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For all those affected by a rare chromosome disorder.

Neonatal Intenstive Care Unit

Alyssa & Jenifer Gorton

Many, but not all, children with chromosomal abnormalities spend time in the NICU (Neo-natal Intensive Care Unit) of the hospital after birth. Some require invasive intervention, while others are merely monitored to make sure they will survive. Some babies have what is considered a normal birth weight but have medical problems, others are small, some are early and some are on time.

Below are the experiences of several parents, in their own words, who have experienced caring for a newborn infant in the NICU. These are the questions they thought you should ask or answers to questions you might already have.

What kind of birth weight can I expect my child to have?

Gretchen was born at 41 1/2 weeks (I was induced) and she weighed 6 lbs. 10 oz. (at 14 months she has finally crossed the 16 lb. mark!!!!)

Sylvia weighed 3 lbs. 7 oz. (1570 grams) at full-term.

Cameron came home the day after he was born and shouldn't have. He looked fine in-utero. His apgars were 8 and 9. He was born at 6 lb, lost 1 lb and went down to 5 lbs in a week, latched on for nursing well but didn't have a productive suck.

My daughter was born at 32 weeks due to low amniotic fluid. One always hopes that one's baby makes it to term; but it is always good to prepare oneself just in case.

Sylvia Jane Schneer

How long can I expect my child to stay in the NICU?

Gretchen spent 3 1/2 months in the Level 2 nursery (one step above regular nursery and one step below the NICU). Needless to say it was the longest and most emotional 3 1/2 months to date.

Sylvia spent ten days in the NICU (she was full-term but small). She was kept in an isolette for seven days and in an open-air crib for less than three.

My NICU story is a total anticlimax. Abigail appeared tiny on the ultrasounds. No-one knew why, but they prepared for the worst. I gave birth in an operating theatre (she'd got stuck at the bend and had to be sucked out, but they were ready to do a caesarian if the ventouse didn't work) with a team of people on alert, an incubator all ready, drama and expectation in the air and so on. Abigail was born weighing 5lb 3oz. Her Apgars were 7 and 9. She sucked lustily. The medical team was a bit put out at having got everything ready and then not needing it.

Cameron was re-admitted to NICU for extremely high jaundice, still had meconium some, had a real low heart rate (the doctors called him a turtle, it was around 90 usually) his O2 saturations were okay though, sleep apnea (but did start breathing on his own again each time) and real bad temperature control problems (which he still has some problems with that). I had to sleep with Cameron skin to skin for a good 6 weeks to keep him warm enough--it was a nightmare back then, I slept very little. I realized after I took him home that his temperature was too cool at night so kept him with me. My husband and I didn't think he was going to make it and we were afraid to take him home but they sent us home after he was in NICU for a week.

We spent 22 days in the NICU with Rachel before we were able to bring her home! It was the numbest days of my life! We were in shock and disbelief! We expected to be home with our beautiful baby girl, and instead we were living in a hospital and our baby was attached to machines! (We did not know about her chromosomal deletion until about 8 days after she was born!) Be as much a part of your babies care as possible! We changed her diapers, took her temperature, helped with her vitals, bathed her, brushed her hair (she was born with a FULL head of dark hair).... We were VERY familiar with the UNIT before we were discharged! We knew where everything was and helped ourselves to things! (I am sure NOT every unit is that friendly, but we were lucky)!

What might I expect from the nursing and medical staff?

The nurses and the doctors were FANTASTIC!!!! I cannot say enough about how they made us feel at home. For the first few weeks they were "stricter" with us as far as having us leave if a procedure was being done on another baby or if another baby was being admitted but soon after we were part of the staff. I was there from 8:30am - 12:30pm then 5:00pm - 9:00pm (with my husband) so I got to know everyone intimately. The doctors would even joke with me if I can in later one morning that I had missed rounds!! They would basically step aside once we got the hang of taking care of her and sit and talk with us and support us.

We had to make some major decisions those first few months and I have to say that my husband, Ken and I would have labored a lot longer and harder if it wasn't for the nurses and the doctors. They supported us in all our decisions because they could tell that we loved our daughter no matter what and we had her best interest in mind with every decision.

The nurses were fantastic. In fact, one day nurse fell in love with her, and traded babies to get Sylvia back. I think it did Sylvia a lot of good to have special attention -- the nurses were on twelve hour shifts and we never spent more than ten hours there combined. The doctors seemed harsh, but in hindsight I think it's because they were bearers of bad news. The nurses were fantastic and supportive.

Despite our devastation, the nurses were wonderful!!!! They were so caring and showed such concern for our well being and not just Rachel's. They were very careful to call her Rachel and not BABY Bungarden! They did call us "mom" and "dad" -- most of her doctors still do!

Actually we found the nursing staff to be quite wonderful in the NICU and enjoyed out visits. We got some great tips on childcare there. However, the neonatal doctors were sadly overworked (working 24-hour shifts) which turned out to be a problem at times. If you feel like they are not telling you things you should know, get your OB and/or pediatrician involved -- as well as yourself. Remember, you are the parents -- and you have the right to know what's going on. Never feel like you are bothering them -- and never feel like you are asking too many questions. Remember, it's their job. We asked away. It's important, but can be overwhelming at times, especially when your just postnatal.

Just some thoughts on our experience with NICU... it was a positive one (as much as it could be, under the circumstances) and the nurses were always so nice when I'd call at 3 am just to see how she was doing. They even held to phone up to her so I could hear her breathing! And they gave her a beautiful handmade quilt which she still uses.

How much time should I spend in the NICU after I'm released from the hospital?

Try to remember that although an extremely difficult situation, your child will be in wonderful hands while you aren't there and to rest up and sleep.

I cannot stress enough the need for a good night's sleep. If you're pumping milk, your breasts might wake you up before you get the full eight (mine did), but it's a rest you'll need and most new parents don't get. (You'll put your hours in soon enough.)

It's counterintuitive, you want to be there all the time for your baby's sake. BUT, if (like me) you FAINT in the NICU late one night when you should be getting rest and nutrition, it will be pretty hard to convince the staff ever after that you have any sense at all--so don't let it get that far!

Make yourself as available as possible, but I agree with everyone else! Get as much rest as you can! It is SO SO SO important! When you bring your bundle of joy home you will have plenty of sleepless nights... so rest while the nurses are taking care of your baby!!!!

If your baby remains in the NICU when you go home, do yourself a huge favor -- GO HOME AND SLEEP WITHOUT SETTING YOUR ALARM (even if you are breast-feeding -- because chances are they will put your baby on supplemental formula anyway). When I wanted to remain in the hospital and continue to wake-up every two hours to pump, my OB suggested that I do the "go home" thing and sleep "without the alarm set" -- at least the first night. Believe me, you will be waking up every hour soon enough -- so take advantage of the situation and rest up! It's SOOOO important. It was the best advice I got!

For your baby's possible stay in NICU, ask about a "parent's room" near to the NICU where you can sleep, bathe, or nurse in private after they've checked you out of your "regular" room. The maternity ward where Isabel was born only had 2 parent's rooms, and they were booked up, so I had to drive back and forth from the hospital 4 times a day for the 8 days she was in there. Needless to say it was stressful and tiring. If so, see if you can reserve one just in case, and find out if your insurance will cover it.

Will I have trouble bonding with my baby?

Initially I thought I might not want to be too attached (although it was impossible not to fall in love in at 1st glance) since the prognosis was so grim and we weren't even sure if she would survive a few days or weeks. However, we soon overcame that when we realized that especially for that reason we should appreciate each and every moment with her.

Find out how soon you will be allowed to hold your baby. This is essential for bonding -- there is nothing worse than feeling helpless as you watch your baby in an incubator. The first time I held Sylvia (2nd day) it was magic. The nurses were great about having us take care of her -- while we were in the unit we were in charge of feeding, diapering, taking her temperature and cord core.

The nurses called us "Mom" and "Dad" a lot, but I decided that was actually cool--a good rare reminder in the NICU that we WERE Jake's parents, not just nosy people getting in the way. Someone told me that the nurses are trained to call the parents "Mom" and "Dad," because there are a lot of folks in the NICU who don't quite believe that they've actually become parents: maybe because the child was born so soon (so the parents hadn't yet come to terms with their new status), or the child's reason for being in the NICU was related to the parents' irresponsibility (drug exposure or lack of prenatal care, for example). I confess, I remember passing feelings of "maybe we shouldn't get too bonded," when we didn't know Jake's diagnosis, and didn't know if we could expect him to live very long. It's a confusing time, emotionally. So they use the words "Mom" and "Dad" to reinforce the relationship which can seem quite unbelievable when mediated by so much technology and uncertainty.

Should I name my baby?

We did ask that everyone call Jake "Jake" in the NICU--we even posted a sign over his isolette alerting everyone that his name, whatever the paperwork said, was indeed Jake. (I think I still have it around somewhere.) That was a good test of nurses--the nice ones picked up on that quickly and used his name, the less nice nurses ignored our request and kept calling him "the baby," or "BB Richards."

I named Sylvia the moment she was born. I was shocked to learn that other parents had not named their babies until they were positive the babies were going home.

I wanted to breast-feed my baby. Will I receive support from the NICU staff?

If you plan to breast feed, you need to find out what resources they have available (i.e., a designated area to breast pump, bottles, milk storage, etc.)

I began attempting to nurse Sylvia on a Monday morning (she was born on a Friday evening) and the nursing staff "measured" what she took by the difference between her normal breast-milk bottle feedings and what she took after nursing. They put up privacy screens (totally unnecessary for me as I have no modesty whatsoever, but probably good for the other parents). There was also a refrigerator for storing breast-milk (we were given labels to put on the bottles and a tray) and a "pump" room with a telephone with local access (the latter was essential for making arrangements for taking Sylvia home).

One other thing: rent a Medela pump for home-use, so that you can pump at home and bring the milk in a COOLER (the hospital should give you that -- a promotional bag from one of the breast pump or Similac companies) to the NICU. The should have pumps on the premises for pumping at the hospital (you just bring your parts -- the tubing and such). The NICU should also give you disposable bottles (which you pump directly into) and disposable nipples with rings. When you run out, never hesitate to ask for more! I LOVED these bottles. I asked for more when I left. It just meant less washing in the beginning! :-)

What are the requirements for leaving the NICU? When will I get to take my baby home?

Sylvia went home weighing one more ounce than she weighed at birth (3 lbs. 8 oz compared with 3 lbs 7 oz - or 1580 grams compared with 1570). We were told that she had to take all her meals from bottle or breast and maintain her temperature for 48 hours in an open-air crib (as opposed to heated incubator). The unwritten rule was parental involvement. They wanted to see us in action, and know that she would receive the care she needed. They did not discharge her without proof of a doctor's appointment within two days. We had to book a follow-up appt. with her ophthalmologist. Because the NICU had performed a hearing screening that she had not passed, we also had to book a second screening. We were also given home nurse visits, which were wonderful, especially after my parents left.

What is the visitor policy?

Our NICU had a two-visitor maximum, with a parent present whenever a second visitor entered. Children under three were not permitted inside, but there was a playroom with toys for young visitors. We had to scrub in. I turned out to be allergic to the betadine scrub as well as the soap scrub (a painful rash and eczema!), they permitted me to go see Sylvia without the former but not the latter.

You'll be scrubbing down each time you enter the NICU. If you are not used to the harsh soap, I would recommend getting a good hand cream. It does a number on your hands -- as does the washing of your breast pump parts.

Ask if visitors allowed to see your baby when you're not there. The NICU let our pastor in to see Isabel and pray over her and leave us a note, which was nice, but at the same time, it was a bit uncomfortable because I wondered how they checked that he really WAS our pastor and not some imposter? Check the NICU's security procedure for visitors and family.

This really brought back an NICU memory for me! Our pastor, Graham, came to visit when Jake was two days old, at the hospital. He visited in my room (I hadn't yet been discharged), and asked if we could go visit Jake. I don't know, I said, they're pretty strict about parents-only visiting. He pulled out a "Clergy ID" and said with a grin, "I have a pass, I can go anywhere." Turns out, he could! I would have been disturbed to find out if anyone non-medical had visited Jake when we were not there.

There are so many babies in the NICU, but they're not like my baby. Should I interact with the other parents?

Bond with the other parents. You're all in the same boat, even if you're not quite. We did not know what was wrong with Sylvia, because her chromosome disorder was not diagnosed until she was nearly six months old. Most of the babies in the ward were premature, but we had the same concerns as many of the other parents.

It really does help to make friends with the other parents in the place. When we got there, another couple from our birth class was there with their twins--they'd already been there for a couple weeks, and they were veterans--they soon explained to us how to turn off a malfunctioning monitor (I'm SURE that Hell sounds like an NICU full of beeping monitors), how to protect the baby from the harsh overhead lights, etc. Also, they were both former Israeli army intelligence officers--so that made for some fascinating (and mercifully distracting) conversations. Other parents had been away from their homes for months--one baby was flown in on a Blackhawk military helicopter--it really helped us remember how lucky we were to be "graduating" after a few days, not months.

What is it like in the NICU?

One night when Matt and I went down to cuddle Sylvia after our own dinner, a premature baby died in the NICU. I still get teary thinking about it. The staff tried very hard to save the baby's life, but it was born at only 25 weeks. They were excellent about comforting us, although they were not able to do it until the next morning. There is no sugar-coating it. A NICU is a very hard place to be, but the staff told me that the "graduation" parties made it worth it.

They threw a big 1 month birthday party with hats and cake and presents and continued to shower us with Polaroid shots of Gretchen when we weren't there and gifts throughout her stay. When we finally were able to bring her home, they threw us a going away party and presented us with a scrapbook they had put together with all the Polaroids they had taken over the last 3 1/2 months. It is in her nursery and is one of our prized possessions.

One thing I will suggest if at all possible, is try to find someone, (other than your spouse) who you can talk to! It is a difficult time both physically and emotionally, and YOU need someone to vent to! I was VERY lucky that I met a delivery nurse who I bonded with! She came in and talked to me every day, (even a couple times on her days off) and let me vent, cry, whatever! I did not realize until after we went home, how much her support meant to me!!! We are still friends almost a year and a half later!

What else should I ask?

Does the NICU unit support "kangaroo care"? This is a program that improves preemie's chances of going home early and involves placing the naked baby (except for the diaper) on a parent's naked chest. Ours didn't, although we kind of got around it while I nursed Sylvia.

What kind of chairs are available to sit in? Are there rocking chairs and other furniture in which you might be comfortable for long periods of time? You're going to be in the NICU for hours, even if your baby is there for only a few days, but especially if the stay is months long.

Does the NICU have a "lights out" policy? Ours had an hour of quiet, dark time every few hours, where the overhead lights and unessential equipment were turned off. NICUs are noisy places and babies often learn to tune the cacophony out by tuning everything out.

What else is good to know?

Elizabeth Sorg Close the incubator portals softly (they're 110 decibels -- and something that always made Sylvia jump). Bring a small stuffed animal to place in the incubator or bassinet. (We had a tiny Eeyore that the nurse placed in a variety of positions, all amusing to us. We have a snapshot of Eeyore on Sylvia in the open-air crib, and its one of the toys that she still reaches for in the night. Place photographs of you and your husband in the incubator (good facial closeups). The more you personalize the space in which your baby inhabits, the more the staff while treat him or her like a human being.

Bring some books (children's books) with you to read to your baby and pics of your family. It humanizes the whole place and will make you feel a lot more comfortable and happy!

Do they allow a small tape player? If yes, record some favorite children's stories and keep them in your child's bed. Your voice will be there even if you're not. My daughter, Elizabeth , spent 4 months in the hospital her first year. I recorded several books - even the nurses found these tapes to be relaxing!

Find out what clothing your child will be permitted to wear -- our NICU had a "no zipper" policy.

Every year they have a NICU "reunion" for the babies who've been there - it's fun to see all these kids who had such a hard start in life running (or crawling!) around and laughing!

My advice for what its worth - spend as much time as possible familiarizing yourself with the hospital and the NICU. My daughter spent time in two different hospitals with very different policies and procedures for parental involvement. Find out the visiting hours, cafeteria/local restaurants and whether the hospital has a place for parents to sleep. If your baby is premature you will be spending most of your time focusing on the baby. You need to make sure that you and your family's needs continue to be met.