Caleb and Graysen

Here are some pictures of Caleb and Graysen from this morning. Caleb had some crazy hair this morning!!!

Caleb is a great big brother. He loves Graysen and is very interested in him. He likes to help take care of Graysen by bouncing him in the chair, picking out his clothes, helping with Diaper changes, ...

Graysen had a pediatrician visit today. He weighed 8 Lb 2 oz. He gained 1 Lb 1 oz since his last visit two weeks ago. The pediatrician was surprised. Mr. Graysen likes to eat a lot!!! He is doing great. The pediatrician was very impressed with how well his scar has healed. She said that it is one of the best scars that she has seen. (The cardiologist said the same thing last week.) He received the RSV vaccine today, so that will help protect him. There isn't a lot of news. Overall, Graysen is doing really well and we are very blessed that he recovered from surgery so well. His next doctor appointment is next week with the pediatric cardiologist. He will have x-rays taken at that time. The purpose of the x-ray is to look at the lungs since they are receiving so much blood flow.

Graysen with Grandma

Here is a picture of Grandma with Graysen. He loves his Grandma. My mom has been the biggest help this week. I do not know what I am going to do without her next week. I have learned that taking care of two children more than doubles the workload.

We are going to have a relaxing day today. Graysen has a pediatrician visit tomorrow. It is a routine visit, but it will be fun to see how much he has grown. He eats a lot, so I am anticipating that he has grown quite a bit.

Playdate with Emily

Caleb enjoyed playing with his friend Emily yesterday. This week will be quiet for us. My mom is in town and I am enjoying having help with the two boys. Next week will be a challenge for me since it will be my first week having both boys by myself. Both Graysen and Caleb are doing well and Caleb is the sweetest big brother. He is very interested in Graysen and loves to help with anything that Graysen needs.

Greenville Zoo

My dad, Lee, and I took Caleb to the Greenville Zoo today. He enjoyed seeing all of the animals and we enjoyed spending the day with him. His favorite animals were the giraffes and alligators. My mom stayed home and bonded with Graysen.

Caleb is Home!

Caleb arrived last night with Grandma and Grandpa. We are happy to have him home. He played with every single toy that he owned last night, as you can see from the picture. He was very nice to Graysen: he gave him two cars, which are very valuable to him, and he pets him kind of like a dog. He has not shown any jealousy and seems to accept that Graysen is part of the family.

Pediatric Cardiologist Visit

Here is a picture of Graysen ready to leave for his outing to the pediatric cardiologist. The doctor said that Graysen is doing great!

Graysen was not a happy camper at the doctor visit, but some sugar water (Sweeteaze) quickly helped the situation. He had an EKG and ECHO done and a stitch removed, so it was a long visit. Most of the discussion centered on Graysen's pulmonary artery. The blood flow to the lungs is still not 50/50. It is 60/40, with more blood going to the right lung. There is also more blood circulating through the lungs rather than it being a 50/50 split between lung and body. There is nothing that will be done at this point to correct the blood flow situation to the lungs.

The next decision point will be based on the results of his heart catherization on July 29th. The doctors will look at his shunt and pulmonary artery to determine their condition and when the next surgery needs to be performed. In the meantime, he will be watched carefully since these concerns add stress to his lungs. (They can become "flooded" and can lead to congestive heart failure.) His next PC visit is in two weeks at which time they will perform chest x-rays to further understand condition of the pulmonary circulatory system.

The doctor also stressed to us the importance of keeping Graysen at home. He cannot get sick and this is a bad time of year for flu and RSV. I am hoping that he will get the RSV vaccine next week when we go to the pediatrician. The doctor said that Graysen needs to stay at home until the end of RSV season, which is the end of March or April. Lee and I are diligent about washing our hands and we require that anyone that enters our apartment washes their hands. (I am writing this so that anyone that visits understands why I have become psycho about hand washing and germs. It is very bad news if Graysen gets sick.)

So, overall we are very happy with Graysen's recovery. He is doing great and seems to be a strong, happy, and healthy baby.

Wednesday

Lee picked up Graysen to comfort him, and he immediately fell asleep in daddy's arms.

Tuesday

Lee took a picture of me feeding the baby. Today was an uneventful day. I spent most of the day freaking out because Graysen hadn't had a poopy diaper in 24 hours. I called the doctor's office and they told me not to worry. Sure enough, the situation was resolved a few hours later.

Graysen's immune system is suppressed while he recovers from surgery. Thus, I do not take him anywhere which limits our daily activities. We plan to keep him at home until the end of March. He has an appointment with the pediatric cardiologist on Thursday which will be his first trip out in a week.

Monday

I am still getting used to having a newborn around. It is 11:40 AM and I am still in PJ's. My goal is to eat lunch and take a shower before Lee gets home at 5 PM. Graysen loves to eat and be held. He eats every two hours and fusses if he is not held constantly. He does not like to be in his crib or his swing. Thus, I do not get a lot done because I haven't figured out how to do things and hold him at the same time. (I have to be careful how I hold him because his breast bone will not be healed for four more weeks.)

Caleb will come home this Friday. Lee and I are looking forward to having our little boy back. We miss him a lot and his room feels so empty. My mom will stay the following week to help me adjust to having two kids.

Back at Home

We are back home with Graysen. The past 72 hours have been a whirlwind. We have been busy from the moment that we were discharged from the hospital. Today is our first somewhat relaxing day at home. (No day is completely relaxing with a newborn.) Lee and I forgot what it was like to have a newborn at home. We are not getting a lot of sleep. We will both be happy today if one of us can make it to the grocery store to buy food for the week. It would be a sign of progress.

Graysen is doing great. He is healthy and happy and doing normal newborn activities.

Graysen is out of the hospital!

The doctors decided this morning that Graysen was ready to go home! He was discharged this afternoon--we are thrilled to be out of the hospital. We will post pictures and more information once we get settled back home in Spartanburg.

"I want my feeds!!!"

Here are some pictures of daily life at MUSC. The days are somewhat monotonous. Lee does work in the mornings, Graysen gets upset if he doesn't get his "feeds," I spend time reading and playing with Graysen...

Graysen is doing great. He has taken two bottles now with an occupational therapist. He is allowed to take all of his food by bottle for the next 24 hours. They are talking about removing his feeding tube and IV today. I think that we may be getting close to going home!!! I know that we will be here at least all day today and all day tomorrow because they have talked about the plans for those two days. They haven't given us a discharge date, but I am hopeful that it will be soon. Graysen has been a little super star!!!

Graysen's First Bottle

Graysen was offered his first bottle yesterday. He did not do as well as I had hoped. He is used to getting all of his "feeds" through a feeding tube. We will be allowed to go home as soon as he learns how to eat, so I am anxious for him to learn. We will try another bottle today at 2:30 PM with an occupational therapist.

Other than the feeding issue, he is doing great. He recovered well from his surgery and had his pacing wires removed from this chest a few minutes ago. Besides the feeding tube, he is free of any objects going into his body.

Lee working with Graysen on oral therapy

Here is a picture of Lee doing Graysen's oral exercises. The goal of the exercises is to stimulate Graysen's mouth so that he will be ready for breast feeding when the time comes. We do the exercises three times per day and an occupational therapist does them with Graysen once per day. I cannot try to breast feed him until all of his feedings are compressed. Feeding is a three hour cycle. He had been being fed continuously, so he was feeding three out of three hours. He is down to feeding two out of three hours. (All food is fed through the nose at this time.) The goal is to compress the feedings so that he is fed thirty minutes out of three hours. He cannot feed by mouth until he reaches that goal.

Graysen is in step-down

Graysen was transferred to 7-C last night. This is where he will learn how to eat and become a normal baby. The doctors expect him to be in the unit for 7-10 days. He doesn't start eating right away. The first step is to compress his "feeds" and work with OT on oral stimulation exercises.

Graysen is doing great!

Graysen is doing well. They started giving him breast milk (through the nose) yesterday. He tolerated it very well and there are no concerns. They are hoping to remove the line going to the inside of his heart today. The line is placed in an atria to allow medicine to go to the heart quickly. After this tube is removed, all that he has left are belly button lines and a tube draining the outer area around his heart. He should be back to normal soon.

Caleb at Grandma's House

This is a screen shot from today's web-cam call with Caleb. Grandma put him in a box with wheels and can't get him to leave the box. He thinks that it is a choo-choo. He is happy and enjoying his time in Florida.

Getting better every day. . .

Graysen graduated from his breathing tube today. The doctors think he may be able to have his chest tube removed tomorrow. The removal of the chest tube is a big deal, because it means that he'll be able to eat for the first time. (Up until now, he's only been given nutrients intravenously.) If he continues to recover at this pace, he may be able to leave the ICU by next Monday. When he leaves the ICU, he'll move to a "Step Down" unit where he'll learn to be a normal baby, living without IVs, feeding tubes, etc.

Graysen is awake

Graysen opened his eyes periodically during the day yesterday and was very alert last night when we went to visit him. The picture above is from last night. He is still very groggy from the medications he received and is still swollen, so he looks very tired. Thankfully though, he is showing no visible signs of being in pain.

He doctors say that he is recovering well and may have his ventilator tube removed today.

Last Night's Visit

Lee and I visited Graysen last night. He is stable and is following the expected post-op pattern. The nurse had him uncovered so we were able to see all of the tubes going into his body. It was very interesting. Lee and I are learning a lot and enjoy seeing how the medical technology functions.

We are going to visit Graysen again this morning. We do not expect any changes from last night. He is happy. They keep him doped up on morphine so that he can rest and heal.

Graysen's Surgery

The first picture is from this morning. Lee and I held Graysen for about an hour before surgery. He was awake for the entire hour and we enjoyed playing with him. The other two pictures were taken after surgery. He is doing well and is stable. We do not expect any complications. He is expected to come off the breathing machine and wake up in about three to five days. Until then, he will be sedated and will rest as his body heals.

Graysen is out of surgery

Graysen's surgery ended around 11:30 this morning. Everything went as planned, and he is doing very well. We were able to go in to the ICU and see him for a while after the surgery, and he looks much like he did before the surgery, with a few additional tubes and bandages. He is sedated right now though, and will be for several more days while he recovers.

Graysen's Surgery Day

As planned, Graysen left the ICU for the operating room at 6:30 this morning. Laura and I spent an hour with him before he was rolled away.

We expect the surgery to take at least four hours, and we expect to get updates from the operating room every so often while we wait.

Sunday's Update on Graysen

Graysen is doing well. Lee and I are spending today enjoying Graysen. We are still planning on surgery tomorrow. We plan to arrive at the hospital at 5:30 AM and Graysen should be rolled to the OR around 6:30 AM.

Lee and I had a fun night with Graysen last night. We both got to hold him and then we gave him a bath. He does not like to be washed. He looked really cute during the process. Afterwards, we wrapped him in his green frog blanket, put on his frog hat, and gave him Froggy to hold. The nurse took a picture and printed it for us. Lee took more pictures today. He will put them on the internet when he gets a chance.

Photos

I put together a web album of some of the pictures we've taken in the past few days. Click the picture below to go to the album.

Photo Album

Friday's Update on Graysen

Graysen is doing really well. He is just hanging out and resting. Lee and I had a fun night with him last night. We visited him at 10:30 PM and things were pretty laid back. We both got to hold him and he was awake for about 30 minutes. It was fun to interact with him.

He is doing great today and has been awake. I got to change a diaper this afternoon. I am a little out of practice since I haven't had to change one in two weeks!