Sunday, February 26, 2012

Walking with God

Today in Bible class, Terry, our preacher, talked about Abraham and Sarah and how we need to learn to walk with God, not run ahead of Him. I feel like this experience is going to be the perfect way to learn patience, because there really is nothing I can do to change things, at least not at this point. Of course I could have just terminated the pregnancy, which is what it seems must have happened to most other cases like Lucy's because there are NO cases that I, my doctor, or my friend Emily, who is a pediatrician, have been able to find so far here in the U.S. Even if they had told us Lucy did have a fatal disease, I couldn't have terminated the pregnancy. Someone on a baby board said that if they had a child outside the womb who was diagnosed with cancer, they wouldn't just put them to sleep, they would do everything they could to help them survive. So why should it be any different for a baby in the womb?

So, back to walking with God. Most of the big mistakes I have made have had to do with grabbing for things that I wanted when it wasn't the right time. I didn't trust God to give me what I needed when the time was right. Now, I have no choice but to wait and trust God. And the weird thing is, it's liberating knowing that I can't do anything to control the situation at this point.

I have seen God working in all of this already, which gives me more peace. Earlier this year I wondered why in the world I had 27 students this year (normally I have 18-22). The surface reason is because of state budget cuts, and unexpected growth in the district, but I knew that there must be some deeper reason for this over abundance of kindergarteners. Now I have my answer! There is a lady who is my compliance teacher, Mrs. Raby, and she is wonderful. She is patient and even-keeled, but strict, and the kids really like her and respect her. She is a hard worker and she very rarely misses work. Now that I have to take half days and whole days at times for doctor's appointments and will have to be gone for at least the last few weeks of school, I know that there will be someone reliable with my school children. And really, for 27 kids, they are one of the least difficult classes I have had since I started teaching. God knows what we need when we need it. Of course, we don't always get to see the proof of that right away, but I thank Him that He let me see how He was working since the school year started! It's such a blessing to serve a God who is not stuck in time and space like we are. Another thing I had started to think about was having to go to Houston/be in Houston for an extended period of time. Today, a friend from church, Laura, offered her parent's house to us if we needed to spend any time in Houston. I didn't even have to ask.

Terry also talked about Hagar, Sarah's maidservant who was impregnated by Abraham by Sarah's suggestion and then later mistreated by Sarah and ran off into the desert. The Angel of the Lord went out and found Hagar and comforted her and told her that she had to go back to Abraham and Sarah and that God would bless her. She didn't ask for God's help, but He knew she needed it.

Well, I think that's all for today. Keep us in your prayers. I will update when I get more news!

Oh, the idea to ask for specific prayer requests came from another CDH blog, but I've read so many I can't remember exactly which one it was. I thought that was a really good idea and as soon as I figure out who has it, I'll give them credit!

Here's a verse for today:
Fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.
(Isaiah 41:10)

Saturday, February 25, 2012

Growth Scan

Yesterday was such a good day. I got to sleep in with my hubby and son Isaac, eat breakfast with my Isaac whose appetite finally came back after two weeks of not feeling so well, go and see Lucy via sonogram, and take my son to his 15 month checkup.

As soon as the doctor started the sonogram she said, "Wow, she's grown!", which of course is music to my ears. She now weighs a whopping 319 grams (an average baby at her gestational age should weigh about 500 grams) and her hernia is the same as before (only stomach up and heart is still not "squished"). We could see her bladder, which they couldn't find at the last sonogram, thinking that probably her kidneys weren't working. Also, I still have a normal amount of amniotic fluid, which to me means her kidneys must still be functioning. My doctor did mention that due to Lucy's two major defects and a chromosomal abnormality, it may be difficult to find a willing surgeon in the area. She said we may be looking at delivering in Houston, where we would have more luck finding someone willing to take a risk on a baby with a genetic disorder. My MRI got rescheduled for the 9th, which is also when I go back to see the pediatric cardiologist. She told me last time there was a 10% chance she was wrong about the tetralogy of fallot, so I'm praying they will be amazed and not see anything abnormal at this sonogram or that it won't be as severe as they thought.

Isaac's appointment went well, also. He has gained a pound and grown almost two inches since December. The doctor didn't sound concerned about him not walking on his own yet, since she had him walk just holding on to a finger and he seems pretty steady. She said he probably isn't walking yet since he waiting until after year and is able to realize the danger involved. Ironically, last night he walked almost across the room several times, much more than he's tried ever! It's like he was waiting for the doctor to tell him he should be walking. My silly boy!

So, here are some things to pray for, if you will:

1. Lucy's condition to stay stable.
2. For her growth to continue.
3. For me to be able to carry the pregnancy as close to term as possible to give her a chance to grow (with this Trisomy, I will most likely deliver at 35-36 weeks).
4. For the doctor's to not see anything (or at least for it not to be as severe as they thought) at the cardio sonogram on the 9th).
5. That they would see plenty of lung tissue at the MRI on the 9th.

Thank you so much for your prayers and support!

Here's a verse for today:
2 Peter 3:9
The Lord is not slow in keeping his promise, as some understand slowness. Instead he is patient with you, not wanting anyone to perish, but everyone to come to repentance.

Wednesday, February 15, 2012

Updates - Good and Bad News and Some Hope!

I should have been updating more often, but I just haven't had the time.

On February 6th, my husband and I went back to Dr. Rodriguez, the perinatologist and she did another ultrasound. Dr. Trimmer, her associate also took a look at everything. He said he didn't see anything new other than perhaps a tad of scoliosis (which at this point is like telling me she has a paper cut!) and that he was pretty convinced the kidneys were not working. There seems to be limited blood flow around the kidneys and he couldn't find the bladder. Thankfully, at the last two or three ultrasounds I know for sure they were seeing the bladder, so I'm hoping that little Lucy had just recently emptied hers and that's why he couldn't see it. He looked at the heart for a while and told us it looked fine, just displaced. Also, the stomach is still the only organ they can see in the chest cavity. We were able to see diaphragm on the right side for sure! So, at least we know there is tissue there for them to work with.

On February 9th, I went to Dallas. to see Dr. Kao, the pediatric cardiologist. Her tech looked at the heart for a long time and then I met with Dr. Kao. After getting such a positive outlook from Dr. Trimmer, I was really hoping for the best, but she said Lucy has Tetralogy of Fallot, which involved four different problems with the heart, the main being a hole between two of the chambers which allows non-oxygenated blood to mix with oxygenated blood. She said that sometime soon after birth she could require a shunt to send more oxygenated blood to the lungs, or she might be ok without it, but that a full repair would be done at 6 months. Wow, another major issue.

The next morning I had a call from Dr. Rodriguez asking me to come in the same day at 1:00. I left school early and headed over. Since it was such short notice I had to go alone, but sometimes it seems easier to get bad news that way. I definitely cry less when people aren't being overly nice to me, so I figured it would be fine to go. I could have waited until Monday, but facing a weekend of wondering what the amnio results were was unthinkable. So, I headed in. Dr. Rodriguez told me we definitely had a little girl!!! Then she said she had to get out textbooks and go online and research because she couldn't remember all of what was involved with my baby girl's diagnosis. She has Mosaic Trisomy 16, which is extremely rare. Full Trisomy 16 is the number 1 cause of 1st trimester miscarriages and is very incompatible with life. The Mosaic form, on the other hand, can produce children with little or no major problems. Lucy, unfortunately, has most of the major problems that can come with this Mosaic. Dr. Rodriguez said it was like Lucy read the chapter because she has all of the symptoms: IUGR, thick placenta, CDH, tetralogy of fallot, and kidney abnormalities. She may also have an imperforate anus, which we won't find out about until birth (please pray that she doesn't!). She doesn't seem to have club feet at this point, which is another symptom.

So, in short, Lucy has several major issues that we are going to face at birth. Also, we will most likely be delivery mid- to late May instead of June 23rd because of the abnormal placenta. I also have a 1 in 4 chance of developing pre-eclampsia. Despite all of this, I really couldn't have been happier to have heard her diagnosis of Mosaic Trisomy 16. It means there is still hope for our little Lucy. If they had told us Trisomy 18 or 13, we would have known that we could for sure expect her death sometime soon before or after birth, but with this diagnosis, we will just have to wait and see, keep praying and keep hoping!

I will start to go in to get growth scans every two weeks, which I wish there wasn't a reason for, but since I have to do it, I must say it will be nice to see my little one so often. Please keep us in your prayers!

Here's my verse for this post:

Romans 5:3-5
"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us."

Friday, February 3, 2012

First diagnosis

The first time I went in to the doctor, I should have been around 8 weeks along. The baby measured 6 weeks, but they said it was probably just because I was off on my dates. Two weeks seemed a little unreasonable to me, but I decided it was probably nothing. Over Christmas break, we had a sono done in Peru when I was 14 weeks. The baby was measuring a little less than 13 weeks. Once again, it seemed strange to me that the baby was measuring so small. Everything else seemed to be in place, so I stopped thinking about it. She also told us she was 99% sure it was a boy.

This past Thursday we had our 20 week anatomy scan. The baby was measuring 2 weeks behind and the ultrasound tech said the bowels were bright, which wasn't normal, and she couldn't get a good look at the heart, and I had placenta previa, so they would probably also send me to a specialist. My doctor also mentioned that there seemed to possibly be a clot in the placenta, but nothing else. We prayed and talked about this and hoped for the best. Yesterday I had my level 2 sono with the specialist, Dr. Rodriguez. She was very kind, and very quiet for much of the ultrasound. She asked if I would prefer for her to tell me what she was seeing or just wait till the end. I asked her to go ahead and explain and she said that the baby seemed to have a congenital diaphragmatic hernia, basically a hole in the diaphragm which allows the organs from the abdomen to move up into the chest cavity. She could only see the stomach in the chest cavity for sure, but said the bowels would probably move up at some point, further compressing the heart and lungs. She said that some children live until birth and have successful surgeries and survive with somewhat normal lives, but that it was a really tough diagnosis. Also, the baby has one dialated kidney, echogenic bowels (bright bowels, sometimes an indicator of Downs Syndrome), and of course the baby is really tiny, measuring at least two weeks behind. I agreed to have an amnio done, which was somewhat terrifying and painful, though I'm not sure if it was really that physically painful or it just seemed to be since I was thinking about what she was doing. My sweet cousin, Sarah, took the afternoon off from watching kids to come with me since my husband had to work, and she was very kind and supportive of me.

I should know something about the amnio results by Monday and I have another sonogram on Monday to look for other defects. Thursday we go to see a pediatric cardiologist to make sure that heart is ok.

So far, it all feels quite unreal, especially since just today little missy (they said it was probably a girl yesterday, but she still had her legs clamped shut) decided today would be the day to turn flips in my belly. Last night I had a nightmare that there were all kinds of tiny babies growing in my belly, all with some sort of problem. I woke up relieved and then I remembered that I didn't have lots of babies, but there was one little sweetheart in there who has a very uncertain future at this point.

I realized that I have very rarely in my life experienced suffering that was not the result of the consequences of my bad behavior. For that I can truly say that I have been blessed. I also cannot feel sad when I look at my husband who loves and takes care of me and Isaac, and when I look at my little boy, so happy and opinionated and full of life. What a blessing that he was born with no problems and has been so healthy. It's easy to take that for granted. Emilio reminded me last night that this baby is not really our baby, but God's baby, and if He wants her to stay with us, she will, and if He wants her with Him, He will take her when the time is right. I pray that God will be with us through this experience and strengthen our faith. We know that He is in control and that He doesn't make mistakes so we are ready to face this challenge head on.

I keep thinking about these two verses:
Job 1:20-21
20 At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship 21 and said:
“Naked I came from my mother’s womb,
and naked I will depart.[c]
The LORD gave and the LORD has taken away;
may the name of the LORD be praised.”

and Psalm 139: 13-16
" For you did form my inward parts. You did knit me together in my mother's womb. I praise you for because I am fearfully and wonderfully made. Your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."