On Thursday, Hope and I made our last trek to St. Vincent in Indy. It's kind of sad--we have been very happy with the care we have gotten at St. Vincent (with the exception of Dr. Doom-and-Gloom, whom we never saw again), and would recommend it over other places in a heartbeat. I have also gotten to know the St. Vincent campus pretty well, so I'll have to work at learning the ropes of a new place out in New Jersey. We're thankful, though--thankful that Hope is healthy enough to move, thankful that David has a job he's looking forward to in the fall, and thankful for modern medicine.
Hope and I west up to see a pediatric neurologist, Dr. Pappas. David and I had met with Dr. Pappas in the hospital after Hope was born, but all he was able to tell us at that time was that he had no idea how Hope was going to do. He said that seizures and cerebral palsy were likely, but only time would tell. His game plan was to watch her developmental milestones to see what was going on with her brain. He said 3 months would be the earliest he'd like to see her to asses how she was doing. So when we went on Thursday, he went through a checklist of milestones, asked tons of questions, and examined her pretty thoroughly. His end conclusion? She's doing great!
She is not, however, 100% normal. For those of you who do not see her every week at church (and maybe even some of you guys who never see her outside of the Moby wrap :), she does not have the muscle control that she should. She cannot lift her head, and when I hold her upright, she will only try to balance her head for seconds at a time. She does not play with her hands, and does not reach for toys. She will not support her body weight on her legs like a normal newborn will do. When I talked to Dr. Pappas about this, he said that she has something called "poor tone." He said that it is to be expected with an encephalocele baby, and he glanced over it pretty quickly, like I should know what that is. I had no idea what it was, but I have been figuring it out since then. Between google and a friend at church who has three adopted children with this problem, I feel like I've learned a fair amount in the last few days. Poor tone is a neurological problem. It is not simply a case of weak muscles, where work-outs (or in this case, therapy) would help them grow stronger. Something in her brain has made it so that her muscles do not work the way they should. There are varying degrees of this problem, everything from slight clumsiness to paralysis. So for Hope, it explains why her eyes cross a lot, why she has reflux, why she's not holding her head up at all, and why we have given her the nickname "Floppy." The good news? It's not nearly as bad as it could be. She does track with her eyes, even though they cross a lot. She will focus on your face, and she smiles. She does move her arms and legs, but when she relaxes them, they feel like noodles. The other good news is that therapy can help this significantly. Lord willing, she will learn to sit up and walk just like other kids, but it will probably take her longer. This is something that she will have to deal with throughout the course of her life, probably in lots of ways that we can't foresee right now.
In everything else, Dr. Pappas was very happy. He said that she is doing much better than he would have anticipated. From here, we just wait and see what happens next--get her evaluated at 6 months and see if we know any more about how she's going to do.
Whatever happens, things will not change around here (in one sense,anyway:). The big kids love her to pieces. The biggest ones sit and talk to her, waving her arms around, laughing at her funny hair, and giving her kisses. Rose runs up to her in the morning and says, "Ope! Ope!" She was given to our family, and we are already overwhelmed by how much we have learned by having her with us. She will continue to cause us to grow in compassion and love, and we will continue to love her and care for her in the best way that we know. We love you, Hope!
Saturday, July 9, 2011
Monday, July 4, 2011
Carver @ 8
Carver is turning 8 today! I can't believe how it has flown by. We started off the morning with presents after breakfast (because what fun is a birthday if you can't spend the day playing with your stuff??!) He got this cool skateboard-thingy, some water guns, a new sprinkler to run through, an addition to his snap circuits kit, and some books. Sadly, all of the books are taking an extreme backseat to all of the cool, hands-on stuff. He spent about a half-hour playing water guns with his sisters, and the rest of the day he has spent mastering the skateboard. He's already improved much more than I expected--he can make it all the way down to the end of the cul-de-sac without falling off. Very impressive.
We'll finish off the day with spaghetti & meatballs, banana bread, and taking chocolate cake to the church gathering to watch fireworks. Happy birthday, Carver!
We'll finish off the day with spaghetti & meatballs, banana bread, and taking chocolate cake to the church gathering to watch fireworks. Happy birthday, Carver!
Wednesday, June 22, 2011
She truly is our miracle baby!
When we first learned that Hope had an encephalocele, I wondered how I would be able to see the love and kindness of God in this situation. When one feels pain, you want to lash out at everything and everyone around you, and wonder why God has done this to you. I prayed that I would see our lives in the light of eternity, and that I would not grow bitter. And, praise be to God, He has shown me His love and kindness, even in the darkest moments. The past two days, He has shown me how much He cares for me, for our family, and for Hope.
We went back to the neurosurgeon yesterday for a followup. Hope had an ultrasound for her brain done first, so that Dr. Young could compare the ultrasound we had in the hospital after her surgery to where she is currently. Just as a reminder, they were doing the ultrasound to measure the size of the ventricles in her brain. These are the open pockets in your brain where cerebral-spinal fluid is stored. If there is a drainage problem, the fluid will build up, putting pressure on the surrounding brain tissue, causing damage if not treated--this is what hydrocephalus is. When we were in the hospital, the measurements of the ventricles from the ultrasound showed that her ventricles were on the large size of normal, but not abnormal (which is what every ultrasound before she was born showed as well). When we went in yesterday, the ventricles had decreased in size just a little bit! What a total miracle! Dr. Young checked her over, felt her soft spot, and said that he does not see a single indication of hydrocephalus. David and I were completely flabbergasted. I had thought that we would go in and he would tell us he wanted to do a shunt in 3 days, much like he said the last time about getting her encephalocele removed. Instead, he gave her a clean bill of health! How amazing! He also told us that if she had hydrocephalus, it would certainly have shown itself in this appointment--he believes that she is unlikely to develop it at all. As a precaution, though, we will continue to see a neurosurgeon in NJ. We gave him the name of the nearest hospital to where we're moving, and he had his scheduler call them up and make a follow-up appointment out there for 2 months.
Deep in unfathomable mines of never failing skill,
He treasures up His bright designs,
And works His sovereign will.
Today, Hope and I drove back up to St. Vincent to see a pediatric cardiologist. Hope had been diagnosed with ASD in the NICU. ASD is a family common condition where a small hole in the valves of the heart does not close properly. The treatment is to wait and see what happens--sometimes they close on their own, sometimes they never cause a problem even though they're there, sometimes they need surgical repair. This was our first visit with the cardiologist, and I wasn't quite sure what to expect. I was all prepared to ask what kinds of worrisome signs I should be looking for, what treatment options are, etc. Instead, he told me that babies' hearts develop with this hole in the womb, and frequently if they do echos in the NICU, they will see a heart that hasn't completely closed this. That is what Hope's echo showed, but now, it has healed! Again, I was completely blown away. God has formed her, and He has seen fit to heal her little body. What a miracle. What a kindness to us.
What's next? We will see a neurologist and a geneticist at St.Vincent right before we move. The geneticist will look for indicators of some large over-arching problem, and tell us if he thinks chromosomes are involved. The neurologist will help us track her developmental milestones, and give us guidance about what the steps are if she is falling behind developmentally. Hope is 2 months old now, and she is smiling, tracking with her eyes, and interacting with you when you talk to her. She does not have the neck and head control that she should, but I think that's justified at the moment! I've been trying to think of her head control as being closer to that of a 3 -week-old, based on when we came home from the hospital after surgery. If you think of it like that, I think she's doing ok--she's moving her head around, and working on holding it up, at the point I would expect about a 3-week-old to be. We'll just keep watching and waiting to see if she catches up. Please continue to pray that she will develop normally, that her brain will compensate for the small part that is missing. But most of all, praise God with us. Praise Him for His goodness, mercy, and kindness to us and to Hope. Pray that she will grow up to glorify Him and demonstrate His power.
We went back to the neurosurgeon yesterday for a followup. Hope had an ultrasound for her brain done first, so that Dr. Young could compare the ultrasound we had in the hospital after her surgery to where she is currently. Just as a reminder, they were doing the ultrasound to measure the size of the ventricles in her brain. These are the open pockets in your brain where cerebral-spinal fluid is stored. If there is a drainage problem, the fluid will build up, putting pressure on the surrounding brain tissue, causing damage if not treated--this is what hydrocephalus is. When we were in the hospital, the measurements of the ventricles from the ultrasound showed that her ventricles were on the large size of normal, but not abnormal (which is what every ultrasound before she was born showed as well). When we went in yesterday, the ventricles had decreased in size just a little bit! What a total miracle! Dr. Young checked her over, felt her soft spot, and said that he does not see a single indication of hydrocephalus. David and I were completely flabbergasted. I had thought that we would go in and he would tell us he wanted to do a shunt in 3 days, much like he said the last time about getting her encephalocele removed. Instead, he gave her a clean bill of health! How amazing! He also told us that if she had hydrocephalus, it would certainly have shown itself in this appointment--he believes that she is unlikely to develop it at all. As a precaution, though, we will continue to see a neurosurgeon in NJ. We gave him the name of the nearest hospital to where we're moving, and he had his scheduler call them up and make a follow-up appointment out there for 2 months.
Deep in unfathomable mines of never failing skill,
He treasures up His bright designs,
And works His sovereign will.
Today, Hope and I drove back up to St. Vincent to see a pediatric cardiologist. Hope had been diagnosed with ASD in the NICU. ASD is a family common condition where a small hole in the valves of the heart does not close properly. The treatment is to wait and see what happens--sometimes they close on their own, sometimes they never cause a problem even though they're there, sometimes they need surgical repair. This was our first visit with the cardiologist, and I wasn't quite sure what to expect. I was all prepared to ask what kinds of worrisome signs I should be looking for, what treatment options are, etc. Instead, he told me that babies' hearts develop with this hole in the womb, and frequently if they do echos in the NICU, they will see a heart that hasn't completely closed this. That is what Hope's echo showed, but now, it has healed! Again, I was completely blown away. God has formed her, and He has seen fit to heal her little body. What a miracle. What a kindness to us.
What's next? We will see a neurologist and a geneticist at St.Vincent right before we move. The geneticist will look for indicators of some large over-arching problem, and tell us if he thinks chromosomes are involved. The neurologist will help us track her developmental milestones, and give us guidance about what the steps are if she is falling behind developmentally. Hope is 2 months old now, and she is smiling, tracking with her eyes, and interacting with you when you talk to her. She does not have the neck and head control that she should, but I think that's justified at the moment! I've been trying to think of her head control as being closer to that of a 3 -week-old, based on when we came home from the hospital after surgery. If you think of it like that, I think she's doing ok--she's moving her head around, and working on holding it up, at the point I would expect about a 3-week-old to be. We'll just keep watching and waiting to see if she catches up. Please continue to pray that she will develop normally, that her brain will compensate for the small part that is missing. But most of all, praise God with us. Praise Him for His goodness, mercy, and kindness to us and to Hope. Pray that she will grow up to glorify Him and demonstrate His power.
Saturday, June 4, 2011
Before Surgery Pictures
I happened to catch Rose and Hope in a cute moment the Sunday afternoon before Hope had surgery. I took a few pictures, and then I had David take some of Hope and me as well.
Wednesday, June 1, 2011
Yes, we did make it home.
I am an awful blogger. I just don't enjoy it. So that is my excuse for never putting up a 'We Made It Home!' post.
We did, in fact, make it home on Thursday. Dr. Young came by in the morning and told us that we were free to go. He said the ultrasound they did of the ventricles in her brain came back showing the ventricles slightly large, but that he wanted to wait and see what they did. We would've been able to leave immediately, but I had contacted Hope's pediatric orthopedist and asked him to come and see Hope in the hospital so that I would not have to make a separate trip to Indy. He was very obliging, and came around noon to see her. And, praise God, he said that while there is a slight click in her left hip, he believed it to be cartilage. He ordered an ultrasound of her hip just to make sure, and his diagnosis was correct. Both her hips look great--they both have very deep sockets, and there is no indication of hip dysplasia. Thank you, Lord! By the time we finished all that up, it was mid-afternoon. I finished up final paperwork, pulled the car around, and the nurse brought her out to me. We drove home through Indy traffic and pouring rain, but I was so glad to be home!
Since then, things have been normal. She's still eating and sleeping great. She's been a little cranky the past few days, but even that has been a little better today. Her incision still has a little bit of swelling, but it goes down a little more each day, and is already growing peach fuzz. Here she is, trying out her new range of neck motion with Grandma:
It has been blazing hot here recently. We went straight from cold, rainy spring to hot and humid summer. The kids and I got out the sprinkler and kiddie pool for Rose today, and they've been having a blast:
(The girl in the pink suit is our neighbor, not Ellie. Ellie is missing from all the pics because she was throwing a temper tantrum about not being allowed to turn the water on and off at her pleasure.)
Since I wasn't about to let sopping wet Carver hold the camera to take a picture of Hope hanging out with me, this is the best I've got:
We did, in fact, make it home on Thursday. Dr. Young came by in the morning and told us that we were free to go. He said the ultrasound they did of the ventricles in her brain came back showing the ventricles slightly large, but that he wanted to wait and see what they did. We would've been able to leave immediately, but I had contacted Hope's pediatric orthopedist and asked him to come and see Hope in the hospital so that I would not have to make a separate trip to Indy. He was very obliging, and came around noon to see her. And, praise God, he said that while there is a slight click in her left hip, he believed it to be cartilage. He ordered an ultrasound of her hip just to make sure, and his diagnosis was correct. Both her hips look great--they both have very deep sockets, and there is no indication of hip dysplasia. Thank you, Lord! By the time we finished all that up, it was mid-afternoon. I finished up final paperwork, pulled the car around, and the nurse brought her out to me. We drove home through Indy traffic and pouring rain, but I was so glad to be home!
Since then, things have been normal. She's still eating and sleeping great. She's been a little cranky the past few days, but even that has been a little better today. Her incision still has a little bit of swelling, but it goes down a little more each day, and is already growing peach fuzz. Here she is, trying out her new range of neck motion with Grandma:
It has been blazing hot here recently. We went straight from cold, rainy spring to hot and humid summer. The kids and I got out the sprinkler and kiddie pool for Rose today, and they've been having a blast:
(The girl in the pink suit is our neighbor, not Ellie. Ellie is missing from all the pics because she was throwing a temper tantrum about not being allowed to turn the water on and off at her pleasure.)
Since I wasn't about to let sopping wet Carver hold the camera to take a picture of Hope hanging out with me, this is the best I've got:
Wednesday, May 25, 2011
One more night...
I woke up hopeful that we would get to go home today. After an uneventful morning, Dr. Young came by at about 11. His assistant took Hope's bandage off, and he examined her head. After checking her over, he decided that he'd like to have us stay another night, just to make sure she's doing ok. He also ordered an ultrasound for her, to check on the ventricles in her brain. Her soft spot felt a little tense to him, and he wants to keep an eye on her hydrocephalus. While I'm trying to keep calm, it scares me a little. I got a good look at her incision when they took the bandage off, and it scares me a little, too. It's just such a big cut on a little person.
Be still, my soul; the Lord is on thy side;
Bear patiently the cross of grief or pain;
Leave to thy God to order and provide;
In every change He faithful will remain.
Be still, my soul; they best, thy heavenly, fridne
Through thorny ways leads to a joyful end.
Be still, my soul; thy God doth undertake
To guide the future as He has the past.
Thy hope, they confidence, let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul; the waves and winds still know
His voice who ruled them while He swelt below.
God has blessed me today--Hope has smiled at me twice. She has had an uncomfortable day since they took the bandage off, but in one of her quiet moments, she smiled at me while I sang to her. What a joyful end, just to be able to sit and sing to her.
Be still, my soul; the Lord is on thy side;
Bear patiently the cross of grief or pain;
Leave to thy God to order and provide;
In every change He faithful will remain.
Be still, my soul; they best, thy heavenly, fridne
Through thorny ways leads to a joyful end.
Be still, my soul; thy God doth undertake
To guide the future as He has the past.
Thy hope, they confidence, let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul; the waves and winds still know
His voice who ruled them while He swelt below.
God has blessed me today--Hope has smiled at me twice. She has had an uncomfortable day since they took the bandage off, but in one of her quiet moments, she smiled at me while I sang to her. What a joyful end, just to be able to sit and sing to her.
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