Our Girls

Just another WordPress.com weblog

Eliana’s Story August 29, 2012

Filed under: Uncategorized — jhautau @ 6:00 pm

Here is Eliana’s story. I copied it from a Word document.  Enjoy =)

Eliana’s Story

I prayed for this child, and the Lord has granted me what I asked of Him. – 1 Samuel 1:27

Pregnant

When I found out I was pregnant, I went to the doctor. I knew I wasn’t 10 weeks yet, but I had plans to go to Charlotte for a month in December for my mom’s brain surgery. I went for the initial appointment and they said they wanted me to get an early dating ultrasound since I was going out of town for so long and I would miss the normal dating ultrasound. They estimated I was 8 weeks pregnant based on my last period, which is usually very accurate.  When I had the dating ultrasound the doctor heard and saw the heartbeat. But, he said the baby was too small and he did not have a good feeling about the baby. He thought the baby could only be the size of a 5 week old baby and they felt sure I was around 8 weeks. So, he wanted me to come back the following week to check the baby and see if there was still a heartbeat and if the baby had grown. I explained I was going to Charlotte for my mom’s brain surgery and I would be gone a month but if it was really important I could try to stay for the appointment. He said to go ahead and go, but have a doctor in mind in Charlotte because I was very likely to miscarry the baby. He said to come back in right after I got back from the trip if I didn’t show any signs of miscarrying while I was gone.

So, I went to Charlotte for a month. I was really sick the entire time, which I have been with all my pregnancies, so I assumed that was a good sign.  I made it through the month without any signs of miscarrying and I went to the doctor when I got back to Lexington. He did another ultrasound and said the baby looked great! The baby had grown a lot since the previous ultrasound and as far as he could tell at this early stage, the baby was healthy. The baby was the right size for a 12 week old. His words were “today is a good day.”

First Trimester Screening

Before I left I did the first trimester screening blood work which measures for chromosome abnormalities, spina bifida, and other problems.

A few days later I got a call saying the blood work had come back abnormal. It said the screening showed elevated levels for spina bifida. She said it probabIy wasn’t a big deal but it showed I had a 1 in 390 chance of the baby having spina bifida. I needed to come back in to do a dating ultrasound to make sure my due date was correct. If your due date is off by even a week the blood test can come back wrong. This really didn’t make any sense to me so I researched it on the internet. I found tons of cases of women who had abnormal blood test results for spina bifida and it didn’t mean anything. I found all kinds of articles about this pre-screening test and found that most countries don’t do this test anymore because it has so many false positives and so many women panic for no reason. So, I felt pretty good after reading online.

Ultrasound

I went for my ultrasound and the genetic counselor called me back to her office to discuss the blood work results. She explained what spina bifida was and explained that if my due date was off by even a week, the blood results won’t be accurate. After talking to her I discovered the doctor ordered the test for the wrong week of the pregnancy so I definitely did the test at the wrong time. She said I probably didn’t need the ultrasound since it was clear the results were wrong but since I was already there I could do it.

I went in to the ultrasound relaxed, knowing the blood test results were wrong. We watched the baby who as you can see by the ultrasound, looked like a normal baby sucking her thumb. The ultrasound tech did all the measurements and the baby looked great.  Her name was Emily and we bonded by talking about our children. She was pregnant and due in May. I was pregnant and due in July. She said everything looked great with the baby. She didn’t see any signs of spina bifida and everything else looked normal. She mentioned that my placenta looked larger than normal but she said they all vary in size so it was no big deal. She also said the baby measured four days behind in size, which meant my due date must be off a few days. She left the room to get the doctor’s approval of the ultrasound and give me the approval to leave.

After a few minutes Emily came back in with a group of people including the high risk doctor, Dr. Obrien. After introducing himself, Dr. Obrien asked an immediate question: “Have you been really sick with this pregnancy?” I responded “yes, I have lost 15 pounds but I have lost about 10 with my other pregnancies so it didn’t seem that different.” He told me we were going to talk about placentas today, which of course I knew nothing about.

I forgot to note earlier that Ted did not go to this appointment with me because we didn’t think it was any big deal and he was watching the girls at the pool while he coached. Needless to say, I never went to another ultrasound alone!

Partial Mole Placenta

Dr. O’Brien explained that I had a “partial mole placenta.” This meant that my placenta was double the size it should be and ten times thicker than it should be. It was also filled with black molar holes. It looked like one of those paint sponges with the large holes in it. The entire placenta was filled with these molar holes, minus two small parts on each end which looked healthy. The partial mole placenta will continue to grow larger and thicker than a normal placenta. Partial moles are formed when two sperm get to the egg at the exact same time. The placenta ends up with an entire extra set of chromosomes so it my placenta had 69 chromosomes instead of the normal 46. It’s very rare.

Dr. O’Brien said he knew after looking at my blood work that something was wrong. I had ten times the amount of hormones as a normal pregnant woman. This was causing me to be very sick and to continue to be sick even though the first trimester was over. This nausea lasted for the entire pregnancy because of the heightened hormone. Thank God for Zofran!

Scenarios

Dr. O’Brien continued to explain the two scenarios we were looking at.

The first and most likely scenario was that the baby also received an entire extra set of chromosomes since the baby was formed from the placenta that had an extra set of chromosomes. This is called “triploidy” and it is impossible for a baby to survive outside of the womb with triploidy. The baby has so many chromosomes that it continues to get birth defect after birth defect until it cannot function. There was a 95% chance that our baby had triploidy because the baby was formed from the placenta that had an extra set of chromosomes. I asked the doctor if the baby could look as normal as our baby and still have triploidy and he said yes. The only way to tell if the baby had triploidy was to do an amniocentesis.

The second and least likely scenario was that our baby was in the 5% and did not receive the extra set of chromosomes. This would mean our baby was chromosomally “healthy” which in theory sounded good. The doctor said this scenario worried him more than the first scenario because the baby still had little chance of living and it involved risks for me. Even though the baby did not receive the chromosomes from the bad placenta, the baby would still be receiving all its nourishment from the bad placenta that was not functioning correctly. The baby was already measuring 4 days behind and I was 14 weeks.  It was likely the baby would continue to fall further behind because the baby was not getting enough nourishment from the placenta. He predicted that at each growth ultrasound (which they would do every three weeks if we carried on with the pregnancy) the baby would fall further behind. He also said it was very likely I would get pre-eclampsia very early in the pregnancy and it was unlikely I would be able to carry the baby until 28 weeks. In a normal pregnancy, women with any kind of placenta issue (twins, diabetes, etc) have a higher chance of getting pre-eclampsia between 30-40 weeks. With the partial mole, I was at risk of getting pre-eclampsia between 20-28 weeks. He explained that the bad placenta had been producing toxins in my body all along. Your body can only have so many toxins build up before it will start responding with blood pressure problems, headaches, etc (pre-eclampsia) which can be serious and quickly turn to HELP syndrome .

At 28 weeks a normal baby has a 90% chance of living. He said even if I could make it to 28 weeks, the baby would probably only be developed to the size of a 25 week old baby and would not likely live.

Another risk to me was the molar cells inside the placenta could spread to other parts of my body, most commonly likely my lungs. The cells become a form of cancer once they spread. It is a very treatable form of cancer but I could need chemotherapy for up to a year.

Partial moles are very rare. It is very rare that a partial mole turns in to a normal looking baby, more rare that the baby survives past the first trimester, and even more rare to be 14 weeks pregnant with a healthy looking baby. Most partial mole babies miscarry early in the pregnancy. It is even rarer that the partial mole placenta is present with a chromosomally normal baby.  Our high risk doctor has been practicing for 20 years and said he only sees a partial mole placenta every few years. Of those, he has only had two patients decide to carry on with the pregnancy. His first patient made it to 18 weeks and had so much bleeding the doctors had to deliver the baby. His second patient made it to 28 weeks, got pre-eclampsia and they had to deliver the baby. The baby died. He said we can play the “beat the clock game” but he has tried it twice before and it didn’t work. I was at a high risk for pre-term labor, early bleeding, pre-eclampsia, and a placental abruption; all of which would end the pregnancy early.

As you can imagine, this was a lot of information to digest especially with the shock of being told I had a completely healthy baby to being told our baby had almost no chance of living. I tried my best to remember each detail so I could accurately relay the two scenarios to Ted. I repeated the two scenarios to Dr. O’Brien to make sure I got them correct.

Dr. O’brien assured me he would be there anytime if Ted wanted to talk to him or if either of us had more questions. He was sure we would have questions. He suggested we do the amniocentesis to find out if the baby had triploidy. I agreed to do that the next day, and he left. Emily, the ultrasound tech, stayed with me. She was crying and apologizing. She felt terrible because she told me five minutes before Dr. O’brien came in that we had a completely healthy baby. She said she had been working there 10 years and had never seen a partial mole placenta. She had only read about them.

Amniocentesis

We came back the next day for the amniocentesis. It was very painful, which nobody warned me about. They stick a needle in to your abdominal wall, through the wall of your uterus, and in to the amniotic sac. They draw a sample of the amniotic fluid to test the chromosomes. The placenta was so big they had trouble getting around it with the needle. It took them awhile to get the needle inserted correctly.

They informed us that the results would be back within 7-10 days. 7-10 days!??! We were shocked that it took that long for the results. They said there was a FISH test that gave the results within 2-3 days so we would have an idea. The FISH test is 95% accurate.

Further Research

While we were waiting on the amniocentesis results, we researched as much as we could on the internet and got several other opinions. The other high risk doctor’s opinions were consistent with Dr. O’Brien’s’ and everything we found on the internet was also consistent.  There were very few documented cases of babies with a partial mole placenta living, even without triploidy.

FISH Results

 The FISH results came back “normal female chromosomes.” First, this meant we had a daughter. We now knew the sex of our baby. It also meant she fell in to the 5%. She had normal chromosomes. God was good.

Meeting with Dr. O’Brien

Ted was leaving for SEC’s in a few days and we needed to make a decision whether we were going to continue with the pregnancy.  We met with Dr. O’Brien again since we now knew which scenario we were looking at. We both asked questions. Actually, I really can’t remember many of the questions we asked now. I do remember asking him what percent chance our daughter had of living. He said “less than 10% chance.” Ted, who had done a ton of internet research, said “I think that’s being pretty generous.” Dr. O’Brien said “yes, that’s being very generous. More like 5%.” He told us that in this situation with the unlikely chance the baby would survive and the risk to me, any medical professional would fully support any decision that we made (referring to terminating the pregnancy). He let us know he would fully support us with anything we needed. If we wanted to speak to doctors at the Mayo clinic for other opinions, he would contact them. He did say we seemed to be very informed about the partial mole. Ted had researched for hours and pretty much knew everything about it. He suggested that it wasn’t a matter of needing more information; it was a matter of making a decision. He reminded us that there were unknowns that he could not tell us. He could tell us about how a placenta functions, how bad it looks, and the risks to a woman’s health when you have a bad partial mole placenta. But, he couldn’t tell us which part of the placenta would grow. He knew the placenta would grow, a lot. It was already large. He didn’t know which part would grow; the bad or good. At this point in the pregnancy, the placenta was almost all bad. It was likely the bad placenta would continue to grow, but it was an unknown. He also didn’t know how well the baby would grow from the placenta. She was already 4 days behind at 14 weeks. Growth ultrasounds could only be done every 3 weeks. They expected to see the baby go from 4 days behind, to a week behind, to two weeks behind, etc. But it was unknown and these unknowns would not be known by any other doctor. More opinions would not help us with the information Dr. O’Brien did not know. The unknowns would only become “knowns” if we decided to continue on with the pregnancy.

I wanted to know what the scenarios would be if we carried on with the pregnancy. There were several scenarios that resulted in me delivering (by labor) a stillborn baby. Another scenario was that I get sick and they have to deliver the baby (by either labor or c-section).  Another scenario was the baby got too far behind in growth and had to be delivered. Dr. O’Brien insisted that if we chose to carry on with the pregnancy, I would be very closely monitored. I would be checked twice a week for pre-eclampsia and the baby would have a growth ultrasound every three weeks to measure progress.

Decision

Immediately after the appointment we drove to Ted’s SEC competition in Knoxville. Our heads were spinning and we really didn’t know what to do. It sounded like we were given two scenarios: your baby definitely dies or your baby most likely dies and you get very sick.

But, we just couldn’t imagine ending the pregnancy when I was completely healthy and the baby was completely healthy.  Plus, there were unknowns. And these so called “unknowns” were an opportunity for God to intervene.  Dr. O’Brien made it clear if I was going to continue on with the pregnancy, the baby and I would be very closely monitored. So we decided to carry on. From here it became a waiting game. Dr. O’Brien described it as waiting to see what is going to tip the scale. What will make them have to deliver? The baby’s lack of growth? My pre-eclampsia? Placental abruption?  We waited on the Lord. And it was not easy.

Monitoring

 I was given all the warning signs of early pre-eclampsia/HELP syndrome and told to take my blood pressure daily at home. By now I was about 18 weeks pregnant and they thought I would get sick sooner (around 20 weeks) rather than later (around 28 weeks) because of how much bad placenta I had compared to good.

The first growth ultrasound was around 20 weeks. The baby fell farther behind and was a week behind in size now but was still healthy and was well above the “growth restriction” line where they would worry about permanent problems from lack of nutrition. I was also still healthy and showing no signs of pre-eclampsia. God was good.

Appendicitis

Yes, that heading says appendicitis. And it’s not a typo. When I was 22 weeks pregnant, Ted went to his zone competition in Bloomington, IN. I was home alone but had been healthy so it was not a huge deal. One afternoon while he was gone I started having pain in my right side. My first thought was it was the start of pre-eclampsia. Pain under my ribs in my right side was a sign to watch for. It was a sign of the liver not functioning well and possibly failing. I suffered through the pain for awhile until I got the girls to bed. Later that night the pain got worse and I started throwing up. I called a friend to come over and stay with them because I needed to go to triage. After several hours, I was told I had appendicitis and I would be having an emergency appendectomy ASAP. This was not related to my placenta at all, it was completely random. Ted drove through the night to get there in time for my surgery the following morning. The surgeons were all afraid to operate on me because a) I was pregnant, b) I was a high risk pregnancy, and c) I was a partial mole pregnancy.  I was at a small risk of a thyroid storm (thyroid bursting) because of the partial mole placenta and at risk for other normal baby complications when you undergo anesthesia during pregnancy.  But I had a great surgeon and the surgery was smooth without any complications. The baby did great with the anesthesia. God was good.

The following day while I was still in the hospital recovering from surgery, the high risk doctor came by with one of his high risk fellows, Dr. Mast. Dr. O’Brien had assigned Dr. Mast to research the partial mole placenta. In her research, she found another possible diagnosis. She found something called Mesenchymal Dysplagia. It was something rarer than a partial mole and you cannot tell the difference in a partial mole and Mesenchymal Dysplagia until the placenta is sent off for pathology after the baby is delivered. You can’t even tell the difference when looking at the two placentas. The placenta would still act the same, grow very large, would still not function correctly or nourish the baby correctly, and I would still be at risk for pre-eclampsia, etc. The major difference is Mesenchymal Dysplagia usually does not have cells that travel.  With this diagnosis, I would not have much chance of having molar cells spread and possibly turn in to cancer. So, this diagnosis would be better for me in the long term, but would not change anything about the pregnancy.

I went home the next day.

Ultrasounds

                        At 23 weeks we had our next growth ultrasound. The baby fell behind another week. She was now 2 weeks behind and seemed to be following exactly what the doctors predicted. She was still in a “safe” size percentage but was quickly falling behind. Besides recovering from the appendicitis, I was still healthy and showing no signs of pre-eclampsia or bleeding problems.

At 26 weeks we went back for another growth ultrasound. We were both dreading the news she had fallen behind another week. To our surprise, the baby stayed at two weeks behind and did not fall further behind. She actually “caught up” in size and measured a week and half behind but all of that is relative because the measurements can vary. Either way, she definitely did not fall behind! Two weeks behind in size at 26 weeks was not bad. It was still considered normal. The good placenta also looked bigger. We were happy. God was good.

Above is a profile view of our little girl. The placenta is at the top, it looks like it is pressed against her face.

All I could think about was making it to 28 weeks. Even if the baby was not the size of a 28 week baby, I kept thinking at least the baby will have a chance of living! 28 weeks came and went, without any signs of me being sick or the baby having trouble. Praise God!

The next growth ultrasound at 29 weeks was also good. The baby remained about two weeks behind and was about 2.5 lbs. It is amazing how your perspective changes. With our other babies we thought 7-8 lbs was a normal baby and we would have worried about anything less. With this baby, we were celebrating 2.5 lbs. I think I actually said “that’s pretty big!” The good placenta also looked like it had grown, which was great! Here is a 3D picture of our little girl’s face. The white blob to the right of her face is her placenta. It was often difficult for them to get pictures of her because her placenta was so large. She was always “snuggling” with the placenta when we saw her. Snuggling may be an affectionate name for it; it was probably more like being squished by her placenta.

At this point, the doctors were planning on having a live birth. They started warning me about watching for a placental abruption, contractions, etc. I also started going to the doctor three times a week for monitoring because it was “crunch time” according to the high risk doctors. I was getting stress tests for the baby twice a week starting at 27 weeks. The doctors said the baby may start showing signs of stress from the bad placenta so they wanted to monitor her very closely.

The weeks continued to go by. Each week I was pregnant was another milestone. We became very good friends with the high risk docs. We got to see our baby more often than our other two pregnancies combined. The doctor said if I somehow made it to 37 weeks, then it would be “game over.” 37 weeks is considered “full term” and even though the baby was measuring the size of a 35 week old, it was not worth risking my health anymore.  We started having growth ultrasounds every two weeks.

Around 35 weeks we had a growth ultrasound and we were surprised when the baby fell behind another week. She had been holding strong at two weeks behind. The doctors said during the last few weeks there is an extreme demand on the placenta for growth of the baby. The bad placenta was not able to keep up. But, the baby was still growing and still above the “growth restriction line” so they felt comfortable leaving her for now and monitoring her closely on the stress tests for the next two weeks. She weighed 4 lbs. Of course, give or take a pound with the ultrasound.

I was in and out of the hospital several times between 32-37 weeks. Thankfully, I didn’t have pre-eclampsia or anything serious. I was told to come in with any consistent contractions because it could be a sign of a placental abruption and they wanted to watch the baby and the placenta closely. I went in around 35 weeks and the high risk doctor said if she found anything wrong at all, she would deliver the baby that night. I had already had the not so great growth ultrasound, so they were ready. She did a stress test on the baby; everything was good. She did a fluid check around the baby; everything was good. She checked my blood pressure; good. She checked the growth of the baby; baby had not fallen any further behind in growth. The contractions slowed down and she let me go.

At 36 weeks the doctors planned for me to be induced when I was exactly 37 weeks. They explained that it was not likely that the baby would tolerate labor with the bad placenta. They said a few hours of contractions would probably be too much stress on the placenta and the baby since the placenta is bad and the baby is small. Dr. O’Brien said it was worth trying. He said they would carefully monitor her heart rate and if she showed any signs of stress, they could quickly do a c-section.

The doctors also prepared us that they were delivering her early and she was small. It was likely she would spend some time in the NICU for regular preemie baby problems like regulating body temperature, regulating blood sugar, etc. They estimated she would weigh about 5 lbs when she was born.

We went to the hospital on Thursday, June 28th to be induced at 8:00 am. The induction went very smooth. The baby tolerated labor well and only showed a few signs of stress towards the end, which is normal for any baby.

Eliana Lynn Hautau was born via vaginal delivery at 11:08pm and weighed 5 lbs 15 oz. Her name means “God has answered our prayers.”

There were 10 doctors/medical professionals in the room when I delivered. Not to see me or the baby, but to see the placenta. Thankfully, the placenta delivered on its own a few minutes after Eliana. It was bigger than she was and hurt more to deliver than she did. The placenta weighed 3.5 lbs and the doctors placed it on a table after it was delivered. The doctors took pictures with their cell phones and examined it. It was huge. You could see the big white spot in the middle of the placenta. This was the original placenta that was all bad. It had no blood flowing through it and it was hard as bone. It was clear by looking at the placenta that the good part grew and the bad part stayed the same size. I would include a photo of that too, but it’s not for the weak stomach.

Eliana was immediately placed on my chest for “kangaroo care.” To be safe, they had two pediatricians come check her out in our room. Everyone said she looked great. She immediately breastfed well and didn’t have trouble regulating her body temperature. She got to stay in our room the entire time in the hospital and went home when we did. As far as we know, she is a healthy baby.

The placenta was sent off for diagnosis. It came back as “Mesenchymal Dysplagia”. I am still having my blood monitored once a month to make sure nothing spreads, but it is very unlikely with that diagnosis that anything would spread to cancer. After receiving the diagnosis they mentioned a few things that Eliana could’ve gotten from this placenta, all of which they had already checked her for and she did not show any signs of. The most important of these was Beckwith Weiderman syndrome. This would be very obvious. She would have very large features, particularly her tongue, which would cause her trouble with eating. She does have an unusually large belly button, but they think this is just something she was born with, not a sign of Beckwith Weiderman. Mesenchymal Dysplagia is extremely rare, only 72 reported cases ever. There are so few reported cases partly due to the fact it is very rare. It is also probably due to the fact that it looks exactly like a partial mole and probably gets misdiagnosed.

Eliana is an easy going, sweet little girl. I guess she had to be to put up with that big placenta for 9 months. We think she is pretty cute too, but we are slightly biased.

Amazing Grace

Throughout the pregnancy, we knew God heard our prayers asking Him to save our daughter. We knew God could answer our prayers and miraculously nourish our little girl. But, we also knew God might answer our prayers with “no.” Romans 8:28 says “in ALL things God works for the good of those who love him, who have been called according to his purpose.” Although it would’ve been heartbreaking to lose our little girl, Ted and I agreed that we would continue to glorify God no matter the outcome. If we praise God when life is good, why wouldn’t we when life is bad? We knew that God already knew the outcome. If we did lose our little girl, we were confident God had a bigger and better plan, although it would be very hard to see at the time. Romans 8:28 says all things WORK TOGETHER for good, not all things ARE good.

The day I found out about my bad placenta was one of the worst days of my life. But God was still in control even when we felt completely out of control. The reality was, we were out of control. And that was a good thing. There was nothing the doctors could do to fix my placenta. There was nothing they could do to nourish the baby. We just had to wait and see what God’s plan was for our little girl. We learned to completely trust in the Lord with our daughter’s life, which we should have been doing all along. Between the tears, difficult decisions, and waiting, Ted and I felt an underlying peace during the past 9 months. Philippians 4 says “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understand, will guard your hearts and your minds.”

God has been good to us. Even when life was bad, God was good.

We are so thankful for everyone who joined us in praying for Eliana. We are also so thankful for all the high risk doctors at UK who were wonderful. We got so used to going there 3 times a week, we kind of miss them now.

God showed us Amazing Grace by giving us a third daughter. We are forever grateful for the mercy He showed us and Eliana. We pray we will be able to use her story to share the love of God with others. We pray that Eliana’s life will be a witness to Him with everything she does.

Advertisements
 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s