Thursday, May 28, 2009

Still here, updates, pictures and a name...

Sorry for lack of posts.... life is BUSY. We have settled in, got back on central time and getting back into our routine. Life is great, Gavin is great and I am feeling great. Adam is loving his new job, we will move into our new home July 15th, and before we know it Brody Tyler will be here!!!! Yes, we decided on a name... we have always like Brody and once Gavin said it we fell in love. Brody's middle name Tyler is after his daddy... Adam Tyler. So we are excited about all the upcoming events and all that God has in store for us this year!

Next Thursday, Gavin has his final post-op appointment. Pray that all goes well and that Gavin will be able to get off of his fat-free diet. The poor child is craving his PIZZA!!! And yes, we have tried non-fat cheese, that stuff does not melt and it's just not the same!

I received some pictures from Gavin's airport arrival. There are more out there, so I will post them as soon as I get to them. Also stay tuned for a post about Memorial Day weekend, I have pictures to go with it too!
This is just half of the crowd that was present...
Half of Gavin's aunties and uncles...
Gavin with a hand full of balloons

When we arrived home from the airport, we received a sweet little email from Gavin's cousin Paxton. Paxton threw his own "welcome home Gavin" party at home. Paxton lives in another state, but he didn't miss out on the festivities! Thanks Auntie E, Uncle J and P for the sweet email and pictures of Paxton eating the welcome home sign.

Tuesday, May 19, 2009

Sunshine & Brothers

I know, two posts in one day... not my usual. But this is too funny to not post. This afternoon we took Gavin on a ride to go "house hunting". Usually when we are in the car and the sun is shining on Gavin's face, he screams and cries. Several times I have told him to "use your words, do not whine and throw a fit... we can not change the fact that the sun is in your eyes". I just figured he didn't understand what I was saying and he kept crying. Well today, with a loud angry voice he said "NO SUN, GO AWAY, GO HOME, OFF MY FACE.... Mommy use words" hahahaha!!! I couldn't believe it. The child really does listen to what we say and he almost always repeats it.

And another cute story... we told Gavin we were having a boy and he said "I so excited, get baby out now!" We explained to him that it would be like having his boy cousins over every day to play but it would be his brother. He said "oh my goodness". So dramatic ;)

It's a...


We couldn't be more thrilled... yes a secret part of me wanted a girl, but deep down inside I knew it was a boy. I always thought I would have all boys. But honestly, things change when you have an unhealthy child you just want the next one to be healthy and that's all that matters. We have a fetal echo cardiogram scheduled for July 2nd. So please continue to keep Baby Boy #2 in your prayers! Thanks!

Sunday, May 17, 2009

Home Sweet Home

YES! WE ARE HOME! We were greeted by lots of family and friends at the airport last Tuesday night. Gavin enjoyed all the clapping, shouting, balloons and the "welcome home" posters. My grandmother prepared a wonderful home cooked meal and had it waiting for us at home to eat! It was a wonderful day and I was so happy to get back to my own bed.

Thursday, Gavin had a follow up in OKC with the cardiologist. His chest x-ray and EKG looked great. His echo showed some gradient in one of the vessels in his heart, but they are not overly concerned about it and they will keep an eye on it. Gavin's INR levels were low again so they adjusted his medications and he will be re-checked at St. Francis this week. Then we head back to OKC in 3 weeks for a final post-op check up. Keep the prayers coming!

I want to thank each and every one of you that prayed for Gavin, sent us cards, emails, gifts, etc. Each of you know who you are and you are greatly appreciated!! I am writing thank you notes as fast as I can!!! Just know that your thought fullness means the world to us!

On to other news... I go in Tuesday to find out the gender of the baby. I am also do for a high risk screening and fetal echo very soon. So please pray that all goes well.

I will post pictures as soon as I get them downloaded to my computer... all the pics are on other cameras, I am a horrible picture taker!

Monday, May 11, 2009

Post Mother's Day

This post is a day late because I didn't want to jinx myself in talking about going home until I knew for sure we were going home. And for those of you wondering, we are coming home tomorrow!!!! Gavin had blood/lab work, chest x-ray, and EKG this afternoon. We met with the nurse practitioner and Gavin's chest x-ray looked amazing! It looked better then it did at discharge. So the minimal fat diet seems to be working. Gavin's INR levels were low which has to do with the cumadin he is on, so they increased his dosage in hopes of it leveling out. We will have one day to re-coop then it's off to the city on Thursday for post-op check up with the doctors there. Please, please pray that Gavin's blood levels all stay in a good range and that he doesn't get anymore pleural effusions (fluid on the chest). Gavin has had two since surgery, they are very common for post Fontan kids but they always require re-hospitalization. So those are the main concerns for Gavin right now.

On to the sentimental post about Mother's Day. Yesterday was a great day, we took a trip to the beach to see the seals and had brunch with Dr. Peter's (Gavin's surgeon) wife and daughter. Dr. P left for Boston on Saturday for a conference. So we had a girls day!

...Stop here if you don't like to hear my "real, raw" emotions that I have wanted to share for a long time. A lot of people talk about how strong we are and ask how we can stay so positive... but that's not always the case. I am a real person, with real feelings and a real life changing experience.

Yesterday, as I was holding Gavin and looking out to the ocean I thought about the last 3 years of our life. It was enough to bring me to tears...

Starting when I found out at 22 weeks about our unborn sons condition. That same day we had to tell our family and watch them break down, I think that was the first time I had seen my dad shed some tears. Then we prayed and begged God to heal our son. The following weeks/months were filled with fear, anxiety, doubt, and worry. I had nightmares every single night...ask Adam or my mom and the entire church camp that my mom counseled that summer (later I found out that a group of the kids in the youth group petitioned to God on our behalf that night). I woke up every night sweating and crying. I still remember the morbid nightmares, I don't think I will ever forget them. I remember planning in my head my sons funeral. The flowers, the songs, where he would be buried. At the time I had only confessed that to another heart mom and she completely understood, she had been there. However, through the midst of this storm I was saved. On August 23, 2006, two months before giving birth to Gavin, my husband baptized me. Then we held each other and cried. I was baptized in middle school but felt I did it for the wrong reasons. Those next weeks came easier to me, God had given me a sense of peace. Fast forward to Gavin's birth day, October 13th, 2006 the room was filled with doctors and nurses. Then there was the moment he came out SCREAMING and full of color, not blue, limp and lifeless like they warned us he would be. Surprisingly that day I was the calmest/strongest I had been in the past 20 something weeks. Adam on the other hand lost it, I think he had built up emotions that just needed to be let out... and rightfully so. It's amazing how that has worked out, we always seem to balance each other out. Gavin was doing great, he had to be intubated but they believed it was because of the medicine they had to start him on before surgery. Then the night before surgery as I held our son for what we thought could have been the last time ever, Gavin quit breathing... and then my calmness turned back to fear and anxiety and helplessness. I cried as the nurse bagged him in my lap. Fortunately, no compressions were needed and Gavin was ok again. Then the time before surgery when Dr. Peter sat in a room with Adam and I and told us that there was a slim chance our son would survive the surgery. We then began the process of what would haunt us for years to come, signing consent forms, the forms that made us aware that our son could die. We kissed Gavin as they rolled him away in that tiny incubator with tubes and wires coming out every where. It took every thing in me to not pick him up and just run, run far away. Again came the moment where Adam and I held each other and cried, broke down with our real and raw emotions. Surgery took all day, felt more like a year. We were taken to our own private room where we could shut the door and try to "relax". There were more than 20 people there, it was always the joke with the staff about how our family and friends took up the entire waiting room. Our rather large group circled around the room and again prayed that God would protect and heal our son. That evening Dr. Peter came in and said there were issues with bleeding and that Gavin had to be re-cooled and put back on the bypass machine for the second time in surgery to see why he was bleeding. Gavin was critical and back in ICU. I honestly didn't know what to expect, I had seen pictures to try to "prepare" myself, but nothing prepared me for seeing my own son looking lifeless on a bed. I took two steps in and broke down, there he was naked with tubes coming out of him filling with blood. His chest was wide open and I could see his heart beating. He looked like a 10 month old baby he was so swollen. I stepped right back out of the room. It was to much, I think my post-par tum emotions were kicking in along with the emotions of a mother whose 5 day old son just had open heart surgery. Adam was strong and stayed by his bed, so thankful he was alive. Don't get me wrong, I was very thankful, that is just something I never want to experience again, and no one should. The weeks went on, Gavin coded one day while we were at lunch. Honestly, I am thankful I wasn't there because at that point I would have needed a tranquilizer if I was present. On November 7 th, 2006 we took our son home. With monitors and oxygen tanks in tow. We were quickly greeted that evening with a home health care nurse and the home health care equipment. I don't know what I was thinking when I thought we would come home to peace and quiet and get some rest. We still had the beeps and dings of the monitors, but it was comforting and reassuring to have it there. The next few months were hard, Gavin wouldn't eat, he would sweat and arch his back when we tried to feed him. He got really sick and had to be hospitalized He quit breathing in the parking garage of our pediatricians office, fortunately after screaming at him and flicking his foot he took a deep breath and gasped for air. I ran as fast as I could and the doctors quickly checked him over. Again, he was hospitalized. Then came surgery number two, February 5th, 2007. Another day of consent forms, waiting, worry and anxiety. Again it felt like we waited forever for surgery to end. Dr. Peter came in and said that it was rough and Gavin had a lot of scar tissue built up and his heart was stuck up under his breast bone. Dr. P actually cut into his shunt because it was so stuck Over time, Gavin became addicted to the narcotics and had to be put on methadone "legal heroin" to ween him off. He then starting having seizures and had a CT scan that showed he had a minor stroke either during or after surgery. We were re-assured that Gavin would come home and recover quickly with physical/speech therapy. Then on February 16th, 2007 we came home with a feeding tube and we were greeted by the therapists. Gavin progressed and was discharged from therapy at the end of 2008. For the next 2 years Gavin had several hospitalizations, tests and procedures. It was hard, but we made it through all the vomiting, bleeding, seizures, addictions, intestinal problems, etc. Which brings us to the present, and we don't need re-hash all the up's and down's with this surgery. I am just thankful and it's such a bitter sweet moment. I feel like things can go slower now, we can enjoy our son more. We don't have to "wish" for the next surgery date to get here and be over. We can somewhat relax, take it easy and watch what else God has in store for this little boy. I know that we are not out of the woods by any means and this is something that Gavin will have to deal with for the rest of his life. But I am still thankful, thankful God gave me Gavin, thankful for our circumstances, thankful for our blessings, just thankful. This Mother's Day had a special meaning... a meaning of thankfulness.

Thursday, May 07, 2009

Batman has left the building...

"Da-nah-da-nah Batman!! Aunt Patti do that", Gavin's exact words after putting on his Batman costume that Aunt P, Grandma E and Aunt B purchased for him before we left. Apparently Aunt Patti taught him all about Batman. He was so excited to wear his costume and get out of the HOSPITAL!!! You heard me right, Gavin was discharged at 1:00pm (PST) today. He had his sedated echo this morning and everything looked great. As we were loading up the van, one of the doctors came running out... I was thinking step on the gas and let's get out of here before they try to stop us. However, Dr. S was just giving us the echo result papers and DVD to take to OKC when we get home. We are now at the hotel where Gavin is sleeping peacefully, still a little loopy from his sedation today. Gavin has his follow-up on Monday, full of labs, chest x-ray and EKG. If all looks good we will be out of here by Tuesday!!! I heard we missed A LOT of rain while we were gone... not jealous about that, the only thing we have enjoyed here is the weather! We ask for prayers that Gavin will stay healthy and that we will be able to head home on Tuesday! We will keep you posted...

Gavin is "drugged" up in these pictures from his sedation...

This is the view I am getting while I type, so good to be "home"....

Wednesday, May 06, 2009

Align CenterToday was a pretty good day for Gavin. He had his central line removed and played in the playroom with his new friend Diego. Tomorrow he is scheduled to have a sedated echo. We are praying that Gavin will be released to come to the hotel tomorrow!!!! We will let you know...Mitzi

Tuesday, May 05, 2009

Looking Good...

Things are looking good around here. Gavin's chest x-ray looks better today and nothing has grown on the cultures-which means no infections-yay! Gavin's sodium levels are still on the lower side. The dietitian came in this morning and they are going to add salt to his meals to see if that will help any. Gavin will be on a non-fat diet for at least 6 more weeks from when we leave, so if you have any recipes... send them my way!! Gavin also has to stay away from any leafy green vegetables, the only problem we have with that is that Gavin LOVES salad. But that should be short term too. This is all for medications he is on and to keep fluid from building up on his chest. So all in all things are looking good... here are some pictures from the last few days You can tell how much happier he is in these pictures... look how skinny he is getting! We need to fatten him up!
Now, since we are talking about "looking good" here is daddy with part of his hair missing. Adam arrived back in California last night and we are so happy for him to be here. He has the whole week off now because he is starting a new job on Monday. He had a drug test today and they had to shave part of his head. It is great though, because we needed a good laugh!

Monday, May 04, 2009

Morning update...

The xray this morning showed fluid back on Gavin's chest. They are going to try more lasix. His wbc came down a little bit. So they don't expect him to get discharged for a few more days. Faith is really discouraged and down so please lift her up in prayer along with Gavin. Thank you so much for everything!!! Mitzi

Update from yesterday

Gavin's wbc was at 25,000...trying to figure out what is going on with him. They a a whole team of docs from infectious disease to dermatology looking at him. He is itching uncontrollably...he has bleeding and scabs and his eyes are swollen and red from scratching so much. They are giving him benadryl for that. They are weighing the pros and cons of taking out his central line, which may be a source of infection and putting in a pic line. Everything is up in the air, but all docs have assured me that they will get to the bottom of this.

Faith did say Gavin was in a better mood yesterday. Seemed a little more like himself. Keep the prayers going. Thank you so much!!! Mitzi

Saturday, May 02, 2009

Evening update

Gavin was acting sluggish this morning and sleeping a lot. Faith was giving him his morning meds and felt his head and he was really hot. The nurse came in and Gavin had a fever of 103. She had the doctor come in. They checked his blood and urine. His sodium levels were lower than they were this morning. The doctor was concerned that Gavin could have a seizure very soon if they didn't give him sodium ASAP. They are pushing sodium through the IV all day. Gavin also vomitted again-they gave him his prilosec orally and he had been getting it through the IV. Both blood tests came back with elevated levels. So they are starting antibiotics now. They will not get results from cultures for another 48 hours. No bowel movements. The doctor also thinks the vomiting had to do with the low sodium and his brain was not liking it. Gavin's fever went down to 100.5 with tylenol, now it's back at 102.2 so they are going to alternate tylenol and motrin . He has also had an elevated heart rate from fever and pain. They said at the earliest he would get discharged to the hotel Monday and that's only if Gavin progresses. Please pray that Gavin gets over this soon! Mitzi
Unfortunately we have to spend another night in the hospital. Gavin's sodium levels are a little low and Dr. Peter wants to keep an eye on it. Pray that all goes well today and tonight and we will get discharged to the hotel tomorrow!

Aslo pray that we will all stay healthy. Thank you!!! Mitzi

Friday, May 01, 2009

Chest tube is out!

Faith just called me and said that they have removed the chest tube and pacemaker wires. Everything except the central line that's giving him potassium. He's sedated and will probably sleep the rest of the day. They've also cut down on the frequency of taking his vital signs now, just every 6 hours. No decisions yet on discharging him to to the hotel. She asked Dr. Peter is he was concerned about the flu, and them flying home with that threat. He indicated that the media is making a bigger issue of the flu than it really is, and that he first just wants them to get out of the hospital.
We all remain grateful for your prayers and ask that they continue!!!Align Center Mitzi