Preparing for a possible NICU stay

August 27, 2012 in Birth Plans, Health Issues

Expectant parents preparing for the birth of a baby with Down syndrome will read information in our book and other on-line resources discussing the possibility of a NICU stay.  Mom Adina over at Baby Center conducted an informal poll of moms which found the following:

32.4 percent of babies went home with mom

24.3 percent spent less than 2 weeks in NICU

19.8 percent spent 2 to 4 weeks in NICU

9 percent spent 4 to 6 weeks in NICU

14.4 percent spent over 6 weeks in NICU

Adina’s poll shows over half of the babies with Down syndrome had no NICU stay or only a short NICU stay.  But a large percentage do have a stay over 2 weeks.   So while many babies will not have a NICU stay, practically speaking it is a very good idea to prepare for the possibility.

Experienced moms, did your baby have a NICU stay?  If so, what advice do you have for expectant moms who wish to prepare for that possibility?

(Original post January 7, 2011)

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21 Responses

  1. Coleen says:

    Hi, I am not a DS mom, but I am a premie mom. The NICU can be daunting and scary if you don’t know what to expect.

    My daughter was 5 weeks early and on a vent. She was then on an oxi-hood and warmer bed before going into an incubator. She was in the NICU for 16 days.

    I would ask for a tour of the NICU if I were expecting to have a baby that might need a stay in the NICU. You will most likely have one on one nursing care at the beginning and then it goes to probably 3 to 1.

    Get to know your nurses. Be there for every shift at some point. Ask questions. How were the feedings? What’s the oxygen levels? What tests have been done? (spinal taps, B scans of the brain, etc. are common for premies)

    Always ask when they expect your baby will come home. You just never know when they will say, “Today!”

  2. Amy says:

    My daughter Abigail (now 7) DS had a short NICU stay (in and out over 4 days) because of jaundice and a pediatrician who thought he heard a skipped heart beat or arythmia. It was definitely hard not having her in my room, and since I’d had a c-section, I had to get through my own milestones before they’d let me visit her. My husband’s support was critical to my feeling involved, but we were both pretty vocal about getting her graduated from the NICU asap. To some extent, the staff did listen — she was only mildly jaundiced and was a whopping 8 lbs 4 oz at birth, so they agreed to give it a trial run out of NICU, but she was yanked back in within 24 hours when her bilirubin level went up.

    When she was discharged, we were sent home with a heart/lung apnea monitor. That contraption was really hard to live with – it was heavy enough that I wasn’t supposed to lift it and the baby, and Abigail had to stay connected to it on a cord that was only about 10 feet long constantly for the first few weeks. It also had a tendency to go “off” with a false alarm — the electrodes would come loose due to her sweating or just moving around, and the alarm sounds like a CO detector going off in your ear. Once we were able to send in the first 3 weeks of “recording” and they cleared her of any apneatic episodes, things got easier. She only had to be hooked up while sleeping for a few more weeks. In a way, although we dreaded the false alarms, the monitor actually helped me sleep because I felt like I didn’t have to do that “hover over the newborn to make sure she’s still breathing” thing. Still, it was wonderful when we handed it back to the hospital after 6 weeks.

  3. Adina says:

    I am honored that you used my poll. I originally put the poll out there because we had a 44 day NICU stay and I had been totally unprepared that it was even a possibility. It helped me to reach out to other mom’s online at Babycenter because no one else in real life understood what I was going through.

    NICU is the hardest thing you will go through, a long NICU stay can even result in post traumatic stress disorder. It is often described as a roller coaster, you will make great progress at some point and then either stay there for a while or go backwards. You need to remember that you are your child’s advocate, ask to be included in the doctor’s rounds, ask for a primary nurse, ask to see the chest x-ray or blood test results, ask them to explain it over and over until you understand it.

    Some moms are truly blessed with a perfectly healthy child that has down syndrome and some of us are blessed with a medically complex child that has down syndrome. You will be surprised at what you are capable of doing. The most surprising aspect of my entire stay is that the down syndrome didn’t matter, when your child’s life is in the balance all you care about is getting your baby home with you where they belong.

    I pray that most women reading this will be the ones who go home with there babies. But for the ones that are not so lucky please reach out for support and know that we who have walked that road are forever changed and reach out to those that need a helping hand to get through to the end of the ride.

    Proud and blessed mommy to David now 9 months old.

  4. Missy says:

    Just a quick reminder that the poll is “non-scientific.” I’m active over on the Baby Center board where the poll was done, and reasonably certain I didn’t click on the thread to vote because I did not have a NICU stay with my child and the title “Poll about birth and NICU stays” didn’t seem to apply to me. So results may be slightly skewed toward those that did have a NICU stay.

    One thing that it took me a while to get my head around with Down syndrome is that while there are a number of things that MAY happen to each individual child, not everything is going to be experienced by MY child. I’ve learned to try to prepare myself as well as I can (as is suggested by an earlier commenter a visit to a NICU would do, or later learning some of the common signs that my child might have a certain issue), but wait till I need to worry about something as best I can until it happens.

  5. Pam says:

    My son had a 9 day stay in the NICU that I was not prepared for. I sobbed and sobbed to the point of hyperventilation when I was discharged from the hospital and had to leave him the first night.

    Thankfully, since I had a C-section, I was able to have a great support system that was at my beck-and call to take me to the hospital. I was also thankful for the nurses who let me call all hours of the day when I couldn’t be there.

    I don’t think there is anything that will mentally prepare you for the baby’s NICU stay, but know that baby is in the best care, will come home and it will soon just be a memory that you will rarely think about because you’ll be quickly loving and enjoying the baby at home!

  6. nancy says:

    My Gabby did not have a NICU stay. She stayed an extra night and they let me stay (without care for me). During my pregnancy I really blocked out the possibility of a NICU stay even though I was aware of it. (Since my local hospital did not have a NICU at the time, it would have been “specialty care” for Gabby, or a transfer to CHOP.) I did not prepare. I did not make plans for care of my other children. I held on to hope that she would come home with us.

    While that worked for us because she never needed to stay, if we had dealt with a NICU stay I probably would have regretted my lack of education and preparation about the possibility of a NICU stay.

    I think like many things with Down syndrome, a parent has to balance preparation for the possibilities (and the benefits that brings) against worrying about things that may not happen (and the anxiety that may cause).

    Missy you bring up a good point about the poll. I think it is useful, but we do have to keep in mind that it is informal, not a scientific poll. Great for starting discussions though, and giving a chance for personal experience. Maybe we can find some medical stats on Down syndrome and NICU stay to supplement. (Time to ask our favorite experts!)

  7. nancy says:

    Follow up: Dr. Skotko just informed me that he knows of no research on the likelihood of a NICU stay.

  8. Heather says:

    My daughter had 25 day NICU stay for breathing issues, feeding issues and cyanosis. We had her diagnosis for DS well in hand early in our pregnancy (via amnio). In light of having to deal with NICU we were sooo glad that we didn’t have to deal with the dx at the same time. I think I would have appreciated a tour of the NICU and meeting the “players” ahead of time. Each doctor had their own personal style and knowing that would have been helpful to me. Then I could have adjusted their style with mine and had a much better working relationship with the. Knowing the rules and protocols for NICU would have been helpful ahead of time too (hours, infection control, yes I can read the chart, no they won’t tell me anything about my fellow NICU parents, and don’t even try to pin them down to a going-home date).

  9. Rachel says:

    My son stayed for 11 days. He was barely 36 weeks, and had oxygen saturation problems. There’s such good advice here already.

    I found a book afterwards that would have helped me a lot. (“The Preemie Book”, by Dr. Sears, but I’m sure other books on preemies would have similar information about NICUs.) It detailed many of the policies, people, procedures, and equipment we found in the NICU, that we had a hard time getting anyone to explain to us in a way we could understand.

    Towards the end of our stay, we had a conference with one of the neonatologists, who was very helpful in making sure the nurses gave us the information we needed, and stopped the terrible cycle of nurses telling us every morning that we were going home, and having the evening shift say “No, who told you that?” He told us what the criteria were for going home, and then we knew what specific questions to ask to have a better idea when that might happen.

    We were so surprised and grateful to be able to stay in the same room I recovered from the birth in for the length of our stay. We were lucky there was enough room for us to do that, and it made everything so much easier. We learned, too, that it was better to leave the hospital every once in a while, even if it was only for an hour between feedings. It felt good to be outside, if only for a little while.

  10. Maggie Fluck says:

    Our daughter, Rachel was in the NICU at our local women’s hospital for 4 days and was then transferred to another hospital NICU for 59 days. She had duodenal atresia and needed to have it repaired. Her doctor decided that she needed to gain a pound before he would do surgery.(She weighed 3 pounds, 6 ounces when she was born.)I know some doctors would do the surgery right away though. It took a month for Rachel to gain the weight through a IV line which fed her TPN. The atresia kept her from being able to eat through her mouth. She had her surgery and then her recovery included learning how to drink from a bottle, pooping and gaining weight. After she did all those things she was able to come home. The NICU is scary at first mostly because you are just afraid for your baby. After that, the NICU and it’s staff becomes a sort of home. The NICU where Rachel was allowed us to hold her from day one. We could bring in blankets and clothes to dress her in. They encouraged us to change her diapers and take her temp. For Halloween we were able to decorate her isolet. You will also meet other parents and their children and if you are lucky you will have new friends for life. There is a lot of support.

  11. Christine says:

    My Olivia was in the NICU for 15 days. Honestly it was such a blessing for me. They taught me how to care for my girl. They helped me with nursing, how to feed her the bottle, how to bathe her – everything. AND I got to rest up after the delivery (I got a REALLY bad cold four days after giving birth). Yes, it was a little scary, but Olivia was only in there because she had trouble with the suck, swallow, breathe reflex. She didn’t breathe when she ate!! I was NOT going take her home until she could! She was born about one week premature. I did miss her and it was strange not bringing her home, but I knew that one day I would and that it would be okay.

  12. Cassie says:

    My Audri was born at 35 weeks and she was able to go home with us. However, we were readmitted for one day in the NICU for jaundice after being home for 3 days. Even though I am a NICU nurse, was completely prepared and knew all of the nurses, it was still so overwhelming and extremely scary. I couldn’t believe how emotional I was. I would encourage mom’s with children in the NICU to ask many questions, REMIND nurses and doctors to slow down while explaining things- especially if the topics are difficult to understand. ( WE have a bad habit of speaking with abbreviations and medical terms that are confusing.) ASK for resources! If the NICU does not realize that you want outside resources, they may not readily provide them. Don’t be scared to hold and bond with your baby…the tubes, electrodes, and machines can be overwhelming, but most nurses will be helpful with transfering babies from bed to mom…studies prove that is NICU babies do best skin to skin with mama!

  13. Kim says:

    I didn’t get a prenatal diagnosis, and I don’t know if it was better that way or not. One thing that was bad was after I delivered, she was whisked to the nursery for breathing problems about an hour later. About 5 hours after she was born, she was admitted to the NICU. The first week was the hardest, dealing with the confirmation of the Down Syndrome, and multiple other diagnoses of things like Pulmonary Hypertension and a large VSD. The hardest part about the whole thing wasn’t the DS, it was the heart problem and the fact that she was in a medically induced coma and intubated for a week and a half. We didn’t know what would happen and I think the uncertainty was the worst. We spent Two and a Half months in the NICU. My advice: Take frequent breaks, as hard as it is to say, while your baby is there, they DON’T need you there 24/7. What your child DOES need is you to take care of yourself. Trust the nurses and the doctors, it gets frustrating when they keep saying “we have to wait and see” but know it’s best for your child to be 100% ready to go home. Just remember that you are not a bad person if you don’t want to be there all the time, and even if you do, you can’t live in the hospital. The number one thing you need to remember for a NICU stay is to Take Care Of Yourself.

  14. I kangarood my son as much as possible! I also had music playing softly in the background along with black, white and red pictures in his crib. You could even use a mobile.
    Do not allow any sick people near your baby!

  15. Leah says:

    We had a birth diagnosis and had our daughter with a home birth. We pretty much knew she had Ds at birth, but otherwise all seemed well until 24 hrs later when she started turning blue. So off we went to a hospital with a good NICU, where she was admitted and kept for 18 days. Her complete AV canal heart defect was diagnosed there, but for the most part she was in for jaundice and then feeding issues. She was there for 18 days. We only got to take her home when we did because we fought to get her home with an NG tube for feeding. The NICU stay was VERY hard for me. Probably harder than knowing she had Ds. I expected to be able to be at home with my baby,not to get to sit by her bed all day being told by the nurses that I shouldn’t hold her except to feed her bottles. So yes, preparing people for a NICU stay is a GREAT idea!

  16. Megan says:

    We were aware Ellie would go to the NICU. After the prenatal diagnosis of DS/AV canal defect, we were told she’d go to the NICU for monitoring at our local hospital where I delivered. When her double bubble was diagnosed later in my pregnancy, we learned that Ellie would require a transfer to a nearby Children’s Hospital for surgery/recovery. She was transferred the night of her birth (at 40 weeks 1 day, after 36 hours of labor from induction and an emergency c-section). We toured our local NICU, but should have toured both. There were a lot of cooks in the kitchen, so we had her case manager get everyone together to get on the same page. I cried every night when we left, but I knew I had to recover, too. The NICU was one of the hardest experiences of my life and robbed me of the new-baby joy. Her homecoming was much better than her birth! http://little-miss-stubborn.blogspot.com/2011/03/life-at-home.html

  17. Angela says:

    Ian had a 5-day stay in the NICU due to a respiratory infection and low O2 sats. I strongly suspect that the respiratory infection was related to the cold that I’d been fighting the week before he arrived. His stay was in no way related to Down syndrome. (We didn’t receive a prenatal diagnosis. Ironically, the neonatologist didn’t even suspect Ds until he saw Ian on his second day in the NICU!)
    Having a baby in the NICU is hard under any circumstances. With very few exceptions, no mom expects her child to be in the NICU. That said, I’d recommend all expectant moms entertain the remote possibility that any of her babies might have a stay in the NICU. Find out what facilities are available at the hospital. Talk to other parents who have delivered there (and have also had kids in the NICU).
    Above all, if your baby does have a stay in the NICU, know that they are in the best of hands. We were blessed by some absolutely amazing nurses. The hospital where I delivered Ian holds an annual reunion for their NICU babies. We just went to the reunion a few weeks ago and almost 16 months later, many nurses still remembered Ian!

  18. Cindie says:

    My son TJ was in the NICU for 32d. He was born premature at 35w5d due to no fluid and had sat problems and feeding problems among other things. We had a prenatal dx via amnio at about 17w so we had time to prepare for the possibility of a NICU stay.
    They taught us so much in the NICU and we’re grateful to have had his nurses there for support. It’s been 3 years and we still remember them and his stay when we visit his other specialists at the hospital.

    For expectant mothers make sure you get a tour of the NICU facilities and find out what will go on if your child needs to be in the NICU.

  19. Jess says:

    Under what circumstances would a newborn DS baby not be able to come home at all? It was discovered 3 days after he was born that my good friend’s grandson had DS. They did not do an amnio so it was a complete surprise. They are saying they probably won’t be able to bring him home at all. Why, I’m wondering?? Thanks so much and God blessing to all.

  20. Stephanie says:

    Hi Jess,

    If a newborn with Down syndrome is staying at the hospital, then there are usually health conditions beyond Down syndrome requiring medical intervention. However, most infants even with serious heart and digestive issues come home after a stay in the NICU that can last a few weeks to a few months. Because the vast majority of the procedures to fix these issues are successful (the survival rate for the most common heart repair is 97% according to Cincinnati Children’s Hospital), the babies are discharged from the hospital as soon as they have recovered.

  21. Jenny says:

    Wow! Reading the stories of others not only helps one feel connected and not alone, but also helps give you perspective on your own experience. My daughter was born May 22nd at 7 pounds, 3 ounces and just one week early. We knew she had both Trisomy 21 and an AV Canal Heart Defect. We were told that depending on the post birth echo and whether or not she had a narrow aortic arch, she would require surgery immediately after birth or go home and have surgery 3-6 months later. That was 7 weeks ago today. She is still in the hospital. Two weeks ago she was transferred from our local NICU to Cincinnati Childrens Hospital to prepare for surgery after “failure to thrive”. To this day she has still not had the surgery and is not scheduled. Each day we make the trek to the hospital we find out something new: she’s doing well today, we are going to try this and see if she responds; or she’s not doing well and we may need to consider surgery, or our personal favorite-maybe we can consider sending her home. We have been bounced between the possibilities of surgery and home on 3 different occasions now. We were completely unprepared for such a long hospitalization as well as for what we have learned that brings-truly medical “practice”. I balance that out with also the understanding that we are truly blessed to live in a time and place where we can also reap the benefits of medical care.

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