A little more backstory... and a lesson I learned in hope and faith

For the past month or two, I've been going through a study on the book of Daniel, along with some of the women in our church. I've enjoyed the study, and it has recently reminded me of something I learned when Elam was diagnosed. I realized that I hadn't really shared it with many people, so I thought it may be helpful to some if I write it here...

When we arrived for our 20-week ultrasound on November 6, 2008, (I can't believe that that was almost one year ago already!) we were thrilled at the thought of learning our precious baby's gender. The suspense was killing us! Soon, our excitement turned to bewilderment and fear as we learned that something was very likely wrong with our little one. After a painful amniocentesis and lots of blood work, we went home (Why did the doctors let us drive ourselves home?!) to wait for the results, knowing that it could take up to two weeks to hear any news. We went home and just cried and prayed for our little one. Surely, we thought, nothing is wrong!

God was very merciful to allow us to get the results the next day. Ben was at work when the doctor called me. She told me that we should both be there to hear the news. I knew this meant that the news was bad. Luckily, my sister-in-law drove us this time-- we learned our lesson yesterday about driving when getting terrible news! The doctor told us about the baby's disorder, 69-XXY triploidy, and that there was absolutely no chance of the baby surviving. In fact, it was very rare for a baby to live as long as mine had (so we should expect the baby to die very soon). Amidst the bad news, I remember thinking, "It's a boy!", but this wasn't nearly as exciting as I had thought it would be a few days ago. She told us that most women with this diagnosis choose to terminate the pregnancy. She encouraged us to also choose termination because it is often too unbearable for most women to walk around with a baby who you know will die at any moment. I remember just trying to focus and process all of the medical information she was giving-- my biology degree came in very handy! But as I was just trying so hard to focus and think amidst the terrible news, I actually found myself considering the termination. In those moments, I was giving up on my baby, accepting the news as best I could at the time. It was like the baby wasn't a baby anymore, just a problem, a medical condition. In my right mind, I would never consider abortion, but I remember in that moment it seemed to make some sense. Thank God that Ben was there, in a slightly better frame of mind than me, to say that we would not choose "termination". We discussed what to expect with regards to going into labor, and then headed home. What a terrible rest of the day! We had prayed that this would turn out to be nothing-- and it turned out to be lethal!

That evening was a miserable one. I basically decided that I would try to no longer think about my baby. I would try to forget that I was pregnant. Yesterday, I was sad that my belly was so small-- it was proof that my baby was too small and possibly sick. Today, I thought my belly looked too big-- a reminder that I was pregnant. I felt like a ticking time bomb. I could go into labor at any moment, and expected it to happen very soon. I just wanted it to all be over. Forget it. "I take it back, God, I don't want to be pregnant anymore!" I don't know if that makes any sense to anyone reading this, but that's the best way I can think of to describe it.

God was again very merciful to give us sleep that night. The next morning, we woke up rested, and sat on the couch to eat our breakfast. Ben checked his email and saw that we had received a long email from a good friend of ours. Our friend told us of how he and his wife were praying for us, and he reminded us to not lose hope that God could heal our baby:

I am not so bold as to say that I know that the Lord wants to heal your son. But I am so bold as to say that He can, and that He just might. He takes pleasure in using the foolish things of the world to confound the wise. He laughs at the wisdom of the world because it is as foolishness to Him. He knows how to give good gifts to His children. And He demonstrates his divine nature and His eternal power so clearly through all of His creation that all men are without excuse. In light of knowing this, I stand as Mordecai did with Esther saying, "who knows whether you have not come to the kingdom for such a time as this?"

He also encouraged us to have the elders of our church anoint me and pray over our little one. I hadn't even considered that!! At this point, I had given up hope. I had taken the doctor's words about our baby as the definite truth-- he will die, and he will die very soon. But God is the one with the final word. How did I forget?? It's amazing how you can sort of lose your mind in crazy circumstances. The words of our friend really shook me. But I wasn't sure what God actually wanted for our baby. I knew that God was totally capable of healing him, but I didn't know if that was actually His will. I wondered, if I pray for healing without totally expecting God to heal my baby completely, am I lacking faith? After failing to drive a demon out of a boy, Jesus' disciples asked Jesus, "Why couldn't we drive it out?" Jesus replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, "Move from here to here," and it will move. Nothing will be impossible for you," (Matt. 17:19-20). Would God heal him if I didn't pray absolutely expecting healing? Would He refuse to heal my baby if I thought that his disorder might still take his life? What do faith and hope look like in this situation??

We talked to another good friend about these questions later that day. I told him that I knew that God was able, but I didn't know if He was willing to heal my baby. And I told him that that scared me-- that it would be my fault if my baby died because of my lack of faith. He assured us that that is faith-- knowing that God can do it. We don't have to know if He will, just that He can. Our friend told us to give ourselves room to feel what we feel. If I felt one day like I just wanted this all to be over, that's ok. And if I felt another day that I desperately wanted my baby to be healed and survive (as scary as waiting for that without knowing would be), that's ok, too. I didn't need to worry so much about how I was feeling. I also didn't need to worry about how I prayed. I just needed to pray.

I felt relief. I could feel however I needed to. I could take a deep breath, and let God be God. He wasn't going to trick me, or wait for me to not have "enough" faith so He could take my baby. He was actually trustworthy. I was aware that I was totally out of control, and He was totally in control. From then on I prayed like crazy! I prayed all the time for healing. And Ben and I decided that we would do whatever we could to enjoy our little one while we still had him. (Little did we know that against the odds, we would still have him for 16 and a half more weeks!) We named him and I decided to continue talking to him, reading the Bible to him, and enjoy feeling every one of his movements. We prepared our home for him just in case he would survive, even if we would only survive for just a few hours or days.

The funny thing was, throughout the rest of my pregnancy, I never again wanted it all to be over. I wanted Elam to make it as long as possible. I hoped that I would go well past my due date. But even if I did have days feeling hopeless, that would have been ok.

So, how does any of this relate to the book of Daniel? In chapter 3, Shadrach, Meshach, and Abednego are standing before King Nebuchadnezzar, facing a horrible death because they are refusing to worship the idol he has set up. Verses 17 and 18 say, "If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king. But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up" (emphasis mine). Shadrach, Meshach, and Abednego had faith in God-- not because they knew God would save them from the furnace. Instead, they knew that God was able to save them from it, and that faith was enough. They chose to trust and follow Him even through their scary, uncertain future, knowing that He may allow them to die a terrible death in a huge, roaring fire. But He is still good, and we can still trust him even as we walk into a fiery furnace, knowing that either he will deliver us from it, through it, or by it into His arms.

We can't force God to do what we want by having the "faith" or expectation that He will do what we want. It's easy to misinterpret James 5:14 - 15, thinking that all we have to do is pray by "faith" (we absolutely expect healing) and God will save the sick. That leaves it up to us, like we're the ones in control. There's no formula. God has a plan that's better than what we can imagine. Sometimes that includes some pain and suffering. And that pain and suffering will be redeemed to be something far greater than we could ever plan or imagine. For whatever reason, God decided to take Elam rather than healing him. And losing Elam will be redeemed for something indescribably good. We couldn't force God to heal him by praying just right. Learning that was very freeing for me.

Settling into a New Normal, Planning for the Future

Over the last month, Ben and I have been getting more and more settled into our (new) normal way of living. My body is continuing to heal physically from giving birth back in March. The steroid shots did not seem to help speed my healing, but I am seeing improvement after just giving myself more time to heal. I'm working on getting back into shape. I'm exercising 4-5 days a week and eating more healthy foods. I'm enjoying my daily activities-- exercising, gardening, spending time with people, working on a scrapbook for Elam, etc. Ben is continuing working as an electrical engineer. He enjoys his work, and he's looking to take on some side work to help us in our finances, hopefully allowing us to pay off our car. Also, we are both enjoying pouring ourselves into the church small group we lead. So overall, we are enjoying life and glad to be getting back into the groove of things.

It has been almost 5 months since Elam was born. For the past couple months, we've been thinking more and more about our next pregnancy. But because this blog is for Elam, and for what we've learned from being his parents, we decided to create a new blog where we will talk about our experiences in having more children (and about our experiences in life in general). We still plan to continue updating this blog with things we are still learning from our experiences with Elam.

As you can see in my post yesterday, the funeral home finally received and installed Elam's marker. We visit his grave every now and then. We dearly miss our little one every day, but we're glad to know that God is taking good care of him.

One small prayer request: You know how you can have dreams about something emotional, and when you wake up you still have those emotions, even when you know it was only a dream and that your emotions are totally irrational? Occasionally, I have dreams about Elam. Sometimes, I dream that he lived for a while after his birth, and my dream involves taking care of him. Sometimes, I dream about giving birth and discovering that he has died. After I wake up from one of these dreams, it usually colors the rest of my morning (and perhaps the whole day). It's like the dreams open up an old wound, if only ever so slightly. I had one of these dreams last night, and unfortunately, even though I haven't been consciously thinking about my dream, I have carried the sadness from that dream with me throughout my day so far. I know this is a small thing, but if you think to pray that I wouldn't have these dreams anymore, I would appreciate it. I'm sure that having dreams like these after a traumatic event is pretty common, and, who knows, maybe they're even part of the healing process, but it would be nice to have fewer of them if they're not totally necessary. Thanks for your prayers.

Steroid Shot

My doctor's nurse called me back the day after I talked to her about ordering the steroid shot. They were actually able to get the steroids in much quicker, so I was able to get the shot last Monday. Very painful! It turned out to be three shots. The pain from the injection wore off after a couple days. I'm not sure the steroids are helping me any. As far as I can tell, my symptoms have not improved. I guess I'll just have to wait and see!

Slow Recovery

I talked to my doctor about a week ago about my very slow physical recovery. She consulted the other doctors in the practice and they think that I likely have an allergy to the sutures they used for my episiotomy. They believe that that is what is causing my recovery to be so slow. At this point, she said, I should be totally back to normal, but because of the allergy I'm not back to normal. She said that she can give me a steroid injection at my episiotomy, which should help speed my healing. I have decided to get the shot. My appointment is in three weeks. (They have to order the steroids because they don't normally have them.) I'm really hoping that the steroids will help me finish healing soon. It is nice to know what is probably causing my slow healing. And it's good to know that I'm allergic to those sutures in case I ever need sutures again!

Ben and I are continuing to heal emotionally. I feel like I'm really enjoying life right now. I still have my moments, but overall it's been good. I mentioned in my last post that I have been having a hard time being around or talking to pregnant women or new moms. At the advice of a friend, I have been praying regularly about it and when I'm around those women, I am making it my practice to just pray for them and their babies. It seems so simple, but I've found that very helpful over time. It's not like I felt better right away, but over time it's been helping me to "rejoice with those who rejoice" even as I mourn over my little one. There have been a few times lately where I've realized that being around them hardly phased me at all. I hardly thought about it, and I actually found myself being happy for them. God has really been answering my prayers and gradually healing our hearts! I've still got a way to go, but it's so nice to see God working me through this process.

Update

It's been a little over 9 weeks since Elam's birth. My physical healing is going very slowly. I may have to go back to the doctor next week if my symptoms haven't significantly improved. Soon after Elam's birth, I got three different infections, which could be what has caused my healing to be so slow.

Emotionally, I think I'm having more good days than bad. I'm having a hard time being around all the pregnant women and new moms-- there's so many of them in our church right now! I want to be happy for people and not upset or envious, but I'm having a hard time. But I do feel like God has been speaking into that in the last day or so, and for that I am so grateful. I'm reading a few books on miscarriage/stillbirth/infant death, and they have been helpful. One in particular, called, Losing You Too Soon by Bernadette Keaggy, has been really helpful in seeing how a Christian woman has grown and dealt with life after losing 5 babies. Journaling has also been very helpful for me. I actually wish I had started journaling right after Elam was born, instead of waiting a few weeks.

I know I mentioned this once before on our blog, but it's been a long time so I just want to remind everyone that we are fine to talk about Elam and everything that's been going on. I know people often don't feel like they know what to say or are afraid to bring it up, thinking it will suddenly bring up sad memories. But it won't suddenly bring up sad memories-- I'm probably already thinking about it anyway! And I actually like to talk about it! It's helpful for me. There's no pressure either way-- no one needs to feel like they have to talk about Elam with us, but also no one needs to feel like they need to avoid the subject either.

Thanks for your continued prayers and support!

Control

The last five and a half weeks have been difficult and very emotional. Very up and down. But God has taught me so much as we've been grieving our little one. Actually, He's been teaching me so much throughout my entire pregnancy. One thing He's taught me since the beginning of my pregnancy is how good it is for Him to be in control (rather than me) and how I can trust Him with that control. And that's been reiterated since we learned that we would lose our little one. Here's an entry from my pregnancy journal that I wrote at the end of my first trimester (which was before we learned of Elam's lethal diagnosis):

God has taught me so much throughout my pregnancy already! I've always been a control-freak, but with pregnancy I've realized that I'm not able to be in control. It sounds weird, but when I first found out I was pregnant, I became very worried about the baby because I hadn't been in control of its conception and development so far (like somehow if I had been paying better attention, I could have been choosing a good healthy sperm to fertilize the egg). Somehow, I thought that without my conscious involvement to this point, things just couldn't be going well. So God started teaching me (or rather, I started listening) that He has directed everything and He really doesn't need much involvement from me in this process. I had to realize that He's in control and I'm totally not. I've learned a lot about trusting him and not feeling like I always need to be in control of things. He's good and He's got it covered. This has really kept me from worry. Thank goodness that He's in control of this pregnancy and not me. I would have messed things up if I was the one in charge!

In relation to all this, I've learned about how precious life is and how much God loves each person He creates. He's paying a lot of attention to every little detail of the baby's development. He's in control and He's very purposeful. He obviously loves this little baby dearly. He's obviously got great plans for it, or else why would He bother? All this just makes me love the baby even more, knowing how precious it is. I can't wait to meet it! This has helped me begin to see all people in a different light. Each person has God's attention; each was carefully formed by Him.

After reading that journal entry, especially the first paragraph, it may seem like God really let me down. It may sound like He really wasn't trustworthy after all. It could be easy to think that way. But I know He didn't let me down. He still was in control the whole time. He was still paying enormous amounts of attention to Elam's development. I was so aware throughout my pregnancy that God was there inside my womb with Elam, putting him together just the way He planned. He didn't make a mistake. He didn't forget him... or me... or Ben. He allowed little Elam to have this problem. And it was for a reason... a really good one. I don't know what that reason is, but I trust that God would not allow this to happen without a really good reason. God is still good and He is still trustworthy.

I used to be such an anxious person. I had panic attacks over anything and everything, big or small. So I just wanted to be in control as much as possible. God has taken so much of that anxiety away from me... so much, that I was grateful to not be in control; I was grateful that I didn't have to make the choice about when Elam's life would end. Throughout my pregnancy, even after we learned of Elam's diagnosis, I had so much peace that I cannot explain. I had my moments here and there, but overall, I had peace. It was still incredibly difficult. It still hurt. But I just knew that Elam was God's little one. Elam was God's to give, and he was God's to take. I didn't want to lose my baby boy. But he was never really mine to keep. I wrote in my journal that God must have great plans for my baby. And He did. They weren't anything like the plans I thought God would have... But they were still great.

Thank You

We just wanted to say thank you to everyone for all your love and support these last several months. We are so grateful for all your prayers, encouraging words, calls, emails, meals, help around the house, and so much more! I cannot imagine having to go through something like this without the love and care of God through His church. Your love has blessed us so much!

This is not our last post to this blog. We will continue to post updates and share some of the things that God has been teaching us through this. We just wanted to make sure you all know how much you have blessed us and are continuing to bless us as we grieve our little one.

More Photos of Our Little Elam

Elam's Burial and Memorial Service

Our little Elam was buried today. I have been having second thoughts about using the cremation and burial service that Baptist Hospital provides. I just wanted something more personal that we could be more involved in to honor our little one. So we decided to make arrangements with a funeral home to have him buried, rather than use the service Baptist provides.

We went to the funeral home on Saturday to discuss the arrangements and Ben and I were able to dress him for his burial. The actual burial was this morning. We arrived early to spend a little more time holding and kissing our little one and so I could place Elam in his casket. Although it was so hard to dress my little baby boy for his burial and place him in his casket, I'm very glad that we chose to do it.


There will be a memorial service to honor our son this Thursday, March 19, at 6:30 pm at our church. Everyone is welcome.

Lighthouse Church
5100 Blue Hole Road
Antioch, TN 37013

The Birth of Our Son

As many of you have probably heard by now, a lot has been happening the last couple days. On Sunday morning, Hailey was having some pain and trouble sleeping. We also had trouble locating Elam's heartbeat - we could hear it, but not really well. We realized she was having regular contractions about five minutes apart, and called her doctor. We were directed to head to the hospital to get checked out.

At the hospital, Hailey got connected to a fetal heart rate monitor, as well as a contraction monitor. They put her on IV fluids to attempt to stop the contractions in case she was simply dehydrated. As it was the weekend, Hailey's regular doctor was not available, so we met with the doctor on call for that weekend. She told us that Elam would likely be born in the next 24 hours, and presented us with our options for delivery.

Elam was still frank breech. She told us that with his size and breech presentation, he would likely get his head stuck in the cervix during a vaginal delivery. This would be fairly traumatic, and his chances for surviving it were very low. We could also choose to have a C-section. Because of Elam's small size, again, the C-section would be a classical (vertical) incision. This would mean that all future pregnancies would have to be delivered by C-section. Also, the small size of the uterus made severe uterine bleeding a serious risk as well. In addition, there were still no guarantees that Elam would survive a C-section.

We made the very hard decision to have a vaginal delivery. While it was a very difficult decision, we knew that it was the best decision for our family. We were moved into a regular labor, delivery, and recovery room. Hailey got an epidural and tried to get some rest. This was probably around 3-4pm. For the next 12 hours, we were surrounded by family and friends as Hailey's labor progressed.

At around 2am on Tuesday, March 2nd, Hailey quickly progressed from 6cm to 9cm, and Elam arrived at 2:21am. He was only 1lb, 14oz and 13 1/4 inches long. As expected, his head got caught in the cervix, and he passed away during delivery. Not only was it my first time to witness a birth, but a very difficult and emotional one that I'll never forget. Hailey needed an episiotomy in order for Elam to come out, so I stayed with her while they stitched her up. They brought Elam back a couple minutes later, and I got to hold him, rock him and talk to him for the first time while they continued with Hailey's stitches. When Hailey was stitched up, I handed Elam to her, and the doctors left us to spend some time with our new little one.

We were so surprised at how normal he looked! Despite his defects, he looked every bit like a normal baby, although tiny. We spent some time looking at him, talking to him, and crying together before we let our family and friends in to see him.

The next day in the hospital was difficult. We were totally exhausted, and Hailey was learning her routine for managing her pain and healing. We had so many visitors and friends come by to express their sympathy and to be with us, we knew very well that we were loved. As Hailey's pain was well managed, they offered to let us go home. We decided to see Elam one last time before we left. We held him, kissed him, and said goodbye for the last time.

The hospital has an arrangement with a local funeral home where Elam will be buried. We are glad to have some place that we can visit and know that he is there. We have not yet decided about having a memorial service or not. We've experienced a tremendous emotional roller coaster the last few months, and especially the last few days. It has been difficult, yet joyful at the same time. We were so excited to finally meet our son, yet so sad that he had to go. Knowing where he is now is a tremendous source of peace for us. In the presence of Jesus, where there is no pain, no tears, and no sadness - what better place for such a beautiful, precious child! We know that the Lord has truly answered our prayers. He kept him safe for so long, and allowed us to see and hold our son.

We know that the next months will be difficult as well, but we know the Lord is still good. We still trust Him and know He has a plan for us and for Elam so much larger than what we can see or know. We are determined to never forget our son, to never stop honoring his memory. Thank you all so much for following us on this journey. Thank you so much for your prayers, your letters and your gifts! Without your love, support and friendship, the road we are on would be so much more difficult. Please continue to keep our family in your prayers.

Mommy and Elam

Daddy and Elam

In Labor

I am currently in labor! I woke up this morning around 5 or 6 am with contractions. I ignored them for a while, thinking it was just pain caused from something I ate. But they persisted and intensified so we decided to go to the hospital.

Elam is still frank breech. His heartbeat is still ok, but it's dropping temporarily during my contractions, which is not good.

A c-section would be very risky for me. My uterus is so small that they are concerned that it could bleed too much, which would cause them to have to remove it. So we've decided to do a vaginal birth. This poses risks to Elam, so please pray!!!

I am currently dilated 2 cm, almost 3, an I'm 80-90% effaced. My contractions are frequent and intense. I'm going to be getting an epidural pretty soon. Please pray for Elam! We are hoping to be able to spend some time with him.

Doctor Appointment Today - 35.5 Weeks

I had another appointment today with my OB. I'm going once a week now. She checked my cervix and found that I'm dilated 1cm and my cervix is starting to soften and thin out. She was surprised that my cervix was already dilating and ripening. She could feel Elam's rear end and she could tell he was putting a lot of pressure on my uterus.

Because I'm dilated 1cm already and my cervix is starting to thin, she thinks I will be a good candidate for labor induction. She suggests inducing me right around my due date (unless I go into labor on my own before then) and trying for a normal delivery, even if Elam is still breech. She suspects that he will still be breech because he's not very active and my amniotic fluid is low. But she doesn't think it will be too traumatic for him. Her main concern is that his head would get stuck in my cervix as he's being delivered. There are things they can do to help his head get through, but it can be risky. She thinks it would be good to avoid a c-section because my uterus will probably still be so small that they have to do a classical incision, which would mean that I have to have c-sections in the future. But a c-section would be less risky for Elam. She's still willing to do whatever we decide, and she's very understanding that I don't want to have any regrets. She's going to talk to the high-risk OBs to see what they suggest. It's very difficult-- there's no obvious right answer.

Elam's heartbeat is still healthy. I've gained a total of 18 pounds so far! The doctor is very impressed that I've still managed to gain a decent amount of weight given Elam's condition. Everything else is still looking good so far. The doctor said that she still expects Elam to make it to full term.

I can't believe I've only got four and a half more weeks to go until my due date! It's almost time to meet our little boy! Very exciting! Please continue to pray that Elam would be healed of his triploidy and all his birth defects. The hole in his heart is large enough that it may cause heart failure. And please pray that Elam will move into a head-down position and that Ben and I can make the right decisions regarding his birth and his care afterwards. I'm trying a few things that may help coax Elam to move into a better position. Hopefully it will work!

Ben and I both are feeling more and more anxious as we get closer to my due date. This whole experience has been very wearing on our emotions. It's been hard, knowing that every day for the last 4 months could be "the day". God has given us a lot of peace and patience, but it's still hard and we sometimes feel like we're running out of emotional energy. So please pray also for our emotional/mental well-being as we're nearing the end of my pregnancy. Thank you!

Ultrasound Today

Our ultrasound today went well. It was another quick ultrasound to evaluate Elam's growth. As I had suspected, he's still in the frank breech position. He was also still low in my pelvis, so he was hard to see. But he has grown. He's now about 2lb. 6oz. We were excited to hear that! While he's still very behind in his growth, he's grown almost a pound in the last four weeks. We got to see the front of his face, but couldn't get a good view of his profile or much else. We could see his eyes moving around, which was neat!

We may post the video from this ultrasound. We'll have to watch it to see if it really shows much. You never know how much the sonographer actually records.

We have another ultrasound scheduled in four weeks. The sonographer said that it would be very important to have an ultrasound soon before I deliver him so they could determine his position and so the NICU could be prepared for his size.

Doctor Appointment Today

My appointment with my OB went well today. My blood pressure is still great and I'm still gaining about a pound a week on average. Elam's heartbeat is still normal. I asked the doctor about the neonatologist's comments regarding c-sections. She said that it is typical for neonatologists to be against c-sections. We talked a little about the risks and about my likelihood for having to do more c-sections in future pregnancies. It sounds like if I have a c-section that I should plan on having more in the future. Vaginal births after c-section (VBAC) are possible, but still not typical. My doctor is willing to do the c-section if I want it, and she's not too worried about the risks. We discussed all the different possibilities. I think the best option will be to wait until I go into labor, whenever that is (even if it's a little past my due date) because laboring is important for babies. At that point, we'll try for a normal delivery and monitor Elam's heartbeat closely. If he is distressed at any point, then we would do a c-section. But it is possible that he could do fine with a normal delivery. I'm excited about possibly doing a normal delivery, but I'm also fine with doing the c-section if that is what Elam needs. As with everything else in my pregnancy, we're just going to wait and see how he does.

My next OB appointment is in two weeks. After that I have one every week until my due date. Not too much longer now!

We have another ultrasound Thursday afternoon. We're looking forward to seeing Elam again. Please pray that he will cooperate. He's never been in a good viewing position and he doesn't move much, so we have a really hard time seeing his various body parts. We'll probably talk to the high-risk OB there about the hole in his heart. Please pray!

Visit to the NICU

We visited the neonatal ICU on Sunday afternoon. We talked with the neonatologist for a while and then took a tour of the NICU. The neonatologist was very honest with us about what to expect. She's been a neonatologist for over 30 years and she has only seen one triploid baby. That's how rare it is for them to survive to term. She reminded us that Elam still may not survive to be born alive. I have been very aware of this-- it's something I've thought of every day for the last 3 months. It seems that every doctor we meet (except my regular OB) wants to make sure we fully understand the seriousness of Elam's diagnosis, and so they are not hopeful or encouraging at all. But I know that the doctors are trying to be helpful and make sure we have realistic expectations.

So it was hard to talk to the neonatologist because her outlook seems so negative. She told us that because his condition is lethal, they usually try not to intervene medically. I told her that I do want the doctors and nurses to do what they can to keep him alive so we can spend time with him. She told us that they will probably not be able to intubate him because his mouth will probably be too small. So we'll just have to see how much he can handle when he's born. It's been hard for me because it seems like everyone, especially the doctors, aren't wanting to help him at all, but I do. I don't necessarily want him to be kept alive like a vegetable, but I do think we should help him if he's fighting to live. I think the doctors and nurses at the NICU will eventually do whatever we want, but I think we just might have to fight for it.

The doctor also told us that we should seriously reconsider having a c-section. Recently, I had finally come to the decision that that's what I wanted to do. It has been a hard decision-- I know there are risks and scars, and recovery is a lot longer. But it looks like Elam will still be breech and regardless of his position, a vaginal delivery could be too stressful and kill him. The neonatologist told us that there are a lot of risks for me and our future children if I have a c-section. She really thought that a c-section would be a bad idea, even if Elam is still breech. This was also discouraging for me. I think she was just very opinionated, like many people are, about how birth should be. I'll ask my regular OB if she thinks I should reconsider, but otherwise, I think I'm going to stick with my decision.

She did tell us about some things that were helpful and encouraging. They will be assigning us a nurse just for Elam while I'm recovering in the hospital. She'll be at our beck and call 24-7. In cases like Elam's, they will keep him with us, as opposed to in the NICU, as much as we like. They like to help the families enjoy their babies while they have them, and they try to help you preserve their memories. They have a photo studio so you can take nice pictures and they provide belongings for them to keep.

We took the tour of the NICU. They have recently remodeled and redesigned their facilities. They are very nice! They have a room we can stay in during the day to visit him if he is still there after I am discharged from the hospital. The doctor showed us a baby that was a little over 2 pounds so we could know what to expect, as far as Elam's size. The baby was so precious! It was comforting to see her. She just looked like a miniature newborn. So sweet and so tiny!

While we were at the hospital, we went to labor and delivery to preregister for admission. We also filled out Elam's birth certificate information. It was nice to get that stuff done! We'll go back pretty soon for a tour of labor and delivery.

So, overall, the experience was somewhat helpful. Talking with the neonatologist was discouraging, but the tour was nice. Seeing the tiny baby was definitely the highlight of the experience for me! We just have a lot of difficult decisions ahead of us if Elam is born alive, but I think it's worth it if we get to spend some time with him.

I have an appointment with my OB on Monday and an ultrasound on Thursday next week. Please continue to pray for Elam. We know that God can do whatever He wants with Elam's life. While I know that the most likely outcome is that God takes our little one before he is born, I also know that a miracle is not out of the question! Our trust is not in doctors, statistics, or ultrasounds, but in the Lord.

Another Update

I realized that I forgot to mention something else that I talked to my doctor about yesterday. I asked her about the hole in Elam's heart. My last ultrasound confirmed that the hole was still there and I was wondering if it would be life-threatening. I asked my doctor, but she was not sure. It depends on how big the hole is. Babies are born all the time with ventricle defects like Elam's and they're fine as long as the hole is small. If it is large, blood can flow backwards in the heart, which would lead to heart failure. So I will ask the high risk doctor about it at my next ultrasound. Please pray that the hole will be small, or better yet, that it would heal completely.

Also, I have another update since yesterday. My doctor called me last night after hours to let me know that she had talked to the neonatologist and that the neonatologist would be calling me in the next few days to set up a time to visit the NICU. I am very blessed to have a doctor who is so helpful, even after hours! I didn't expect to that she would contact the neonatologist so soon. To my surprise, the neonatologist called about 15-20 minutes later! She was very kind and told us to come any time on Sunday. She wants me to have the doctor's office fax over all of Elam's records so they will be prepared for him. Another blessing! I'm very grateful to be working with yet another person who is so helpful. It is very nice to know that they will be completely informed and ready for Elam if he is born alive. Please pray for our visit to the NICU and our time with the neonatologist. This will be a great chance to ask questions about decisions we may need to make and any other ways we need to prepare. And it will be good to be able to see the NICU and know a little more about what to expect in case Elam needs it.

Doctor Appointment Today - 31.5 weeks

This morning I had another doctor appointment. Elam's heartbeat is still good. Last week, I noticed that I had finally gained a total of 10 pounds. I've had a hard time gaining weight, so it was exciting to finally reach the 10-pound mark. Soon after I noticed that, I suddenly gained another three pounds! It seemed to happen in just one day. I was a little concerned about that because rapid weight gain can be a symptom of pre-eclampsia, but the doctor said that it was probably fine. My blood pressure still looks good and I haven't had any other symptoms. So I'm excited to finally be gaining some more weight!

The doctor is going to call the neonatal intensive care unit at the hospital to arrange a time for us to take a tour. It will be a good time to ask questions about any decisions we may have to make once he's born if he is born alive (such as any life support we may or may not want him to have). I'm looking forward to this time so we can feel a little more prepared in case Elam does survive for a little while.

Elam has still been moving some. I can tell he's usually still sitting very low in my pelvis, but I have been feeling movement every day. I'm not sure if I'm feeling distinct kicks... I'm having a hard time distinguishing them from normal tummy-rumblings. But it is nice to still feel him move (pressure in different parts of my belly) every day.

I'm 31 1/2 weeks now. As I get closer and closer to my due date, it's exciting and scary all at the same time, thinking about what is in store for us very soon. I'm very much looking forward to meeting our little Elam, regardless of the circumstances. I've been thinking about him so much-- I'm excited to finally be able to see him, hold him, and kiss him. I was concerned for a long time about how I would react when I saw him, knowing that he has so many visible birth defects, but as time goes by, I care less and less about that and more and more about just holding and kissing my baby boy. Of course, I would absolutely love for him to be born alive so we can spend time with him.

Please continue to pray for Elam's complete healing and that we would be as prepared as possible for his arrival. Thank you!

Ultrasound

We had our ultrasound today, this time in the afternoon, hoping that Elam would be awake and more cooperative. No such luck! He is still in the frank breech position and he's very low in my pelvis. So he was not easy to see. The ultrasound was fast, just mainly checking his measurements. He weighs about 1.5 pounds now. He's about 5 weeks behind in his size. We could see a front-view of his face, but we didn't get a good view of much else. I asked about his heart and brain, so she tried to check on those. She couldn't get a good view of his brain. She explained that it is hard to see the brain well once the bones in the skull have calcified more. When she checked his heart, she could immediately see the hole in his heart. It did not appear to have improved.

I think that's all we learned today. We're feeling pretty good about the ultrasound. We've come to expect that with his disorder, he will continue to get a little more behind at each ultrasound. So learning that he was another week behind was not surprising. We just enjoyed seeing him and hearing that he now weighs a pound and a half. I'm not sure that we are going to post the video of the ultrasound online. It's very short and hard to see. We have another ultrasound scheduled for four weeks from today. Thank you for your prayers!

Doctor Appointment Today

I went to the doctor today. Elam's heartbeat was a little slower than the average baby at his gestational age, but the doctor didn't seem too concerned about it. When I have checked his heartbeat recently at home, it's usually been in the normal healthy range. Once it was slow like it was today and another time it was a little faster than normal. She did seem a little concerned when I told her that I haven't been feeling him kick very often, but I had been feeling pressure where he is in my belly. She asked me if I had had any on a list of labor symptoms, but I hadn't. So she didn't seem too concerned about that either. I asked her when she would plan to do a c-section if Elam survives to term. She said that we'll probably schedule it during my 39th week, so he has as much time to develop as possible, which is particularly important for his lungs.

I have an ultrasound on Thursday. Please pray that Elam is in a better position this time. I'm not as concerned about him being breech because it seems that I'm going to most likely have a c-section no matter what, but it would be nice to be able to look at all of his body parts and see how they're doing. We've had a particularly difficult time seeing his hands and feet in the last ultrasounds, so it would be nice to actually get a good look at them, as well as all his other features. I'm not sure if this will be an in-depth ultrasound. Hopefully it will be, or hopefully we'll have one of those the next time, so we can see how his brain is doing and if the hole in his heart has improved or worsened.

Please continue to pray that Elam would remain as healthy as possible. I'm hoping that the fact that he hasn't been kicking consistently and his slower heartbeat aren't a serious cause for concern. Thank you for your prayers! I will post an update on Thursday about the ultrasound.

Weekly Update

I did not go to the doctor today, but I wanted to write an update for the week anyway. Not much has happened since my last update. I felt Elam kicking last night for the first time in a while. Ben got to feel it too! I can tell he's still been moving because I still feel pressure in different parts of my belly, but I hadn't felt distinct kicks for a week or two.

Last week was encouraging for me. Hearing that my doctor expected me to go full-term was really nice to hear and some other people also had some really hopeful things to say. So we're starting to think about what we may need to do to prepare in case he does survive for a little while. We'll probably begin preparing once I get to 32-34 weeks.

I have a doctor's appointment next Monday and an ultrasound next Thursday. I'm looking forward to my ultrasound. Elam has not been in a very good position for the past few ultrasounds. Please pray that he's in a better position so we can see him clearly.