Acid Reflux?

Well, the hospital is our favorite place to be on holidays! Graham has started having these strange episodes where he tenses up and stops breathing for a few seconds. After he eats and is laid on his back for a diaper change he will stretch out his arms to the side, become rigid, bulge his eyes, and stop breathing. He first did this on Christmas Eve while at Matt's parents' and when I called the pediatrician's nurse advice line they said to take him to the emergency room. The emergency room doctor didn't find anything and sent us home. Graham continued to have episodes and the pediatrician wanted to see him. She didn't seem concerned and put him on acid reflux medicine. She also gave us a referral to the neurologist just to be sure. We are not too worried but the episodes are scary when it happens. Hopefully the medicine will help and he will grow out of it. This little guy sure likes to keep us on our toes!

Good report!

We went to the cardiologist yesterday for the first time since leaving the hospital. It was all good news. Graham weighs 11lbs 5oz! He gained a pound and a half in 11 days (since he was weighed at the pediatrician). His blood oxygen level was still at 99, which is what a normal baby would have. The balloon catheterization has done what we hoped it would, buying us some more time before the full corrective surgery. We will not see the cardiologist again until January 11. The doctor said we should be able to schedule surgery 3 to 4 weeks ahead of time... So Graham will probably not have surgery until at least mid-February. Graham's lungs sounded good and he will stop taking Lasix after this week. So he will only take medicine 3 times a day instead of 4! (He will continue taking the heart medicine.)

We were thrilled that Graham is doing so well. We will have peace of mind while traveling for Christmas. Thank you for your prayers. Praise the Lord for hearing and answering our prayers. He is good!

Graham has been doing better every day. He is back to his normal self and smiling and cooing more and more! He even went 7 hours in between feedings last Friday night! Here are a few pics: his 2 month photo and a photo with Santa!

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!

Great Cardiologist Appointment Today!

First of all Graham weighed 8lbs 11oz today! He gained a pound in 10 days! Thanks for your prayers for nursing to go well. Graham's blood oxygen levels were back in the low 90s, which is a good thing. They did another echo (ultrasound of the heart) to see how the blood is moving in and out of the heart. The doc decided to put Graham on a medicine, Propranolol, which adults use for high blood pressure. This should help his heart allow more blood to flow to his lungs for oxygen. He has to take it 3 times a day. He has taken gas drops and vitamins well so hopefully he will take this medicine well too. Today the doc seemed to consider the possibility that Graham could hold out for the full corrective surgery if he continues to do this well. Previously he seemed to think that we would have to do a temporary surgery before he was big enough for the full surgery. We are encouraged and praising God for the good report! We don't have to go back to the cardiologist for two and a half weeks. Thank you for your continued prayers, they are working!

Cardiologist Appointment and First Dinner Out

Graham had a cardiologist visit on Friday. His blood oxygen levels have fallen into the high 80s. They were in the mid to high 90s in the hospital and low 90s at our last cardiologist appointment. The cardiologist seems to still think we will have to do something temporary soon before Graham is big enough for the full corrective surgery. He has mentioned 3 possibilities: (1) putting in a shunt that allows more blood to flow to the lungs (2) medication that will help the muscle constricting the opening to the pulmonary artery to relax (3) procedure to stretch pulmonary artery a little bigger. We go back Oct. 30 and will see if his blood oxygen levels are continuing to drop. It is a wait and see game. We are just thankful Graham is continuing to eat well and grow. He weighed 7lbs 11oz, almost back to his birth weight of 7lbs 12oz. We are trusting the Lord with His plan and timing.

On a side note... our first outing as a family of three was a success. We went to Andy's for dinner and Graham slept in his car seat the whole time, despite being fussy most of the afternoon. Yay!

Psalm 139

Being a huge proponent of the sanctity of human life, I have always loved Psalm 139. I even framed Graham's ultrasound picture with this scripture and hung it in the nursery. 

^{Psalm 139}

¹³ For You formed my inward parts;
You wove me in my mother’s womb.
¹⁴ I will give thanks to You, for I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well.
¹⁵ My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the depths of the earth;
¹⁶ Your eyes have seen my unformed substance;
And in Your book were all written
The days that were ordained for me,
When as yet there was not one of them.

¹⁷ How precious also are Your thoughts to me, O God!
How vast is the sum of them!
¹⁸ If I should count them, they would outnumber the sand.
When I awake, I am still with You.

A dear sweet prayer warrior from my home town told me that she had been praying through these verses over Graham. As I read over them again, I suddenly had a whole new insight. "I am fearfully and wonderfully made" is often used to encourage teenage girls to not hate their bodies because God made them that way. Well, that is a fair application, but there is so much more. Graham's body and little heart were knit together by God himself in my womb. Graham is fearfully and wonderfully made. God didn't make a mistake with Graham's heart and the heart problem didn't happen outside of God's will. All the days, the doctor's appointments, the surgery, everything we are about to face, God has already ordained and recorded. We can rest in God's sovereign plan for our family, knowing that He is in control and He is good. His thoughts of Graham outnumber the sand! Praise be to God! Oh I pray that one day Graham will know what the Lord has done for Him and will serve Him faithfully!

The Birth Story

My water broke at 4:45am October 2, nine days before my due date. They say that you won't actually experience a gushing of fluid like you see in the movies... well I did. Gross. I called the doctor and woke up Matt. We didn't have a bag packed or anything. So we begin gathering things and ate some breakfast. An hour passed and I hadn't gotten a call back from the doctor. So I called again. Finally the doctor called back, she had been in a c-section, and she said to make our way to the hospital. I was in no hurry to get to the hospital because I was dreading what was about to happen, but Matt was anxious to get there. We straightened up the house a little, knowing we would return home with visitors, and eventually left for the hospital.

We got there at about 7am and when they checked me in triage I was already 4cm dilated, having felt no contractions! I was admitted to the hospital after getting my IV, during which Matt and I both almost passed out as blood spewed all over the bed and floor. The doctor wanted to start me on Pitocin to get contractions going. I asked to wait a while and Matt and I walked around for a while to try and get things going naturally.

Two hours later, about 12 noon, I was still at 4cm so I agreed to start Pitocin. Then the pain began as contractions started. After 2 hours of contractions I was at 7cm and an hour later I was at 10cm. Thank God things moved quickly. I did not get an epidural because things were moving quickly and I was tolerating the pain. I did get an injection of some pain medication in my IV that helped for about 2 contractions. I pushed for 2 hours and at 5:38pm Graham was born! He came out face up, which contributed to the lengthy pushing time.

Matt was a great labor partner. When Graham was finally here, Matt was very emotional. I wasn't really, I think I was just still in shock of what just happened to my body! We also had a student nurse who attended the birth and she was great. Since she had no official duty she handed me water, held my left leg, and took pictures! I am so thankful to God that labor went quickly and without complications! An answer to prayer.

Welcome to the world, Graham Wilson Laney!!!

My Grace is Sufficient for You

^{2 Corinthians 12
7} Because of the surpassing greatness of the revelations, for this reason, to keep me from exalting myself, there was given me a thorn in the flesh, a messenger of Satan to torment me—to keep me from exalting myself! ⁸ Concerning this I implored the Lord three times that it might leave me. ⁹ And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. ¹⁰ Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.

<sup>During my pregnancy I had this eerie feeling about the baby and his health although I had a perfectly normal pregnancy. Matt and I have lived very blessed lives. In the 5 years we have been married, and really our whole lives, we have not faced great trial or tragedy. As Christians we pray that the Lord would increase our faith and draw us closer to him. The Bible tells us that one way that the Lord grows our faith is through trial and so I have felt like there was a trial around the corner for us. As I pondered all this I prayed that the Lord would not give a trial involving the baby and his health. "Please Lord give us a different trial... let the house burn down, or Matt lose his job... but not the baby." Now this may not have been the most faithful prayer I have prayed but that is what I asked. 

The day after Graham was born they took him for a routine pediatric check up and he was gone for a long time. Finally we were told that a murmur was detected when listening to Graham's heart and they wanted to do an echo to make sure everything was ok. Well I didn't worry. I was sure it was nothing. It wasn't nothing. When the doctor from the NICU came to tell me what they had found I was in the room by myself, all the family had gone to get lunch. He explained that Graham had Tetralogy of Fallot and that he needed surgery. When he left the room the tears came. I immediately thought of Paul who asked the Lord to remove the thorn in his flesh and the Lord said "no." I asked the Lord to spare us a trial with Graham's health and He said "no, my grace is sufficient for you. My power is made perfect in weakness." 

The news was difficult, but I know that God's grace is sufficient to see us through this trial. We are trusting the Lord with Graham's heart and are so thankful for the many ways he has provided for us so far. We got to come home from the hospital only 2 days after his birth and he is eating and growing well. Praise the Lord for his provision and grace in the midst of trial! Thank you all for your prayers. Thank you, God, that you are a God who hears and answers the prayers of his people!</sup>
 

What is Tetralogy of Fallot?

Well it took me two days to figure out how to pronounce it. (teh-tral-uh-je ov fuh-LOE) I have learned a lot about the heart in the last week and I am still working on mastering all the terms. There are four interconnected problems with the heart: (1) a hole between the bottom 2 chambers (2) a narrowing under the pulmonary valve (3) an enlargement of the bottom right side of the heart (4) the aorta is lined up just over the hole between the bottom 2 chambers. This picture might help.

This all means that not enough oxygen is in the blood that circulates through the body. All this can be fixed with surgery. Ideally Graham would not have surgery until he is a few months old and is bigger and stronger. Graham's blood oxygen levels are high right now but his pulmonary artery is very small and so he may need surgery sooner rather than later. If he has surgery soon it will be a temporary fix and he will have the full corrective surgery later.

 

Isn't the human body amazing?! What a mighty Creator we have. We go to the cardiologist weekly for them to monitor Graham's blood oxygen levels and that will tell us when it is time for surgery. Our prayer is that Graham will continue to eat well and grow and that his blood oxygen levels will remain high so that he can wait for the full surgery.

Welcome to our Blog!

Hello everyone. Our son, Graham Wilson Laney, was born October 2, 2012 at 5:28pm, weighing 7lbs 12oz and 21.5 inches long. The day after he was born we discovered that he has a congenital heart problem called Tetralogy of Fallot. We are so grateful for the prayers and support we have received from friends and family. We have created this blog to keep you updated on Graham's health. I plan to add posts about the delivery, the heart condition, and what the Lord is teaching us already!