Birth Story and NICU stay

To be brutally honest, the pregnancy was stressful. I'm not sure it's something I want to experience again. It was not the wonderful, beaming, natural transition into motherhood that I envisioned. Every week there seemed to be another problem, compounding upon the one before. If you were along for the journey, I probably shared some of it with you. Although I'm not sure that I shared my fears with many. I desperately want more kids. And I'm the type of person who's been scarred for life by the preemie experience. My mother had 3 preemies. Didn't phase her, or at least it didn't stop her from having more kids. Yeah, I'm not really like that. I'm just waiting to see if this experience will be a scar or an open wound.

I know many people believe in the power of thought. Perhaps I added to the stress by being so anxious. Maybe Lydia was premature because I unintentionally willed it to be true. My hope was always to make it to the end of 2008, although I'm not sure that I truly believed that I would get there. My mother has some thoughts about chinese superstitions too. Either way, I am not overwhelmed by guilt because in the end, I didn't know. I had no idea this is the way things would turn out.

The pregnancy seemed to be a failed test after another. Failed genetic testing, blood pressure that shot up at the start of the second trimester, low amniotic fluid... there seemed to always be something that would come up. I had actually just failed the first glucose test and was set to take the longer test the week Lydia came. Luckily they tested me again in the hospital and I was fine.

On the morning of Wednesday, October 29th, 2008, I had an appointment with my OB GYN. My blood pressure was fine, as was the level of protein in my urine. They wanted me to take a fetal monitor test but the machine at the office was in use. They sent me over to Summerville Medical Center to use a machine in the Labor and Delivery department.
When I got there, my blood pressure was 160/100. I felt fine, but they insisted I stay. They monitored the baby, pumped me with medication to stabilize my blood pressure and took a bunch of labs. By mid afternoon Gary had arrived at the hospital. They kept me all night hoping that I would stabilize. They started giving me steroid shots to increase the surfactant the baby was producing in order to strengthen the brain and lungs. After evening labs, the doctors were worried as levels were high and the blood pressure was still not under control. They had begun collecting my urine for the 24 hour protein test and started me on magnesium sulphate to prevent seizures.
It was when they told me they had to put a catheter in that I finally broke down. I always thought catheters were for old people, and the thought of some unnatural thing being stuck into me to help me pee...well, needless to say it freaked me out. I think I still didn't think that Lydia was actually coming though. The hospital I was in only delivered babies 34 weeks and above, so they transported me to MUSC where they had a neonatal intensive care unit. When we got to MUSC, it was past midnight and I was beyond tired.

I spent the night in MUSC where they started to wean me off everything. The catheter they had put in at Summerville Medical was incredibly painful every time I peed! I was so glad when it was taken out the next day. MUSC was not as worried about the tests and results. They said that some of the levels that were high were due to the steroid shots. By the next day, I was feeling fine and ready to go home for the weekend. Really, there was such a big difference between the staff at MUSC and the staff at the other hospital. MUSC is so used to seeing high risk pregnancies that it's just par for the course.

The doctors decided that I needed to stay for the weekend to stabilize, and that my protein had been high. On Friday they did another stress test on the baby. My blood pressure started creeping out of control (200/100) even with medications. They told me that I had pre-eclampsia and we needed to monitor it closely. Saturday came and I was hooked up to the stress test for 2 hours. I was irritated and started to have some breathing issues. At this point they were worried about pulmonary edema. They decided the best thing was to get the baby out.

We had reached 28 weeks to the day by this point. They started induction by putting a pill in the cervix to soften it. This was 1 pill every 4 hours. Labs were drawn every 2-4 hours. Some of the nurses were nicer than others. Every shift change seemed to bring new ideas on how I was supposed to be positioned, what I should be doing, how I should be treated. It was actually quite aggravating. Even the ob gyn had a hard time keeping me stable because the nurses would continuously make me change positions, often making my numbers go up.

After 12 hours, they started me on pitocin to start contractions. My blood pressure was still high, and the baby did not respond well to the contractions. By this point I was back on the magnesium sulphate and on a catheter after some resistance as the first catheter had been very painful. The doctors decided that they needed to do an emergency caesarian section.

I had an IV and an arterial blood gas line put in for the c-section. Once the c-section was decided upon, I was wheeled into the operating room, ready to go. I was given an epidural (by a guy that told me he was going to stick stick and I would feel it burn!). An emergency c-section came in ahead of me where the baby was coming out feet first! We had to wait about an hour. I was falling asleep and snoring because I was so tired! Gary had to wait in the room.

Finally it was time to get started. They did a bikini cut to get in, then a vertical cut on the uterus because the baby was so small. This means there'll be no VBAC for me! Some people feel robbed of the chance of a vaginal birth. Not me! To be honest, I can't imagine a bowling ball sized thing coming out of there! I couldn’t feel anything from the chest down. It was a strange feeling. And they kept throwing tools on my chest when they were done, and talking about what they wanted to eat for lunch!

When they pulled the baby out, I did not hear anything but Gary saw her and heard her cry. Lydia was born in the morning at 2lbs 7oz, 14 inches! Gary was able to spend the first few minutes of life with her, watching her go through the apgar test. He fell instantly in love with her. I didn’t really get to see her. They held her up but whisked her away. They brought her into the recovery room in the incubator, but I couldn’t see as my bed was too high and I couldn’t really move. I didn’t get to see her until the following day when I was in a wheelchair going to the NICU.

It was a difficult time trying to bond with Lydia at first. She seemed so frail, looked like a hairy little monkey, and definitely wasn't supposed to be here yet. Now I am enamoured with this little girl. She is just the cutest little thing and I love her to bits.

There are nurses in the NICU that literally saved Lydia's life, and saved mine. Alethia showed me compassion beyond belief. She was the first nurse that I saw in the NICU. I know they go through compassion training, and I don't remember exactly what she said. What I promise you is that she saved my sanity and my life from a lifetime of guilt. Tracey was our favourite. Always helping us to be great first-time parents, and explaining what was going on with Lydia.

Sigh. There are so many more things to share. They'll come to me and I'll add more as time comes.

2/26/2010

The worrying lessens with time. I'm not really a worrier when it comes to Lydia's development which is surprising seeing that there's a lot to worry about. Of course, a lot of that is because she's doing well and is on track developmentally for her adjusted age.

We're not sure if we're having another baby. It's a really difficult decision to make. One that hurts my heart and exhausts me. My fear is that my body will fail us and we'll have another premature baby. Firstly we have to make it past 28 weeks. And even if we do, there's no guarantee that we won't have any issues to deal with. Then, I'm almost certain that if I make it past 28 weeks, there'll be weeks and weeks of bedrest. Which means there's not only emotional turmoil about making the decision, there's inevitable stress from the pregnancy itself. And then the financial pressure it would put on us if I was on bedrest.

I feel the odds are stacked against me.

And, although I'm not ready to have a baby, I'm not ready to say I'm not having one either.

So there's where we stand.

The NICU Stay

Ah.  The rollercoaster of the NICU.  We were lucky really.  A few scares, but relatively 'normal' preemie issues.  Now we are waiting it out to see if there are any lingering effects of the prematurity.  But so far we have seemed to escape any feeding issues, breathing issues, immune issues, gross motor skill development issues, and all the rest of it.  Only time will tell how she learns and how she does in the future, but we are hopeful. 

11/2/2008 APGAR scores of 8 and 9, Vented for a few hours, 2lbs 7 oz , 14 inches. NG tube feedings. Bilirubin light for jaundice. CPAP.

11/5/2008 Mag Sulphate. Retractions, desats. Some residuals from feeds.

11/6/2008 Tried to put PICC line in arm and remove from umbilical cord. Heart murmur. Put on meds for Patent Ductus Arteriosis. Put back on bilirubin lights.

11/7/2008 Tried PICC line again. No feeds because of meds for PDA. Off CPAP to nasal cannula. First time she opened her eyes!

11/8/2008 - First time holding Lydia! PDA fixed. Apnea and Bradycardia started.

11/9/2008 - Finally got PICC line in. More As and Bs than usual. Needed stimulation to breathe. Feeds increased to 3cc every 3 hours.

11/10/2008 - Caffeine increased as well as feeds

11/11/2008 - Head scan showed Intraventricular Hemmorhage Level I

11/13/2008 - Back on CPAP due to increased episodes of As and Bs. Feeds increased to 14cc

11/14/2008 - PICC line taken out.

11/19/2008 - Still on CPAP with increased oxygen levels. Testing for infection includes urine, lumbar puncture and blood cultures. Antibiotics started. Feeds stopped.

11/20/2008 - Blood culture showed infection in one arm. Head scan showed bleeding is starting to dissolve.

11/23/2008 - Blood transfusion - anemia.

11/26/2008 - 3lbs 8 oz - Tried nasal cannula again. Heart rate was high. A few bradys.

11/27/2008 - Started bottle feeding. Moved to open crib. Holding temperature.

11/29/2008 - Back on CPAP. Desats in the 40s with As and Bs. No more bottle feeding. Feeding up to 33cc every 3 hours.

11/30/2008 - Another blood transfusion. Urine and blood cultures and lumbar puncture to rule out an infection. Started on antibiotics. IV in scalp :(

12/1/2008 - Back on nasal cannula. Tried to bottle feed again.

12/2/2008 - Necrotizing Enterocolosis scare. Belly distended. Tube used to remove gas. Not feeding, a lot of desatting.

12/6/2008 - Off nasal cannula. Took feeds all day. About an oz every 3 hours.

12/7/2008 - Moved to special care nursery. On demand feeds. Bradys and desats. Back on nasal cannula.

12/11/2008 - Last day in hospital! Feeding anywhere between 1oz - 2oz. Came home on oxygen, apnea monitor, caffeine, iron and multivitamin.

2/8/2009 - Officially off oxygen and caffeine

2/24/2009 - Officially off apnea monitor and iron

Home Health Nurse once a week for 2 months when she first got home

Home Monitoring Clinic (twice during time she was on the monitor)

Retinopathy of Prematurity Clinic (twice. Just normal eye exam at 15 months which showed she is normal)

High Risk Development Clinic (ongoing)

Babynet - Early Intervention (ongoing)

Speech Therapy - started at 15 months (ongoing)