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.

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.

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:

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.

Improvements!

Hope and I both slept very well last night. She was only up once to eat, and I only heard the nurse messing with her once. This morning, the nurses started taking out some of her attachments. The first thing to go was the arterial IV line in her arm. It was splinted to her writst, so I was very happy to see that go.

Dr. Young came in this morning, and, among other things, pulled her ears out of the bandaging around her head. Isn't she cute? He showed me pictures on his iPhone from yesterday of Hope pre- and post-op. Her bump was HUGE, and I'm so glad it's gone!

Shortly after Dr. Young left, the nurse came in again and took her off the oxygen, so now I can see her face! (It also makes nursing a lot easier, having the canula out of her nose.)

Hope is now only on tylenol for pain control. This is great--it means that she's not drowsy or having breathing difficulties due to heavier medication. She has been awake for several hours this morning, happily lying in her bed and listening to me talk and read to her. She is nursing well, and is no longer receiving any fluids through the IV, although they did leave the saline lock in. Dr. Young said that today we'll be moving to the regular pediatrics floor, and that if all continues to go well, he'll discharge us tomorrow! Wouldn't that be a blessing!

Night in the PICU

Hope and I are alone in her room at the Peyton Manning Children's Hospital PICU. She's quietly sleeping, after finally getting a full belly. After a long day, the nurses are finally leaving us alone for more than 5 minutes at a time. I'm looking forward to some rest tonight.

We started this morning at 4 AM, leaving the house at 4:30. We arrived at our surgery check-in spot at 6. Hope was not allowed to eat after 2:30, but after a fussy car ride up, she sat happily in my arms in the waiting room, sucking on her pacifier. I made David take some before shots, just so we have something to compare the after shots with:



After calling us back and getting some vitals on her, we got to dress her in a tiny little hospital gown and spend a few more minutes cuddling with her:



At 7:45, they wheeled her in a huge adult-size bed back to surgery. Saying goodbye was very, very hard. We got settled into the surgery waiting area, and were joined by my dad and Pastor Bayly. The surgery took about three hours. It went very well. The doctor said her blood loss was minimal, and everything went exactly as he had expected it would. After about half an hour in recovery, they brought David and I back to the recovery room. We went from there up to her room in the PICU. Here she is!


She has had a little bit of a rough afternoon. When we first got settled into her room here, she had some trouble keeping her heart rate up, and there was a scare about her hemoglobin levels. Fortunately, the hemoglobin numbers were incorrect, but we did spend about an hour dealing with her heart rate fluctuations. It turned out to be the result of the morphine she was given after surgery, and once they gave her a drug to reverse it, her heart rate and breathing became much more normal. With that scare, I was not allowed to hold or feed her for a couple more hours, but at about 4, they relented and let me hold her. I held her for a half hour, and she did so well that they let me give her a bottle.

Now, with a full tummy and appropriate pain medication, she is sleeping peacefully in her bassinet. I am praying for a quiet night, so that both she and I can recover a little bit. If all goes well tonight, they should release her to a regular pediatric room tomorrow.

While today has been stressful and tiring, there has been much joy also. Hope made it safely through surgery. One of the best moments for me was looking at her straight on in the recovery room, and realizing that she looks exactly like Rose! It was also such a joy to be able to hold her normally after surgery. Thank you, Lord, for giving us good gifts!

More about surgery...

As I wrote last night, I ended up cutting the post much shorter than I had originally planned because I was so tired. So today, I'm hoping to give a little more information about the surgery on Monday.

We do not know what time it is yet. Because the doctor is coming in on a day he does not normally do surgery, there was no operating room slot reserved for him. They were going to work us in to the OR schedule, and we're waiting to hear today when that will be--mostly likely in the morning. The surgery will take about 2 1/2 hours. He will remove her encephalocele, any brain matter in the encephalocele, and then sew up the skin. He will not be putting any plates or anything to close the hole in her skull. The reason he will remove brain tissue is that the part of her cerebellum that is in the sac has not been getting proper oxygenation from blood flow, and it has been extremely pinched coming out through the opening in her skull--so it is already non-functioning. He will not be putting a plate in because she is still growing (obviously!), and they do not want to put anything artificial onto bones that are still developing. When we asked how the hole will close, he said it will naturally close on its own, once the brain tissue protruding through it is removed. He reminded us that the soft spot on the tops of babies' heads are also holes in the skull, and they naturally close over time.

She will go into a recovery room after surgery, and they will try to wake her up enough for me to nurse her. Then she will go to the ICU, until she's stable enough to be in a regular room. Once she's in a regular room, I will be allowed to sleep in the room with her for the next few days. We are anticipating 3-4 days in the hospital.

Once at home, David and I will keep an eye on her. We will be looking for signs of hydrocephaly, and the two main indicators to look for will be leaking of fluid from the incision (spinal fluid coming out), and bulging of the wound (indicating increased pressure). If either of these two happens, we will go back up to Indy, and she will have a shunt put in to relieve the pressure. We have not done any research on shunts yet, and only know what he told us: that a shunt is a lifetime thing, and it will need maintenance, attention, and replacement over the course of her life. They will not do the shunt surgery on Monday, with the hope that she might not need it. We are praying that she does not need it, but because her encephalocele has grown so much, the doctor thought it was very likely that she will need it.

The mortality rate on the encephalocele surgery is very low--they have never lost anybody in their practice. He said that because she is about 10 pounds, her blood loss will be minimal, and he was not worried about it. The shunt surgery is slightly more risky--about a 2% mortality rate. While this number is very low, we know that we can only trust in God for Hope's safety in both of these surgeries. He has seen fit to protect her thus far, and we know that He carries her in the palm of His hand.

I do have one piece of very exciting news from our visit yesterday: they measured her head circumference, and it came in at 37 centimeters. When I plugged this into an online growth chart, it came back as being the 40th percentile for head circumference. What a miracle! The last measurement, two weeks ago, was in the 10th percentile. I know that there is probably some human error in both those numbers accounting for some of the difference, but I watched the nurse measure her head yesterday, and she certainly didn't slip with the tape measure. It makes me cry to think that she has gotten so much bigger over the month, and I cannot help but praise God, who has given us one more little miracle in this process!