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.

Pray for Graham to be able to eat!

Please pray for Graham to eat today. They are going to let me try and breastfeed. If he doesn't eat they are going to put in a feeding tube.

"Like newborn babies, long for the pure milk of the word, so that by it you may grow in respect to salvation, if you have tasted the kindness of The Lord." 1 Peter 2:2-3

Praying he longs for breast milk today and the Word when he is older!

Sunday Update

The day started well with removing the catheter and one of his chest tubes, and the oxygen. They also took him off a few meds and he is not doing well without one of them. His heart rate is high and he is jittery. They are having to give him some of that med again. He is not wanting to eat and he is also getting a blood transfusion.

Overall we are still heading in the right direction, but slowly and with a few bumps.

Thankful for a few visits from friends today!

Give us this day our daily bread

That is what the Spirit prompted me to pray when my eyes opened this morning. "Lord, give us this day our daily bread. Give us what we need to make it through today." We are taking things one day at a time. Graham is doing better today than yesterday. He is having more urine output, the swelling in his chest is down, and he is doing well with the medicines and pace maker. His heart is still out of rhythm (he has JET) which will correct itself in a few days. They are keeping him really cold to help his heart. His little fingers and toes are freezing! They took the bandage off his incision today so I thought I would post another picture. (Sorry if the pictures bother you but most people are interested!)

Matt and I stayed at the Ronald McDonald house last night. Graham still wasn't eating so we let Matt's mom stay with Graham in the hospital. But speaking of eating... the best news of the day... GRAHAM DRANK FROM A BOTTLE!!!!! Graham has been cleared to eat, but they wanted to start off with pedialyte. We offered him the bottle of pedialyte and he took it eagerly! Despite my best efforts and prayers, Graham was still refusing the bottle at home. But he drank an ounce of the pedialyte and probably would have drank more if we let him. I am sooo thankful and relieved. I cannot get to him to breastfeed until the drainage tubes in his chest come out and I didn't want to have to do a feeding tube. PRAISE THE LORD! He is an on time God. When Graham needed to take a bottle, he did.

Not quite where we want to be

They had to start using the temporary pace maker on Graham last night. Because there is so much swelling in the heart it is not communicating well and needs help pacing. They stopped the pace maker mid-morning but Graham's heart is continuing to beat too fast and off rhythm because of swelling. The docs say it takes time to correct itself and they have him on several medications to help. We will be here longer than they first thought. He is also not urinating as much as they would like even though they are giving him Lasix. Praying for wisdom for the doctors, for all the meds to be dispensed correctly and do their job, and for good pain management.

Family photo from earlier this week.

Graham sleeping in dad's arms before surgery. An answer to prayer!

Graham right after surgery, still on the ventilator.

Off the ventilator and back to the paci!

 

So far so good

The surgery went well and Graham is off the ventilator. We have so many things to be thankful for. Graham slept in Matt's arms this morning until they took him at 8:15. They moved him to the PICU around 2 and we spoke with the surgeon and then got to see Graham. The hole in his heart was the size of a quarter which is quite large considering his heart is about the size of his little fist. He came off the ventilator in no time and is doing well.

Thank you for all the prayers, texts, calls, and Facebook comments. We have felt very loved and supported. We are praising the Lord for his provision!

Because He lives I can face tomorrow.

Many have asked what time the surgery is and if we need anything. We have to be at the hospital at 6:00am and surgery will probably start around 7:30am. We mostly need your prayers... texts, calls, facebook messages / likes, and visits are nice too. If you are praying, let us know! If you have a scripture for us, please send it! Thank you for all the support. We know that the Lord is good and He will see us through.

"Because He lives, I can face tomorrow. Because He lives all fear is gone. Because I know He holds the future and life is worth the living just because He lives."

Some Recent Pictures

5 Months Old

Laughing with daddy

Easter outfit and bunny from Grandmoma (Laney)

He's bound to love the river as much as grandaddy.

Onesie from Great Grandma Hallie

 Teething!

Cousin Hayes "reading" to Graham

First walk in short sleeves and no socks! 

That little chest will be forever changed this week. 

 

Teething!

Graham went to the pediatrician yesterday to get his Synagis shot (to protect against RSV). He weighed 14lbs 10oz! And... the doctor confirmed that Graham's bottom 2 teeth are about to make an appearance. I can just barely feel one of them. I think it's a little unfortunate that he is teething before he has the hand control to hold a teething toy in his mouth right where he wants it. He is getting there though. He's growing up so fast!

In other news, Graham is having some difficulty pooping. (Won't he be so glad I blogged this when he's older?) Lots of grunting and pains. It is interfering with eating and sleeping at times. But the doctor said that unless the consistency is really abnormal then not to worry about it. He is still just on breast milk. I thought that the flavoring the pharmacist added to his medicine might be causing the problems. But the doctor said if anything it would cause the opposite problem. I bought some apple/prune juice today. I may try it. Not sure. I will have to give it to him with a dropper since he still won't take a bottle.

Specific Prayer Requests for Surgery

We are so thankful for the prayers of our family, friends, and friends of family and friends. I wanted to mention some specific things you can be praying for with the upcoming surgery (March 20).

Prayer Requests for Now (Before Surgery):

• Graham will learn to take a bottle well (in case he needs to take a bottle during recovery)
• Graham will stay healthy until surgery (no colds or flu or anything that could delay surgery)

Prayer requests during and after surgery. Pray for:

• A good repair of Graham's heart. That no future heart issues or surgeries would be necessary.
• Dr. Mill, the surgeon, to have steady hands and a focused mind
• No bad reactions to anesthesia
• No pacemaker to be needed after surgery
• Safe, healthy blood from the blood bank
• Attentive and compassionate nurses
• Graham to be content without eating for several hours before surgery

Prayer requests for Matt and I.

• That we would have peace and faith before and during surgery
• For physical strength and energy as our days and nights will be long and sleeping away from home
• That we would be good advocates for Graham's care during his hospital stay. That we would have wisdom to know when to ask questions and make good decisions.
• For interactions with other parents in the waiting room who have children in the PICU. That we might be a blessing to others facing difficult times.

Details for Graham's Surgery

We met with the pediatric heart surgeon at UNC last Friday. Graham will have a "full repair" of his congenital heart defect, Tetralogy of Fallot, on March 20 at UNC. I will attempt to convey to you all I know about the surgery but I am bound to get some terminology wrong. The surgeon will patch the VSD (the hole in between the lower two chambers) and widen the pulmonary artery with a patch. He will possibly cut away some of the muscle that is restricting the opening to the pulmonary artery. Here is a picture for those visual learners!

He will use part of Graham's pericardium, the sac containing the heart, for the patches. Apparently the pericardium is not essential and won't mind if it has a couple holes in it. To get to the heart they will have to break the breast bone. The bone will be put back together with stainless steel wire. (This is less visible through the skin than sutures would be. The wire will not set off metal detectors.)

Graham will be put on a heart/lung machine during the surgery to circulate blood and oxygen through his body while they stop his heart to perform the surgery. Once the surgery is complete, they unclamp something, blood flows back into the heart, and it starts pumping again. Simple... right? Donated blood will be used to prime the machine and will be circulated into Graham's body. Hopefully he will not need any additional blood transfusions.

The surgery should take 2-4 hours and Graham should be gone from us 4-6 hours. When he comes out of surgery he will be on a ventilator (breathing machine). He will have tubes draining blood and fluid from around his heart. He will have wires touching his heart for a temporary pace maker in case it is needed. He will also have a catheter, a big IV in his neck, a drain to his stomach through the nose and who knows what else. He will be kept on pain and sedation medicine as needed but will be somewhat alert. We will be in the PICU (pediatric intensive care unit) for a couple of days and then moved up to the pediatric cardiac recovery floor.

You may have seen this picture circulating the internet a while back of a baby boy who had the same surgery.

There are risks to the surgery of course. The two things that could cause big problems would be bad reaction to the anesthesia (which Graham had in November and should do fine with) and too much bleeding. Also, the area of the heart that controls the rhythm is near the hole that needs to be patched. If this is affected he could need a permanent pace maker. 

So that is way more than most of you wanted to know. Thank you Lord for modern medicine!

So that the works of God might be displayed

I like to read to Graham from the Beginner's Bible. Recently we read the story of Jesus healing the blind man. The disciples ask Jesus why the man was born blind and He replies "This happened so that the works of God might be displayed in him. (John 9:3)" As I read this I thought about how the works and glory of God have and will be displayed in Graham's life because he was born with a heart defect.

Sometimes people are prone to wonder why certain trials happen to them. The answer is simple, so that God might be glorified. It may be the surgeon who fixes Graham's heart but it is the Lord who will get the glory. It is the Lord who allowed intelligent humans to make such medical procedures possible. It is the Lord who created the human body that can survive open heart surgery. It is the Lord who will give our family strength and hope during the surgery and recovery. It is the Lord who will sustain us should things go wrong.

I did not expect the Lord to speak to me from a children's story Bible! But God's Word is alive and powerful in any form! Thanks be to God.

We met with the surgeon on Friday and I will post more details about the upcoming surgery soon.