First Haircut at 4 Months Old!

Getting ready!

"Don't mess with the hair lady!"

"Is that hair in my mouth?"

"OK, now I am itching"

"Not again!"

"OK, OK I know I look good"

Hair style like Uncle Justin's

"Wow Dad, I cant believe you are not crying!"

"Uncle Justin" and "Aunt Lauren" (our good friends and hairdressers!) came over for dinner and hair cuts last night. We decided to have Gavin's hair cut for the first time and it turned out cute. He loved being in his booster chair but strongly disliked having his hair messed with. Gavin enjoyed watching his daddy get his hair cut. Thanks Justin and Lauren!

Post-OP Cardiologist Appt.

Post Op Report- Gavin is doing GREAT! Praise God!

Gavin was making funny faces at me on the way home so here are some pictures...


The cardiologist said we could start giving Gavin a tiny bit of cereal before bed to see if it will help him sleep longer, well Gavin HATED the cereal. Maybe we will try again tonight...

Sleepy Boy

Gavin had a rough day/evening yesterday. He made up for it this afternoon.


During the Academy Awards-absolutely NOT interested!



Lots of sleepy time!

FOUR MONTHS!

First thank you to everyone who has donated money or sent us money to send in! We appreciate all of your generosity!!

Gavin turned four months while we were in the hospital. So I thought I would post a picture of him at four months.





*Since we have been home Gavin is MUCH happier, I NEVER KNEW HE COULD SMILE SO MUCH!!!


*We took his feeding tube out yesterday because he is eating much better! Ya!!


*He likes to play on the floor and try to sit up, with lots of help from mommy and daddy


*He hasn't rolled over since we have been home, but we aren't doing tummy time until he is completely healed


*He started physical therapy yesterday, he LOVED the lady that came to our house, he was very flirty! ;)


We love you Gav, this has been the BEST four months of my life!!

OKC Heart Walk 2007

The following is a letter we sent out to our Family and Friends (those that we had email addresses for). If you did not receive this by email please take the time to read the letter. If you want future letters please send me your email address at adamandfaithkuykendall@hotmail.com. Thanks for your support!


Dear Family and Friends:

HEART WALK 2007.APRIL 28TH 2007.OKC BRICKTOWN BALLPARK

As most of you know, Gavin was born in October of 2006 with a very rare congenital heart defect, Hypoplastic Left Heart Syndrome and other heart defects. HLHS is one of the most complex cardiac defects seen in the newborn. In a child with HLHS all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped. Treatment involves "re-plumbing" the heart to allow the right side to do the work normally done by the left. Therefore, Gavin only has one ventricle, the right, and it does all the work. This treatment is done through a series of three surgeries. There is no long-term prognosis for the series of surgeries since the oldest children who have undergone them are only in their early twenties. Some children with HLHS eventually will require a heart transplant. Because of the American Heart Association, Dr. Peter Pastuszko, OKC Cardiology Team, Nurses and Staff at The Children’s Hospital in OKC, Gavin is able to receive the best of care and is now a healthy and happy 4 month old! Gavin has had a tough journey in his 4 months of life, but he is a true fighter. God has blessed us and used us in so many ways because of Gavin’s condition!

We are supporting the Oklahoma City Heart Walk as our way of saying Thanks for all the hard work that the AHA and doctors do in order to save the lives of many others just like Gavin! This is our first time to participate in the OKC Heart Walk. Another HLHS family inspired us. Daric Voss was also born with HLHS and is now a strong little boy. They have started up a team with another HLHS survivor Reece Jones. We will be joining them in the walk. There are lots of other children with Congenital Heart Defects, the NUMBER ONE birth defect! So please help us in making awareness not only about HLHS but Heart Defects in general. We are creating a team of walkers (TEAM GAVIN, TEAM DARIC, AND TEAM REECE) to help us reach a goal for the American Heart Association Walk. We know that not everyone will be able to participate with us but we wanted to invite you to visit our web page by clicking the link below. If you would like you can make a donation in honor of Gavin on his personal web page or you can just join us for the walk. Please do not feel obligated---we truly just wanted to share our project, which we are doing in honor of Gavin with you. We plan to put our "hearts" into this yearly. Any amount would be greatly appreciated...However, there is an online minimum of $25.00 amount required so please feel free *edited* to email us and we will give you our address to make donations to AHA. Please feel free to pass this along to your friends and family members. Thank you to all of our “heart” supporters out there! We love all of you and God Bless.

Adam, Faith and Gavin Kuykendall

Follow This Link to visit my personal web page and help me in my efforts to support American Heart Association - Greater Oklahoma CityDivision

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Some email systems do not support the use of links and therefore this link may not appear to work. If so, copy and paste the following into your browser: http://heartwalk.kintera.org/faf/r.asp?t=4&i=185979&u=185979-165712818&e=964790804

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Home Sweet Home Post Glenn Procedure

Here are some pictures of Gavin from the Hospital and a few of his second night at home...


INTENSIVE CARE:


STEP DOWN:

WIGGLY BOY = WILD HAIR!

YAY WE ARE GOING HOME!



IN THE CAR:


LOTS OF SMILES SINCE WE HAVE BEEN HOME ;)

GOOD NIGHT!

We Are Coming Home!

We just received news that Gavin's EEG was normal and we are coming home today!!! Sorry we don't have a cute picture like we did the first time we came home from the hospital. The laptop wont let us download pictures. We will post more when we come home! Thank you, thank you, thank you from the bottom to the top of our hearts for all of your love, support and prayers!! We wouldn't have made it through with out all of the support we have received. I want to take the time to thank Scott and Laura W. and their church family for giving us such great support, thank you for all the families (especially some of the couples from our young married class (: ) from BA Church of Christ for their support too. Thank you to our FAMILY and FRIENDS who put up with our "irritability" and listened to us when we were sad. Thank you to our parents and grandparents for giving us a break and for runnig errands for us and getting us food! Thank you to all of the people who were here with us on the day of Gavin's surgery- the OU Medical staff is AMAZED by all of the friends and family we had here both times! Thank you to Mitzi for coming and staying to give us a break from this hospital!! Thank you for all the food too!!! Thank you to Aunt Tara for updating the blog and for being a shoulder to lean on! Thank you to those who got our mail and checked on our house. Thank you to all who visited us! Thank you to Larry and Suzanne for opening their home AGAIN for us to stay, shower and eat. Your generosity amazes us! Thank you to Jimmy and Emily L. for flying Aunt Erin here to be with her nephew! Thank you to ALL of the heart families (some who we have NEVER met) who reached out to us during this time and became some of our greatest support! Thank you to the nurses, doctors and staff for taking such GREAT care of our precious son! Once again, there are so many individuals to thank, soooo thank you to ALL who have been there for us along the way. Our journey with Gavin's heart condition is far from over but we will forever appreciate what has been given to us. Stay tuned to the blog for all the milestones in Gavin's life and for his 3rd open heart surgery (hopefully not until age 2!) Thanks again and our prayer is that those who have prayed for us will be richly blessed! Hugs and Kisses to everyone!

Thursday Update

Thank you for the prayers they have definitely worked!!! Gavin is doing much better today! We haven't received the EEG results yet but the doctors believe his left side activity is improving. We may even be able to go tomorrow or Saturday!!! With physical therapy, they believe Gavin will heal and be back to normal. Tonight we will learn about the feeding tube and how to insert it. We are a little nervous about the feeding tube but hopefully we will not have to use it for long. Thanks again for all of the prayers and encouragement. It has been a little harder than we thought this second time but God has been GOOD!

Heart Day and Update

In honor of all the heart babies, Happy Heart Day!!!

Remember it is Heart Awareness Month too!

Update:

Gavin will have a MRI and an EEG. EEG will be this afternoon. We are waiting to hear about the MRI, they want to make sure Gavin is stable enough to have sedation for the MRI. Gavin had an episode last night and the neurologist believe he may have had a seizure. The MRI will tell if he had a Seizure and what type of Stroke he had. The speech therapist believe that Gavins eating issues are because of his heart condition and because of his congestion. They are allowing him to eat as much of his bottle that he can, then the rest is by feeding tube. Gavins left side movement is improving!! He has even smiled several times!! God is Good and the prayers have worked! Continue to pray as he has more tests done today.

CT Results

Instead of a MRI, they did a CT on him this morning. The results were that Gavin had trauma to his right side of his brain resulting in a mini stroke (about 10% of heart babies have a stroke during heart surgery). A neurological team and speech team will be up either tonight or in the morning to run more tests and work with him on feedings. He will more than likely have a MRI tomorrow to get more detailed results. Thank you for the prayers.

*Picture from Before Surgery*

Monday Update

Hello Adam here,

Please continuing praying for Gavin, Sunday was a rough night for Gavin, Faith and Joe (Faith's Father). The pharmacists came in this morning started Gavin on a schedule of Methadone to ween his addiction off of the narcotics. The physicians are monitoring Gavin continuously due to limited activity on his left side. If there is no improvement by today, then tomorrow they do a MRI to rule out a minor stroke. We believe and feel that the results will be normal after the MRI, and God will bless Gavin again in his healing process.

Step Down

Tonight we were moved to step down! Yay! Gavin has had a rough afternoon/evening... the docs have put him on methadone to ween him off the narcotics, they think he is addicted, which is very common in these babies (or any babies who have multiple surgeries). He still has the feeding tube in, he has refused every bottle today. He doesn't even want to be held right now because he is so jittery. It makes me sad that he screams even more when we try to hold him. Hopefully he will be better in the morning.

The heart baby I mentioned earlier past away shortly after I updated the blog. Please pray for his family that they have peace, comfort and support during this time.

Sunday Update

Yesterday afternoon Gavin was very active and happy. He ate one ounce at every feeding and kept it down. However last night he decided he didn't want to eat anymore, now he has his feeding tube back in. Other than that Gavin is doing very well. Please pray that he will eat on his own so we don't have to come home with a feeding tube. Please continue to pray for the other children, the baby that has the same condition as Gavin has been given 12 more hours to make progress, if not his machine will be turned off. I cant imagine what his parents are feeling right now, this is their first child also. God give them peace! Thanks for the prayers!!!

Saturday Update

We finally were able to hold Gavin for the first time around 11 today. He is able to eat 1 ounce every 3 hours, poor guy he is so hungry! The surgeon removed his arterial line and pacemaker wires this morning! Yay! We had a little scare this afternoon, while Gavin was sleeping his heart rate dropped to the 50s, which is sometimes typical for these heart babies, but Gavin has always had a good heart rate. The nurse had the cardiologist come in and he said he was fine. They had given him some morphine this morning and they thought it was because he was sleeping so hard. Thanks again for all of your prayers! Please continue to pray for the other children in the PICU, there was a baby last night that has the same condition as Gavin who started to go into cardiac arrest. We didn't get much sleep last night because of all of the motion. The baby seems to be OK this morning, they have him on the ECMO machine. Pray that his parents have peace and comfort through this time.

Ventilator Out!!!

Faith here....Gavin is doing much better today. About 30 minutes ago his ventilator and feeding tube were removed. Gavin is still under some sedation so he isn't very active. We haven't been able to hold him yet but hopefully sometime tonight. Please continue to pray that there will not be anymore set backs and that we can move to step down in the next few days! Thanks again for all the prayers, emails, gifts, cards, love, and support.

Thursday Update

Gavin had a better night last night - less moving around. His right lung is still collapsed and there is some fluid still on his left lung but that seems to be improving. They did an echo cardiogram this morning - still waiting on the results. Will post again when we have another update. On another note, Adam and Faith have met several families in the waiting room whose children are in for heart surgeries (expected and unexpected heart surgeries). They have been able to share their experiences with these families; they have prayed and offered encouraging words. Faith commented that now they know why they had to go through all this with Gavin. Pray for these other children and their families and the struggles and obstacles that lay ahead of them. Continue to pray for Gavin, Faith & Adam. God is good! - Aunt Tara

Wednesday Update

Gavin's right lung is still collapsed and there is some fluid on the left lung; he has also developed an infection that the doctor and nurses are treating. Adam and Faith have asked that everyone please continue to pray for Gavin; the family is also asking that in addition to praying for Gavin, please pray for Adam and Faith - that they have strength and perserverance during this time. Will post another update later. God is good! - Aunt Tara

Recovery Update

Gavin is still sedated and the doctor and nurses plan on keeping him sedated through the night and will try to start weaning him off the ventilator and medicine tomorrow. The nurses are still trying to stabilize his blood pressure, as it has peaked several times today. Gavin is also running a low grade fever that the nurses are trying to control. In addition to these issues, Gavin's right lung collapsed during the surgery. A chest x-ray was done this morning and still showed the lung as collapsed. The nurses are giving him breathing treatments, as well as other respiratory therapy and another chest x-ray will be taken tomorrow morning. According to Faith, the doctor wasn't overly concerned about the collapsed lung and was confident that respiratory therapy would correct it. That's the update for now - will post again as soon as I get another update. Keep praying! - Aunt Tara

Surgery Day

Gavin was taken back around 10 am this morning for his surgery; the doctor came out around 2:30 pm to say he had finished the surgery and that Gavin was doing well. The surgery took longer than expected because the new shunt (see postings from January 24th & 25th) was under the breastbone instead of on the left side of the heart so the doctor had to reposition the shunt; this wasn't expected so it took the doctor longer to perform the surgery. Currently, the nurses are trying to stabilize his blood pressure. Gavin will stay heavily sedated and on the ventilator for the rest of today; the plan is to start weaning him off tomorrow. Adam and Faith have been to see Gavin and they seem to be holding up as well as can be expected. The family appreciates all the prayers being said and support being provided! Please continue to pray for Gavin's recovery, for Adam and Faith and for the doctors and nurses attending Gavin. God is good! - Aunt Tara