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Thursday, September 23, 2010

Bicenntenial days...200 days and counting...

I had previously wrote a very nervous and scared post. As I had stated we needed to make some decisions that involved both transferring him to a different hospital and also considering some surgeries. These are both very scary decisions to make and not easy. I am not a willy nilly person. When our dishwasher broke, it took me almost a month to research, and investigate the kind of dishwasher i wanted, the sales going on, I went into stores to try them out, I just really wanted to get the best value for my money, and be happy with my decision with no regrets. Well obviously when it comes to your child, I don't think any parent is going to enter into decisions, especially ones that could involve the life of your child, very lightly. I mean when you go buy a car you always take a test drive right? I know for some it may have seemed like I was dragging my feet, and maybe for a few, not making the best choice for my child, but I felt I had to investigate thoroughly every option for Thurston, so that I could make give him the best informed decision. My child is not a dishwasher or a car, he is a human being and I just needed to make sure that this was the right move for him. If the doctors had told me it was life or death or told me that it was urgent, obviously I would not have hesitated at all, but I had time to do some research and I am so glad I did.

Last Friday I made an appointment to go to Dell Children's hospital to see what it was like. I felt that that would help alot in allaying any fears I had especially as i had heard that the rooms were private. Now for you and I, if we were in the hospital, a private room is pure heaven, but for my sweet baby, who is so used to an open space or a bay as they call it, where EVERYONE and their mother(literally) walks by and says hi to him, talks to him, where he can hear a million conversations, it was very comforting to me to know that he was never ever alone and that he would get all the attention in the world. He is a social butterfly and LOVES to be around people, so that was very hard for me to swallow.

Secondly, I was not sold on the idea of my son getting a tracheostomy. Not that I wouldn't do it in a heartbeat if I felt that is truly what he needed, but I just had this little tick tock inside of me that was telling me not to rush into it, something just didn't seem right about it. Mostly because my son has never had really any testing or specialists looking at him. He has never even been seen by and Ear Nose and Throat doctor, his airways have never been evaluated, he has never been seen by a GI specialist, or a heart specialist for that matter. He has only been seen I think a couple of times by a pulmonologist but to me I just felt, not all of our options have been investigated, he deserves to have every possible scenario exhausted before he just simply "gets a trach" Now if for some reason all of these things are looked at and the ultimate conclusion is to give him one then so be it. But I don't think anyone would even consider an invasive surgery for even themselves let alone their children, especially one so life altering as a tracheostomy, without first exhausting other possible causes of their condition, and perhaps other treatments available.

So before visiting Dell, I was terrified. Besides the whole private room thing, we would have to adjust to all new nurses and nursing styles, new rules and regulations, new procedures, new policies, I just felt almost as if we were back to square one in a lot of ways. Also the drive is a bit further, and most importantly, I was petrified that all of the doctors automatically assumed my son would need a trach, that they would have a preconceived notion about my son and it would already be in their heads and that they wouldn't actually investigate any further what else could really be going on with my son.


First and foremost the NICU rules and regulations are OUTSTANDING and so much less restrictive than NA. Now I am in no way denigrating any regulations at Thurston's old NICU. Those rules and regulations have to be in place as Premature babies are so extremely fragile, its an extremely sensitive time for the families as there are soooooo many ups and downs and uncertainties etc. And most importantly, they expect most preemies to go home by their due dates, so it is unusual for most families to be there as long as Thurston, as any baby needing more support surgeries etc. will usually transfer out of there. So I fully support and am so grateful for those rules that were in place that protected my son in the time that he was there. Because Dell is a children's hospital, they take into consideration the fact that most of the children there have long term chronic illnesses and there is no way to predict how long the families will have to be there, so their rules and much more relaxed and geared toward making the families lives much easier. Here are just a few things that Chad and I were thrilled about:

First and foremost, FINALLY Viola and Thurston can meet face to face and spend some real quality time together. Because viola is on a delayed vaccine schedule, she was not allowed into our NICU(again I totally understood this and supported that) but now I can bring her in every day so they can finally get to know each other. Plus, if I want to go see Thurston I don't have to have a babysitter....I can just bring Viola with me, wow that takes a ton of stress off of us right there. After hearing this, I was sold!!!! That was almost reason enough to move Thurston.

Second...They do not ever close. Chad used to have to wait until 8 o'clock to go into the NICU to see Thurston which meant he had to stay at work an extra hour which meant that he came home later. Also, there were times that I was only able to go later in the day and would have to leave by 630 cutting short my time to be with him. Now we can go in any time we want, whenever we want, and stay as long as we want, which is very nice indeed.

Third...I can bring in any visitors I want any time. We were limited to only 4 visitors the entire 7 months we were in the NICU. That was hard on us as our family lives far away so when we signed up Chads mom and dad, that took up 2 of the spots and they only went in 2 whole times when he was first born. We signed up my friend Karen who also came to help us for 2 weeks and she only saw him about 2 times and then she went home. Then one spot was left when my mom came to visit and then she went home after 9 days. The director was nice enough and understanding of our situation and allowed for us to sign up Chads brother Brad who was only in town for 5 days. So Thurston literally only had probably 10 total visits from other people beside Chad and I in the almost 7 months that he was in the NICU, while other families who had family in town were able to bring them in daily. So we are excited that Thurston will now be able to meet more of our family and friends. More YEA!!!

Fourth...We get to sign up 4 very special people, who will be able to come see Thurston on their own, without Chad or I having to be there. This also will be incredible as we will have more people to give him lots of love and holding when Chad and I cant be there.

Fifth......They have volunteers who come in and spend time with the kiddos. They also have a child life program that includes development, OT, pt, speech therapies, and incorporates Viola in the mix to help her adjust to her brother and his hospitalization. FANTASTIC!!!!!

Sixth...Just a silly thing really but as a nursing mother, they feed me!!!! Yup I get to order from the cafeteria and they feed me for free...Hey Ill take it!!!!

Seventh.....Ok remember my post about HATING those damn sticky labels and the amount of time it takes to clean the bottles for my milk...WELL they provide all the bottles and do not reuse them so I never have to wash another bottle, or try cleaning the stickies off of them ever again. AND I get my kitchen counter back...It does make me cringe a little about the waste of plastic, as an avid recycler, however they said that breast milk is a bodily fluid so for germ purposes they cannot reuse the containers....Hey Ill take it, It would be nice for the break and free up some extra time for me to do other things yea!!!!

Eight...within the private rooms they actually provide my very own breast pump. I don't have to go scrounging for one ever again and the nurse don't have to either YIPEEEEEEEEE plus it is very sanitary to do it that way, so you don't have to worry about other peoples germs...

Ninth....They want me to use my fresh breast milk, and not my frozen if they can help it, and they are now giving Thurston 100 percent breast milk fortified with neosure so that is fantastic

AND drum roll please...the tenth and obviously most important reason is that Thurston will be evaluated by every specialist known to the pediatric world. They are all there, just popping their heads into the room, and it is great to get a ton of new ideas as to how to fix my poor little sweet boy. All of the doctors at NA told me that Dell was the best place for him for this reason alone, and were huge proponents of him moving there, I was just so nervous. We have built a family at his NICU, I love all of his beautiful nurses, RTs, Pharms, Doctors, Receptionists, custodians etc. and they love my son with all of their hearts and souls and I am indebted to them for life. But after leaving on Friday, it just was a no brainer for me, my fear flew out the window and I knew that this was the place for him. It was very emotional to leave however, and I cried the whole time. It was just to painful to say goodbye to everyone. I will have to pop in later, when things are settled to thank them properly for everything they have done for us.

So on Tuesday of this week, just one day shy of his 200th day of life, his bicentennial day if you will and just a just a few short days after my visit to Dell, we traveled to my sons new residence. It was his first trip ever outside and of course, he slept through the whole trip, how funny. A new post of how his first couple of days went will follow this one but just wanted to update everyone on the move.


  1. So grateful this move has turned out so well, for Thurston, for Donna and Chad, for to the days ahead and what the doctors will recommend for our sweet little man...

    xxoo Ama

  2. OH my gosh Donna! The fact that Viola and Thurston now have the chance to get to know each other just makes me cry! Every other amazing thing that Dell provides sounds wonderful. I hope that this will help ease some of your burden that you've been holding for sooo long. My friend, I wish I could hug you!! The news that so many different specialist are readily available to walk though this journey with you is also more than wonderful. I can't imagine how hard it must have been to say goodbye to NA but I can hear how optimistic Dell is! I miss seeing you and what wonderful, wonderful news this is today! Happy 200th day sweet Thurston, I can't wait to meet you! <3

  3. It really sounds like things will be better, considering that Thurston has to be in the hospital. I am so happy for Viola! It's about time!

  4. sounds like a fabulous fit for all. what a sweetie sleeping through the ride :)
    much love to you and your whole family.

  5. That sounds wonderful. I hope it is everything you are hoping for, and I pray that some of the specialist can shed some light on ways to help Thurston. That is awesome that you can just bring Viola whenever you want and they will feed you. They fed me too when Camdyn was there. That was nice. The food was pretty good. I hope you enjoy being there, and I can't wait to hear what the specialists recommend for your sweet son.


  6. Donna! I cannot tell you how happy I am to read this post! David and I had a similar experience when we were transferred to St. Davids main for Miles's surgery -- NO restrictions on how many visitors you can have! I couldn't believe it. Miles finally met a few of our friends that have supported us all this time. I can only imagine how it must be to have Viola and Thurston FINALLY be together...all of you together, as a family. I am almost in tears. I am so excited to see Thurston enter this new chapter in his journey. Bless you and your family, and I hope he continues to receive the very best care he deserves. Happy 200th day Thurston. You are a soldier. Many bright days await you, my little friend. I know it in my heart. Just keep swimming.