Wednesday, December 27, 2006
I thought I may be going into labor on Christmas eve ... was feeling crampy and a little nauseous, but Luke decided to hang out a while longer. Which is good! I want him to be as big as possible. Rog has been amazing. He is so attentive and available for me. I'm so thankful for a partner like him in this.
I have to share with you the coolest blessing we got on Christmas eve. We left my mom's to go home for a few hours and both of us were just feeling so unsettled. Part of it was that Dr. Stefanelli was out of town until the 26th and we really want him to be there when I go into labor. Anyway, we just prayed on the way home for peace and strength and that Luke would wait until Stefanelli was back in town. We got home and within 30 minutes, Dr. Stefanelli's number came across our caller id. I talked with him for about 15 minutes, he said he was back in town and not going anywhere and we got some last minute questions answered. He is just so calm and reassuring. God knew we needed that. What doctor calls to check in on Christmas Eve?? It was awesome.
Monday, November 27, 2006
Our nursery is pretty much done, I even washed all Luke's clothes this weekend and put them in drawers. We have one more birth class this Wednesday (which we've actually really enjoyed ... although the trying out different labor positions last week got us giggling pretty good). In one station, we were supposed to put our hand in ice for 60 seconds, and carry on a conversation with your partner. Then, you switched hands for another 60 seconds, this time concentrating on visualization and breathing. Not a good sign when that didn't help at all =)) Rog said I was a sure candidate for an epidural ;-). Then I told him I'm much better under pressure =))
We met with our pediatrician we've chosen last week, and absolutely loved him. He loves the Lord and is praying for Luke's health. Next week is my last appointment with the OB before I start to go every week. At that point, they start checking to see if you're dilating! Very exciting. I have still been feeling pretty darn good. The hardest part lately is not feeling like I can get full breaths. He's really squishing my diaphragm/lungs. A few weeks before labor, the baby is supposed to "drop" which will help, I've heard.
He's still aerobicizing like crazy and I can't wait to meet this little wiggle-worm!
We had our final appointment with the pediatric cardiologist last week, and he was really happy about how Luke's heart is growing and looking. He basically is leaving it up to Luke, when his first surgery will be. Anywhere between a few weeks to a few months. Our cardiologist is so great, and has already communicated to my OB that he does not want my delivery to be any different if at all possible. I feel like he's really protecting that for us. He doesn't want extra docs in the room, or for baby to be taken right to ICU (which if not communicated, I'm sure would happen). So we're very thankful for that. He'll come by about 6 hours after baby is born, to check how he is doing. But because baby's circulation isn't truly his own for a few days, he doesn't feel like there's any need for him to be in the ICU.
So, along with Luke's heart, please keep that in your prayers, that I will have a safe and normal delivery, and that Luke will get to stay in the room with us!
Thursday, October 19, 2006
Our appointment went well yesterday with the cardiologist. We are still looking at a ventricular defect in Luke's heart (the right one being deficient and the left being functional). The great news about that is the left ventricle in a normal heart should be the dominant one and actually does most of the work. A much scarier scenario would be if the left were deficient.
Dr. Stefanelli starts by telling us that what he's seeing is very, very rare. Like 1 in 10,000,000 rare. Of the 400 diagrams of heart defects they have, he doesn't have one that specifically matches our case. He had to find the closest one and then draw what's different about Luke's heart. The crazy and good part is that the rarity in our case is a positive. A lot of this kind of defect has the aorta and pulmonary artery reversed. In our case, the aorta and PA are in the right spot (the aorta pumping to and from the left ventricle). So, even though this is extremely rare, he made it clear that we shouldn't equate that with complexity or severity. It's actually a bonus in our case, simply because we may not have some of the other complications that go along with the aorta and PA in the wrong places.
So, some things we learned:
- If no other complications arise between now and Luke being born, Luke will be able to wait six months for his first surgery. And his second would be at 3 years. That is definitely what we are praying for right now, that he would be able to wait and only have 2 surgeries. The first surgery is about a six day stay in the hospital and the second at 3 years is about a 9 day stay for recovery and to watch him. I can't imagine trying to keep a 3 year old resting for nine days!!! We're so thankful we'll be at Children's hospital. Dr. Stefanelli said he used to send patients with this kind of defect to have their surgery at Stanford, but he's found children's to be as good, if not better, and much closer!
- There are 3 things he's watching for as Luke's heart grows even more and right now they all look really positive (one thing is an obstruction of the aorta and another is the diameter size of the aorta compared to the diameter of the pulmonary artery — they should be fairly similar in size. If not, they have to basically band the aorta to balance out blood and oxygen flow). If for some reason, these complications arise (and we may not know until Luke is born) he would have to have a surgical fix at about a week old. The Dr. assured us this is a simple and easy procedure with less than 1% risk, but we hate the thought of having to put him in surgery that early. And even though it's a standard procedure, the time in the hospital will be longer, just because he's a newborn. Please pray that he would not have to have that first surgery! In the coming weeks, Dr. Stefanelli will have a fairly good idea if that one will be necessary, but he won't know for sure until Luke is born and they can actually get pictures of his heart (not through me). We are feeling positive, tho, that everything looked really good as of yesterday.
- The other good news we got yesterday is that Luke's heart rhythm is perfect, he's growing great, and there is no sign of fluid or stress on his heart. That's great news because he's doing well and there's no expectation that we would have to deliver him early. He still feels confident that Luke will be able to be delivered naturally, that he'll be able to breast-feed and that this is an isolated problem, with no linkage to anything developmental or chromosomal. Again, positive news!
So, bottom line is that we have a very special kid entering our lives! We'll be able to tell him he's 1 in a million and mean it! We are so thankful for this doctor's office and feel like we're in such good hands.
Dr. Stefanelli already has a surgeon in mind for us up at Children's, so we'll get to meet him before the birth.
What a journey we're on, one that will keep us dependent on the Lord and on our knees. But God is faithful to His promises and we have seen that so clearly these past 2 months. We have felt peace and strength when we least expected it, and He is continuing to unite Rog and I as husband and wife to take on the awesome task of raising this little boy.
Thursday, September 21, 2006
Last month, Luke was diagnosed with atrioventricular septal defect (AVSD), which is basically a "hole in the heart". Of congenital heart defects, this is a fairly common one. Now that the heart is getting bigger, they saw something a bit different this time around on the echocardiogram. They now think the problem with Luke's heart is in the ventricles. His left is considered dominant and right one is really small and not functioning the way it should be. I wish I could explain it better medically, but it's fairly rare and more complex than the original diagnosis. The GREAT news is that our doctor is confident this defect is isolated and not affecting anything else in Luke's development. This kind of defect takes us out of the risk category for other chromosomal issues (like Down Syndrome). The harder news to take was that we originally thought with the AVSD that it was a one-surgery fix. They now think this kind of defect will take at least 2, maybe 3 surgeries to fix. And because this defect is so much less common, there are still some uncertainties. They were faily sure before that Luke would be able to wait until he was 4-6 months old before they did the surgery. Our doc still feels fairly confident that Luke will be able to wait and not have to have surgery earlier than that, but he can't guarantee that. He also still thinks I'll be able to deliver normally with the midwives at St. Joe's, but again, we'll know a lot more at 28 and 32 weeks. So, we again are in the waiting game.
I am so thankful that we know the Lord. I am so thankful for my husband, who I can't imagine going through this without. I also am so thankful that God promises a good plan for our lives, and that in everything to those who believe, He works for the good. We are holding tight to that and trust that God has little Luke in the palm of His hands!
We are also holding on to our doctor's words that although we're in a different boat than a month ago, he doesn't think it's a worse boat. And to be out of the down syndrome scare is a huge blessing.
During the echocardiogram, at one point you could see Luke on his back, with his legs straight up, one leg crossed over the other, just hangin' out. He was saying, "I'm doing great in here guys! What's the big worry?" I think we will learn much about child-like faith in the months to come!
I love you all and would ask for prayers 1) for a miracle, that God would completely heal Luke's heart, that there would be no evidence of any defect and 2) strength and peace for Rog and me ... we are feeling strong, but there are definitely times when the worry/anxiety/panic creep in and 3) For God to be glorified in this situation!
Tuesday, August 29, 2006
So that was great news. Because of the heart defect, they still put us in a category of about 10-15% risk of some kind of chromosome anomoly. The average person w/o the heart defect would be at about a 3-5% risk. He thought we should do the amnio for a couple reasons. 1. It's always good to know what you're dealing with and 2. If there was something seriously wrong with the baby's chromosomes, it would help them decide whether to intervene if I had pregnancy complications. For instance, if I went into pre-term labor, but they knew the baby wouldn't survive anyway, they would not do a c-section and risk my future fertility. So for those reasons, he recommends we know. Rog and I weren't ready to make that decision today, so we asked what our options are. We set up an appointment with him for four weeks and at that point, he'll do another ultrasound to check the baby's growth. If the baby is not growing well, that could be a marker something's wrong, and we would then do the amnio. But if everything's a-ok in 4 weeks, I don't think rog and I will have the amnio done. It's about a 1in 200 risk of miscarriage with an amnio, and I don't feel right about putting my baby at risk when there's no other markers.
Chromosome anomolies can be as small as a learning disability, we found, or an anomoly on a small chromosome like 22 may never even show itself to be a problem. It's very interesting. He was throwing around words like meiosis ... took me back to Biology 101!
So we are celebrating today that our baby looked great and was right on for size (a little smaller than 50%, but look at Rog and me =) and we'll take the next step when we get to it.
I thank you all so much for your prayers and support. We feel so blessed to have such amazing friends and family around us. And we are still praying for God to heal this boy's heart! We know He can do it!
Last but definitely not least, we are thinking baby is going to be Luke!
(Lucas Scott would be his full name ... Scott after Rog's brother). Little
Monday, August 21, 2006
In addition to finding out the sex, we also found out that something didn't look quite right with baby's heart. The ultrasound technician couldn't expound on her findings, but felt like we needed to see a specialist to follow-up. Thankfully, a pediatric cardiologist at Northwest Children's Heart Center had an afternoon cancellation, so we were able to get an appointment with him that same day. Numb, Roger and I sat in our car, trying to figure out what just happened. We knew we had to make phone calls, since our family was anxious to hear about our appointment, but how do you break this news when we ourselves didn't even know what to think or feel. We called my mom first, but all I got out was that it was a boy and then I broke. Rog took over the phone call and let her know that they were sending us to a heart specialist to look at baby's heart. Over the next two hours while we waited for our appointment time, we grasped onto the hope that it was the baby's activity and position that caused the tech to have concerns.
We prayed together as the time crept along. What were we looking at? Since the technician could tell us so little, we didn't know if a heart concern meant nothing or if it meant the baby wouldn't survive. We prayed some more. Finally, we checked into NWCHC, met my mom there, and were ushered back to the fetal echo room. I cried and cried, scared of this whole unknown process, wanting to be at lunch with my husband, then on my way back to work to share the good news of our baby's health.
Our technician, Mickey, spent about an hour doing the fetal echo, and was as calming of presence as you could hope for. She finished up and then Dr. Stefanelli came in to take a few more pictures. We were sent to an exam room to wait for the diagnosis. We still clung to the hope that everything was okay, that the baby's heart was perfect.
Dr. Stefanelli came into the room and quickly shared with us that our baby has a heart defect called atrioventricular septal defect. Basically, a hole in both the atrium and ventricle, so blood and oxygen don't flow in the correct way. He painted a very optimistic picture of this defect and the fix. It would require an open-heart surgery when baby is 4-6 months, but only one, not a series. The surgery will patch the holes and our cardiologist was encouraging that most children after this type of surgery are able to compete in sports and live active lives. There are also other complications that go along with AVSD, but our baby's heart didn't appear to have those. There is a high success rate with this surgery, so we have took comfort in that. We thought to ourselves, "OK, we can do this. We're going to be fine."
The second piece of news was much harder to swallow. We were told about 40-50% of these defects are also seen in Down Syndrome babies.
I had declined the 16-week blood screen, so we headed back to our doctor's office to get my blood drawn. This was all happening on a Friday and thus had to endure the weekend until we received the results. The wait was agony. I just kept telling myself "you have to eat, you have to nourish your baby." But I felt sick and scared and wanted this not to be happening. Our family surrounded us and we somehow made it to Monday, when we received the great news that our screen was negative for down syndrome, spina bifada, and trisomy 18. Even so shortly after such a horrific weekend, I see how God is using those two days to strengthen our marriage and family.
The plan is to meet with a maternal/fetal specialist, to have a level II ultrasound performed, and to follow-up with another echocardiogram in one month with Dr. Stefanelli.