Our New Home Away From Home

I just don't even know where to begin . . . First of all, I am here in SLC with my mom and Gavin is NOT! There was a staffing problem and they did not have enough nurses to admit Gavin today. As of right now, we are expecting Gavin to be transported at 7:30am tomorrow. We drove up here to SLC this morning and we are now here at the Ronald McDonald House. Never in a million years did I ever think I would stay here. Now that I am here in this situation, I am so grateful. It is a VERY large house with about 20 bedrooms with attached bathrooms. They have a huge kitchen that is always stocked with food and meals at night. It's only $10 a night, and I just don't know what I would do without an establishment like this house. It is only for parents with sick children who are at the hospital. I haven't gotten to talk to many people yet, but I am sure we are all in the same boat here. Never again will I walk or drive passed a Ronald McDonald House Donation Box without dropping money in it. Also, just so everyone knows. . . one of the main ways they collect money is with pop tops. So, EVERYONE SAVE YOUR SODA TOPS! I will take them in and try to repay them. This is just amazing . . . now only if they can help Gavin. . .

Leaving Las Vegas

This picture is of Gavin's "big boy"bed in the NICU at Valley Hospital.

So, tomorrow morning Gavin will be taking his first airplane flight! After much work, prayer and effort . . . Gavin will be transferred to Primary Children's Medical Center (PCMC) in Salt Lake City, Utah. This has been a journey full of ups and downs. We tried UCLA, CHOC and Loma Linda Hospitals but they did not have any beds for him. It was such a disappointment. I really felt like we would never get help for him. It was discouraging as a mother to know that my son needs more help and I could not get him where he needed to be.

I am so grateful for the staff at Valley Hospital for working so diligently on Gavin's behalf. I am amazed at how much the nurses, doctors, respiratory therapists and other staff members love Gavin. I can honestly say that the people in the NICU at Valley Hospital are my friends. They cry when we are sad, and they are joyful when we have successes. I think they are sad to see Gavin go. . . but I know the NICU may be a little less dramatic now. :)

We have also made friends with many of the parents who have children in the NICU as well. Gavin has a little girlfriend - Samantha. Her bed has been next to Gavin's a majority of the time and we have become good friends with her parents. It's amazing the kinship you feel with people you normally wouldn't have that experience with. I told Samantha's mom that I was truly grateful to have amazing people like them to go through this experience with.

I am really sad to leave Las Vegas and spend who-knows-how-long in a different city, away from my home and away from Jason. I am so lucky to have my mom and that she can go with me. Jason will come up to SLC on the weekends and my mom will go back home when he comes up. This will be quite an experience. I feel like I am gearing up to run a marathon. I am scared of the diagnosis, or lack of one. I am scared to be in a new place with new people, but we are lucky to have so many family members there to be with us. This is a new chapter of Gavin's life, and I guess I am ready for it too. Look out PCMC . . . here we come!

A Weekend With Grandparents

Two Steps Forward . . . One Step Back . . .

The last time I posted Gavin had come off the ventilator. . . since then he has had to go back on. Thursday afternoon I went to visit Gavin around 4:00. When I got there I went to the sink to scrub in and within a few moments I heard yelling from the room where Gavin was staying. I saw nurses, doctors and respiratory therapists running to his bedside. A nurse closed the blinds to the window where I was looking in and I panicked. This was the first time in my life I actually felt like I was going to pass out. I could hear that there was a lot going on in his room and I waited for a nurse to come talk to me. I had never seen the staff move that quickly - I knew it was bad. After a few minutes a doctor came to tell me that it appeared as if Gavin had a seizure. We knew this was a potential problem, but the EEG test had come back negative for seizures three times. I have a "mother's instinct" . . . I have felt for the past few weeks that Gavin's "blue episodes" were due to seizures. There is a certain appearance Gavin gets right before he stops breathing and turns blue. He gets a blank stare, goes very ridged, turns red and then immediately turns blue. I have seen this over a dozen times, yet the doctors have not listened. This is one of the reasons were are taking him to a larger regional children's facility. He needs more neurological testing than they can do here. It was a very scary experience to witness. Because of this seizure, Gavin has had to go back on the ventilator. He does not need it to breathe for him all of the time, however, it will breathe for him if he goes into an apnea spell. They have also started him on caffeine to help him if he IS forgetting to breathe. . . my mother's instinct really tells me he is seizing quite often and that this may be some of the reason why he is having a difficult time keeping his breathing steady. We are working on getting him to another hospital, and the insurance has approved UCLA. We haven't decided exactly what to do, but I know that we will be led to the right place for Gavin. Since his episode on Thursday, he has had much better days. We keep our fingers crossed that we will find some answers. I just wanted to share a few more pictures of our little Gavin. He is a beautiful boy and every time I stand by his crib, I get the feeling that it will be better than we think it will be. This is such a journey . . . I think I could write a book about it! :)

NO VENTILATOR!

We have very exciting news from the weekend! Gavin was able to come off his ventilator! I can't even begin to explain how big of a deal this is. The picture shows the new oxygen collar he now has over his trach. On Friday night I got a call from the hospital telling me that they were turning of the breaths going in and that Gavin would only be on a small amount of oxygen and pressure. Jason and I were ecstatic! We went to the hospital on Friday night and Jason held him for over an hour. His nurse, Ellen, told us that Gavin sleeps much better after he has been held. This made us feel good. . . like we were actually able to help him in some fashion. Saturday morning we got up and went to the hospital to find that the respiratory therapist felt like Gavin was doing well enough that they were attempting a oxygen collar and taking him off the vent completely. As they were preparing the collar Gavin knocked off his vent and the respiratory therapist decided he was officially done with the vent. When they put the oxygen collar on Gavin, we all watched the monitor very closely to see if he dropped his saturated oxygen rate. We were all very relieved to find that he did very well, and has since done very well without the ventilator. He has been having a little bit of breathing problems during his feedings, and the doctors are thinking that his stomach is stretching and putting too much pressure on his lungs, diaphragm etc. I guess just a little bit more time and patience. . . We are just SO happy he is off the ventilator and we feel like we have truly seen a miracle in our little Gavin!

Gavin's Feeding Tube

So, a lot of people were wondering about a feeding tube and how it works. . . here is the run down. As you can see in the picture, Gavin has a clear port on the left side of his stomach. From the port there is a tube connected which feeds into his stomach. Milk is poured through the tube directly into his stomach. In about 4 to 6 weeks the large clear port will be removed and a button will be placed there. It will be very small and the tubing will be small enough to fit under clothes. The small marks you can see on his right side and belly button are the surgical incisions. . . isn't this amazing? I am so grateful for all the medical advances that make life for Gavin a little bit easier. Today was a good day for Gavin. He is slowing weaning down on his ventilator and it will be interesting to see what the next week will bring. We still pray for a miracle, but we do realize Gavin himself is our little miracle.

Gavin's First Few Weeks

Here are a few pictures of Gavin. We know that some of the pictures are a little scary. . . Gavin was VERY sick when he was born. It is truly a miracle he is here. We hope that by showing these pictures of Gavin with his trach, etc. we can teach people about him. We love him so much. I never knew that I could love a little boy as much as I love Gavin. There is something sweet about him. . . you can feel his sweet spirit through the pictures. This has been and will be a very difficult journey for us, but I am so glad that I am Gavin's mother. If he had to come to this earth with these problems, I am glad he has been sent to me and Jason. We both feel that we are truly blessed to have been sent this very special boy. It's a hard process to watch and be patient, but I truly feel like we are the lucky ones.

Our Eternal Family

Over these past five weeks, my life has completely changed. I knew that life would change when we had children, but I never knew it would be this much. It is hard to find solace and comfort when your baby is critically ill in the intensive care unit, and there is nothing you can do to help him. It is exhausting to go down to the NICU several times a day just to see your baby and to watch as doctors and nurses work on him. I get butterflies every time I step foot in the hospital because I fear for my son's life. I don't want to be depressing, but honestly. . . how can a mother do this without having a few bad moments? Some days are getting easier, but some days are excruciating. However, I find comfort and peace in one thing. . . Gavin, Jason and I are an eternal family. I love this picture of Gavin holding on to my finger. As we looked at this picture, my mother pointed out that everything in it is white. For some reason, this picture brings me so much comfort. It reminds me of the big picture in life. This life isn't about who is wealthier, more beautiful or smarter. . . this life is about family and those we love. The size of your home or the type of car you drive is irrelevant in the big scheme of things. I am ashamed that it has taken this for me to understand this principle. I think I have always understood it in theory, but I haven't lived it until this point in my life. My little Gavin will have issues, and it will take years to understand many of them. I find comfort in the gospel. I find comfort in knowing that those around Gavin at this point in his life will love him no matter what differences he may have. As Jason and I talked tonight we decided that Gavin is the most important thing we have ever done. At one point I prided myself in my college degree, career and my future goals and aspirations. Every goal has changed in my life. . . it's not that I have set aside my personal goals, but I understand that I will now be a mother, teacher, therapist and nurse to my little boy. And you know what? There is nothing I would rather do.