Tuesday, June 26, 2007

Gavin is doing great at momma boot camp or as the brothers call it; baby bootcamp. They are helping me out with it! They root Gavin on the whole time and laugh about what I'm doing with him. So, it's turning out to be quite fun! Gavin even seems to be enjoying it! He also had a fairly good evening lastnight. He hardly gagged at all! This morning was not so good, but we are thankful for the times that he is doing well!

Yesterday I said that Gavin has been in the hospital for about 5 1/2 months out of his life, but I forgot to add the amount of time he spent in the NICU at birth. So, he's actually been in the hospital for over 6 months of his life! Poor little Vinster!

I also failed to mention some good news! He is gradually being taken off the oxygen! Yay! We are working on getting him off slowly. He is off the oxygen for about 6 hours a day now. His sats are staying up and he's handling it well. The only reason he is still on it is for medicinal purposes. It helps with high pulmonary pressures, and since his last echo showed them to be quite decreased, he shouldn't need it any longer. His cardiologist said to take him off slowly and to have him only on it at night by the time his next appointment is. They will do another echo then and if his pressures are still low then we will hopefully be able to get Gavin off the O 2 for good! It is so nice to see his cute little face without any tubes on it! I'll have to post a new picture without them soon!

Thanks for your continued prayers and support!

Love, Alicia and Family

Monday, June 25, 2007

I have been quite depressed the last week. I was really hoping that Gavin's last surgery would help him to feel a lot better! So, far it hasn't. He still continues to gag and cough quite a lot during the day! For some reason, he does much better at night. He is still getting fed continuously by the feeding pump all night, so I don't know what makes him do better at night, but at least he gets some relief! I really hope that doctors can figure out what the problem is and fix it soon!

I've also just come to the realization how far behind Gavin is developmentally. I think while I was focusing on getting him through all the surgeries I just didn't concentrate on him developmentally because with every surgery and hospital stay he became weaker and lost skills that he was gaining anyway. So, now that all his surgeries are supposedly done for quite some time, as long as he keeps improving heart wise, I plan on working him hard! No more Mrs. nice mom! He is going to make progress if it kills me! I plan on doing lots of therapy with him throughout the day. He isn't always fond of this. I don't blame him though! He's been in a hospital for about 5 1/2 of his 9 months! He has been struggling to just stay alive, as a friend from church reminded me yesterday. So, the fact that he isn't too happy with therapy makes sense, but I know he's up for the challenge and healthy enough to go for it! Yesterday he started to enjoy some of the therapy I was doing with him, so hopefully we are headed somewhere! Prayer requests for this week are: Less gagging and more comfortable! Strength for Gavin for boot camp with mom! Oh, also some big smiles for mom! He's been working on tiny ones, but I could really use a big one from him! I remember telling Joel when I was pregnant with Gavin, that I couldn't wait to hold our new baby and feed him a bottle because I just love it when babies look up at you while they are sucking and give you a little smile. It really saddens me now, because Gavin can't even drink by mouth AND he's not giving too many smiles! So, BIG prayers for smiles please! I'm not asking for too much am I?!

To end this depressing update I'll share some great news! My sister got engaged to a terrific guy this weekend! Congratulations Amy and Mark! I'm so excited for you both! I'm excited for me too! Maybe now I can actually become an aunt! Not to rush you or anything!!! :) Anyway, We are happy for you!

Have a great day and thanks for your prayers!

Love, Alicia and Family

Wednesday, June 20, 2007

Gavin is doing well, but not great. He has been gagging and wretching a lot today. I called the surgeon's office and they said some of this is normal and to cut back again on the amount of formula that he is getting each hour. Hopefully this will help, but some children continue to have this problem even after the surgery. I pray this isn't the case with him because it has to be miserable and it's hard to watch. I am quite frustrated! I was really hoping that after this surgery he wouldn't have to suffer with this anymore! It feels like he will never get a break! I really feel that he and I need relief from continuous problems! It's just getting to me today, I guess. It just seems like it's never going to end with all he has to go through! Please pray that he can start to get relief and that we can begin to live a more 'normal' life again! I know that we will never have the 'normal' life that we had before Gavin was born, but to be able to go out and have him happy would make such a difference!

Thanks for your prayers! Have a great day and enjoy this beautiful weather we are having!

Love, Alicia and Family

Sunday, June 17, 2007

Happy Father's Day to all you dads out there! Joel received a great gift! Gavin came home late this afternoon! Yay! They weren't sure whether they should send him home or not because he continues to not digest quite as well as he should. He's almost to his feeding goal per hour, so they said normally they wouldn't send patients home, but they thought I was competent enough to work him up gradually over the next couple of days. I just have to watch closely for signs that he's not doing well with it. So, we are very happy! Hopefully Gavin adjusts to all the noise again and continues to stay healthy!

Thanks for your prayers!

Love, Alicia and Family

Saturday, June 16, 2007

Gavin reached his goal in the amount of formula he should be getting each hour by the continuous pump! He was doing great, but then all of a sudden he began gagging and wretching. They had gone a little faster getting him up to his goal because yesterday his I.V. went bad and they didn't want to put another one in him if they didn't have to. Without the I.V. in he wasn't getting enough fluids to stay properly hydrated, so they had to push him a little bit to make sure he was getting enough. So, they decreased the amount for awhile and are gradually adding more. Hopefully this works and we can get him home tomorrow! They also said that sometimes with the stomach wrap people have gagging anyway. We hope this isn't the case for him because that would not be fun for him long term! This is our prayer request for the day! No more gagging and home soon! Thanks!

We learned of the passing of a girl who had been healthy as can be a week ago, but then came down with something and was gone less than a week later. It is so sad to think of so many families having to go through events like this! I started to feel a little guilty because here we are with Gavin, who has had so many health issues and he just keeps hanging on. We have been mentally prepared to let him go several times because he has been so sick. Then this family is broadsided with this! Don't get me wrong, I feel very blessed that God has kept Gavin alive! I just feel so bad for families who go through this! Joel and I were talking about how we've been told how fragile Gavin is several times. We see this too because of all he's gone through. Then we talked about how, really, we are all fragile. We just don't see it in all of us like we do in Gavin. We don't know God's plan for any of our lives, but we know that we can trust Him to get us through! I guess the moral of this story is that we all should live every day to it's fullest and trust in God and honor him in all that we do. Plus, thank him for all that we have! I still can't help feeling a little guilty though and sad for those who are suffering.

Keep those prayers going! We appreciate them! Have a great weekend!

Love, Alicia and Family

Friday, June 15, 2007

Gavin is doing great today! He isn't in pain at all it seems and he's been very content and happy. He still hasn't been able to digest as well as he should be. Because of this they started him on a continuous feed like he was on at home. This means he's always connected to something, but we're used to this and if this means we get home faster, I'm all for it! Hopefully he will digest this way easier and then we can work on feeding him every 3 hours as he tolerates the feeds more. I told the surgery resident that we never make plans with Gavin. He likes to do things his way and that usually means at a slower pace. So, we've definately learned patience through this experience! Well, we aren't pros or anything. We still get anxious about lots, but we don't let it bother us anymore. I think Gavin will just be someone who takes the time to 'stop and smell the flowers' and then go back again to smell them some more! This is probably a good lesson for everyone in our crazy world!

The resident said hopefully he can go home Saturday or Sunday, depending on how he's tolerating the feeds. Pray that he will be able to come home sometime this weekend!

Have a great weekend! Thanks for you prayers and messages of support and encouragement!

Love, Alicia and Family

Thursday, June 14, 2007

Gavin is doing quite well today. He hasn't needed Morphine at all for pain. He's just getting Tylenol now and it seems to be doing the job. I am very happy about this! He still has pain with certain movements and sometimes when I pick him up, but compared to before he seems to be tolerating it well! He's even starting to give me a few tiny smiles!

One thing that concerns me is that he isn't digesting the formula very well. We know this because before he is given more we use a syringe to pull back on the G-tube to see how much is left in his stomach from the last feeding. There shouldn't be much left after 3 hours, but every other feeding he has quite a lot left in his stomach. It has been about 2 months since he has had any food in his stomach since the old feeding tube went past the stomach into his intestines. His stomach probably doesn't know what to do yet and it may take some time to start working properly again. This is frustrating because we can't go home until he is tolerating the feeds better. He has been on a higher calorie formula, so tonight I suggested that he be started on a lower calorie one in hopes that he can digest it better. The nurse thought this was a great idea and hopefully this will make a difference. Please pray about this! We want to go home! I think Gavin is getting fed up with being bugged so much with blood pressure checks, blood draws, etc. They must not know Caleb's version of the 10 commandments! "Don't bug your neighbor!" Anyway, pray that he is able to come home soon!

Other than this, Gavin is doing great! Everyone at the hospital that knows him from our last visit can't believe how great he looks! They are quite impressed by him! Especially since he was doing so poorly a month and a half ago. We are so relieved to hear these observations, but we know that with God all things are possible and that He is Gavin's true physician and has blessed Gavin and us with this healing power! Thankyou Lord! When I think back to our last visit it seems so weird to think that we were so concerned about Gavin making it at all or coming back to us after the seizures he was having! We are so thankful! It makes me think, that's for sure! We really are given just as much as we can take and then we are given relief when we think we can't take anymore! Plus, our perspective is changed so much with each trial we go through. We learn so much and see good things happening with every trial we face. It's so hard to see this when in the middle of the 'storm', but I'm very thankful that we are seeing the 'fruit' come forth afterwards and even during these times.

Thanks for your continued prayers! We really appreciate them!

Love, Alicia and Family

Wednesday, June 13, 2007

Gavin talked them into taking the vent off real soon after I left the last update. By the time I got into his room he was wide awake and proving that he didn't need the vent any longer. So, they pulled it out! I was very relieved about that! He was in quite a lot of pain yesterday evening, but after they increased how often he could get Morphine he was doing quite well! He slept most of the night and is doing well. Hopefully today proves the same. One of the nurses told us she had this surgery, minus the G-tube, and that the second day was actually harder. It is so hard to imagine what Gavin is feeling like most of the time, so it's always good when someone has been through similar things and can tell me about it to give me more of a idea about how he feels. It's hard to hear, but then I can help him more I think.

Pray that Gavin can be kept free from pain and that he will heal fast! Thanks for your prayers! Have a great day! I'll try to keep you updated on Gavin's progress.

Love, Alicia and Family

Tuesday, June 12, 2007

Gavin just got out of surgery. The surgeon says that he is happy with how things went and that everything should go well. I'm waiting to be able to go in to see him. The anesthesiologist decided that Gavin should stay on the ventilator until he is fully awake from the surgery to make sure his airway stays protected. He is recovering in the I.C.U. Pray that they will be able to get him off the vent today and that Gavin does well with his recovery! They plan to keep him for about 3 days.

I'll keep you posted on how he's doing. Thanks for your continued prayers for Gavin!

Love, Alicia and Family

Monday, June 11, 2007

It's Gavin's big day tomorrow! We are so glad the time has come! I feel really bad that he has to go through another surgery, but this one should make him much more comfortable in the long run. This will be his 5th surgery and I was saying to Joel last night that I'm not a bit worried anymore when he goes in for another one. It's kind of sad, but it's like taking him to the doctor. It's just another appointment. The only things that worry me are that it won't work and make him more comfortable and that he will be in pain from the surgery for the next week or so. So, these are some things to pray about for Gavin.

His surgery is scheduled to begin at 11 A.M. We have to be there 2 hours before. The boys are spending the night with grandma, so the morning should go smoothly. Gavin is expected to stay for 3 days or so. They are putting him in the I.C.U. for the stay. I am very glad about this!

I have another cute Caleb story for you. We have vacation bible school at our church this week and the boys couldn't go today because of all I've got going on here, but tomorrow grandma is taking them. I told Caleb this and he got a big smile and said "I'm so proud about that!" Then he went on to tell me, "Mom, did you know that you're not supposed to steal from your neighbor?" I said, "That's right!" Then he said, "You're not supposed to bug your neighbor, you're not supposed to bug your neighbor's donkey or his wife or anything of your neighbor's." I had a hard time not laughing out loud! Then he said, "That's what Pastor Freswick says in church!" I told him he was right! I'll explain more to him later, for now I think he has down what he needs to know! I thought if I told him it's actually coveting that you're not supposed to do he'd get confused. Plus, the fact that he thinks it's to not bug your neighbor is probably a good thing for now!

Keep those prayers going! We appreciate you and them!

Love, Alicia and Family

Thursday, June 7, 2007

We just returned from an appointment with one of Gavin's cardiologists. He gave us terrific news! He said that, according to the report of the echo that was done last week on Gavin in Ann Arbor, there have been improvements. The leak from Gavin's mitral valve is less than it was before! Also, the pulmonary pressures that had been 'sky high' are much, much lower! He said with this data we may be able to get Gavin off oxygen in the next month or two! He was also able to take him off one of his medications! One down and too many to go, but at least we are headed in the right direction! The doctor was very pleased with how Gavin looked and just kept smiling! Yay! This is all wonderful news, but keep praying because as you know, Gavin likes to pull surprises on us!

The doctor cleared Gavin for surgery next week and feels there is no reason that things shouldn't go great! The doctor we saw today isn't his normal cardiologist, but he's seen him several times while Gavin was hospitalized. I saw him when we had our appointment with the surgeon on Tuesday. Their offices are in the same building. Anyway, when we ran into him he recognized me and called me by my name. Considering that he isn't even Gavin's normal doctor, I thought, "Wow, he must have a great memory. Either that or it's a bad sign that Gavin and I are just too well known with all the doctors." I asked him today and he laughed saying "Yeah, some patients and their families just have a way of staying in your head." Unfortunately in our case it's because Gavin has been talked about A LOT with all the health professionals! Oh well, at least we know that they know a lot about Gavin and are doing their best to take care of him.
He also said that by the way Gavin is looking now, after this next surgery, we shouldn't have to be looking for anything else on the horizon for some time. This would be wonderful!

Hope this great news brightens your day a little like it has definately done for mine! Thanks for your continued prayers! We are so blessed with having you in our lives! God is Good!

Love, Alicia and Family

Wednesday, June 6, 2007

Gavin's appointment yesterday went well. The surgery is still planned for next week Tuesday(12th). I am VERY glad that he doesn't have to wait longer than that! It can't come soon enough! It should really make a difference in his life. He shouldn't be in pain with the severe reflux that he is having and no more wreching and spitting up. Plus, that uncomfortable tube that's been in his nose and throat for so long will be GONE! No more gagging on it! We can't wait! Of course, there are always chances for it not to work as it should, but we have great hope that it will.

My posting yesterday about our CRAZY boys brought about many offers of help. I really appreciate the offers and may take you up on them. They really are great boys, but have a talent for getting themselves into trouble when all together! It is harder to handle when so much is going on with Gavin. It takes so much of my time and, more importantly, my emotional energy. I just feel so bad for him and it makes my whole outlook on everything unbearable at times. Anyway, I really am glad to have the boys home for the summer. They definately bring about a lot of laughter and fun too. Although, I've threatened boot camp if they don't behave!

Thanks for your support and prayers! God has blessed us with so much!

Love, Alicia and Family

Tuesday, June 5, 2007

Gavin and I are worn out! We haven't been getting much sleep or rest. The poor little guy is really suffering from reflux right now. He doesn't seem to be in any pain from the recent surgery, but since the surgery he has been gagging and spitting up a lot. He tries to sleep, but then cries and acts like he's going to throw up. It seems to really hurt him. I am concerned that when he spits up it will be aspirated into his lungs, which with Gavin especially is not good. He already always has extra fluid in his lungs and more could cause infection, pnuemonia or more congestive heart failure. I hate seeing him continue to suffer! It is definately wearing on me! I keep wondering why this suffering has to keep going on for him! Please pray for him and me!

We have an appointment with the surgeon who is going to do the stomach wrap and G- tube today. I pray that it can be done soon. This surgery should help prevent a lot of this. Right now the date is set for June 12, but this could be changed because the surgeon already has two cases and may feel that is enough to do in one day. Please pray that it can be done soon and that it goes well!

You could also add some prayers in there about my summer home with the boys! I'm already going out of my mind! I've decided that boys are crazy and disgusting! The things they come up with and find funny is beyond my comprehension! I won't share any stories because I'd only be embarrassed, but I assure you that I could use your prayers in understanding them and dealing with them all home together EVERY day! I'm sure it will get better once we all get used to it again and when things settle down some with Gavin, but in the mean time.....

Thanks for your continued prayers and interest for our family! I'm sure you're very interested now that I've got you wondering about what those boys are up to, but for now I'm not sharing! Maybe some day when I am able to laugh about it!

Also, please be in prayer for families and staff of the crash victims from the U of M hospital. I just learned that one of their Survival Flight planes crashed and 6 have died. Gavin rode with them twice on a helicopter.(Not the same people on board, but part of their staff.) The service they do daily for patients is amazing! I know they will be greatly missed!

Love, Alicia and Family

Saturday, June 2, 2007

Poor Gavin had a lousy night! He was in a lot of pain it seemed. What seemed to bother him the most was throwing up several times. He has a feeding tube that goes past his stomach, so there isn't much to come up, thankfully! This assures that he will stay hydrated, but he still felt rotten! This morning I brought him to the hospital to make sure nothing serious was going on. Everything checked out good. They just had us stop giving him the Tylenol with Codiene. This might have been making him get sick. So far it is working. He is still quite gaggy, but not throwing up and he seems a little more comfortable. Continue to pray that he feels better and that no complications arise. Thanks!

Love, Alicia and Family

Friday, June 1, 2007

Four surgeries down and.....?..... to go. Gavin's surgery went very well this morning. So well, in fact, that I am typing this update from home! No kidding! The doctor thought he was doing well enough 3 hours after the surgery, so she sent us home. I kept asking, "Are you sure?!" I never thought that one of Gavin's stays would actually be less than they estimated! They told us to plan on 1-2 nights and maybe more with Gavin's history, but here we are, and very happy about it! The only reason that I wish we had stayed longer is that we didn't get to visit with everyone in the I.C.U., especially Nurse Missy. I felt I had better get out of there before they realized that this was Gavin they were sending home and stop us! So, Hi Missy! See you the next trip, hopefully not too soon though! I had some pictures for you. I'll try to send them to you instead.

Gavin seems to be in quite a bit of pain. I feel so bad for him! Please pray that he feels better real soon! Otherwise he is doing well. Praise God!

Thanks for your prayers! Have a great weekend!

Love, Alicia and Family