Sunday October 28, 2007

Sunday morning our sweet little Gavin returned home to our loving Heavenly Father. It was a sweet, peaceful experience and I don't have too much time to blog about it right now. . . but I wanted to let people know. Jason and I were able to lay in bed and hold Gavin by us for a few hours until he passed. His life was beautiful. He is our beautiful blue eyed, blonde hair boy who is waiting for us after this life.

We are having a very small funeral service on Friday November 2, 2007 to remember our Gavin James Bailey. It will most likely be held at the LDS church on North 215 and Jones by the Palm Mortuary Park.

We don't want people to be sad. We want to celebrate Gavin's three months of life. Hopefully I will have a bit more time to write in a little bit. . .

A Day That Makes Our Heart Stop . . . Literally

I don't know what to say about yesterday. It was a really bad day. I thought I would just post quickly about it. Yesterday Gavin had a nurse who wasn't too attentive to his needs. I just never felt like I could leave him - so I didn't. I sat by his bedside for nine hours yesterday, and I am glad I did. Around 5:00pm he was hooked up to an EEG machine to look for possible seizure activity. The nurse was suctioning out his nose and he became very upset. We are not sure if he had a seizure, or if he held his breath - but he stopped breathing completley and eventually his heart stopped. It only took a few seconds to get him going again, but they did call a code blue and about thirty (yes - I really mean thirty) people came to his bedside . . . crash cart and all. It was terrifying. I bawled and freaked out. But, I have to say there are VERY good people in this world. As he started to drop the mom of the baby next to me jumped up and held on to me. When the director of the NICU heard the code, he immediately was at Gavin's bedside and once he saw that Gavin was doing better he walked over to me and hugged me. He kept his arm around me until Gavin was back on track. He never left my side. I guess my point is . . . people care. People really care not only about Gavin, but about us too. The mom next to me could have just watched as it happened, but she didn't. She came to help in the way she was able to help. I want to be like that - helping people even if I don't know them that well.

Gavin has had a better day today. He is eating through his G-tube (just a very small amount) but so far it's working. Once it's working we will be on track to go back to Vegas. Now I am heading back up to the hospital to do physical therapy with Gavin. It's my good part of the day. :)

I hope I am not too depressing . . . it's just a roller coaster. It's a better day today.

Our Roller Coaster . . . aka . . . Our Life!

First of all . . . I just typed a huge entry about the events of the past week, and the Internet connection failed so I have to do this all over again. GRRRRRRRRRRR!!!!

One of the things that has been very evident over the past three months is that life is a roller coaster. There are many ups, and there are many downs. This past week has been a really good week for Gavin. Although we don't LOVE the answers we are getting, we are getting answers. I'm the kind of person who can deal with things better when I have information. That must be the control freak in me. . .

We had a family conference with Dr. Beachy this weekend (Jason was able to come up again) and she said that Gavin will show what he can do with time. Doesn't she understand that she if talking to the most impatient girl in the whole wide world?!? :) Actually, it's really okay. It has taught me that I don't have to be in control of everything. I guess a roller coaster ride wouldn't be all that great if you predicted everything. Gavin will show us his limits and successes. This weekend Jason pointed out that we will be thrilled with every milestone Gavin accomplishes. We know he will be delayed and there are some milestones he may not reach, but we have seen so much improvement over the past month or so. He is much more alert and attentive and he seems to know we are his parents. You should see the way his eyes light up and how much he kicks his little legs when he sees Jason. It's like he has been waiting for him all week. :)

There isn't too much in the way of new news about Gavin. The "down" part of the roller coaster this week is that Gavin has developed another lung infection. I guess this is something we are really going to have to watch for Gavin. A trach is an open airway to the lungs, and being in a children's hospital has brought it's fair share of germs. This has made him have a bad weekend as far as breathing goes, but as of tonight he looked much better. It seems the antibiotics are helping Gavin. The "up" side of the roller coaster this week is that we are talking about a back-transport to Las Vegas within the next few weeks. They will send us back to a hospital in Vegas to coordinate his last bit of care and his home health care. We are looking at 24 hour care at home for this little kido. Hopefully he won't need it too long, but it will be good to have as we get used to taking care of him at home It will be interesting.

As I was typing this I realized how factual I sound. It's not that I am negative, it's just at this point in the game facts are what we know. It's easier for me to get through this if I know exactly what I need to know. Unfortunately, Gavin is a mystery. I guess Heavenly Father is teaching me how to rely on him. He builds our roller coasters, but he never will give us more than what we can do. We have seen miracles, and I intend on asking for a few more. . .

A Tribute to My Mom

I don't know how I could possibly be doing all of "this" without my mother. I never knew how lucky I was to have a mom that stayed at home. Through this whole experience with Gavin, my mom has gone to the hospital with me literally every day. She has been there with me to receive happy news, sad news, questioning the doctors and most of all for moral support through this difficult time. She has stayed with me in SLC . . . leaving her family at home. I can't imagine what sacrifices she is making to help me. I am so lucky to have a father who is so supportive and helpful so that my mom can be with me. She has devoted days and weeks to helping me help Gavin. She will never understand how grateful I am to have her as my mother. She is a voice of reason and logic when I am unreasonable. She is a shoulder to cry on and she is great for a laugh. Not only is she my mother, but she is truly my best friend. I love you momma!

A Gavin Update

I have been so busy with our little Gavin that I haven't had too much free time to blog. I decided this is my only form of journaling . . . and I should be better at it. We had a nice weekend with Jason here in SLC and I was sure glad he was here. On Friday we found out conclusive news about Gavin's cranial nerves from a more specific MRI result. It appears that Gavin did not develop cranial nerves to hear on either side. This means that hearing aids and implants will not help him hear at all and he may have issues with balance as he learns to move. I guess we will be learning sigh language. We also found out that Gavin does not have any facial expression nerves on his right side. This may explain why his mouth falls on that side. On his left side he may have SLIGHT facial expression nerves. The serious problem is without facial movement swallowing is virutally impossible (try swallowing without using your cheeks) and this means that we will need to suction him to keep his airways from building up secretions and blocking oxygen from his lungs. Perhaps he will be able to adapt as he grows, but this will always be an issue for him. It seems if we keep the secretions clear and out of his throat and mouth he keeps his breathing patterns much more stable.

As for a diagnosis, we have been told that there is a very good chance we won't have one. I THINK we can accept that. . . just as long as we know what we need to do to help Gavin achieve all he needs to do. He is the best thing that has ever happened to us. I know that sounds odd because this is so hard to do, but I truly believe there is a purpose in all of this. He is here to help us.

We have done a LOT of physical therapy this week. Many of these pictures are from the PT sessions. We have a really fun time with him in the mornings doing this and then he sleeps for the rest of the afternoon. . . I just it's just too much work for him! :) Infact, yesterday he fell asleep right in the middle of PT so we just let him sleep in his boppy on the floor! (There is a picture below)

Here are a few random pictures from the week!

Gavin Likes His Space!

So, people who know me know that I have a bit of a "personal space issue." It seems that Gavin has inherited this from me! (At least this is something we can laugh about!) Last night I went to the hospital and as I was dressing him, he pushed me away and proceeded to stretch out his cute little arms and legs. He stayed that way for a few minutes and it was fun to capture it.

We still don't know much about his cranial nerve issues, and today the doctor told us that it would be two or three months until we get the results from the CHARGE chromosome test. More likely than not, we will go home without a diagnosis. I am okay with that. . . at least it gives room for hope. He is doing much better with his breathing if we consistently suction him, and he is starting to cough. Coughing is a HUGE deal since it means he is learning to manage his lung secretions better. Now if we could just learn to swallow. . . who knew it was such a big deal?

Starting next week or the week after, we will take out the NJ tube from his nose and start feeding him through his G Tube again. The G Tube is looking much better and is healing well. We are still battling the pneumonia, staff and strep infections with antibiotics and when they are cleared up we will be able to have him be IV free! (That means no more needles in the head.)

Jason is flying in to SLC today, and I am getting ready to go get him. Hopefully we will have some fun daddy/son pictures to post this weekend!

A Family Weekend

I should have blogged about this last time. . . but the three of us had a nice weekend together. Jason was able to come up last Thursday night and he stayed until Sunday night. It was fun to be together as a family for the weekend. This is a picture we took Saturday night (I know I look thrashed, but you know. . . under the circumstances . . . ) It's so hard being away from home and it's especially hard to be away from my amazing husband. He has been such a great father, and I know he would do anything for Gavin - he already does. Anyone who really knows Jason knows that he is a kind, driven, funny and sensitive man. He is already an amazing father.

As for the Gavin update - we found out his auditory nerves to his ears are not there, or are so underdeveloped that they will not function. So, now hearing aids and implants are NOT an option. As of right now (because we all know how information changes on a dime) we think his optic nerve for his eyes are in place. We don't know his visual acuity, but he should have the ability to see. And, from a mother's perspective I think Gavin can see. I don't know how well, but I have watched him follow me just a bit and try to focus. His eyes roll a lot. . . could be a strabismus issue. His breathing is much better. I know it's gross, but when kids don't swallow all of their secretions build up and then they thicken and it's hard to breathe. In Gavin's case, his trach can get plugged with secretions and that seems to be when he "desats" or doesn't get enough oxygen. The ENT cleared out his sinuses and throat really well on Sunday, and since then Gavin has done better. He will still desat, but when we suction him he comes right back up. Apparently, that's an acceptable reason to desat. So, for today . . . it's a good day.

We are so lucky to have an amazing support system. I am in awe at the things Gavin has done to help people already - and he hasn't even come home yet! We love everyone who is helping us through this difficult time. We love you all!

Gavin's First "Play Day"

It's now been a week since we arrived at PCMC. We have been through numerous tests and we have gone through many ups and downs. We have found out a bit more about Gavin . . . we know now that he has a small pituitary gland which may be a problem in the future with growing. Jason and I have decided that it is really okay because we aren't tall people! :) (I know that sounds kinda bad, but if we don't laugh, we cry.) We also know that the cochleas in Gavin's ears didn't not develop completely and that he may also have underdeveloped optical nerves. This means that his hearing and sight may be diminished, or not there at all. Maybe it is me trying to be an optimistic mother, but I think he can see and hear just a bit. We talked with the ENTs and they will start Gavin on hearing aids in the next month or so if he is still here. We are still waiting for a consult with the opthamologist. some of his eye tests look okay, some don't. . . some say both eyes are bad. . . some say his right eye is okay, but his left is bad. There is just too much up in the air to even know what to worry about. We also found out yesterday during a bronchoscopy that Gavin's airways are not floppy anymore, but the amount of secretions and his inability to control them (swallow, cough and clear his throat) may be a significant factor in his breathing "episodes." We have watched him start to cough a little and it's good to see that his respiratory muscles are improving. We just need him to swallow so his secretions won't pool and thicken in his mouth and throat. Who knew swallowing would be such a big deal?!?!?! We also found out yesterday that he has a respiratory infection . . . so now we are back tracking with the secretion issue again. Today we are supposed to have a nerve/muscle test and we are starting with speech therapy to help him suck and swallow. We hope this will help him.

The best part of the day today was that we got to start physical therapy! This is to help him improve his muscle tone. We learned how to give baby massages so he can learn to recognize the different parts of his body. Then, we got to get down on a floor mat with him and work on muscle movement and strength in his neck. They are thinking this will help him gain more strength to learn to swallow. It was very fun to play with him on the floor like a "normal" mom! This will be a long journey, but he is definitely worth it. I just love this little guy so much.



My aunt Laurie went to a Stake Conference a few weeks ago where Brother Holland spoke. He spoke about trials and how to endure them. So many times along the way I have felt like we have been forgotten . . . that is just my lack of faith. One thing that Brother Holland talked about was how the Lord loves broken things - and the we shouldn't be angry if he breaks our hearts. That is how I feel. I feel like I have a broken heart in many ways. My heart aches and breaks for my little Gavin, but I also feel like I have learned how to have a broken heart and a contrite spirit. I have learned that it's okay to be broken. It's okay for Gavin to be this way. . . he is here to teach us how to return to our Heavenly Father. He has already taught me more than I could ever teach him.




PS - Don't you love his hair!?! Look how long it is!

Our First Three Days at PCMC

This is our third day here and there has been so much done! We have met with geneticists, neurologists, ear nose and throat doctors and many more. Gavin has had so many tests done, I can't even name them all. Primarily he has had an EEG, EKG and an extensive hearing test because he keeps failing his hearing tests.

The conclusions are still unknown . . . at first look the geneticist could pin point a "syndrome." The issue of Moebius is still on the table and so is a syndrome called CHARGE syndrome. CHARGE stands for :
Cranial Nerves
Heart
A (I forgot, but it has something to do with nasal structure)
Renal
Genital
Ear . . . the three issues that make this a possibility is his cranial nerve problems, heart and ear problems. The others don't apply, so the doctor is waiting for the more conclusive hearing test results. That will help him to decide whether or not we should look into this more closely.


Other than that we are waiting. Things work at a whirl wind speed here. . . much different than we have been used to. Some parents complain that things take so long, but I just smile and thinks to myself "they have no idea what waiting really is."

Gavin had an OK day - he had a few little episodes that made the nurses react more quickly. He is showing them what he is capable of. :)

They Branded My Kid!!!

I think this is so funny! You can't see this very well, but here at PCMC they keep tags taped on the babies leg! I guess this is to keep everyone where they are supposed to be!

Today Gavin arrived by airplane in SLC. To our surprise Jason was invited to go on the airplane. He was really anxious and excited to stay with Gavin through his transfer. Jason called in to work and left with Gavin at 11:00 this morning. Jason said Gavin did well during the transport. I was so worried about him having a bad episode in the air. What if he did something really bad and needed more help? Oh well, I guess this is something I don't need to worry about anymore. I am just so glad my boys were able to get here safely.

Once Gavin arrived at PCMC we met with a Social Worker to gather information and then we were FINALLY able to see Gavin. It had been over 24 hours since I had seen him. It was the first day I wasn't with him and it was really hard for me. It was so good to finally see him. We met with a neurology intern who took an extensive history of Gavin. She spent about an hour with us just talking. The neuro team will look at Gavin first thing in the morning and the geneticist will be seeing him on Wednesday. They had a nurse come look at his Gtube. . . that is all she does! A Gtube nurse!!!! It is amazing all the resources they have here. It was good to see that he was doing well, and we are so glad we are in a place that has the resources to help Gavin. It's scary but good.

I am a creature of habit. Anyone who really knows me will know that I have anxiety issues when I am thrown into a new environment and a new schedule. I run at a really high level of anxiety until I know what I am doing and feel comfortable. I like new places, but it really takes me awhile to warm up to new-ness. People are so nice here, but I really miss the staff at Valley Hospital. The NICU in Vegas was only for about 20 babies . . . the NICU here is for 50 babies. It is a wonderful facility, it will just take time to get used to it.