Graham's Eyes

Background
I took Graham to the ophthalmologist yesterday. Basically, I left with no answers and more worries. Just to catch you up... it all started after the heart surgery. When they took him off of a medicine (vasopressin - for sedation, pain, and heart rate) and he had some withdrawal. His whole body was jittery for a few hours until they gave him a dose of a similar medicine to help wean him off the first medicine. His body stopped shaking but his eyes never did. While in the hospital I brought it up several times but the doctors were not concerned (probably b/c it had nothing to do with his heart) and said to follow up with the pediatrician. Well the pediatrician visit after Graham's surgery was complete chaos as Graham screamed the whole time and his eyes didn't get discussed. When we went to the cardiologist last Monday, he was surprised to see Graham's nystagmus (bouncy eyes) and said they don't usually see anything like that and that we should take him to an ophthalmologist.

Eye Appointment
Graham was in a good mood for the exam even though we were there for 2 hours. I was so thankful for this. They examined him, then gave him eye drops to dilate his eyes and send us back to the waiting room for 20 mins., then did some more exams. The doctor didn't see any obvious issues with the various parts of his eyes. He said that the nystagmus (bouncy eyes) could be a symptom of an eye problem or the nystagmus could be the problem. Some babies are born with nystagmus. He was a bit baffled that Graham's developed after surgery. There is no way to really test Graham's vision as a 6 month old since he can't read an alphabet chart. The doc did say that Graham doesn't seem to be to focus on an object as well as most 6 month olds can. The doctor did not have any answers for us. He said he was diagnosing him as having cortical visual impairment, whatever that means, and to come back in 3 months.

That's it. No medicine. No eye exercises. Nothing. I asked. So we don't really know what is going on. We don't know how well he can see. We don't know if the nystagmus is causing damage to the eyes.

I asked if he thought it could be a neurological problem. I mentioned that Graham had some funny movements that the pediatrician wasn't too concerned about, had given us a referral to the neurologist, but we never went. He said it would be worth it to see an neurologist and see what they say. Neurological testing could likely involve putting Graham to sleep to study his brain. An eye problem is scary. A brain problem is terrifying.

Mommy's Thoughts
I was quite discouraged yesterday. We just got through the heart surgery and I was ready to enjoy life with a healthy little boy... and now his eyes. This morning I decided that I better spend some time in the Word and I am sure glad that I did.

Psalm 42:5
Why are you in despair, O my soul? And why have you become disturbed within me? Hope in God, for I shall again praise Him for the help of His presence.

Why is my soul in despair? Have I already forgotten how God brought us through the heart surgery? Surely He will bring us through this too and I will again praise Him. Lloyd-Jones says, "Have you realized that most of your unhappiness in life is due to the fact that you are listening to yourself instead of talking to yourself"? I must be like the psalmist and preach to myself, tell myself the truth, the truth of God's sovereignty and love and salvation.

I don't really know what to think or pray for Graham's eyes except that God would heal Him.

Pictures

 So sweet.

(Disclaimer: Graham usually sleeps in his nursery. He was in our bed on this special occasion b/c I desperately needed him to sleep until a certain time so he could be well rested and fed for the eye appointment.)

 

Graham wearing his sunglasses after being dilated for his eye appointment. What a stud.

Only one medicine once a day!

Ahh... and I forgot to mention that they stopped his lasix. We are down to one medicine once a day (for acid reflux)!!! Much better than heart medicine 3 times a day and having to wake a sleeping baby for it like I did for the first 5 months of his life!

Health Update

We took Graham back to the cardiologist on Monday. The doc was pleased with how Graham's heart and lungs sounded. We don't have to go back to the cardiologist for 6 months! Graham will be a year old before we go back!! We are praising the Lord for a healthy boy!

Graham weighed 15lbs 1oz. He weighed 14lbs 10oz before surgery. I do not know his discharge weight because they didn't put it in the discharge papers and they only told it to me in kgs which I can't remember. But he is eating well and gaining weight.

Graham's eyes are still oscillating constantly (called nystagmus) and the cardiologist was actually concerned about it. I was not able to get the doctors at the hospital or the pediatrician to be concerned about it. But perhaps that is because it has almost been a month since surgery and they are still doing it. The cardiologist said to call the pediatrician to get a recommendation for an ophthalmologist that sees infants. I will be glad to get his eyes checked out b/c it kinda freaks me out to watch his eyes bounce.

Graham and I went to church this past Sunday for the first time in a LONG time. Graham did great in the nursery. I nursed him in between services since he still isn't taking a bottle. I feel like such a failure when I tell people he won't take a bottle at 6 months old. We will keep working on this so momma can get more than an hour long break once in a while! Anyway, it was so good to be back in church and worshiping the Lord for who He is and for what He has done for us!

Solid Foods a Success

Graham got his first taste of solid(ish) food at 6 months and 1 week old. We gave him sweet potatoes and he liked it. He opened his mouth every time I came at him with the spoon. A lot of it came back out as he tried to figure out what to do with his tongue. Overall, I consider it a success. This opens a whole new world for you, buddy!

Some pictures:

Here we are leaving the hospital (with all our stuff). Such a good feeling!

The only UNC paraphernalia allowed in our house.

6 Month Pics:

Here is Graham's new ear to ear grin (as opposed to the previous open-mouth smile).

You can see his 2 teeth.

 He looks so grown with his legs stretched out. I am used to the baby frog legs.

"Yippee, I'm 6 months old!"

 

This is Graham's Tyler Hansbrough impression. 

You can see his 2 teeth!

"Take that, 6!"

Cutie pie.

 

Excited about starting solid foods.

 

Home Sweet Home

We came home Thursday afternoon. It was a glorious feeling leaving that hospital. Thank you, Lord! Graham is eating better, still not quite as well as before surgery, but better. He is waking about every 2 hours at night. I think he just needs some time to get used to being home. Thank you for your many prayers!

Perspective

Last week, a couple of friends came to visit us in the hospital. They commented about how positive and faithful I seemed to be on the blog. In all honesty, I have really felt the peace of God that surpasses all understanding and I have felt upheld by the prayers of many. But I have also had my moments of frustration, fear, and self-pity. I didn't want to put those moments on the blog because nobody wants to hear "woe-is-me."

The texts, phone calls, facebook comments/likes, visits, meals, gifts, and prayers from friends and family have been so appreciated. I apologize for not returning texts and phone calls as times have been busy. But know that I read every message sent and was grateful for them.

By the end of yesterday I felt like beating my head against a wall. And then I see a toddler waddling down the hallway, bald, with dad following behind pushing an IV pole. On the other end of the 5th floor is the children's cancer unit. I cried. How can I be so upset about a heart surgery and eating issues when some kids have cancer and other crazy health issues? In the room next to ours is a 6 year old who has already had multiple heart surgeries and has been here a month waiting for a transplant. In the PICU we met a family whose down syndrome son had the same surgery as Graham at one month old. We also met a mom whose son was 17 and had heart cancer. This has been no easy journey, but God has been so good to us and Graham's prognosis is very good. I will never know the rest of the story for the families we have met here but I will continue to pray that God will be near to them.

Psalm 33:16-17 "The king is not saved by a might army; a warrior is not delivered by great strength. A horse is a false hope for victory; nor does it deliver anyone by its great strength."

This additional challenge of Graham's eating has left me nothing but to pray for God to make him eat. I can put my hope in the best of doctors and medical practices but they are a false hope for victory. It is the Lord who wins wars and the Lord who heals and the Lord who makes babies eat! Thanks be to God.

Going Home

Graham technically ate for more minutes yesterday than the day before, but it was a struggle, with a few minutes here and a few minutes there. Getting Graham to eat has been more challenging and frustrating than anything related to the heart surgery. The surgery and care afterward was way more straight forward and the doctors knew exactly what to do. With eating, the doctors have little to offer medically but acid reflux medicine. The lactation consultants have offered some tips and theories. It has been difficult to know if there has been a medical problem, like stomach bug or other digestive issues, or if this is just a behavioral thing due to the trauma of surgery.

Either way, he is eating well enough that the doctors want to send us home. They basically said that he doesn't need to be in the cardiac care hospital room and that his pediatrician can help with the eating issues on an out patient basis. I think I finally agree. It is time to go home. The doctors don't have any more to offer us regarding Graham's eating and his heart is doing fine and I am ready to be in the comfort of my own home.

We should be discharged around noon tomorrow. PRAISE THE LORD. 'Tis grace hath brought us safe thus far, and grace will lead us home!

Just Another Holiday in the Hospital

Well, we were in the hospital for a week over Thanksgiving, in the ER Christmas Eve, and back at UNC for Easter. At least we get a little free parking... right? Matt and I watched an Easter service online yesterday and worshiped right along while Graham napped. It was really refreshing to praise the Lord. If it were not for our RISEN Savior, we would have no hope. God watched His Son suffer much more than I am watching Graham suffer.

Graham started eating better yesterday. He didn't have a tube feeding after 10:30am. After that he ate barely enough to skip tube feedings. Today they took the feeding tube out. They thought he might eat better without the aggravation of the tube in his nose. He ate poorly for several hours after they took it out and then at 5:30pm he ate for 7 mins. He is eating about half of what he was eating at home before surgery. They also took the IV out of his foot today b/c it stopped working. So he only has the monitors on his chest remaining!

Since the feeding tube came out, Graham has to take his medicines by mouth which is going to be a challenge. He gets lasix at night and acid reflux medicine in the morning and Tylenol as needed. I am suspecting if things continue or improve they will be sending us home soon, but they haven't really said anything about it. I am ready to go home but I am nervous about taking home a baby that won't eat.

Graham continues to have some stomach pain and frequent green poops. The cardiologists don't seem concerned and just want to give it time. The lactation consultants offer some suggestions for getting Graham to eat. I am unsure whether to push for more measures, like consulting GI docs, or whether to keep trying to feed and praying. Please continue to pray that Graham will eat and that he will take his medicines without a fight.

My parents came for a visit today. My dad, Matt and I went for walk around campus, my first time leaving the hospital in 6 days. The weather was beautiful. We also found a Chick-fil-a in a student cafe. Why have I been here for 12 days and did not know there was a Chick-fil-a within walking distance? Some friends brought us a delicious home cooked meal for dinner! My parents left and Matt went home for the night so he can work tomorrow.

Sorry for the long post. Here's a few pics to make it worth reading:

If you look closely you can see that his paci is missing the upper right corner. 

My mom cut it so it wouldn't nudge the feeding tube and make him gag.

Graham's first Easter basket! The Easter Bunny found him in the hospital!

Graham got a bunny and blanket from some volunteers.

"Dude, this bouncy seat ain't big enough for the both of us."