Thanksgiving Pictures and Update

 At the Christmas parade.

 Turkey tush.

 Cousin Hayes. Sweetest expression!

 

 Grandmomma and Grandaddy with the grankids.

 Graham after his catheter procedure on Tuesday.

 I caught this smile before all the craziness ensued.

 In the PICU after his lungs filled with fluid and he had to be intibated.

 That's a lot of machines and monitors. Thankful for modern medicine.

 Off the ventilator! Back to the paci!

 First time holding him after 3 days in the PICU.

 Out of the PICU. Only the IJ (jugular central line - like an IV) and some monitors remain.

 Happy daddy.

 All dressed and ready to go home. Love this thriller pose!

Never thought I'd stay in a Ronald McDonald house. Thanks Ronald!

My milk stash after pumping for a week while Graham wasn't eating or barely eating.

We went to the pediatrician today. Graham checked out ok. This was very reassuring for a momma who has been anxious about her baby's health since coming home from a week in the hospital. Graham still has a lot of congestion. This makes eating difficult at times, because he can't breathe well. He has also been quite fussy. Please pray that the congestion will clear up and that Graham will be back to himself soon. He is taking medicine 4 times a day: heart medicine and lasix (to keep fluid off his lungs). Please pray that he will take his medicine well. Thanks for your continued prayers and love for our family!

Out of the ICU

They took Graham off the ventilator late Saturday morning. That evening we began bottle feeding. Yesterday afternoon we left the ICU and are in a regular room. After much begging and some confusion among the nurses/doctors we have been cleared to breast feed. They just came and removed his last IV line so the only thing he is hooked to is a few monitors! The cardiologists will decide today whether or not to stay for a shunt surgery but it sounds like they are leaning towards waiting on any surgeries. Thank you for your prayers and encouragement. Things are definitely looking up.

Today is the day!

They weren't comfortable taking Graham off the ventilator yesterday but today is looking good. Please pray for his lungs to function well and for minimum swelling in his throat. Once he is off the ventilator I can hold him and he can take a bottle!

Possibly coming off the ventilator

They are hoping to take Graham off the ventilator today. This involves taking him off the sedation medicine and not eating. Please pray that he can breathe well on his own during trials and his parents can tolerate watching him squirm!

Things to be thankful for

Well yesterday was not our usual Thanksgiving but the hospital did have a turkey lunch for us! Matt and I do have a lot to thank the Lord for.
We are thankful:
That we live close to UNC children's hospital.
That we have family and friends here to support us.
For the prayers of many family and friends and strangers.
For modern medicine and machines to keep Graham alive.
For the Ronald McDonald House where we stayed last night.
For doctors who are brilliant and willing to work on holidays.
For nurses who are attentive and compassionate.
For caffeine!
For a God who loves and sustains us.

Eventful Day

Well the catheter procedure went well yesterday. They wanted to keep Graham over night to monitor him. They gave him some oxygen over night and were a little concerned about the circulation in the leg where they had inserted the catheter. This morning things looked good and we thought we were going home by noon. Then they decided to give him some blood thinner to make sure there were no clots/problems with the circulation in his leg which meant we were staying until the evening. About 1:30pm I started to feed Graham and things got crazy. He became inconsolable crying and then got real quiet and started turning pale. Lots of doctors started rushing in. We ended up in the PICU (Pediatric Intensive Care Unit). They put in a breathing tube and central line (Big IV) to administer medicine as needed. He has fluid/blood in his lungs that they are giving medicine to flush out. He is stable. They will keep him on the ventilator at least 24 hours. We may be looking at doing the shunt surgery once he recovers from this but before leaving the hospital. They are trying to adjust his sedation to where he is breathing some on his own but is not in pain and moving around.

It has been a crazy scary day. I have prayed harder today than ever. I am thankful for the prayers and support of friends and family. I am thankful for the great team of doctors at UNC. I wonder if the hospital will have turkey and gravy tomorrow?! Check Facebook for more frequent updates.

Heading to UNC Children's Hospital Tomorrow

The cardiologist decided to do the catheter procedure tomorrow. He will evaluate the pulmonary artery and possibly place a balloon in it. Graham will go under anesthesia. He is not supposed to eat after 8am... we are supposed to be at the hospital at 11am and the procedure will be any time between 12 and 3pm, lasting for about an hour. He will be one hungry and angry baby. Please pray that the procedure is done early in the day and that it goes well.

RSV Shot Today

Well Graham's doctors agreed that he should get the shot for RSV. It is not actually a vaccine, just medicine. He may receive the shot monthly through the winter, but it depends on if he remains "high risk." Graham will get the shot this afternoon. Hopefully this shot will protect him from getting sick and not cause his blood oxygen levels to drop.

Possible Procedure on Tuesday

Graham had a cardiologist appointment this past Friday. He weighed 10lbs 3oz! What a big boy! His blood oxygen levels are back down into the 80s. The doctor says Graham's condition is kind of in between the two normal scenarios of babies with TOF... some babies are severe enough that they have the shunt put in early and then the corrective surgery at around 6 months and other babies are mild enough that they have only the corrective surgery at 3 or 4 months. Graham is in the middle. The doctor is suggesting that they use a catheter to put a balloon in his pulmonary artery to expand it to allow more blood to flow to the lungs for oxygen. This procedure could buy us time to get Graham to the full corrective surgery. The doc mentioned doing the surgery in mid-December. Even though Graham will only be 2.5 months old, the doc said he will be the size of a 3 to 4 month baby because he is gaining weight so well!

The cardiologists and surgeon meet on Monday afternoons to discuss cases and they will discuss Graham's case. We will get a call Monday evening telling us whether or not to come in on Tuesday for the catheter procedure. He will go under anesthesia but should only be in the hospital for a day if all goes well. Please pray for wisdom for the doctors and surgeon as they decide how best to care for Graham. Pray that if he has the procedure that it is successful with no complications. I know that it is the prayers of many that have allowed Graham to do this well so far and to gain weight so well. Thank you for your prayers. God has been good to us. Pray for us to continue to trust Him and have peace as things start to get real as we move towards procedures/surgery.

1 Month!

I can't believe Graham is already one month old! We had his one month pediatrician appointment today. He weighs 9lbs 2oz. The doctor said he looks like a healthy normal baby. There is some confusion about whether Graham should receive the vaccine for RSV (a winter cold). The cardiologist says "no" and the pediatrician says "yes". Please pray that they will coordinate well for the best care for Graham and we will make the right decision on this vaccine.

Graham is doing fairly well taking his medicine. It is not an easy thing to get an infant to swallow medicine. First we tried the syringe and then the dropper. Graham let me put both in his mouth but didn't know what to do with the medicine once it was in his mouth. He would either push it back out with his tongue or gag/choke on it. I decided to get one of those medicine dispensing pacifiers. Waste of money. Terribly designed. The paci is hard plastic and a straw runs from the medicine holder through the nipple. So all the medicine dumps right in his mouth, no sucking required. And the medicine leaks out of the holder part. Finally I put the medicine in the nipple of a bottle and he sucks it out AND swallows. The only down side is that he gets a little air when the medicine runs out, but burping usually helps with that. Anyway, I write all this to possibly encourage other moms who have to give infants medicine. The bottle nipple has worked for us. Please pray for continued success with giving the medicine and that the medicine will help his heart.

Here are a few pics of Graham at one month:

A Few Photos

 First time on the play mat.

 Cutie.

Happy Halloween!