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."

Slow Progress

Graham nursed for about 3 minutes a couple times between Friday night and Saturday morning. Then around noon today he nursed for 8 minutes! I am holding him more upright to nurse and working hard for burps. The next feeding Graham didn't nurse at all. It is tricky trying to time nursing, tube feeding, and pumping. They resumed giving Graham lasix because he is retaining too much fluid and that makes it hard to breathe and therefore hard to nurse. I don't think they should have stopped the lasix for 2 days, but anyway.

Also, ENT came back yesterday to scope Graham's throat. They basically said that they didn't see any need to but Graham's main doctor (a cardiologist) was insisting. They said I could refuse it but I didn't think the doctor would consider any other problems until he was satisfied that his throat was not the problem. I left the room in tears and they scoped him. And there was nothing wrong. Sigh.

Matt is feeling better and joined us at the hospital today. Please pray for Graham to eat well. Also pray that if there is some medical reason that Graham is not eating that the doctors would be willing to look for and find it. Today is day 11 in the hospital and I am ready to go home!

Thankful for a few smiles in between the the tears!

 

Grandmama Laney

 

Grandma Miller

 

Matt wearing a mask just to be safe. (You can see the feeding tube in his nose.)

 

Feedings going well... Matt has the stomach bug

Graham has done well with the feeding tube. They are feeding him every 3 hours. He has thrown up once, is a little gaggy and seems to have some reflux. I continue to offer the breast before each tube feeding but he hasn't taken it yet.

AND, Matt stayed home from work today with a possible stomach bug. We are praying he is better soon so can come back to the hospital and that Graham and I will not get it.

Feeding Tube

Early this morning the doctors decided Graham should get a feeding tube because he still isn't eating much. They wanted somebody from ENT (ear, nose and throat) to come examine him first. We waited all day with a very fussy baby. The ENT guy came at 9pm and basically said that he didn't think he could offer anything helpful. I have been very frustrated and impatient today. Why did our doctor think the ENT doctor could help and make us wait all day to see him?

Graham finally got a feeding tube that goes in through his nose at 9:30pm. Mom and I stayed in the room for it and we shouldn't have. There was lots of gagging and crying. We all nearly threw up. But now he is sleeping and getting 2 ounces of breast milk over the next hour. We are praying that the milk will not upset his digestive system and will make him be a happy boy. He really needs nutrition to recover from the surgery.

The doctors think he may have acid reflux that is causing him to not to want to eat. He cries because he is hungry and I put him to the breast and he drinks for a couple minutes and then comes off crying. They started him on a stronger acid reflux medicine but it will take a couple of days to start working.

Graham's heart is doing great! He just needs to resume eating and we can go home.

Out of the PICU!

Well, yesterday was a long and stressful day. The pacing wires, chest tube, and neck IV were all removed. It is possible that the most painful part was removing tape. This poor kid is covered in adhesive. They put an IV in his foot which apparently was quite the ordeal. I was showering at the RMcD House during that part. After all this Graham got moved to the CICC (Children's Intermediate Cardiac Care).

Matt went home last night so he could go to work today. My mom stayed the night with Graham and I slept at the RMcD House. He didn't eat all night and was quite fussy. This morning they stuck him 3 times trying to draw blood. In the PICU they took blood from the port in his neck, but now that is out so they have to stick him. His biggest trouble now is his tummy. He is having lots of tummy pain and doesn't want to eat. They are still considering a feeding tube as well as exploring what might be troubling his tummy. He has eaten small amounts from the breast a couple times today and we are hoping that will continue. The CICC is much more quiet than the PICU and the nurses don't bother him as often so he is able to get some rest. He even gave a us a few smiles and played with a toy for a bit.

Hopefully leaving the PICU today

Today should be a good day. They are taking him off his last heart medicine, taking out the pace maker wires and the chest tube, and taking out the big IV in his neck. After all that we should be leaving the PICU and going up to a regular room! Praying he will breast feed once he has a few less wires and tubes. They are still threatening the feeding tube even though he is drinking some from a bottle.

Napping with Mr. Glow Worm. You know he is sleeping good 

when he has his arm up like that. Morphine was good to him!

Holding him for the first time since surgery, 5 days later.

HE ATE!!!

Just in the nick of time. He didn't eat from breast nor bottle this morning and they wanted to put in a feeding tube but I asked for one more chance. This afternoon he took the bottle and drank 3.5 ounces!!! I guess God is trying to teach me to WAIT on HIM. Thank you, Lord.