Monday, December 15, 2008
Losing the Jakester has brought up some questions when it comes to truths that I believe or thought I believed or do believe, but it looks different than what I thought. =)
Interestingly enough, what brought up one of my ponderings, was a Jehovah’s witness who knocked on my door and presented me with a little pamphlet with several questions and answers. One addressed the question of where God is when bad things happen. She used a hypothetical example of a baby dying and people saying that it was God’s will and maybe he just needed another angel. (Ironic, I know!) She proceeded to tell me that something like that is not God’s will. I just smiled and nodded, but the wheels started turning. I guess I started just really thinking about the difference among God’s plan, God’s will and God’s omniscience. Then, like the next day, I was talking with a friend who experienced the loss of a good friend in Afghanistan a few years ago. When she was describing the events leading up to his death, it seemed evident that it wasn’t just random chance that he was killed. After much discussion, we came up with some conclusions.
These were things I was thinking about maybe a month or so ago. Then I was talking with another friend and she mentioned things happening for a reason, which is something I typically tend to say or think too, “everything happens for a reason.” However, that doesn’t quite sound right if you think about there being a “reason” for your baby dying. I mean, mostly because that sounds like God made it happen. It turns out there is a big difference between “caused” and “allowed.”
So here's my new philosophy:
Now, I don’t for a second think that God killed this man in Afghanistan or planned for Jacob to be born in such a way that couldn’t sustain life. I do believe that God wants the best for His people and wants them to be whole and healthy and happy. I believe that He is sad when we hurt. So were those things supposed to happen? God could have healed, he could have intervened, but for whatever reason, he didn’t. Since he knew that these things would happen, he worked them out to fall into place with other future (and past?) things. So, I guess these tragic incidents are in the plan, but I don’t think they were planned…if that makes any sense whatsoever. It’s kind of like Judas betraying Jesus. God didn’t plan for him to or cause him to betray him, but since he knew that he would, he orchestrated things beforehand to work out that way. (This all makes more sense in my head than when I try to explain it.) So to recap, God could've healed Jacob, but didn't. For whatever reason, Jacob was made the way he was and God allowed that. Having known that this would happen all along, God orchestrated other events that he knew would also happen to make all of this craziness fit together somehow. So there will be good things that come out of it, but God didn't like need Jacob to die to work other things out (for a "reason").
So this leads me into my next pondering…prayer. Another friend (who also lost her baby this summer, which is how we became friends) and I were talking the other night. We were discussing prayer and wondering if there is really any point to it. Now, throughout the pregnancy with Jacob I read lots of scripture dealing with prayer. So I do believe that God wants us to pray and to present our requests to Him and to even be persistent. So I do continue to pray, yet I can’t help but wonder if it really matters b/c whatever is going to happen is going to happen regardless if I pray about it or don’t pray about it, right? I.e.: a mother, a father, a family, a church family, a community, strangers pray their hearts out for a good prognosis, for a miracle…to no avail. Now I know that God can’t just answer every prayer with a yes. I know that all of those prayers brought all of those people in closer communion with God. I felt the power of those prayers as God lavished His peace on us. However, those prayers did not change the outcome of what was to happen. So in writing this and processing it more as I write, I guess I am seeing that prayer is maybe not so much about the end result, but about the relationship and the meeting with God. And I guess another question is presented, which is, can/do/have prayers ever “changed God’s mind?” I think there are a couple examples in the Bible of God acting (or not acting) based on the pleas of his people, but for the most part it just seems like it’s already all mapped out, so brings me to the original question: What’s the point? …which I already answered earlier..b/c God wants us to and it brings us in closer communion with Him. I could drive myself crazy!!! Despite my lack of a clear cut answer, I will obey and I will continue to pray, don’t worry. =) I just thought I’d share some randomness that I’ve been thinking about lately.
…And we are doing just fine. Still miss the boy, still sad from time to time, but doing well…
Tuesday, October 7, 2008
Well, here we are, two months later. I don’t know if losing a baby ever “gets better.” I think it just gets different.
I guess after two months now, it seems a bit less surreal. I think it has sunken in more that I really had another baby and he really died, even though it is still strange b/c it was such a brief moment in time. At first I would be really sad whenever I would think about the day we had to say goodbye to Jacob and just how sad all of that was in and of itself. Now it’s more like I just randomly get sad for no specific reason. I could be fine one minute and then the next just feel sad. Weird…
I also realized that even though I know (I think) Jacob is in a perfectly great place, there is still this mama part of me that wants to make sure he’s taken care of. Like sometimes when I pray, I ask God if he’ll hold and rock Jacob for me. And even though I know that he isn’t really at the cemetery and it’s just his body, I feel like if we left Muncie that we’d be leaving him behind. I know that is kind of silly, but I’m just telling you what goes through this mind of mine. =)
There is also this anxiety when it comes to being in public or attending some event. I haven’t let this keep me from doing things, but sometimes right before I arrive somewhere, all of a sudden I realize that someone might ask how my summer was or how many kids I have or maybe remembered seeing me pregnant. I don’t want to just drop a bomb on someone and be Debbie Downer, but I also don’t want to not acknowledge Jacob’s life. So sometimes it’s hard to know how to answer those questions.
Sometimes I’m just so over being sad. I know it’s okay to be sad and I can’t help being sad and it’s perfectly understandable as to why I would be sad, but I just get sick of it sometimes. I also feel like I’m now known as “the girl whose baby died.” This could all just be my perception, but I want to still be able to be viewed as a normal person whom it just so happens lost a baby. I think that people aren’t sure what to say. Should they bring it up or should they not? Will it make me sad? If you are one of those people, I completely understand and I would probably be the same way. I am actually really bad at ever having anything “good” to say when it comes to comforting someone. I’m always at a loss for words and frankly just don’t know what I could say. Some people are just naturals at that. If you are not a natural, like me, here is some insight as to how I feel about such encounters: 1. It most likely won’t make me sad if you bring up Jacob or ask how I’m doing. I actually don’t mind answering questions and doing so even helps me process how I am actually feeling out loud. 2. I like to be able to reference Jacob or talk about him just like I would any other kid of mine without it being like he is a taboo subject. 3. Not that our time together always needs to revolve around this topic, but not acknowledging it ever makes me wonder if the person felt it would just be too awkward or were worried about my reaction or if he/she just didn’t care enough to ask.
We officially decided on a grave marker. It will be much nicer having a marker with his name and not just a little patch of newish sod. It should be installed before fall is over.
If you’re interested in the medical stuff, read on, if not, you can skip this. =)
I called this week to ask about the autopsy results. We basically didn’t get a whole lot of new information. There were some “puzzling” things, as the doctor put it. The most common reason for hydrocephalus is a narrowing or blockage in the aqueduct b/w the 3rd and 4th brain ventricles and is what we all presumed was the reason for Jacob’s because he didn’t have any signs that come with the other reasons for hydro . However, the autopsy showed that the aqueduct wasn’t too narrow or blocked. So we just don’t know what the cause was, which is weird. Another puzzling thing was that he had iron deposits in his liver. The Dr. said he’d never seen this in a baby and was usually only seen in people with anemia that have had lots of blood transfusions and get an overload of iron. Also, his brainstem was fully formed, but the doctor thought that all of the pressure from the fluid probably caused it to not function properly which would mean it didn’t tell the lungs to do the breathing movements in utero which led to the lungs being small/underdeveloped. They’re still going to look into it a little more and run it past some genetic counselors and see if there was some “global” condition he had that all of his anomalies were linked to. Since there are so many unknowns, we still don’t really know if it is genetic and what the chances of having another baby with similar issues. And to be honest, in my mind, I don’t really think about that too much b/c: A.) We’ll just trust God and B.) I think that the chance is totally worth taking if we did have another healthy baby. We were anxious to hear the autopsy results, somewhat out of curiosity and somewhat for future kids. I guess we’ll just have to settle for maybe never knowing and that’s okay. (Since then another genetic counselor called and said they still couldn’t come up with anything.)
Wow, so that was a lot of info and a LOT of different topics. Maybe I should post more frequently so there won’t be information overload!!!! I guess we just weren’t sure whether to keep this blog going or not. . .
Monday, September 8, 2008
I had sent a couple of little wallet sized photos in a couple of the thank yous to the doctors and nurses. I know that they have photographers come in, but I don't know that they actually ever get to see the photos that are taken. So, I'm really glad that they'll have something up about NILMDTS now since it's such a great organization. We're soooo thankful to have those memories of Jacob captured and now hopefully more parents in our situation will be blessed in that way also.
Monday, August 11, 2008
I’m surprised by how much I miss someone so much that I really never even got the chance to know. I barely got to hold Jacob, but I miss holding him and miss his sweet face. I’m so thankful for the photos that were taken that I have to remember him. I often wish he were here and I had the chance to raise my second son and that we were going to get his one month photos taken. I am also reminded, however, that I really don’t even know what the quality of his life would’ve been like if he would’ve made it. I wonder if it would be more difficult to have him here with me but not get to communicate and interact with him than for him to not be here at all. This gives me perspective and helps me understand our merciful God a little more. I am comforted by the fact that God has Jacob with Him where he is now whole instead of him possibly living on this earth bound by a brain and body that didn’t function properly. I was checking on the hydrocephalus chat board the other day and there was a mom who had posted about her son throwing up (indicating a shunt malfunction) and having to take him to the hospital right away. His ventricle had collapsed and he had to have an external shunt temporarily and the possibly two more shunts placed. Even though I miss Jacob, reading about that made me thankful that I don’t have to go through all of that panic and worry and that my baby doesn’t have to go through all of the pain and surgery (even though I would’ve done it in heart beat if I had the chance). It’s such a strange phase to be in. One of longing for what I can’t have, yet accepting that I don’t have it (him) because I know this is how it’s supposed to be.
I guess the point of this blog entry is to give a little insight on how I’m doing. For the most part, I really am doing pretty well. I’m generally in good spirits and enjoying this new life although a piece seems to be always missing. I have a beautiful, sweet little boy that I’m grateful for and a wonderful, caring, fun husband. Water leaks out of my eyes way more that it ever has and I sleep on a wet pillow a few nights a week. Other than that, things are pretty “normal.”
This weekend my sisters-in-law came to town and planned a special day of pampering. Lunch at Tea in the Country, facials, manicures, girl talk. . . It was a nice relaxing day. We then had dinner and cake for Scott’s 29th birthday! It was great to have them here and to help me not think about the fact that Jacob would’ve been one month old. Everyone has been so sweet and thoughtful in the different ways they have encouraged us and gone out of their way to make us feel special and loved. We are ever so grateful.
Sunday, July 20, 2008
Eulogy for Jacob
Thirty-three hours. That’s about how long Jacob was with us. He never let out a sound, yet his presence had a profound impact on family, friends and strangers. Reflecting on the past week, I found myself amazed that a life that is measured not in years or months or even days, but in hours, could bring about so much emotion. Jacob brought out our love and our sorrow; our hope and our fear; our sympathy and our empathy. He brought out the prayer of those who would never see him and the compassion of those who were blessed to meet him. I saw the tears from friends and coworkers at the mere thought of losing this precious child. I saw the love of parents for their own children as they heard Jacob’s story. I read the words of encouragement sent to Scott and Kira as they dealt with this difficult circumstance. I saw people reaching to God to help them understand and cope. I realized that Jacob’s life brought about an outpouring of faith. The extent of Jacob’s impact, or rather God’s impact through Jacob, has been far reaching and powerful. As the news of Jacob’s condition spread, I witnessed the outpouring of words of faith in God’s reasoning; faith that God had big plans for this tiny little boy’s brief life on earth. As we reached for God’s guidance and for clarity in understanding His design, we prayed for His influence on the doctors and hospital staff as they cared for Jacob. Ultimately, we prayed for peace for Scott and Kira as they began the grieving process. We prayed that they would find a sense of comfort in their time of despair. Isaiah 49:13 tells us “…the Lord has comforted His people and will have compassion on His suffering ones.” God will comfort us in the sorrow and sense of loss that so overwhelms us in times of grief. Many of us sought the reason for all of this. How can this be right? How can God’s plan take this life away from such loving parents? In His compassion for His people, God seemed to present a glimmer of understanding after Jacob’s passing. The news that, in spite of his weak state, Jacob’s heart was strong. Strong enough, in fact, to be used to save the life of another parent’s child. Maybe this was the “why” that we all sought. Maybe it was only part of the story. Certainly, it was an answer that was needed to comfort Scott and Kira. Of course, this doesn’t erase the pain, but it reminds us that God’s plan is right and is often just too big for us to comprehend. I have taken from this the belief that we can all find a reason in Jacob’s story. For some, it has brought renewed faith. For others, it has brought appreciation for family and loved ones. Jacob’s life and how Scott and Kira have dealt with his death have drawn many to grow closer to God and, hopefully, inspired some to discover God’s love. For me, it has driven a stronger sense of purpose and a greater connection to God and family. It is my hope that everyone who has been touched by Jacob’s story will find the answer that they seek and use the experience positively. Let Jacob’s time with us be a catalyst for growth, understanding, compassion and faith. Let it drive us to care for those around us. Use it to help make a difference in this world. By trusting in God’s plan for Jacob’s life, we can honor his memory for more than mere hours. By finding strength in Jacob’s story, his memory can live for a lifetime.
God has a plan, and His will is right.
We hold these promises as true,
But oh how our souls become heavy
With just the thought of you.
We saw your precious nose and lips
And even held your tiny little hands,
Yet you were only ours for a time
In this world of ever-shifting sands.
While we waited to hear the outcome,
God held your heart so strong.
He knit you with precision,
For His plan was perfect all along.
Our precious baby Jacob
Into this world you came
To give amazing gifts to others.
God knows each and every name.
With heavy chests and sobs of sorrow,
We consider our great loss,
But our eyes are turned toward heaven,
Where we find peace in He who endured the cross.
Thursday, July 17, 2008
There is much we could write about today, but we'll leave you with the words that we tried to speak to those at the service.
Thank you for being here and walking through this with us. When we think about losing Jacob, we are heart-broken over the hopes we had for his life… getting to see him grow up with Brody, seeing his personality develop, which one of us he would more closely resemble, and the kind of man he would one day become. We will always wish we could have had more time to know him, and we will always wonder, what if.
Yet, we are so thankful for the 33 hrs that we had. We are grateful that he held on through nine months of pregnancy so that we could meet him, even in his imperfect state. We are grateful that another child my have life through his donated heart valves.
We are grateful to have loving and caring family and friends at our side. You have given us overwhelming support, prayerful encouragement, and perspective. Often, it has been your acts of selfless compassion and sympathy that have brought us to
Yet, as amazing as this support has been and as grateful as we are for family, friends, even this church, we know that it would all fall short if we did not have an abiding faith in and relationship with Jesus Christ. It is the truth of His word that gives us hope. Even in our sin and shortcomings, our questions and our doubts, He remains steadfast in His grace, and it is the promise of eternity laid out in His Word that brings us great joy for Jacob. He has been set free from the long list of challenges that bound him on earth, and one day, we will join with him again and have all of the why’s of God’s sovereign plan unfold before our eyes.
Thank you being here to meet and say goodbye to Jacob.
Monday, July 14, 2008
Calling/Visitation: 11am - 1pm, Thursday, July 17th at Muncie Alliance Church
Memorial Service: 1pm, Thursday, July 17th at Muncie Alliance Church
Burial: Immediately following the memorial service at the Gardens of Memory Cemetery.
*Muncie Alliance Church is located at 5601 W. Jackson St. Muncie, IN 47304
*Gardens of Memory Cemetery is located at 10501 North State Road 3 Muncie, Indiana 47303
Sunday, July 13, 2008
Saturday, July 12, 2008
Friday, July 11, 2008
Once pulled from his mother’s womb and away from his source of oxygen, his heart stopped. Immediately, the doctors resuscitated him, and as their machines began to breathe for him, his heart came back strong.
In the span of a day, it became abundantly clear that Jacob lacked both the lung and brain stem capacity needed to sustain life. So yesterday, our friends and family each had the opportunity to meet, pray beside, and say goodbye to Jacob. His grandparents then gathered with us and a pastor/friend as we asked God to gather little Jacob into His arms. Kira and I stayed back to say our private goodbye, and as we comforted Jacob in our arms, the sweet nurse tearfully withdrew life support.
Our hearts are so broken to let go so soon, but there is joy and peace knowing God’s promise for Jacob and the complete healing that awaits him.
Later, Kira and I were alone in our hospital room when we received a phone call. A man on the phone from the tissue bank explained that the valves of Jacob’s strong heart could be donated for use in as many as two to three heart-sick babies. We gladly agreed to this donation.
…While we would not begin to assume or understand God’s plan behind Jacob’s short time with us, it was a timely encouragement for us to know that Jacob’s steadfast heart may give life to others.
Your prayer and encouragement continues to give us strength in this sad time.
We rejoice, too, when we run into problems and trial, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God love us, because he has given us the Holy Spirit to fill our hearts with his love. (Romans 5:3-5)
Thursday, July 10, 2008
...A friend shared this vision with us yesterday, which has provided much needed encouragement.
I'm prompted to share the picture I got as many of us were praying for youand the Blakely's at church tonight. Take this for what it is -shared by human who could miss God. After I had seen the picture of Jacob on your blog tonight and as we were praying for you guys at church, I saw a picture (more like a moving picture) in my mind of Jacob running around playing, having fun in a beautiful field. He looked like he does in the picture but just a larger, 2 or 3 year old version freely playing in a field. Everything in the picture was bright and beautiful and it seemed like heaven. He was joyful, fun-loving, smiling and free there. Forgive me if this is hurtful but I hope that it brings some peace in the journey.
Wednesday, July 9, 2008
Monday, July 7, 2008
The c-section is scheduled for 10:30am. Once they yank him out of there, they’ll give him a thorough exam while they put me back together. We’ll then be able to visit with him in the NICU. Later that day, we think Jacob will be transported about 5 minutes away to the Dayton Children’s Hospital where he’ll have a CT scan and other tests. He’ll stay the night there and have brain surgery Thursday. The neurosurgeon usually likes to wait 24 hours after birth before he would perform the shunt procedure. Meanwhile, I’ll be at Miami Valley Hospital for 2-3 days recovering from the c-section and being kept company by family and friends. Scott will be doing a little back and forth between hospitals until I’m able to join him at the Children’s hospital. …We’re really not sure how long Jacob will be in the hospital. It will all just depend on how he’s doing – his health in general, eating, gaining weight, etc. They’re guessing a couple weeks, but there’s not any way to know at this point.
While we’re in Dayton, Brody will be staying at Scott’s older brother’s house and Scott’s parents will be there to help take care of him.
We’re feeling pretty ready to move forward and see what God is going to do with all of this. Our hope is in Him, and we’ve been really encouraged by all of the support and love from everyone. I’m sure we have no idea what is in store for us, but we’ll soon find out! It’s just starting to hit me that this baby is actually going to be a real person and my son. I know that sounds a little dumb, but before you know the baby, it’s just the baby, but when he comes out, it’s a whole different story. Plus with all of the appointments and ultrasounds, the focus has been on this baby’s brain, kidneys and feet and not him. So I’m excited to finally meet this little guy, look at his face and know him.
Thanks for your support!! We’ve been overwhelmed by your prayer and encouragement.
Sunday, July 6, 2008
We were grateful to have a fun and relaxing 4th of July weekend before Jacob's arrival on the 9th!! Brody loved the fireworks almost as much as the glow stick/necklace his uncle Mikey got him. I don't know what it is about those things, but as soon as he got it he started shaking his little booty like he was at one of those rave parties. ...Then he kept saying "Whoa!" every time a big firework would go off.
...It's hard to believe the big week is already upon us!!! It will be great to meet this baby that soooo many people have been praying for. (Tomorrow we'll plan to post some more details about the week ahead.)
Saturday, June 28, 2008
Here are a couple of ultrasound pics of Jacob E. The first one is a profile at 25 weeks and the second is from just a few days ago at 37 weeks. It is just his head and it's like he's laying sideways and looking right at you (forehead on the left side of the pic, chin on the right). You can see he has fat little cheeks! =)
Thursday, June 26, 2008
Monday, June 23, 2008
Thursday, June 19, 2008
Suppose you went to a friend's house at midnight, wanting to borrow three loaves of bread. You say to him, 'A friend of mine has just arrived for a visit, and I have nothing for him to eat.' And suppose he calls out from his bedroom, 'Don't bother me. The door is locked for the night, and my family and I are in bed. I can't help you.' But I tell you this - though he won't do it for friendship's sake, if you keep knocking long enough, he will get up and give you whatever you need because of your shameless persistence.
And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened for you. For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened. (Luke 11: 5-10 NLT)
It had been awhile since we'd read this passage, and it made its way back around at just the right time. The way the New Living Translation uses the words "shameless persistence" and "keep on asking" has given us encouragement in the last week to not let up. We've had renewed fervor to keep on "badgering" God to heal our son. (and as always, we greatly appeciate your prayers as well.)
Sunday, June 15, 2008
Tuesday, June 10, 2008
Well, we've decided upon Jacob Edward. We're not really deep into the meanings behind names. At least we weren't. I think our first son's name, Brody (full name - Brodyn Isaiah), means muddy water or ditch digger.... something like that. We just liked the way it sounded. Jacob's definitely not the most original name. In fact, it's the least original name for a boy in America for the last few years running, but here's a bit of our thought process on the choice. Originally, I just liked the name. It has a timeless quality. It's strong, and I don't know a Jacob I don't like. Over time, as we found out about the challenge ahead, the name made more and more sense.
There's a man named Jacob in the Old Testament of the Bible. If you've ever read much about this guy, you may know that he is said to have wrestled with God. After we'd already been leaning heavily toward the name (Kira wasn't fully on board yet), I was calling my oldest brother to tell him about the fluid on the brain that had just been discovered. He prayed for us right there on the phone and asked God to use this trying time to drive us to wrestle with Him just as Jacob had wrestled with God. When we re-visited the account of Jacob in the Bible, at first it made me wonder why anyone would want to name their child after this man. The name actually means "deceiver," and if you make the time to read about him, you'll see what a jerk he could be. ...So why give our son the same first name as this guy? Well, after Jacob wrestled with God, God chose to bless him out of his grace alone. Jacob was as human as any of us in his sin and in his faults, yet God chose him out of his grace and blessed him in a huge way. God transformed Jacob's name into the name Israel, and he became the father of the 12 tribes of Israel (Yeah, kind of a big deal). It's our prayer that God, out of His grace, would choose our son as his own and bless him to have an eternal impact on the lives of others.
The middle name, Edward, is a family name. It was my grandfather's name, and it's my dad's middle name as well as the middle name of two of my brothers. Some how, I got the shaft with the middle name of Allen. My parents still can't come up with a reason why they gave me that middle name. However, I'm convinced they were stumped for a name and either saw the name on a mini-carton of milk (Allen Dairy) at the hospital or saw it on the birth certificate (Allen County). So I feel grateful that Kira let me give one our kids the middle name I never had.
...This is random, but when we first got married, we would always map out our lives together with the four names we both loved - two boy names and two girl names.... a nice even number so that no one gets left out at Cedar Point. Well, 6 years later, our tastes in names have changed, and although the "mapping" out of our family was somewhat of a joke, we've been learning a great deal lately about whose plan really matters. We're so grateful to know this truth and to have trust in God's plan for us and our family.
Sunday, June 1, 2008
To give an idea of what all the fuss is about, here's an image of a "normal" fetal brain (courtesy of google images) on the left and our unborn baby's brain on the right. All of the black area is where the spinal fluid has built up and pushed the cerebrum out to be just a thin ring around the outer edge of the brain. Normally, there would just be two small black areas of ventricles, so you can understand why the level is considered severe (and why we're praying for a miracle). It's amazing that our neurosurgeon has seen success in cases even as severe as this. Once the shunt is implanted to regulate the fluid, often the resilient fetal brain will "reconstitute." Also, you can't tell very well in this picture, but, thankfully, the other important parts of the brain (cerebellum, brain stem, etc) seem to be doing OK. ...Praying for a miracle! It will be cool to see how God works in/through our baby.
...Next Dr's visits are June 10th and 12th. On the 10th we'll have an ultrasound check-up in Muncie, and on the 12th we'll go to Dayton to meet with the perinatologist who will deliver the baby.
...At some point soon, we plan to post the name we have picked out, and why we chose it. (The big reveal!) That way we won't always have to type out "our unborn baby" every time we refer to him on this blog:)
Thanks for your continued interest and support!
Monday, May 26, 2008
Friday, May 16, 2008
We had a different ultrasound technician and perinatologist this time. The perinatologist (aka, Dr. Doom) gave a pretty bleak prognosis. Not only is the fluid level very high, but now the kidneys are measuring bigger than normal. This combination of severe hydrocephalus, club feet, and now enlarged kidney’s, led that Dr. to describe the situation as “disturbing,” and he thinks it may all point to a syndrome. (Although the amniocentesis and Microarray tests ruled out any chromosomal syndrome, there is still the possibility of a genetic syndrome.) He said if our baby survives at all, it doesn’t appear he would be able have much of a mental capacity. ….Hearing all of this left us confused and a bit numb, but we were late for the next appt. so off we went.
Next stop - Dayton Children’s Hospital…. Our hope level was bottoming out when we got to our appt. with the neurosurgeon. However, he offered encouragement. Dr. Kleiner explained his experience with treating hydrocephalus and what he’s witnessed in brains like that of our baby. Once a shunt is implanted and the fluid begins to drain, the fetal brain has an amazing capacity to “reconstitute” itself or begin growing and expanding. The baby’s development would be slower than that of the avg. kid, but there is still much hope to be had.
So where does that leave us?? How can two Dr’s looking at the same picture see something so different? …Driving home, we came to the realization that only God truly knows what our outcome will be. The Dr.’s each have wisdom and experience behind their opinions, but our true hope does not rest in their hands. It can only be placed in a God who we believe to be Author and Perfecter of life. As cliché and as crutch-like as it may sound, His plan is perfect and He’s faithful.
Please pray with us that we would be prepared for whatever may lie ahead.
(For anyone who may not know, we had an ultrasound a week and a half ago and found out we’re having a boy, but the doctor was concerned that there was too much spinal fluid on the brain so he sent us to a perinatologist to have another, more in depth ultrasound done. )
Well, we had our doctor’s appt. today in Dayton, so we thought we’d give everyone an update on what’s going on with Zicklet #2. The spinal fluid in the ventricles was still pretty high and indicates hydrocephaly (fluid on the brain). The most likely cause of hydrocephaly is that the aqueduct that lets the fluid through is very narrow or blocked. Although we don’t know the cause for sure, the most common way of treating the problem is by putting a shunt in the brain once the baby is born which will continually drain the excess fluid off of the brain to another part of the body where it can be reabsorbed. The doctor said that the prognosis is still good and that the fetal brain is very resilient. Of course there is a wide range of outcomes and brain damage is still a concern. Right now the baby’s head is normal size and will hopefully stay that way. If the fluid and pressure increase, it could potentially cause the head size to expand. So far the doctors say it appears not to be a syndrome or chromosomal disorder, which is a good thing. We haven’t gotten the genetic test results from the amniocentesis which will be a better indicator if there is a chromosomal problem. They also found on this ultrasound that the baby has club feet (which means they are kind of curved or turned inward). This could be related or unrelated to the hydrocephalus. The doctor said it is pretty easily remedied with casting and/or surgery within the first year.
So I guess the next thing is to talk with my OB and make a plan. We’re just waiting to for the amnio results and will meet with a genetic counselor and also will need to meet with a pediatric neurosurgeon. They’ll probably do periodic ultrasounds to monitor the fluid levels.
This has all been a lot for us to take in us over the last couple of weeks, and it has been tough. There have been waves of sadness and anxiousness, but overall, we can honestly say that we have trust in God and his purposes in all of this. We’re so grateful to have Him and a close circle of friends and family who have already provided us with support and encouragement. There’s a long road ahead, and we’d greatly appreciate your prayers (that we would be able to take this one day at a time/minimal or no brain damage/discernment in upcoming decisions/wisdom of the doctors/stuff like that).
Thanks for taking the time to read all of this.
-Scott & Kira