Seeking Moms of Preemies

Updated on April 01, 2008
V.D. asks from Eight Mile, AL
32 answers

I have a 13 week old preemie that is still in the NICU. She is a 25 weeker and weighed 1 lb 7 oz when born. Doctors did not think she would make it through the night, but God had other plans. She has had to endure a lot since. She had surgery a month ago because of NEC (an infection in the intestine) and now wears an ostomy bag. She will have another surgery to repair the intestines when she's big enough. Doctors said she had at LEAST two more months in the NICU. She's being fed again, but is only 2 lbs 3 oz. She had a brain bleed grade 2 right side that has completely absorb, her last cranial scan was normal thank God. She recently got another infection probably because of new IV needle put in. I've been told although her brain scan is now normal she could still have developmental problems (learning disability, motor skills, cerebral palsy, etc.) because of her slow weight gain. I just want to know if there is anyone else out there that has a preemie and maybe have gone through what we're going through now. I know each outcome is different depending on the baby, but just wanted to hear another parents story. Even though there are so many other parents with babies there, life in the NICU can be lonely.

1 mom found this helpful

What can I do next?

  • Add yourAnswer own comment
  • Ask your own question Add Question
  • Join the Mamapedia community Mamapedia
  • as inappropriate
  • this with your friends

So What Happened?

Thanks to everyone for sharing your experiences and the wonderful advice. It was all very appreciated. I placed my baby girl in the hands of God the day she was born and she has been there every since. I know he is taking care of her because she has made it this far. It just gets hard sometimes, especially the days when we have to take steps back. That little angel is a fighter, and she just keeps proving them wrong. I can't wait to bring her home!!! Again thanks to all!!

More Answers

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

S.J.

answers from Tulsa on

V.,
My son was born on September 7th at 29 weeks, he was due on November 21st. I know in the NICU there is a big difference in babies born at 29 weeks vs. 25 weeks, but I know how hard it is to leave your baby at the hospital every night. One thing I have learned is that preemies are fighters, they are much stronger than you can even imagine. I met another mother in the NICU who had her baby girl at 25 weeks and her daughter experienced several set backs before she was able to leave the hospital, and while she did have a long road ahead, her daughter is doing beautifully now.

I know that you are so worried about your little girl, and there are so many "what ifs" to consider; but I have heard so many positive outcomes about many of the babies that were in the NICU with my son.

I don't know how your NICU is set up, but I would suggest trying to meet some of the other parents whose babies are in the same NICU, that support really helped my husband and me. In the NICU where my son stayed, there was a social worker on staff that was able to loan us books to read, and offer other advice. I would also ask a nurse, or social worker if there are any programs in Alabama that offer free developmental services to premature babies. In Oklahoma, we have a state run program like that called Sooner Start. They come to your house and evaluate the baby and if they find that your baby has developmental delays, then they offer free services to help your child, such as occupational therapy, speech therapy, vision therapy and so on.

Before you leave the NICU, the NICU staff should give you info to continue to meet with a pediatric opthamologist to monitor your childs eye development, just make sure you get that info before you take your daughter home (her eyes should be getting checked while she is in the NICU). Since preemies develop at a different rate than full-term babies, I would suggest looking for a pediatrician that is also a neonatologist.

I really hope some of this info helps, and if this is info you already have or are on top of, I am sorry to repeat. You and your family are in my prayers!! If you ever have any other preemie questions, or if you just need a little encouragement, I'd love to help.

Good Luck!
S.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

A.W.

answers from Birmingham on

Hi V.,
I totally understand the roller coaster ride of the NICU. I am the mom of a preemie, a 26 weeker. He weighed 2 lbs. 6 oz. and dropped to 1 lb. 10 oz. before starting a steady weight gain. We spent 100+ days in the NICU and faced many hurdles along the way... 33 days on the vent, 14+ days on the c-pap, Pulmonary hypertension, PDA issues, kidney issues, Grade 2 brain bleed, etc.
My son is now a healthy and happy 2 and a half years old. We do see an Endocrinologist for Diabetes Insipidus (water diabetes) and we are about to have to start on a growth hormone. We feel blessed that these are treatable issues. Developmentally, we had him evaluated to be sure that we were on track. Though he is small in size, he is incredibly smart.

If you are like me, I often asked, "How did we survive life in the NICU?" The #1 thing was PRAYER. We prayed for each milestone big and small (i.e. poop/pee, each increase in feedings, etc). We definitely lived hour-to-hour then day-to-day. It is so touch and go that you learn not to get too high or too low. Keep the faith and know that you are not alone in this journey. It really helped us too to befriend some neighbors in the NICU. We, to this day, are dear friends with these people.

Hang in there and keep the faith.
A.
(mother of a 2 yr old and 35 weeks pregnant with #2)

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

M.S.

answers from Jackson on

You are definitly not alone. I had a 27 weeker and he weighed 1 lb 9 ozs at birth. He stayed in the NICU at the University hospital in Jackson, Ms, for 9 1/2 months. He started out doing really well, and then right after Christmas the year he was born, he started going down hill. He got pnemonua (sp) and started having lung problems. They diagnosed him with chronic lung disease. He had to be on constant oxygen. He started out on the ventalator, then went to nasal canula, then had to step back to C-Pap, then the oxy-hood.. back and forth we went. We went through this for a long, long time.

My son had to have a feeding tube. He had it even after he came home. He couldn't gain the weight so this what how they were trying to make him gane it. Once my child started gainging it he did fine. When he was able to start eating table food, his pediatrician said NOT to make him clean his plate. That would be the worst thing you could do for him. So that is what I do. And let me tell you, my child will eat. He will eat just about anything. He loves cabbage, turnip greens, coleslaw, tomatoes... stuff a normal child wouldn't touch right now.

He also had a brain bleed. His was a grade 2 as well, and it absorbed. The doctors and nurses will tell you the bad things that can happen and not the good ones, because they want to prepare you for the "what could happen". They don't want you to get yourself so excited that if something did happen you would be disappointed.

Go to the hospital everyday, every chance you get. Talk to your daugther, touch your daughter, if you can, hold your daughter. Don't be afraid to do this. Tell you something else you could do, if your NICU will let you do it, take a tape player and play music to her.

Also, your in the NICU with other parents, some may not be there for the same reason you are, but they are there. Talk to them. Try to make friends with one or two. I did, and it helped me out so much. I was able to laugh and cry, and when I wasn't able to be there, one of them was looking out for my son as well as there own.

While I was in the hospital, before I had him, they told me that white males were on the BOTTOM of the survival list.
My son, in Nov of this year, will turn 5 years old. He only weights 26 1/2 lbs. He may be little, but he is not having ANY problems at all. He is a smart little boy. He picks up quickly. So, not always is it true that they are gonna have problems. When your chid is old enough, if you would look into the First Steps program in your area, they can help you. That is what I did. I had a therapist for him for his motor skills, speech, and learning how to walk. It was a slow process, and it took him a little more time then normal kids his age, but, he picked up and is doing great.

Your child IS in the best of hands right now, God's hands. I will keep you in my prayers, and if you EVER need to talk, PLEASE feel free to email me. I don't mind talking, none, what-so-ever. Your not alone. I promise. You just have joined one of the most special "clubs" anyone can be in.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

B.A.

answers from Oklahoma City on

I personaly have not gone through this. But mentally I have. My husband brother they had a baby at 28 weeks and had a hard time with everything code blue several time very scary went. She also was told she may challenge things through her life. I can say this little girl is a blessing to have. She is very smart and able to play sports and it seems like it hasn't slow her down at all. She does have some issues like her immune system don't fight off colds as well but they do fight it just not as fast as ours. But I do know through Christ you can make it through this even if she is a little slow or not. God will provide you what you need if you ask may not be on our terms when we want it but on His time. Also, I do promise he is with you just ask Him too. Also I will be praying for you. God Bless

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

D.W.

answers from Shreveport on

I've had two preemies. Both were born at 33 weeks but were much smaller than they should've been. My son weighed only 2lbs 6oz. He was early because I had a cyst on my ovary that began to feed off my placenta. He quit getting the nutrients he needed to grow. The cyst was over a pound larger than he was and was fixing to rupture. Had it ruptured neither of us would've survived, due to it's size and position. God is good, and we are and were both fine. He only needed to grow. Even his lungs were formed!

My daughter had more problems. She was small from the moment of conception. It tooks months before she even showed up on an ultrasound. At 33 weeks they sent me for a level 2 ultrasound. At that time they discovered that I had reversed blood flow of the placenta, preeclampsia, low fluid, and of course she was still way to small. They delivered her that day. She weighed 1lb 9oz. She is such a miracle. They were preparing me for how bad she was going to look. All the machines she'd be hooked up to, the ventilator. She wasn't. Of course she had the feeding tube, and she was under an oxygen tent for a little while. She also had a brain bleed. It was a grade 1, and cleared on it's on. Thank God again, because it was three weeks before they realized they had missed checking for that when she was born!

Both babies had Jaundice, and an episode where they forgot to breath. But that's normal. You've probably already gone through that. It's a long road, and really hard. Lots of ups and downs. For me the hardest part is when they got close to being able to come home. I was so ready, and it would seem to me like they were ready. It's easier to leave when you know they need to be there. When it started feeling like I could do what the nurses were doing it was more difficult to leave, but made it so wonderful when I finally got to bring them home. It sounds like she is going to do fine. I will keep y'all in our prayers.

My son is now four, and he has had to do a lot of therapy. He's been in physical therapy, occupational therapy and speech therapy. But he is VERY smart.

My daughter is now two, and has never needed any therapy. She has been on schedule. Really until the time comes, they can't tell if your child will be behind. My daughter was smaller and had more issues than my son, and hasn't needed anything. With so much other stuff going on right now, try not to worry about what's going to happen later. It really could all turn out great. Even the therapies he did need weren't a big deal. Other than not understanding his speech, he always seemed like a normal boy, and now he test 1.5years above his age. Many blessing to you and your family!!!

We are now pregnant with number three! Here's to making it past 33 weeks!!

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

L.P.

answers from Oklahoma City on

Hi! Yes, I am also a 'preemie' mother. I have 2 children who were both born about 32 1/2 weeks. Although my kids didn't have to go through all that your little one is dealing with, still it is different having to live in NICU! You mentioned that 'God had other plans'. That's exactly right. That's what I wanted to encourage you with. When I was pregnant with my daughter, I had some problems in my 3rd month. I had previously miscarried my first baby and had prayed and believed that God was taking care of this one. There was a point there that the doctors said that there was nothing they could do to keep me from miscarrying. Then he did have one option that was considered experimental, but made us read all the possible side effects. These were horrible disfigurements and such. My husband and I chose not to read further, but to pray and trust God. We did try the injection option, believing that God would take care of us and he did. We delivered a beautiful baby girl, with the exception that she was a preemie. We were at a hospital we didn't know, with doctors we didn't know and an hour away from our home. It was a difficult time. Some of the doctors and nurses were not encouraging at times. We made a choice to believe that God would do what doctors didn't think would happen. It was lonely in NICU. There were times that I just wanted to hold my baby, but they wouldn't let us due to other things going on. We had some ups and downs. The doctors said she would be in NICU at least 5 weeks, but she was able to come home in 10 days. Praise the Lord! When I got pregnant again, I asked my doctor if he thought I'd have another preemie and he said maybe, or maybe not. I prayed that he'd be full term, but he came early as well. I had to have a caeserean since he was breach. I prayed that he would be over 5 lbs, since that seemed to be a number that they would let you take your baby home. The doctors estimated that he would be 3 lbs. My son was born an weighed 5 lbs. 5 oz. I was elated, but still they wanted to keep him in NICU since he was a preemie. Again ups and downs, but only 10 days instead of weeks. So I want to encourage you to pray and believe for the impossible from the doctors' point of view. They also said that since I have preemies, they would always be behind on weight and height. Not true. I know have a 16 yr. old and an 11 yr. old and both are average in size. They have been perfectly healthy. When I mention to anyone that they were preemies, they don't believe me. The time we spent in NICU was not an easy one. I would say that the way it affected me the most was that after we took our babies home, I was probably a little more protective than most moms. Having been deprived of having my baby with me 24/7, I wasn't eager to let them out of my sight. Also my babies didn't sleep real well when we first came home. I'm sure that's because they were used to being moved, poked, fed, etc. every couple of hours. I will pray for you and your baby. Don't be discouraged by what the doctors say. Many times they will give you the worst case scenario. Believe for the better scenario. Just know that you are the special one to be the mom of a preemie. Your baby will stay at that cuddling size just a little longer than other moms.:)

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

C.M.

answers from Little Rock on

Hey!
I just wanted to know that I prayed for your strength, peace and comfort. Also, that God who is the great physician will heal your baby.

My son who was born with Hypo plastic Left Heart Syndrome.They did not expect him to live but he did. We were in the hospital for several months as well.

You are right- every outcome is different but my one comfort was to remember that God loves me and my baby.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

M.M.

answers from Huntsville on

Twenty-six years ago I had a 29-week baby. Two pounds six oz! Tony had lungs that were not ready to work, so although we did not have the NEC complications he stayed on oxygen (some eye damage) until about one day before he came home. There have been some marvelous advances in NICU medicine since that time. My son is now 26 -- and I can still remember those lonely, horrible, heart wrenching days and nights. The doctors told us to get him baptized and give him Last Rites ... the priest who came in told us "I don't know why we're doing this, this child will be fine." And so he was. When we called the parish to let Father Allen know that Tony had turned the proverbial corner, he had died two weeks after baptizing Tony.

There should be a support system in the hospital for you -- ask, darn it. Social workers, other mothers ...

Are there any lasting repurcussions for having a premie? I think so, but, as you said, each child is different. And as I pointed out, medicine has made so many advances in 26 years.

They thought Tony had this, had that -- Cerebral Palsy too. However, that was not the case. Occupational Therapy, Physicial Therapy, Neruologists, Urologists, genetic testing, AGHHHHH!!!! We came under the auspices of the Public School Systems (in California and Virginia) who sent people to my home) and the Easter Seals program (Rhode Island -- where I would take Tony.) Again, ask your hospital support team who to contact -- I work in a hospital and those are questions they should know the answer to!

Perhaps your child is gaining weight slowly because she's using so many calories just to stay alive. Tony had to have extra calories put into his formulas. (Oh, by the way, when your child comes home .... she will expect 24/7 care! Note, I did not say "will need" 24/7 but will "expect"... Getting him weaned off of 8 nurses and two doctors who would run whenever he wimpered was HARD.)

Tony graduated from college and has turned out to be the most perfect son -- independent, loving, great sense of humor. Did he cause me to have grey hair? Yes!

You are blessed you have older children. I only had one because I could never risk the chance of having another premie (toxemia). Tony was quite lonely growing up with no brothers or sisters -- but we all survived!

God bless you and your family,
M.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

C.L.

answers from Oklahoma City on

V..... I have an eight year old beautiful daughter, that was born at 27 weeks.. she was 13 weeks early. She weighed 1 pound 10 ounces at birth.... and dropped as low as 1 pound 6 ounces. I know how very small and precious these little babies are.

My daughter stayed in the NICU for 85 days. She came out a week before her actual due date.

My daughter didn't go through the problems you had.... she just needed time to grow and develop. The most major thing that I had to deal with was a blood transfusion and her being on the CPAP machine for a long time...

Today... she is a very active 8 year old. She did have some learning disabilities, and she is currently repeating 1st grade again.

There is light at the end of the tunnel. My daughter is perfect.. just very petitie. She is still under 40 pounds right now.. Other than her size, you would never know that she was a preemie.

If you need anyone to talk to, you can email me. Life in the NICU is very lonely... and heartbreaking.

Good luck.... and also... because she is a girl... she is a fighter... I have to keep reminding myself when I get frustated with my daughter now because she is so hard headed.. that it was because of that, she is here! Girl preemies fight harder for life than boy preemies!

C.
[email protected]____.com

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

L.L.

answers from Little Rock on

I have a 26 weeker, 1 lb 14 oz. Now 1 yr old and 16 pounds and finally catching up with developmental milestones. Those first months are long, lonely, and scary. You are very overwhelmed. Understandably. I found lots of great advice and support at a discussion board just for preemie moms. It is http://messageboards.ivillage.com/n/mb/listsf.asp?webtag=...

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

R.B.

answers from Lawton on

I had my daughter in October, at 27 weeks gestation. She weighed 2 pounds at birth and quickly dropped to 1 lb 11 oz. She had to spend the first 2 and a half months of her life in the NICU, and I agree, even though there was always someone around, the nurse or a family member, it was the absolute loniest time. We would hold our breath and our hearts would sink each time her heart rate or oxygen would drop. She was on the vent, to cpap, to nasal cannula. She had the bradycardia all the way until she was about 34 weeks gestation. We were very fortunate not to have had to deal with the nec and the bleeding, my heart goes out to you. After the longest 8 1/2 weeks of our lives we were able to take our daughter home at 4 pounds, right before Christmas. She is now 11 pounds and so healthy and happy! She of course is behind on her milestones, but she is coming along and doing wonderful. Every sitation is different, but before you know it your baby will be at home and you will look back and all of this will feel like a distant memory.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

A.G.

answers from Jackson on

My son is now 1 he was born at 33 weeks and weighed 4lbs 14 oz. I know your probably thinking what do i have to complain about, but like you i was scared to death. I knew no one that had a preemie and no one to give me advice. He only spent 2 weeks in the hospital with a hole new set of problems once we got home, acid reflux ect... which i'm sure you will experience once you get you little one home. The only word of encouragement i have to offer is when my sone was in the hospital there was a little girl in there that was born in Jan and not due until May and to my knowledge she is doing fine now. Please keep us up tp date and we are here to help anytime you need us. Good Luck

A. G.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

T.W.

answers from Oklahoma City on

My son was not a preemie but he had a stroke the day after he was born along with a blood disorder that kept killing off all of his platelets. He had two blood transfusions in the first 3 weeks of his life. He spent 2 weeks in NICU and was released to come home. He also failed the hearing test 5 times while in NICU. We were home for 5 days and had to take him back to the hospital where they admitted him to PICU which is not nearly the same as NICU. In the NICU he had a nurse that was within a few feet at all times. PICU he was in a room by himself (my husband and his family and myself took turns staying with him 24/7 for the next 10 days). He has had 3 sets of tubes surgically inserted in his ears by the time he was 18 mos old and two tear duct surgeries because they his tear ducts would not open on thier own and it looked like he was always crying. So far my son has done extremely well considering the first few weeks of his life were extremely difficult. He eventually outgrew the antibody/platlett issue and he does have some developmental delays. He didnt walk until he was 19 mos old and he still hasnt passed a hearing test but we know he can hear just not sure how well. He doesnt speak words yet but a speech therapist is working with him on sign language and our neurologist thinks his speech will catch up by the time he is 3 or 4 years old. The hardest part was not knowing how the stroke was going to affect him and so far every time a doctor has given a prognosis my son has done just the opposite and proven them wrong. He is now 21 months old and while I still worry will he grow up like a normal kid I believe very strongly that God is with him every day and watching over him and fixing what the doctors cannot. Initially we were given the worst case scenario that he may not walk, talk and may have sight problems and so far he is walking and his vision seems to be on track (we have seen a pediatric opthamalogist and all his vision tests were excellent) I completely believe his speech will develop, it is just going to be on His and my sons schedule not what is typical or a normal milestone. I do not know what your faith is, but if you believe and just trust that the Lord will take care of what the doctors cannot it will happen. I have seen it with my father when he had quadruple bypass surgery and now with my son. They have been the most amazing experiences of my life and I believe God will do the same for you and your daughter and family. I will keep you and your family in my prayers. Stay strong and have faith that God will take care of her and your precious baby girl will be fine!

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

N.M.

answers from Oklahoma City on

I am a mom of a preemie. She was born at 35 weeks weighting only 2lbs 13 ozs. We spent 4 weeks in the NICU. She was finally diagnosed with a genetic disorder. She has developmental delays but we don't try to worry to much on what she can't do we just focus on what she is doing. She is 2 years old now and weights only 17lbs. She is fixing to go have a feeding tube put in on the 3rd of April. Just remember to keep your chin up even when you have a rough day and cry if you need to. The nurses and everyone around will understand. There are resources out there to help you with her. Well feel free to email me if you have any questions. Congrats on the new little one and don't give up. Its a long road but it's all worth it!!

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

T.P.

answers from Tuscaloosa on

Hi V.,
I'm a pediatric physical therapist who has worked with a lot of 25 week preemies. I highly suggest you ask at the NICU if there is any support group at the hospital or in the local area, or if they can put you in touch with another mom who has gone through a similar thing. I'm sure you can find an online support group if you search a little. It's a really hard thing you are going through right now.
I have worked with babies at that age who do have some problems (some bad and some not bad) and some who come through just fine! It's amazing sometimes how strong these little ones are. Sometimes they grow into the toughest kids!!!
There's really no telling for sure until you see how they grow. When you leave the hospital (FINALLY!) make sure they hook you up with follow-up visits and/or early intervention (EI) services. EI will usually be therapists who come to your house to show you ways you can help your baby get stronger and grow properly. They will also monitor how your baby is growing and get help immediately if they sense any problems starting.
You and your daughter are in our prayers and I wish you all the best.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

M.W.

answers from Tulsa on

My son was born at 30 weeks via emergency c-section due to me getting pre-eclamsia and Hellp syndrome. We were extremely lucky, he was only on oxygen for a week and had no other "major" problems, so I don't know what your going through in that respect. We spent 10 weeks in the NICU with each day being hard. It really helped alot to get to know some of the families around you. You can see where your baby will be in a few weeks and that helps. Other parents can also give pretty good advice since they were once in your shoes. Soon enough you'll be giving other parents advice too. As you probably have already figured out each day has its ups and downs, I remember Wyatt would have 2 or 3 great days and then have a minor setback and it just broke my heart. Keep communication open with your spouse / support person, that really helps, cry when you feel you need to but also remember that your little girl has already accomplished amazing things since she was born and needs you to not be depressed. I would also recommend journaling everyday with her weight, how much she's eating, what happend that day, how you felt, that way when you have a bad day you can look back and see how far she has come. I agree with the other mom that recommended kangaroo care, it really does make you feel better. There was times in the hospital that i had to fight to Kangaroo and i had nurses tell me it was a bad idea but did it anyways, I know it did us both alot of good. I'll be praying for you and your little one.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.G.

answers from Monroe on

V., My son was orn at 33 weeks gestation. He spent 2 1/2 weeks in NICU and it broke my heart to see him hooked to all of the monitors/equipment. I can only imagine what you are going through with yours. Hang in there. I really thing that having their moms with them as much as possible helps them to fight. They sense you and it somcforts them to know you are there. I spent full days at the hospital with mine when i could, since my husband worked offshore and I had no help with my daughter--I couldnt always do that.) It was a struggled and I cried every day when i left him). I will keep you and your baby in my prayers. It sounds like God has already blessed you with her since she is still here. These times will make you closer later.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

T.W.

answers from Lafayette on

Hello!

My daughter was born at 24 weeks on Sept 29, 2007 and weighed 1lb 7oz as well. She spent a total of four months in the NICU before finally coming home. Life will be filled with ups and downs, and quite lonely as you said, making an effort to reach out to the other parents if you can. Sometimes, talking to someone, even briefly, about the little steps and hurdles, can actually help!

For us, our daughter came after I started dilating and it couldn't be stopped. No reason found as why this happened. They had trouble getting her to breathe, and her left lung ended up collapsing on them while they were getting her intubated. They had to put in a chest tube to allow the air out from around her lungs so it could reinflate - was only in for less than a day before it was taken out.

She was on a ventilator - and if your little one is on one, it can be quite the scary thing to see and deal with, this I know. We did Kangeroo Care with her on the vent - which if your hospital will allow - do it as soon as you can, and as often as they'll allow! It truly will make all the worries and fears disappear for a short time while you get to hold her.

Our daughter didn't have the bleeds - which amazed her neonatal doctor who thought she would because of the complications at birth in trying to get her to breathe right. Her heart and kidneys checked out fine as well. Overall, she didn't have any of the problems that most of the preemies sometimes have.

Her biggest problem came down to her breathing. While on the vent, she was on the lowest possible settings, on room air with no real extra oxygen given. She was constantly pulling the tubes out, and while they would try to take her off and switch her to the CPAP, the longest she was able to handle it was 30hrs. It was believed that she had a weak larynx that depended on the tube being there to keep it from collapsing, so in December, the choice was made to put in a trach for two reasons - to get her off the vent and allow the doctors to get a scope down her throat and into her lungs to do a visual check of things. The surgery went perfect. She was on the vent through the trach for less than a week, then on heated humidified air for about a week, then just humidified, then completely off of it by the new year.

On Christmas Eve, she got her first bottle - she'd been fed through a tube inserted down her throat since she was born. Over the course of the next month, they would continue to try and give her bottles while feeding her also through the tube. However, the trach got in her way of swallowing very well, so it was then decided in mid-Jan to put in a PEG tube to allow her to be fed that way so she could then come home!

Right now, she's been home right at two months and just hit 6months old. She's doing wonderful - weighs in at 8lb 7oz! We're working with the ENT that put in the trach and a pulmonologist to wean her off the trach over the next few months - allowing her to learn how to breathe around it before it's removed. Once the trach is taken out, we'll then work with a therapist on her swallowing, and then gradually work to wean her off the feeding tube so it can be removed as well. Once those are done... well.. the future awaits us!

So, remember this -- you aren't the only parents out there dealing with this. Sometimes, the days will be long and emotional. There will be weeks when it seems that everything 'bad' is happening and no real ground is being made. But every little bitty step forwards, is cause to be celebrated. Also - I don't know about your hospital, but we got /very/ close to the nurses in ours, especially since our daughter was there so long. They were there for us, celebrating every milestone, and hugging us with every seeming backwards step that was taken. Don't be afraid to speak to the nurses and get to know them! Or the other parents!

There will come a day when you'll be looking at the room-in in preparation of taking her home. And believe me - that day seems to come before you know it, even after the days seem to drag by!

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

L.R.

answers from Fayetteville on

I completely understand what you are going through!!! I had a preemie, he was a 26 weeks and 6 days!!! He weighed 2lbs 10oz and got down to 2lbs 4oz!! It is a very scary thing to go through. They said Tyler would have to stay 12 weeks he only ended up staying 6!!! The one thing I leanred is that Kangaroo Care is the best thing for your baby!! If you are not already doing it ask if you can! We did it at least 2-3 times a day for as long as he could stand being out of the isolette!!! His doctor said that was one of the reasons he got out so soon. But the only problems he had was weight gain and breathing. Although he never went on a vent he kept going from c-pap to nasal cannula!!! Anyway we got a wonderful book from Barnes and Noble called the Book of Preemies and it helped out so much because we knew excatly what the nurses and doctors were talking about!!! There is a good amouht of info inthe book about NEC!!! Also made sure to be friendly with nurses, because they were taking so much care of Tyler!!! I hope this helps!! I will pray for you and your little girl!!!

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.C.

answers from Shreveport on

I know it has to be difficult but my son was in NICU for 2 weeks cause he turned blue overnight. I was with him the whole time cause my husband needed to work. The hospital was 3 hours away from our home. It was very hard but I pulled through cause there were so many prayers around me. Only God can determine how well developed she is going to be and you have to keep praying (and have others too.) She could possible have some developmental problems cause she is so small but it doesnt mean she cant pull through them when she gets out. It will require alot of patience but as long as you both are encouraging her and working with her also at home - she can pull through it. You have to rely on God daily for her improvement. Just have faith and dont let anything or anyone bring you down about it.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

K.E.

answers from Little Rock on

V.,

Good for you for being so strong! Your baby girl benefits from your perseverance and strength daily. Have no doubt! I delivered what they called "large premies" at nearly 33 wks, who stayed in the NICU 18 days. They were 3 lbs 11 oz and 3 lbs 11 1/2 oz. I do understand some of what you are facing there. I encourage you to reach out to family and friends like never before, read and sing often to your little angel and pray like there is no tomorrow! God is carrying you both. Pray to him so you won't feel as lonely. Although it is a difficult time, it will be wonderful to see what God has in store for your tough little survivor! In your position, I know that you can never hear enough of this. I will be praying for you!

K.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

C.S.

answers from Little Rock on

I am not the mom of a preemie, but we are friends with a couple who had triplets born at 26 weeks, all under 2 pounds. They are now healthy and happy 5 year olds!

They did always gain weight slowly, with one still being really skinny, but the other two pretty much caught up. One child had to have a couple of minor surgeries because of scar tissue in her throat from the breathing tubes, another wears glasses from the oxygen (can cause eye damage, I think that's right). They had physical & occupational therapy over the years, which helped a lot, and they are all doing really well. The boy supposedly has ADD or ADHD, but most boys do these days!, and he reads better than anyone in his class.

All in all, they are bright, healthy, rambunctious kids who are a joy to be around, and are doing great in school. So it may be a rocky road, but there is a light at the end of the tunnel!

Good luck and God bless!!

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

B.S.

answers from Hattiesburg on

Hello! I would say the very most important thing that you can do is to keep feeding her with breast milk through her NG tube until she can nurse on her own. There are so many life saving factors in breast milk, some of which are not even known. I went through the premie experience with a good friend lately, and she got up around the clock every three hours for months to go to the NICU and pump for her daugher. She had infections in the NICU also, but they were resolved. She is now 8 months old still nursing and has no problems! As a former lactation consultand and RN, I believe that breast milk is the MOST important thing next to prayer that you can do for your child. You may not be able to go to the NICU every feeding, especially with other children, but do the best that you can. It is God's provision for newborns! Sincerely,
B. S. RN. CCM.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

A.M.

answers from Birmingham on

I read your blog dont know anything about preemee's but I just want you to know that I am praying for you and your baby and that God does hear and answer prayer and just know that everything will be alright

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

D.M.

answers from Texarkana on

Hi V., I know how you feel when you talk about preeemies. My youngest child was 7 1/2 weeks premature but he only weighed 4 pounds and 15 ounces. He started losing weight rapidly after he was born and it scared my husband and I too death. I had really great pediatricians. We had to have the billy light because he also had jondas and his sugar level was 0. The best thing I can tell you , especially when it comes to feeding your little one is to use Similac Neo Care. It's main ingredient is corn syrup. That helps little ones to gain weight and maintain it also. My preemie baby is now 12 1/2 years old and weighs 129 pounds. The drs. are really amazed at that. He continuously got infections. He has had to have 28 different antibiotics in his life already. Make sure that you use lots of germ killer on your hands and everyone else do the same. Preemies I know do not need to be bathed as often as normal weight babies because of their immune system being so low and for goodness sakes don't let anyone smoke around her. That will destroy her little lungs. I made a lot of people mad because I made them go outside to smoke. Good luck and God bless you. D. M.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

G.T.

answers from Texarkana on

God is faithful and continues to answer prayer! My preemie now 14 was born at 28 week gestation. He had multiple medical problems(and surgeries), and it was even stated that he would not live to see his first birthday. My son lost majority of his small intestines as an infant. He had an ostomy bag that was reversed. My son continues to have chronic diarrhea and he is on a resticted diet. Other than that he is a typical teenaged boy. He participates in sports, was once an honor and GT student, but he got lazy. Every case is different but my son defied the odds. Pray and Trust God for the best.

S.H.

answers from Fort Smith on

My daughter was 8 weeks early and weighed 3lbs. Thank God she didn't have any major complications. I have no experience in dealing with major medical problems but do know that prayer is an amazing thing. As you have said God had different plans for her and he will handle it. Just keep praying and I will be praying for you.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

M.F.

answers from Huntsville on

Good morning V. - lord I wish I had something to tell you about the future, but all I can say is you are in my thoughts and prayers (your entire family). I had 4 preemie children and my daughter had to have surgery at 3 months on her esophagus. But we did not experience what you are going through. I merely wanted to let you know you are being prayed for every day. May God bless you and your family and keep you in the palm of His hands. Please let us know how it goes.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

B.W.

answers from Baton Rouge on

You must be busy with a full and marvelous life! Have you visited http://www.shareyourstory.org ? There are moms of preemies who blog there regularly. It is maintained by parents of preemies who volunteer to help parents new to the preemie / NICU "experience". Many know about the long wait, the emotional rollercoaster as well as caring for a baby with any ostomy bag. you can read blogs, ask questions or blog.... even post your baby's story.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

N.K.

answers from Tulsa on

Having a baby in the NICU can be very hard and lonely. We had to stay in the Ronald McDonald house and could only visit at certain times. I also just had a c-section, so I wasn't moving to well either.My son was only 4 weeks early but had to be lifeflighted to the NICU right after he was born. He was in there for about a month. He had to wear a heart monitor when he left the NICU for about 1 year. He is an active 2 1/2 year old boy now, but he still has very weak lungs and his chest bone caves into his chest, but he is growing and doing fine. Your baby will be fine it just takes a lot of hard work and time.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.G.

answers from New Orleans on

Hello V., I am sorry to hear your little baby has to go through all the proging the Dr. seem to do, And I know it is to save her life, Just thank God she won't remember any of this, But you on the other hand will never forget it!!! I don't know if this will count, 31 years ago I had a Preeme, And I know thank God he didn't have any Surgerys, But he was 4lb's 4 & half oz's Lost to 3/8 He stayed 29 day's in the Hospital, That was the hardest thing for me that I ever had to do, I kind of know what you are feeling, I didn't have the Money, And I couldn't see him , But once a week, He was just precious, All I can say is God had his hand on him, I pray for your little one, And Hope God will be Merciful to you and Her, And she will be alright, If she does have problems in the future, It is Gods will, And I know you will love her, And sounds like she has a pretty special Parent there, That is calm And can't wait to have her home, Oh My Son it now 6 foot 235 & thank God healthy,,, God Bless Joy...

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

J.H.

answers from Huntsville on

{{{{{{{{{V.}}}}}}}}}}}} I'm so sorry your baby is going through so much. I had a son at 7 months and he was in an incubator for 2 weeks and I recall that was an awful time for both of us. I turned my son over into the capable hands of God. I asked that His Will Be Done.

I will put your wee one on my daily prayer list. God Bless you and your baby. God Bless your family, I know how you are feeling.

J. Blue Star Mom, Proud Army Mom

For Updates and Special Promotions
Follow Us

Related Questions

Related Searches