Flashback: Labor, delivery, and the first week

This is the final post of a series about my pregnancy with Lilly. I hope this has answered some of the many, many questions I get about it.

Lilly was scheduled to be induced at 11:00 a.m. on Sunday, July 4, 2010. (Her due date of June 17 was well past.) I was dreading that so Lilly apparently took pity on me. At 3:39 a.m. I suddenly jolted awake with a contraction. I waited to be sure what that was and then when I felt the next one (6 minutes later) I jumped up and told my husband we were leaving and we'd call the midwife on the way.

I know that is not the norm - you're supposed to stay home, time contractions and all. But my labor and delivery of my son was only about 3.5 hours total and so my midwife was concerned about us all making it in time to the hospital for this one.

Thankfully there was no traffic and we made the usually 55 minute drive in record time. My contractions were amazingly manageable. (I credit drinking red raspberry tea to this.) We got to use "stork parking" at the hospital. But still my husband had to go back outside to look at our license plate to fill out the form. Then a walk to another floor. At check in there I had to answer a bunch of questions and sign a form. (So much different than the birthing center where you can just go in and have your baby!) Next we went to our room. And then another nurse started asking me lots of questions. I had to keep stopping to breathe through a contraction and admit I was feeling rather irritated. Why hadn't they asked me those questions in advance? This seemed to be the worst timing.

Then my midwife M. rushed in thankful that she made it in time. I was still feeling OK overall and didn't think I was ready yet. But then a few minutes later - wham. Lilly was delivered naturally in the breech position.

When Lilly was first born she was pale and so still. They laid her on me and covered us with a warm blanket. My husband and M. watched with tears in their eyes. M. put her hand on me and said "we'll keep praying and see what happens." Then she and the nurses left us alone with Lilly.

Suddenly, an hour later, Lilly started crying. Excitement filled the place and things became more normal. Lilly was taken to be cleaned up and weighed and all those normal baby things. She was deemed too small to breastfeed so we got a small bottle. Lilly took it with gusto. Her coloring was great. More joy. The morning sunrise was beautiful and there was so much life in Lilly.

Then a few hours later we were allowed to take Lilly home! Highly unusual to skip the required 24 hour stay. But, since the doctors didn't give her much hope, we were allowed to hurry her home to meet her siblings.

Praise God.

Four days later, a photographer from Now I Lay Me Down To Sleep came to take pictures of Lilly with our family. Beautiful, sweet pictures. This group offers free pictures to families with babies that aren't supposed to live long. Our photographer, who has a special needs son of his own, did such good work that we have hired him to come back. And we look forward to marking Lilly's one-year birthday with another photo shoot. :) If you live in our area I highly recommend Steve Rubin. http://www.steverubinphotography.com/

Two days after that, we thought we were going to loose Lilly. That afternoon she suddenly started having either seizures or apnea. Her whole body went rigid, her eyes rolled back, and her skin turned blue as she stopped breathing. Then after what seemed like eternity she would gasp and start breathing. Her skin was a ghastly color. This happened at least 6 times. My husband had to blow on her nose and mouth to get her to start breathing during a couple of the episodes. We sent out a frantic prayer request. Then about 30 minutes after that, the episodes stopped. And she's never had one since.

Lilly was born on Independence Day and she's proved to be our Little Firecraker!

Flashback: Countdown to the birth

This is part of a series on my pregnancy with Lilly.

Lilly continued to insist on staying in the breech position in my womb. It amused me that she was staying in what they called "Frank breech position." (Those that know us will see the humor in that.) My midwife M. said this was the best breech position for delivery. M. had gotten permission from the doctors to let me try and deliver naturally, even though Lilly was breech. (It was only because she was Trisomy 18, and not expected to live, that this was going to be allowed.)

But I still tried to get Lilly to turn into the right position. I swam, I used moxi sticks, I did all the hanging upside down exercises. Lilly was sneaky from the beginning though. I would often feel her turn as I did these things. Then a bit later she'd flip back into breech position. (I do think that my having a bad diastis in my stomach that had not healed after my son's birth, contributed to this, because my stomach muscles were so stretched. I still have quite a diastis now as I type this, but it is slowly healing. And it should - I'm doing about 1000 of the exercises for it a day. Whew!)

Not only was Lilly being stubborn about the breech position, but she decided that she didn't want to be born on her due date of June 17. Not only did she not like that date, but she didn't like ANY date in June.

Finally on July 1st I had another ultrasound. It showed Lilly was a little over 5 pounds. YAY! This was a praise God moment! We went to see my midwife next and get a stress test. It showed things were still fine with Lilly's heart.

By this point, time was standing still. Every day was literally dragging as we just wanted for Lilly to be born so we could face what was to come. I had never expected to have a July baby! But we didn't want to induce, until it became medically necessary. I was afraid that Lilly would die at birth. And then if I had had her induced, and she died right after being born, I would have felt guilty that I hastened her death. So we put it off.

Soon I was scheduled to be induced at 11:00 a.m. on that coming Sunday, July 4. But Lilly would have other plans . . . .

Flashback: The amnio and the results

This is part of a series on my pregnancy with Lilly.

May 25, 2010 was the day of the amnio. M., my midwife, met us at the hospital for it, to be there for me. First I had an ultrasound. Then the doctor came in and stuck the needle into my belly. He pulled out at least 4 vials of amniotic fluid. I was surprised that it didn't hurt.

Lilly was still breech and M. gave me a bunch of exercises to do to try and turn her.

By this point, I could finally feel some of Lilly's movements outside my belly. (It is really strange being 8 months pregnant and not feeling your baby outside your belly with your hands.)

The genetic counselor called 2 days later to say that the tests confirmed that my baby had Trisomy 18. (An extra 18th chromosome in every cell of her body.) And that her lungs were not fully developed. (That part wasn't abnormal.)

Even though it was horrible news, I was relieved to at least know something for sure. Now I wouldn't have to waste energy wondering. Also, upon this news the doctors backed off. I would no longer have to worry about Lilly being taken from me upon birth so that she could be put through tests. I guess statistics morbidly worked on our favor this time.

I want to note that during my pregnancy, I rarely looked at Trisomy 18 information or discussions online. I had a basic understanding of what it was and knew the grim statistics. I tried reading some stories but they were all too upsetting. What's interesting to me now, is that I have been able to find a lot of encouraging stories about Trisomy 18 children living. But before Lilly was born, I didn't really see any.

A week and a half or so later, the genetic counselor called back. They had done a more indepth testing and had reconfirmed full Trisomy 18. She said it was just one of those things. There weren't problems with my husband and I. This kind of thing randomly happens to parents of all ages. They don't know why.

Flashback: The amnio decision

This is part of a series on my pregnancy with Lilly.

Our next step was to have a meeting with doctors and nurses at the hospital that Lilly would be delivered at. It seemed that whenever anyone talked to us about Lilly's probable dying, she just danced all the harder in my womb. I had a hard time listening to them as I was imagining her saying "Nah-nah-nah-nah-nah! I'm just fine!"

After everything was said at the meetings, I agreed to have an amnio done. (Up until this point I refused because I didn't see the point and don't considered them to be 100% safe.) However, shortly before this, another mother from our church e-mailed me to share her family's own painful story of their Trisomy 18 baby, which died a couple weeks before it's due date. She had had an amnio. I think knowing this, and hearing her story, helped me to finally open up to doing so. My husband continued to say he supported whatever I wanted to do.)

So, an amnio was scheduled.

Flashback: The 3 pound baby

This is part of a series on my pregnancy with Lilly.

On May 10, 2010 I had another ultrasound. I remember really liking that tech. She pointed out all sorts of positive things about my baby. Such as the baby was "practicing breathing," opening her eyes, and performing "fine motor skills." In fact the baby passed a test to check physical movements with a score of 8 out of 8.

Lilly was a wee little thing - at this point she weighed only 3 lbs. (She was due June 17.) She was also in breech position, which in this state means c-section delivery.

When the doctor came in, he brought the genetic counselor. He was concerned. He said Lilly still had the main signs of Trisomy 13 or 18: low weight, heart problems, and clenched hands. Also, excessive fluid in the brain.

The doctor urged me to do genetics testing so they could make better recommendations. He felt that Lilly may be stillborn if she went much longer.

I said that the baby was just so active, that I was having a hard time accepting that there was anything wrong. The doctor acknowledged that Lilly was active but said she probably wouldn't be able to survive on her own, outside the womb. (I know many with Trisomy 18 children were told they were "incompatible with life." My doctors never used that phrase. But it did seem hopeless.)

My midwife M. said we needed to come up with a clear birth plan.

I started feeling like I was walking around with a ticking bomb inside me.

Flashback: This baby is too small!!

Part of a continuing series on my pregnancy with Lilly.

Shortly after that 2nd heart ultrasound, I went to an appointment with my midwife M. (I was about 35 weeks.) I asked her if she could give me a guess to my baby's size and weight. She began pressing on my belly. Then her face said it all. She did try to keep composed but I caught that flash across her face. She said the baby was small. VERY small. Yes my belly was big, but most of it was fluid. She could feel Lilly's head and rear and they were just so very small.

M. wanted another ultrasound scheduled right away and went and called the doctor herself. He must have been much more concerned that he let on to my husband and I, because he told her that he had been thinking about me and wanting to follow up to see what was happening. (I had been given an appointment for genetic counseling but cancelled it figuring it wasn't necessary since it wouldn't change anything. But because I had cancelled that appointment, I had "fallen through the cracks.")

M. got an appointment scheduled for me for a few days later. She said we needed as much information about the baby as we could, so we could have a plan. Or else I wouldn't have any control in the hospital once the baby was born.

I felt like I was in shock when I left. This was the point when it hit me that YES something was really wrong. Before I just told myself that ultrasounds aren't 100% conclusive and that all this would turn out OK. (I always try to think positively.) I called my husband from the parking lot and remember crying for the first time. This baby was too small.

Flashback: The 2nd heart ultrasound

Part of a series on my pregnancy with Lilly.

April 30, 2010 was the date of the 2nd heart ultrasound. They confirmed that Lilly's VSD was still there and about the same. The doctor said it was in a place that it would not close up on its own. However, the heartbeat was strong and the blood flow good.

The doctor said the VSD repair sugery had a high success rate. It would probably occur when our baby was 4-6 months old. Surgery would take about 4 hours with 7-10 days recovery.

Very disappointing news. But we were getting used to the idea. Surgery could fix our baby's heart and then she'd live a long, normal life.

Flashback: The 1st heart ultrasound

Part of a series on my pregnancy with Lilly.

On March 12, 2010 we went to the hospital for an ultrasound with a pediatric heart specialist. We found out that Lilly had a hole in her heart. A ventricular septal defect, or VSD. That was horrible to hear. But we were assured that it was correctable by surgery and the surgery was highly successful. (I could not imagine an infant in surgery.) The baby would be on medications and would probably need the surgery between 4-6 months of age.

We heard from a number of people that they knew babies that had the holes that closed up on their own. So we added that to our prayers for Lilly.

After my midwife got that update, she said I would need to deliver at the hospital, rather than at the birthing center. Though that was a minor thing by now, it was very very disappointing.

A few days later, our pastor and an elder came over to lay hands on me and pray for Lilly.

Flashback: The second ultrasound

This is a continuation in a series of what happened in my pregnancy with Lilly.

My follow-up ultrasound was March 18, 2010. We found out that our baby was a girl. We had a name all ready: "Lillian Eva." (Lillian after my great-grandmother and Eva after my husband's grandmother.) So Lillian Eva was the plan though I reserved the right to change it after birth if she didn't end up looking like a Lillian Eva.

That was the good news. The rest of the news was a mix of good and unsettling.

The doctor saw Lilly's stomach this time, so that meant no blockages. She still had cysts on her brain, though they weren't supposed to effect her. A part of her brain was wider than normal. That could mean a chromosomal problem. Lilly was still keeping her hands clenched and her forefingers hooked over the other fingers, so Trisomy 18 was still suspected. (You can see this in the top ultrasound picture.)

There was a problem with Lilly's heart. The doctor wasn't sure exactly what the problem was so we were referred to a pediatric heart specialist. Yet the heartbeat itself was strong and steady.

Finally, they questioned if my due date was accurate. (My midwife had already pondered that one but decided it was correct.) The baby was so tiny. 8th percentile. (Strange for me to think about because both my other babies were over 8 lbs. at birth.)

Like at the first ultrasound, Lilly was extremely active. The tech even laughed at one point when Lilly started playing with the umbilical cord. That made me feel better.

Still, when we left I felt like I needed a good cry. (I honestly don't remember if I did - I have always had a hard time crying.) Prayers increased.

Flashback: The first ultrasound

For awhile now, I've been wanting to do a series on my pregnancy with Lilly. I often get questions from people asking if I knew Lilly has Trisomy 18 while I was pregnant with her. (Doctors and nurses have asked me this during Lilly's hospitalizations too.) So I thought I'd answer that question. Maybe it will help someone who is pregnant and in the same position, to know the progression of what happened.

I was 17 weeks pregnant when I went for my first ultrasound with Lilly. (January 11, 2010) I was excited because I wanted to see my baby and find out if it was a boy or girl. (I'm a planner so I love that technology can tell us pretty accurately the baby's sex.) Well we didn't find out the baby's sex because the tech said the baby was just too small.

My husband and I enjoyed watching the baby during the ultrasound - it was a very active baby. Even the doctor commented on that when he came in and watched. Ultrasound is an amazing thing!

After the tech was finished, the doctor came in. (I have since decided that's never a good sign for the doctor to come in. With my other two children the tech took the stuff to the doctor, got his OK, and that was it.) There were 4 things this doctor was concerned about:

1) The baby had a spot (cyst) on its brain,
2) the umbilical cord had only 2 arteries instead of 3,
3) he couldn't see the baby's stomach, which might mean blockage in the esophagus, and
4) the baby never unclenched its hands, other than 1 finger (a possible sign of something deadly we'd never heard of - Trisomy 18)

Add those things to my "old" age of 39 and that might mean something was wrong with the baby.

The doctor stressed that he thought everything would be Ok and cleared up at another ultrasound, which I would have in 2 months.

He was also obliged to tell me that under law I still had time for an abortion if I wanted. I found it baffling to think that no matter what you believed about abortion - how could you do it after spending an hour watching your baby turning sommersaults in your womb?

My husband and I left the ultrasound rather emotionally exhausted. It hadn't been what we thought it would be. Have fun watching the baby, get some pictures, find out the sex, and then go home without a worry. Still, we didn't worry too much. We both had heard too many stories of doctors getting things wrong. Yet we did decide to start asking for prayers. Just in case.