Shout Now! – December 6, 2008
I have struggled lately wondering if I am in denial over baby boy. I shared before that I feel God challenged me a week or so after getting the initial news to trust that he WILL heal this baby, not only that he can. This is a hard thing to do. It’s hard to say you ‘heard’ from God; that he’s telling you something that will happen in the future. No one wants to misread God, or attribute our wishes as a message from God. It’s not only highly embarrassing, but extremely disappointing. So, I go back and forth wondering if I’m understanding the Holy Spirit or if I should have a plan for baby boy’s passing – you know, just in case. I verbalized this to Henry last night, saying I didn’t want to be naive, or unprepared (yes, I’m a huge control freak!). He encouraged me to keep believing my gut feeling – that God will heal the baby.
I’ve also cried out to God in the last week or more, where are you? are you still speaking to me? am I understanding you correctly? what are my next steps? Nothing but silence on the other end. It’s frustrating because I really felt God speak to me several times in the first 10 weeks after diagnosis. It seems since our initial visit to Children’s, I’ve become more confident in the medical community stepping up to the plate and have depended less on my faith reaction. I don’t want that. I want to know God is still there; listening, taking part, etc. So, I’ve really been asking for clarity and judgment.
This morning, I was rushing around trying to get more things done than possible and I turned the radio on in my car while running my errands. A Seventh Day Adventist service ‘happened’ to be airing. The minister was quoting a negro spiritual that says, “Don’t wait until the battle is over, shout now for you know you’re gonna win.” He went on to say that God is in control of our trials, that we don’t have to wait until the trial is over to praise His name, because we are guaranteed to win.
I really felt a peace come over me, like God was again reaching down and communicating to little ole me. I don’t have to fear the outcome of this pregnancy. God is in control. No matter the outcome, it will be a win for me. God’s plans for us are always good in the end, whether it seems that way in the circumstance or not. I aslo took it as a confirmation that God will heal this baby. Does this song always mean the outcome is the ‘best’ in human terms? No, not necessarily. But I’ve heard many things over the last few weeks that could pertain to my circumstances, but none struck a cord in my spirit like this one did. It’s hard to explain. I wanted to record this so I can look back and remember. So I can be thankful for a God who hears our cries and tells us to cast every care on Him.
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Children’s Debrief – November 20, 2008
Leaving the house before the crack of dawn – literally – is not my idea of fun. Who ever thought of starting a procedure before the sun is awake needs to have their eye lashes plucked out one at a time for punishment. By the time my MRI started at 7 a.m., I was feeling nauseous from being on the move so early in the morning. I’d eaten breakfast and then a granola bar while waiting to be called back. Can they see food in your stomach in MRI pictures? I thought the same thing when I ate a bite-sized snickers during the ultrasound…. oh well, just wondering.
If you’ve never had an MRI, the machine itself sounds like a washing machine on steroids with a jackhammer thrown in for good measure. When they take the pictures, you hear clicking noises accompanied by various fire-alarm like buzzers. The worst thing of course if being rolled into the tiny tunnel. When they first rolled me in, half my head was still sticking out of the machine. I thought, ‘this isn’t bad. If they had rolled me any further I think there would be a problem.’ No later than having thought that, the conveyor belt started up again and they rolled me completely into the tunnel into final position. I have claustrophobic tendencies, especially about having fresh air to breathe, so I really had to employ mind over matter to get through without panicing. An hour and a half later, I was allowed to move on to the ultrasound.
The day over all was great for me. I had a bunch of tests in the morning where I basically layed on a table and let people look at the baby. I was elated that baby boy has a sternum, and his lungs and chest cavity are in great condition. It was also encouraging to hear the surgeons not only have experience with this defect, but also feel confident in the outcome. We’re just waiting to see what this little heart is going to do. Like I said on the main page, God is control of this outcome. Whether the baby lives or dies, He is our hope and strength. It’s weird to be sitting here having a plan in place, with top doctors in the field, to give this baby a chance when we were told 13 wks ago this baby had ABSOLUTELY NO chance at life. Not only after birth, but also before….that the pregnancy would spontaneously end itself. That a baby with its heart outside its chest just doesn’t live. We are now being told the opposite by surgeons who have seen children not only live, but thrive once having their hearts put back in place. We found out 13 wks ago our baby was dying and now we have 13 wks until he is born and proves the OB specialists wrong. Half-way there, babe….half-way there.
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Nov. 2008 – Our visit to Children’s Hospital, the sequel
On Weds., Nov. 19, I went to Children’s Hospital to have a fetal MRI, a high-risk ultrasound, and a follow up fetal ECHO. And the results are in:
‘Houston, we have a sternum’: The MRI showed that baby boy does in fact have a sternum, and a pretty good one at that. The ‘minor defect’ as the radiologist describedit is at the inferior position of the sternum. I think in laymen’s terms that means the bottom of the sternum, that’s where she pointed to at least. It seems the bottom of the sternum is flipped up a bit like a fin instead of laying flat like the rest of the bone. There is also cartilage damage. This is where the heart is coming through the chest. The rest of the sternum looks ‘beautiful.’ (I told her this was the first time anyone has said this baby looks beautiful.) The main sternum is fully developed as well as the cartilage connecting the fully developed ribcages, diaphragms and lungs. This is absolutely the best possible scenario. As far as chest reconstruction, she said this is an easy fix and doesn’t pose a problem at all. That brings us back to the heart.
The follow up ECHO is showing no signs of digression on the part of the heart. It is still showing great blood flow from right ventricle. The right ventricle is still showing up small, so this is still of concern. However, we got some great news. Dr. Jonas and his colleague, Dr. Wessel, not only agreed to take on our case, but feel very positive about the outcome pending the heart functions well. Both have dealt with this issue before and Dr. Wessel has seen 10 cases. With how rare this malformation is, that is a considerable amount. Both said that in cases where it was simply a matter of sticking the heart back in the chest, the children did great. It was when there was additional surgical intervention needed on the heart itself that the children did not fare well. So, the cardiologist gave us three scenarios:
Best case (other than divine healing): The baby is born and the heart is put back in the chest within a few weeks of life. The heart thrives, does its job, and we go on with life.
Worst case: The baby is born, the heart cannot properly oxygenate blood (we will know this within two days), immediate heart surgery is necessary and the heart is put inside the chest.This combination is typically lethal.
Middle-of-the-road scenario:The baby is born, the heart isn’t functioning properly but working enough to prolong surgery, the heart is put back in the chest and the baby is able to heal and grow strong before heart surgery is absolutely necessary. The ideal would be a year or more. Dr. Donofario feels this would give the baby a better prognosis than surviving major heart and chest surgery within the first weeks of life.
Dr. Donofario’s gut feeling is that we are looking at the middle-of-the-road scenario. The right ventricle is causing her some concern, but she is encouraged that it looks like it has good flow before birth. In about a month, I will have weekly ultrasounds to track whether the heart’s condition is digressing in any way. This could determine if the baby is taken even earlier than planned. At this time, Dr. Donofario says the heart is “not showing ANY signs of stress.” This is truly remarkable and we praise God for it.
What we do know –
The baby will be delivered by c-section at Washington Hospital Center, directly behind Children’s Hospital ideally at 37-38 weeks. It will be hooked up immediately to a breathing tube and whisked away to Children’s cardiac NICU, a 5 minute walk through a tunnel that connects both hospitals.) The cardiologist and surgical teams will assess the baby over the next few days and determine the best course of action. Dr. Donofario emphatically stated she sees no reason why they would not be able to stabilize the baby after birth.
We are really encouraged by all this good news. Each time we go in, they seem to eliminate any possible problems other than the heart. Our prayer is that the heart will go into the chest and work well enough to not require further surgeries. While Dr. Donofario does not think this will be the case, we know that all things are possible with God. We are so thankful for all of you who have reached out to us and we continue to covet your prayers. At this point, we’re in a holding pattern for the next 13 or so weeks.
If you are just joining us in our story, please feel free to look in the archives for the full details.
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What’s in a Name – November 14, 2008
Last night on ER Angela Bassett’s character said the following:
When you lose your parents, you’re an orphan. When you lose a spouse, you’re a widow. When you lose your baby….there’s no word for that.
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The Shadow of Death – November 10, 2008
“For though I walk through the valley of the shadow of death, I will fear no evil for thou art with me.” Ps. 23:4
This is the verse I thought of tonight while putting Natalie to bed. It just came to me out of the blue. My doctor’s appointment with the OB specialist on Friday was ordinary. Nothing new to report – baby still growing, heart still outside chest cavity.
I met the last of the four doctors in the practice. They each have their own style. He kept his advice to himself. I’m not sure if this is because I just got passed off to Childrens and they are now my ‘advisors’ or if this is his general style. He basically confirmed I wanted to go forward with the pregnancy, then asked me what Children’s told me. I gave his the update and mentioned while they were optimistic, they weren’t giving us any guarantee or giving us even a 50% chance at life. We had a very interesting conversation that went something like this:
He commented that this type of defect is devastating and he’s seen three all with bad outcomes.
I asked “is that because the mothers terminated the pregnancy or because the babies died of natural causes?”
He said “both”
Me: “I wonder if that skews the statistics then.”
Him: “Maybe. The experiential advice doctors give mothers on this defect is from what they know from 30 years ago before we would find out about the defect in the womb. The baby would basically be born, the defect would become apparent and there would be no plan in place to immediately help the baby. Without immediate help, the baby cannot live.”
Me: “So, purely antidotal, do you think this is something modern medicine will be able to one day overcome more regularly?”
Him: “I don’t see why not. Technology and medical science is developing at a rapid pace. We are doing amazing things now. I don’t see why it wouldn’t get better.”
This conversation seems benign, but I couldn’t stop thinking all weekend how the doctors are being a bit deceptive with the mothers. While this condition does result primarily in death, there is some chance the baby will live. That is what Children’s is telling us and what they have seen. Starting at our 12 wk NT scan and up until we met with Children’s, we were told by our doctors and specialists that this baby had NO chance at life; that they didn’t expect life to 20 wks and when we beat that, that while we might go to 40 wks it would die at birth. I don’t want to be in denial, but it seems to me that working on statistics from 30 years ago gives mothers a skewed idea when making a decision to terminate or not – skewing the death rate a bit more. Any hesitation on the doctor’s part might make all the difference of a mother carrying to full term and giving a child a chance at life. I know this isn’t where I should focus my energy at the moment, but it’s been hard to get out of my head.
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23 Weeks and counting – November 5, 2008
Where did the time go? Last night Henry asked me how far along I am. I answered 23 weeks. “wow,” I said, “that means there’s only 17 weeks to go.” Then it hit me, they are talking about taking the baby 2 weeks early, that means 15 weeks to go. Ok, that’s gonna go by quickly and then life will be turned upside down. Anticipating baby boy will live, I’m thinking of all the things that will have to happen once this baby is born. Pumping, visits to the hospital, logistics for the girls, living away from my baby and always feeling like the girls aren’t getting what they need. It’s going to be a long, hard road. I’m not ready, but it’s certainly better than the alternative.
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New Thoughts – November 2, 2008
This morning in church during communion, I was praying for our little one. Thoughts about the baby always take me down the road of the grieving process. I was wondering how much denial I am in, being on a high from hearing baby boy has all his heart parts and feeling like God is telling me this baby will live. I imagined that should this baby die, I would be the stubborn mom saying God would still heal the baby, it wasn’t dead after all…it made me think of the story of Lazarus and thoughts moved on to how Mary and Martha were so distraught at their brother’s death. They knew Jesus could heal him, but figured it was now too late (our thoughts are not His thoughts, our ways not His ways). Jesus basically said, ‘Hey guys, I’m here. It’s not too late. This is all for God’s glory.’ So guess what docs, my baby isn’t dead yet….Jesus is here and it’s all for God’s glory.
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Wow! – October 29, 2008
Where to start? Whew. I guess at the very beginning. I’m standing in the security line to get into the hospital looking at all the parents with their children. Some of the children are obviously ill while others look completely normal. My first reaction is, “I don’t want to be here. I don’t want to come back to this place and stand in line with my baby.” In the same thought I’m thinking, “Thank God there is a place to bring my baby.” So conflicting, but eye-opening just the same. I realize that this is my first of many visits to this hospital. That we have a long road ahead of us and it is going to be extremely emotional and exhausting.
Step two: the fetal echo. At some point during the TWO HOUR SONOGRAM I heard the word pulmonary. There was a lot of whispering the entire time between the sonographer and resident so I couldn’t catch the context of the word. There was also pointing at the time of utterance, but I was specifically told two weeks ago the pulmonary artery was missing. My heart did little flip-flops and I tried not to cry at the thought of there actually being a PA.
Step three: the cardiology consultation. I did surprising well – I think this is the first visit with a specialist where I didn’t break down into tears. The reason – – – our son has a pulmonary artery! It seems so silly to walk away from an appointment where the doctor tells you your baby is only the 11th recorded case of this type of ectopic cardia and has a low chance at survival on a high, but wow, the first good news for this baby. The cardiologist talked about our baby as a baby and not a fetus. What our plan would be going forward to help our baby become a somewhat healthy baby….about delivery, about NICU, and specifically about Childrens’ Cardio NICU. It was hard to think about our baby being one of those sick kids stuck in NICU, but hey, they were actually talking about MY BABY being in there. Our specialist OB has only talked of death and making it to the next appointment. NEVER about deliver, several times about termination and always about fatal defects. The cardiologist explained it like this – the OB specialist is just that, an OB specialist. The reality is that most of these pregnancies result in miscarriage long before the mother sees a specialist. However, while our baby has an increased risk of miscarriage because of its defects, she feels given what she saw today, and given the baby’s heart doesn’t digress, we have a good chance of making it full-term. She is trained to deal with hearts – and how to fix them. The biggest issue for us is will the baby survive having its heart outside the chest cavity? An MRI will give us some more clues.
I was also comforted by the fact that a social worker will work with your older children to help them understand what is going on with the baby by using dolls, pictures, and other play ideas. They stress that it isn’t the child’s fault and there is no reason to be worried something bad like this will happen to them. We know that Natalie will have numerous questions and I think this will come in handy in preparing her to see her brother in a special hospital with tubes and wires coming out of him. I know it will be traumatic for me, I can’t imagine what her little 4-yr-old brain will be thinking.
We finally left the hopsital at 4 in the afternoon. We met with a genetic counselor in the last two hours of the day to see if there could be a potential genetic link for future pregancies. She said 20% of congenital heart defects are genetic while the other 80% are random. She will do some research on our specific family issues and we will meet with the geneticist when we return for our MRI.
Overall I’m exhausted, but feel great. I know reality will be back in full force sometime soon, but for now, I think I’ll just enjoy the high.
_________________________________________________________________________________ Nov. 2008 – Our visit to Children’s Hospital Summarized
A normal heart has four chambers: the right atrium (RA) the left atrium (LA), the right ventricle (RV) and the left ventricle (LV). The RA and LA are the same size, the RV and LV are the same size, and the Tricuspid and Mitral valves are the same size. Blood flows from the right aorta through the tricuspid valve to the right ventricle up through the pulmonary artery and into the lungs. Blood also flows from the left aorta through the mitral valve to the left ventricle up through the aorta and into the body.
Our baby’s heart while it has all its peices,has a few issues.The right ventricle is smaller than the left valve. Additionally, the tricuspid is about 75% smaller than the mitral valve, a sign that the RV is in fact smaller and not just unseeable because of the position of the baby or compression from the chest cavity wall. The pulmonary artery, instead of coming straight down and being nice and puffy, is pulled to the side and squished.
So, what does this mean for us? First of all, Henry and I are somewhat encouraged that the baby has all its parts. As you know, two weeks ago we were told the baby did not have a pulmonary artery or a right ventricle. Today, we found out he does in fact have them, but they are distorted to the point that it’s hard to make them out. The pulmonary artery especially is stretched thin and pulled to the side, due to the positioning of the heart, making it appear in a place it isn’t normally. Secondly, the right ventricle is not developed to full size, but from blood flow analysis, seems to be functioning. This could change as the pregnancy progresses, but at this point, it seems to be functioning somewhat.
So, the good news is that we are dealing with a heart that can sustain life at least for some time while the doctors monitor the baby’s heart function and plan next steps toward a good quality of life. With that being said, we are not out of the woods and are still in a precarious position. The doctor raised several questions today, some or all which we won’t have the answers to until the baby is born.
There are two major defects – the heart and the sternum. The doctor was unable to detect a sternum during the ultrasound today and suggested a fetal MRI which is better able to detect bone structure. This will tell us several things: a) is there a sternum, b) can the chest wall be repaired, c) how much room is inside the chest cavity to put the heart back in place. For treatment, we need to know all of these things. Without a sternum, the baby will be unable to contract its diaphragm which pulls air into the lungs. It is vital for this function, so the baby will need either a trachea tube or breathing tube until surgery can be performed. Without room in the chest, surgery will be postponed to allow the baby to grow. This can take anywhere from two months to a year.
Best case scenario (other than a miracle from God): The baby is born, it’s lungs work properly, the right ventricle is able to support blood flow, it gets a breathing tube and surgery can take place within a few weeks/months to put the heart back into the chest cavity. Once inside the chest cavity, the right ventricle experiences growth in its new healthy habitat and no further surgery is required.
Worst case scenario (other than death, which is still a high probability); The baby is born, the lungs don’t work properly, the right ventricle cannot support proper blood flow, intervention is necessary not only for putting the heart back in place, but also ‘rewiring’ veins to allow sufficient blood flow until better technology can be developed to fully repair the heart. (people have been known to have this rewiring done and live years, but not long lives).
The cardiologist feels we are somewhere in between the best case and worst case scenarios. She can’t predict anything until birth, but we will have several plans in place to know how to go forward once the baby is born.
What we do know is this:
1) There is a chance this baby will live. Up until now, we’ve been told we had as little as a 1% chance at having a living baby. The cardiologist is cautious to give us much hope, but feels optimistic that we have options.
2) If the baby does survive birth, the heart will be covered with a synthetic material to prevent infection since the heart is not covered by skin.
3) There will be extended stays in the hospital for at least the first year and he will need lifetime monitoring and/or care. Making it to birth is only the beginning of a long, trying process.
Both Henry and I feel we are in excellent hands at Childrens. We consulted with the director of fetal cardiology and she spent an amazing amount of time both looking at the pictures and explaining to us what is happening and our options moving forward. She told us there are only 10 case studies of this type of scenario worldwide. Our baby would be the eleventh. There are no statistics to base decisions on; there are no statistics to give us life long predictions. She emphasized that while there are no ‘experts’ for this condition, she and her team are heart experts and would do everything possible to get us not only a living baby, but a baby who would grow into a child who would one day be playing on the playground instead of weak on the couch.
The other good news is that the Childrens infant heart surgeon is the best in the field. She basically said before Dr. Jonas started doing his work, there were infant heart surgeries, but when he came along, they started being successful. He’s world renowned and is the author of the leading text book on infant heart surgeries. He still has to agree to take our case on, but she feels if he agrees to work with us, we are in the best hands possible. She also emphasized if he doesn’t agree to work with us, she would coordinate us getting in with another surgeon. No matter who does the surgery, if it comes to that, our ultimate faith is in God, not in the surgeon. We know that nothing is impossible with Him!
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Preliminary Results – October 24, 2008
Got the call this morning from the specialist’s office who did my amnio. I burst into tears as soon as the caller identified herself as from there and asked if I had a minute. I was overwhelmed with the thought of having the results and what it might mean for us and this little guy. She quickly told me that the preliminary results show no chromosomal issues AT ALL, but the final results will be back in 10-14 business days. Here is a preliminary Hallelujah! I wasn’t worried about anything except downs which my blood test came back abnormal for. I know this is a secondary issue, and not nearly as important as if this baby will live at all, but it was a huge relief to hear that it seems nothing else is wrong. This week has certainly been an emotional roller coaster. Please pray with me for next Weds.’s appointment at Childrens that I will be focused through the emotions so I can understand all the information the doctors give us.
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Questions – October 23, 2008
I tried to lie down for a nap this afternoon, but my mind continued to race with different thoughts from the day. A friend sent a link to a blog of a woman who is about to deliver a baby with a bad heart. I sobbed as I read her story relating to so many of the fears and thoughts she shared on her site. Thus the thoughts as I lay there….will this baby live? Will I have to pick out a casket? What will I bury him in and how much will I splurge on that outfit? Do I even want to plan that far in advance? And, by the way, how far in advance should you plan for these things? If I plan for these things, does this mean I’m not trusting God to heal this baby?
I’ve only been angry/jealous twice since finding out our baby is dying. The first time was when I read the post of another blog I follow. Melissa suffers from infertility and lost a baby earlier this year. A month later, she was able to adopt a little boy. When I read her post about adopting, I couldn’t help but cry out to God, “Why does she get a baby and I don’t?” The same thing happened the other day. Coming out of a doctor appointment, I saw a couple climbing out of their car with not one, but two babies. They had beautiful twins. Again I cried to God saying, “Twins? They get two? Can’t I just have this one?”
I’m very curious to see what they say on Weds at Childrens. I don’t even know if it’s possible to keep this baby alive to get a heart transplant. I guess we’ll know more next week.
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Amniocentesis and Anxiety – Oct. 21, 2008
Today I had my amniocentesis. It was so different than what I expected. First off, the doctor who performed the procedure isn’t one I’ve seen before, but is part of the practice of specialists I’ve been seeing. The sonographer who assisted him, I’ve seen every time I’ve been there. He started off by questioning my reasoning for getting the procedure in the first place. He asked me why I wanted it and I said because I felt it would give the doctors more information to work with. He immediately told me it wouldn’t give them any useful information and it wouldn’t be helpful at all. He spent the next 10 minutes confusing me totally as to if I needed it done, practically berating me for thinking it would be useful. The whole reason I felt it was important was because the prior specialist and my OB felt it was a good option for us. They both felt the Children’s doctors would like the additional information. I was already anxious for the unknown of the procedures and the slim chance of miscarriage. Honestly, I felt like crying.
I finally stuck to my guns and decided to go ahead with the procedure. The doctor mentioned two things in his tyrade that made me think he was slightly biased that we should do nothing to help this baby. The first is that I realized he hadn’t read my chart history when he mentioned we had no reason to be concerned about chromosonal issues. When I mentioned my blood screening results indicated an abnormal reading for Downs Syndrome he made a little shocked expression and said under his breath, ‘well, that might be a reason for getting it (meaning the amnio)’. Secondly, he went on and on about how this was a fatal abnormality and baby hearts for transplants are hard to come by and he wasn’t sure they could keep the baby alive long enough to wait for one. Praise God I had an OB visit yesterday where my OB warned me that a transplant was probably our only hope and that for babys they use orangutang hearts since baby hearts are nearly impossible to get. Knowing this information gave me the feeling this doctor was biased in his ‘advice’ and it was better just to go forward since my other doctors and Henry all agreed that amnio was a good idea.
All that being said, I was a little shaken up by the time we even got to the procedure. The procedure itself was a little nerve-wracking. If you’ve never been pregnant it will be hard to understand, but basically there was a weird pressure like laying on your stomach when you’re pregnant. There was also some discomfort but was doable. The worst part was when the baby moved to where the doctor was working and he had to poke my stomach firmly to try and get the baby to move away. Of course the baby was stubborn so the doctor had to remove the needle and try in a different spot. The whole thing took about 10 minutes.
During the procedure, my adrenaline was pumping and I got nauseous from the poking and my nerves. After it was over, I burst into tears in the parking lot and continued crying on the car ride home. I tried to figure out if something upset me, but I really think it was my body releasing all the tension from the procedure. My first reaction was to call Henry and beg him to come home and hug me in my bed, but by the time I finished the five-minute drive home, I felt much better.
A friend had the girls until about 3 p.m. and then set them up with a movie. I tried watching with them for awhile, but they were bouncing off the walls and sometimes hitting into me and I was getting some pain. It has been frustrating the last few hours trying to get them to stop touching me…I don’t want them to feel rejected, but I also don’t want them to hurt the baby. The biggest concern right now is that the little punctures from this morning heal without any more stress to the womb. That means no lifting, limited stairs, limited activity. Have you ever tried that with an active 2 and 4 yr. old? And they’re not even boys! No worries though. Henry should be home shortly to help with dinner and bedtime. It’s an hour past dinnertime for the girls, but they are distracted by Barbie Nutcracker so I’m hoping they don’t ask for food until he gets here. If I had known I would be this overwhelmed, I would’ve had someone come in to help me for the day. I’m guessing I’ll be much better tomorrow.
____________________________________________________________________ Oct. 2008 –
We are headed out the door in 15 minutes for the airport, but I wanted to get a quick update out for those who are curious about our 20 week sonogram.
We had our 20 weeks sonogram on Friday and we are having a boy! I was shocked beyond shocked….and quite honestly, it threw me for a loop as my immediate reaction was “please God, don’t take my only son.” Funny, huh, since he sent his only son for us….that just hit me. Anyway, I was pretty emotional over the weekend reprocessing and grieving for my son, not my daughter, but God impressed on me the story of Abraham and how he waited so long (much longer than me) for a son, how God fulfilled that promise and then asked him to sacrifice that son back to God. Abraham’s faith was so strong in God’s original promise of making a great nation using Abraham’s son that he was able to let go of the only visible sign of that promise. And God chose to send a replacement in the ram. I know you know the story, but it just hit home for me this weekend that this baby, boy or girl, is God’s and while he hasn’t promised me a son, He has made me many promises, and I need to trust in His promises and let go of my earthly desires. It remains to be seen if God will give me this son on earth, but I’m in a better place today for sure. The specialist was able to see a lot on the heart condition during the sonogram. We found out that the heart is not only outside of the chest cavity, but is severely malformed. When the heart is developing, part of it starts as a trunk which develops a septum separating the trunk into the pulmonery artery and the aorta. Our baby’s heart simply has a trunk. The pulmonery artery is essential for oxygenating the blood so while the baby is in utero, it can breathe because it doesn’t require oxygen. This will change of course at birth. We are going to Children’s Hospital in DC on Oct. 29 to conduct a Fetal Echo and have consultations with both a pediatric cardiologist and geneticist (to explore some of Henry’s family’s conditions to see if that could impact the baby’s prognosis). We also plan to have amniocentisis later this month to give the pedicatric cardiologist and geneticist more information to work with in putting together a clear picture of what’s going on. My prayer (other than healing) is that we would have wisdom in making decisions going forward and understanding all of our options. Children’s of DC is supposed to be a great place to go on the East Coast so we’re blessed to live so close. That’s all we know for now.
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Baby Update – Sept. 17, 2008
I’ve gotten several emails from friends asking how I’m doing emotionally with the baby situation so I thought I’d post a quick update for the 3 of you who read my blog. I really am holding up well – I think. Henry says I’m not because he knows I cry sometimes, but I try to tell him that doesn’t mean I’m not doing well, just working through the news. I am 16 wks and my doctors and the specialist we saw said they will be surprised if I make it 20 wks. Everyone gave us the option to terminate the pregnancy. We, of course, chose not to. We don’t know God’s plan and don’t want to assume what it is. We believe he can heal the baby. We are still waiting to see if He chooses to do that. Without divine intervention, this baby will not live.
The first week I was hypersensitive to my body and kept wondering if today was the day the baby would die. It’s not that I didn’t believe in the possibility God would heal the baby, I just figured it isn’t the norm so I wasn’t going to get my hopes up. Then doing my Beth Moore study she was talking about faith and asked what are we afraid to trust God for so we aren’t disappointed. Of course, I thought of healing for the baby right away. So I cried and prayed and now live every day thinking the baby will live. My opinion isn’t different, just my perspective.
My doctor asked me last week how I am doing and how hard it must be to come in for appointments, and was it worse to hear the baby’s heartbeat. She was truly curious to how it felt to be me. She was going on and on about how hard what I was doing (not terminating the pregnancy) was and I basically said, You know, as westerners, a lot of times we look for the easy way out, but that isn’t always the best for us. Not that I’m looking to grow or mature through this, but since Henry and I aren’t comfortable making a life decision for someone else, we really think this is the best way.’ I told her I hoped it didn’t sound callous, but while some days are hard, or seeing a baby blanket or story on t.v. makes me cry for this baby, I doubted this would be the hardest thing I would do in my life. I told her the appointments weren’t that hard, not yet anyway since I’m still sick. They are just a confirmation of what I already think – that the baby is still alive. I’m really open to the baby living or dying. Obviously, my preference is life! I hope this doesn’t sound like I’m not disappointed, because I certainly am. But I’m not wallowing in grief nor asking questions I’ll never get the answer to. I really don’t feel the need to. Yes, I’m holding my girls tighter and rocking Ainsley more and letting them SLEEP in my bed sometimes. Can you believe that last one!! They have to move when daddy comes to bed, but still. Whew, can’t believe I’m letting them in my bed!
I mostly have good days with a few bad ones here and there, but am working through the grieving process pretty well. I think I’d be a basket case if I didn’t know there is a God out there who has plans for my life and the life of this little baby. So while in the back of my head I know there is the prognosis of death, I’m living every day with the joy of life . I told God I would be the best mom while he loaned me the baby and hopefully that will be for some time longer. We’ll see.
