (still on moniters/caffeine but doing so much better) where did we head? Disney World of course!

keep those stories coming!

 

[Mean Queen]

First, I'll say I had DD #1 just 10 days early because she was breech, big, and my blood pressure was out of control. So when I got pg with DD #2 almost 7 years later (after 3 years of trying), we knew my blood pressure would be an issue. I was doing good until I hit 30 weeks, then I had to go in weekly for bp checks. At 34 weeks, on a Sunday night, I was out to dinner with DH, DD, and my dad and his new wife (a very stressful situation.) I started to get really sharp pains in my back and side. I figured I had gas or the baby was poking me, so I kept readjusting myself. When I got home, the pain kept getting worse. I tried to go to the bathroom, I took a bath, I sat, stood, kneeled, anything to make the pain go away. When it didn't, we called the OB. They said to go to the hospital right now. We realized instead of watching Grey's Anatomy like we planned, we were going to live it.

We woke DD up and headed to the hospital. Unfortunately, we chose the one closest to my OB and not closest to the best children's hospital in the area. When we got to the hospital, my BP was 166/122. The nurse said I wasn't going home that night and started me on the mag drip. My husband and DD went home for the night and thanks to that drip, I remembered very little once the pain finally left. I did remember a nurse talking about HELLP and saying that it just couldn't be that then saw her shock when she looked at the results and realized it was. An u/s showed the baby was a good size, almost 5 pounds (she ended up 4lbs 14oz, so the u/s was right on) so the doctor said it was time for her to come. He said all my levels were going down so fast, neither of us would be likely to survive if I didn't have an emergecny c/s. (All this was said in front of my DD who was 6 at the time... the look of fear on her face will always be with me.) Finally, family arrived to take her off while DH and I make a huge decision. The baby was to come... but because of my problems, should we ever have kids again? We decided 2 perfect girls was all we needed. So when the doctor did the c/s, he also did a tubal.

I still remember laying on the operating table joking around with the anesthetician. He said he couldn't believe I was in such a good mood and thanked me for making his job fun that day. I said you had to find the humor in being laid out naked on a table, covered in medical instruments, in a room full of strangers. He then told me it was time and the next thing I knew they were trying to wake me up. I was so out of it, I remember saying I want to go back to sleep. Then I remembered something about a baby. I asked about her. Dh told me she was being rushed to the children's hospital but they were bringing her by real quick for me to see. I got up and got to touch my DD briefly through the bassinet. Again, I saw the total fear in my other DD's eyes as she saw her new sister and me looking pretty bad from the surgery. My preemie was having trouble breathing on her own from the magnesium sulfate, she was jaundice, and they thought she had no rectum. (Turns out it's just very small, close to the ******l opening, yet works very well.)

I was in the hospital for 3 days without my baby. It was one of the hardest and most depressing times of my life. My OB finally said forget the BP, let her out to see her baby. We were very lucky. My baby only spent a total of 10 days in the NICU. The nurses were amazing. Every day they'd tell us what she had to do to move to the next stage, then our baby would meet them. It was like she was listening to the nurses, knowing this was her way out. They called her their little star because of how fast she progressed. I think the NICU nurses are the true stars for everything they do.

My preemie is now 16 months old and has caught up for the most part. But I will never forget how she came into the world. And only other moms who have gone through something like this will understand.

 

[karenTX]

We realized instead of watching Grey's Anatomy like we planned, we were going to live it.

I still remember laying on the operating table joking around with the anesthetician. He said he couldn't believe I was in such a good mood and thanked me for making his job fun that day.

In reading all these stories and crying...you made me laugh out loud!!!

Grey's Anatony was on the night before I was rushed off for my c/s because of HELLPs. While on the table, scared to death, I started joking with my Anesthetician too! (I always make jokes when scared or hurt...I'm wierd like that). After DD was out and rushed to the NICU along with DH, I was still on the table while my kidneys were shutting down. I kept hearing the Drs talking about "not seeing any blue" in panicked voices. Well, the anesthetician tried to distract me by talking about Grey's Anatomy. So, now everytime that show comes on (and I do love that show) I get flashbacks of him, me on the table, and my little 1 pounder that I only saw for a second before they rushed her off! It's just one of the funny little things!!

 

[Mean Queen]

(I always make jokes when scared or hurt...I'm wierd like that).

I'm exactly the same way. I think humor just takes away some of the stress. You either have to laugh or cry. I prefer to laugh. My mom was like that up until the day she died. She had a horrible disease and constantly made jokes that made others a bit uncomfortable, but helped ease her stress about dying. I figure if she could find humor in dying, you can find humor in anything. My preemie is named after her.

 

[DbleTheFun]

I agree with the whole humor thing... I think those anesthesiologists must get a lot of us "jokers" in there.

Even afterward, when we were told that our little Aiden may not survive, and I was in the hospital longer than expected due to a complication from the C-Section... I passed out cold walking through the NICU one afternoon while holiding a styrofoam cup of tea. Needless to say, the tea ended up as a pool of yellow fluid around me. When I awoke to a team of doctors and nurses hovering above me... all I could say was "It's TEA NOT PEE!!!!"... everyone was laughing that it was the first thing I said when I came to.

If you can find the humor in things, it somehow makes it a bit easier to keep on trecking.

 

[brooklynheights]

My DN was born almost 3 months early weighing 3lbs he lost 1lb his left lung collasped it was a touch and go fight for him my niece was there every day she couldn't understand some of the other babies in the nic units parents were never there even the nurses told her some of the kids only see their parents 2or 3 times a week we have a family tradition on the day you are born you have a birthday cake after all it is your only true birthday he couldn't eat his we couldn't hold him but the nic nurses opened his incubator and let us put his cake near him and take pictures his cake was bigger than he was he looks at his pics and wants to know who ate my cake when he came home he was still so tiny 4lbs 5oz that was 2 months later .now he's just fine only issue he has asthma and so does his 1yr old brother so when we head to disney will have all the machines with us both still don't know when we are going 50 days from now disney here we come

 

[mla2177]

Hi! My son was born at 32 weeks weighing 4 lbs 5 ozs due to Ecalmpsia. I was airlifted to a hospital up north (they had a NICU), they told me I was mild preeclampsia but I would be staying on hospital bedrest till I hit 36 weeks. I made it 1 week and had to seizures and then an emergency c-section. I had high blood pressure for almost a year after he was born. He was never on oxygen and was released from the NICU a week later. He was on a heart monitor for a month and a half, but never had a problem with it. They only problem he had was Torticolis where the muscle in his neck was not completely formed and tight so he was always resting his head to the left. He went to physical therapy for a couple of months and was fine ever since.

My son is a very active and healthy 3 yr old today. He is very small still, but I think it's because my DH and I are both very small framed. He is one of the smartest three year old I have ever seen. I'm very proud of that because I worried about him for so long!!!!

My hat goes off to all of the mothers on this thread!!!!!

 

[mericletwins]

Hi! My son was born at 32 weeks weighing 4 lbs 5 ozs due to Ecalmpsia. I was airlifted to a hospital up north (they had a NICU), QUOTE]

Which hospital? I live near Cape May and we don't have NICU's down here. I got rushed up to Jefferson in Philadelphia to many times to count!

 

[mla2177]

Hi! My son was born at 32 weeks weighing 4 lbs 5 ozs due to Ecalmpsia. I was airlifted to a hospital up north (they had a NICU), QUOTE]

Which hospital? I live near Cape May and we don't have NICU's down here. I got rushed up to Jefferson in Philadelphia to many times to count!

Small world, I am originally from Cape May. My brother still lives in Wildwood Crest. I was airlifted to Christiana Hospital in Newark De. It is a great hospital. I think my son did so well because of the steroid shots I received before he was born. Eclampsia can change within hours, so I don't think there was anything they could have done to prevent the seizures. Actually, a couple of hours before I seized my pressures weren't terribly high.

 

[TheDizMom]

I have had gone into premature labor with all 3 of my children. With the first I was 34 weeks when I began going into labor. The doctor stopped it with turbuteline and sent me home on bed rest. When I went in on my due date for my check-up it was to find out that my daughter was dead and I was in labor again. After about 12 hours of labor I delivered her normally. I found out I had a blood condition after that that meant I wouldn't be able to carry any child to term and alive without heavy doses of Prednisone. I also learned that if I ever went into premature labor from that point in the pregnancy on, I would not let them stop it again. Either way she was just not meant to be, for whatever reason God chose, and so we very painfully moved on.
With my DS I went to a perinatologist and began treatment with Heparin 3 times a day to keep the pregnancy. Due to severe bruising (I have another condition that causes me to bruise excessively) they switched me to the Pred. I went into labor with him at 24 weeks. I found out I had gestational diabetes and B-strep too( a condition that I had with my first pregnancy and that crossed the placenta with her even though it's not supposed to). Thank God they were able to stop it and sent me home on bed rest with medication (for the contractions and b-strep) and a monitoring system that enabled me to monitor my contractions 3 times a day and send them over the phone to a nurse. I went to a pump in my leg at about 30 weeks when oral meds no longer worked and ended up in the hospital another time because I had too many contractions. I was able to last this way until he was 36 weeks, and my water broke. Barely premature, but premature none-the-less. He spent 3 days in the NICU because they wanted him on antibiotics to make sure the b-strep hadn't crossed the placenta again. He was fine and came home and he never had any major problems unless you want to count colic.
My pregnacy with my DD wasn't much more fun. I began contracting with her at 22 weeks. Fortunately they weren't enough to do anything and I was just put on resticted activity (no house cleaning--yeah!!!). At about 26 weeks I slipped on the ice and landed on my stomach. It cause lots of stiffness and a minor placental abruption. It put me on a weekend of strict bed rest. From there on out my MIL picked my DS up form preschool on Tuesday afternoon and kept him until Wednesday evening so I could rest as much as possible on those days. A few weeks later we were in a minor fender bender in a snow storm, but no problems there. I got the gestational diabetes again and just when I was about to be put on insulin my water broke again this time at 34 weeks. She was still pretty big for 34 weeks at 6lbs. 4 oz. probably because of the diabetes. We were very lucky as she had no problems initially. The doctors were sure I had my due date wrong, but with my condition trust me I checked the minute I thought I might be pregnant so I could be put on meds ASAP! She probably could have skipped the NICU but they were rightfully playing it safe, and since a friend from my Lamaze class with same due date was 2 beds down from my DD with her DS who was having problems, I didn't argue. She was born March 31st and we were told she would be there until about her due date. Our goal was to have her home for Easter in mid-April, she came home in 5 days. She didn't have any problems right away, but she did develop a reflux problem (not necessarily related to her prematurity), and feeding her was a 1 hour ordeal every 3 hours. She never drank more then a 4oz bottle ever and ate 1 jar of baby food per meal if I was lucky. She had some slower development issues with crawling, walking and talking, but nothing serious. She is now 6 but looks like she's younger because she is so tiny. I think she weighs maybe 40lbs.
We were lucky there were no real problems with them, and I credit their big sister (our very special guardian angel) with making sure they are healthy and happy.