Norah's Story

The idea to write a book (now a blog) came after my husband, Forrest and I became parents to two of the most wonderful premature babies. Our daughter, Norah, was born at 26.5 weeks gestation on August 11, 2006 after a seemingly normal pregnancy. I had no morning sickness or any ill symptoms during the first 25.5 weeks. After minor spotting for a few days and being told by my doctor that all was well, I told my husband of a minor backache one Sunday morning as we were getting ready for church. I decided to call my doctor’s on-call service and got a return call from my doctor while we were driving to church. He told me to go to the L&D department of our hospital and get checked. I asked if it could wait until after church since my husband and I were leading praise and worship that morning. He told me that it couldn’t wait. Upon getting checked in, my nurse, Becky, checked my cervix to find that I was 3 cm dilated. By the time my doctor arrived about an hour later, I was 4 cm. He told us that we had two options. We could do nothing and I would be on bedrest and more likely deliver soon. Or, he could perform an emergency cerclage (suture the cervix closed), hopefully buying us more time in utero. He emphasized how very bad having a 25 week baby could be. We opted to have the cerclage. After everyone left the room to prepare for the surgery, I broke down crying with Forrest. I couldn’t imagine losing the little one who had been kicking me for weeks now. I was awake for a surgery with a spinal block anesthesia. The surgery was difficult. My cervix was completely thinned and the doctor wasn’t sure if the suture would hold. I was totally confident in my doctor as I had been told by every nurse there that he was the very best at this procedure and at high risk pregnancies in general. I was discharged the following day (Monday) after a round of contraction preventing drugs and steroid injections to help the baby's lungs develop and was given orders to be on complete bed rest (no showers or baths) for 3 weeks. I work from home as an analyst, so we set up my “office” in our bed. Bed rest was going fine until Wednesday morning when I was awakened by contractions. We went back to the hospital for more contraction stopping drugs. Nothing was working to stop the contractions and I was getting little sleep at night. Early Friday morning, I just started crying for no reason. I was alone (Forrest and my mom had gone to our house to sleep). I was so tired and the contractions were not letting up. Suddenly, my water broke. I called the nurse and then called Forrest from my cell phone. I think that it was sometime around 5 am. The nurse had me turn over on my hands and knees and she checked my cervix. Both of Norah’s feet were through, so it was off to the OR we went for an emergency c-section. Everything went fine except that my doctor had to do a classic or midline incision vs. the normal lower transverse (bikini) incision. This type of incision increases the chance of uterine rupture in subsequent pregnancies. Norah Jean was born on August 11, 2006 at 6:15 am at 1 pound and 13 ounces and 14 inches long. Norah was stabilized by the NICU staff quickly and was transferred to St. Louis Children’s Hospital via ambulance. The transport team brought her by my room before leaving with her. I vaguely remember that part since I had come out of anesthesia and recovery shortly before. I left the hospital 3 days later. Norah stayed in the NICU at Children’s for 5 weeks and then, at our request, was back-transferred to her birth hospital once she was at the “feed and grow” stage. Norah had a PDA (patent ductus arteriosis) which was resolved after medication as well as retinopathy of prematurity which also resolved. As I write this post, she is a spunky 3 1/2 year old, learning more and more everyday. She has only had 1 cold in her life which happened at 18 months. Thank God for the miracle of breastmilk!

Judah's Story

When Norah was 11 months old, we found out we were pregnant again. We weren’t trying, but also weren’t trying not to get pregnant. I had an ultrasound at 6 weeks to check everything out and was also advised by my doctor and midwife to discontinue breastfeeding since it can cause uterine contractions. I was disappointed since I had wanted to go to Norah’s 2nd birthday if possible. My doctor also advised me to have an elective cerclage at 14 weeks. We did just that and had a very non-eventful pregnancy until around 28 weeks. In later ultrasounds, we found out the baby was a boy. I developed gestational diabetes around 26 weeks and was put on the diabetic diet. I lost about 10 pounds in the next 2 weeks, which was all fine. At around 28 weeks, I started having some contractions and went to L&D to be checked. The cerclage was holding fine and I was put on IV meds to stop the contractions. They let me go home on bedrest the following day. My husband, Forrest, took vacation to be home to take care of Norah and me. We had already been planning for him to quit his job once the baby was born or whenever I could no longer handle working and caring for Norah. So, the following week, he gave his notice and took the rest of his vacation. We made it on bed rest for about 2 and a half weeks. I started having severe pain in my sides one morning and knew that it was serious. We got Norah out of bed and headed to the hospital. Once they got me on the fetal heart rate monitor, they soon determined that our baby boy was in serious distress. My doctor was not there yet, but it couldn’t wait. The on-call surgeon did an emergency c-section, cutting me alongside the old incision. My uterus had ruptured along the old uterine incision and the placenta was through the rupture. The doctor cut my uterus open in the lower transverse manner to get the baby out. My doctor got there shortly after delivery and spent the next 2 hours repairing my uterus. Forrest Judah was born on January 31, 2008 at 10:16 am at 4 pounds 3 ounces and 17” long. His initial apgar score was a 1 (out of 10) which means he was almost dead. The wonderful NICU staff that had so aptly cared for Norah revived our little Judah and stabilized him quickly. He was on a ventilator briefly during that first day, but quickly pulled it out with his hands. By the next day, he had pulled off his oxygen canula. He was exactly 31 weeks at birth, but the hospital staff commented that he was a big 31-weeker. They gave us an estimate that he might go home in 5 weeks. He was quickly overcoming hurdles and gaining weight rapidly. At 1 week and 2 days old, he had his first bottle and the following day had his first breastfeeding. He did well on by-mouth feedings and was sent home at 2 weeks and 6 days.

Prenatal Advice

If this is your first pregnancy, I would advise you to take it easier than your doctor might advise. There is no reason to be alarmed, but you also don’t know if you might be someone that is predisposed to preterm labor or has an incompetent cervix. Eat as healthy as possible and be careful to not lift too much or exert yourself. Call on your spouse or family to help out as much as possible. We women often have trouble asking for help. You have to realize that your loved ones want nothing more than for you and your baby to be healthy.

Once you are almost into your 3rd trimester, pack your hospital bag. Hope for the best, but prepare for the worst. If you will be breastfeeding, you may want to buy a hands free pumping accessory so that if you start off with the pump instead of the baby, you’ll be prepared. Hands free makes those first days of pumping so much better.

Around the same time, have your baby names picked out if at all possible.

If you and your husband know that you are fine with this baby being the last one, you may want to talk about possible scenarios such as hysterectomy. In my case, if I had been awake to make the decision, I would have had a hysterectomy. It is very risky for me to carry another baby, although I’m physically able to get pregnant. My husband and I hadn’t discussed it, so he had the doctor do his best to repair my uterus.

Breastfeeding / Pumping

The decision to breastfeed your baby is one of the most important ones you’ll make. It is especially beneficial to premature babies. Neonatologists will even prescribe breastmilk as medicine for preemies, and if the biological mother cannot supply the milk, it can be ordered from a milk bank.

Start pumping as soon after delivery as possible. Pump every 2 – 3 hours during the daytime for about 15 minutes at each session. Once you are pumping about an ounce at each session (this may be after several days), adjust the amount of time pumping to be 2 additional minutes after the final drops of milk have stopped flowing. The NICU will provide a pump; you’ll just bring your pumping accessories (tubing & connectors). The hospital will provide you with those accessories. Try to get them to give you a 2nd set. This helps to have a set at home and a set that you bring to the hospital. All of the hospitals use Medela pumps. For home pumping, you’ll need a double electric pump. I used Medela pump-in-style as my main home pump until I got a free hospital grade pump from the milk bank that I donated to.

If you are pumping under 600 - 750 ml a day by the end of the 2nd week, try to increase your milk supply to be ready for when he will need more milk. There are many things you can do to increase supply such as: breast compression while pumping, skin to skin contact with baby, increase frequency of pumping (every 2 hours and at night), power pump (pump 10 min, off 10 min, etc for about an hour total). As a last resort, Motilium or "domperidome" is a prescription drug available from Canada that has a side effect of increasing the production of prolactin and can increase milk supply. For more information on domperidone, go to http://www.kellymom.com/newman/19a-domperidone1.html.

Take care of yourself

Don't feel like you have to be at the hospital all the time. We went for a couple of hours a day and then would go home and REST!!! There were a couple days when we didn't go at all. And some times just one or the other went to the hospital. Don't feel guilty about not being there ALL the time - there are trained professionals who are taking care of the baby 24/7. When baby is close to coming home that's when Mom will have to be there more to practice feeding.

We only allowed visitors at the NICU when we were there. Others could come in but ONLY if one parent was there with them.

Random Breastfeeding Advice

1. Book by Ross Lab - Breastfeeding Your Premature Baby - 35 pages - This is one of the best things I read. This talks about how the 750ml/day pumping is important.

2. Baby should get colostrum (the first milk - you can tell by the color, more yellow) as the first feedings. Our nurses did not give it to her without us insisting. Research indicates that this is the best for their new digestive system. The first pumpings may be only 1 ml or so. Have a nurse get you an empty 1 or 3 ml syringe (no needle) to suck the pumped milk into from the collection bottle. Then, that can go to the freezer or fridge to be fed to baby. First feedings for a tiny preemie are 1 ml each.

3. Since baby's mouth will be so small to feed - Medela makes a nipple shield and it makes it easier to latch on for breast feeding.

4. When baby comes home, breasts should be completely emptied 3 times a day so pump 3 times to get all the milk out. This will help with supply. This is if the baby is also breastfeeding. If baby is not breastfeeding well, pump every 3 - 4 hours or every 2 hours if you have low supply.

5. www.breastmilkproject.org will give a free hospital grade breast pump, ice packs, bottles, etc if you donate ANY amount of milk. I had 200 or so bottles of frozen milk when Norah came home because she ate so little in the NICU. I wanted to feed her fresh milk, so I donated the frozen stash. I was also having trouble with my supply (because no one had told me about the 1st 2 weeks amount you should be pumping) so I thought that donating my frozen milk would be an act of faith that God would help me with my supply.

6. I pumped and bottle-fed until Norah was 11 months old. I have lots of advice on long-term pumping (ways to make things easier). Even if you’re only pumping while baby is in the hospital, get a hands-free pumping device of some sort. I used several but found Medela’s hands free pumping kit along with their soft-cup bra to be the most comfortable and fastest to “assemble” for each pumping. Medela no longer makes this, but they do have a new pump that comes with hands-free attachments. Pumping in the car as a passenger or driver is pretty easy. Get a nursing cape to put on over your pumping equipment, then put your seat belt over all of that. Medela pumps have an optional car adapter. Also, you can store your assembled pumps in the fridge between pumps for 24 hours. This way, you only have to wash them once per day. Here is a quick reference card on milk storage: http://www.kellymom.com/store/freehandouts/milkstorage01.pdf

Random Advice

1. Get CPR training before baby comes home. We had to perform CPR when Norah completely stopped breathing one day at our home.

2. Check into the lifetime maximum of your health insurance. If your insurance doesn't have a lifetime max that's great - if not you can change your insurance or get supplemental insurance. Norah’s Children’s bill was around $150,000 (thankfully all covered by insurance)

3. Has baby had any antibiotics? If so baby will have to have hearing screened - do the in-depth hearing test.

4. If baby's been on oxygen they will do an eye exam and it's not fun. Norah had once a week eye appts for quite some time.

5. The nurses should be allowing parents to take care of baby as much as possible. When we came home with Norah we were totally comfortable taking care of Norah - diapers, feeding, etc.