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!

Monday's the day!

David, Hope, and I made a trip to Indy today, the first one since Hope was born. We went to see Dr. Young, our pediatric neurosurgeon. We went into the visit hoping to get an idea for when he would like to do surgery, and wanting to ask what he thought about her encephalocele getting larger, which it has over the past weeks.

In the first few minutes, he took care of all our questions. He walked into the room after reviewing her chart, and his first comment was, "We need to take care of this." He said that the most likely reason her encephalocele is bigger is because she does have some hydrocephalus. In her case, instead of the excess fluid putting pressure on her brain and causing damage, instead the pressure is simply making her encephalocele larger. Because her encephalocele has grown, and because we will be moving in mid-July, he asked us if we would be willing to do the surgery soon rather than later. We agreed, and he went to consult his scheduler. When he came back, he told us that he will be doing the surgery this Monday, May 23. He will be coming in on his day off to do the surgery for her.

May 23 will be our 9th anniversary. It is certainly bittersweet to be doing her surgery on this day. Honestly, what we keep coming back to, though, is the fact that we have so, so much to be thankful for. We are thankful for 9 years of marriage, and we are thankful for our five children. We are thankful for modern medicine and technology, health insurance, and a doctor using his day off to help our daughter. We are most of all thankful to God, who has blessed us so much with the birth of Hope. Every day with her is a blessing, and just by saying that, we realize that every day with our other children is just as amazing. We treasure the good gifts He has given us.

Please pray for us this week. Pray that Hope will be strong for surgery and stable afterwards. Pray that we will know soon if she has hydrocephalus that needs a shunt. Pray that we would continue to give praise and honor to God in every circumstance of Hope's life.

1 Month

Hope was one month yesterday. This marks another milestone passed for her--the mortality rate for encephalocele babies is 50% in the first month. We rejoice in every day that God has given to us with her. We praise Him for his mercy to us, and ask that He will continue to give us the ability to praise Him in every circumstance of her life.

In honor of her birthday, I tried to take a few pictures. As you can see, getting five kids in the same spot, happy, and looking the same direction has its complications. But I got a few good ones, and just the progression of expressions is funny: