Monday, July 8, 2013

Quick update.... Wyatt Gill and Leslie Avenue

So, we have had a whirlwind since my last update!! We were told on Friday, that if Wyatt continued to gain weight and eat well that we could POSSIBLY go home on Sunday. Of course, he lost 4 oz Friday night. When the MD's did rounds on Saturday morning, the doctor said she would add some formula to his feedings, let me put him to breast 2 times a day, and if he at least gained overnight on Saturday we could still go home Sunday.
I was ecstatic, but petrified at the same time. I know I am a mom, I was a mom, and have always wanted to be a mom.... but now it was reality. If this perfect little creature in my arms gained just even an ounce we would go home the next day. Kevin and I would be responsible for him, to keep him safe and breathing and healthy. We wouldn't have any monitors at home to tell us he was OK, no nurses to pick up the 3 am feedings when mommy was too tired, no cafeteria to cook for us... It would be us 3, a family finally with a lot of work to do.
As I'm sure most of you know by now, Wyatt gained Saturday night and discharge orders were written Sunday morning. We had one of our favorite nurses during this weekend, which was so wonderful to have her be a part of this experience. She was on the ball about getting us home too! She sent daddy and grandma down with our luggage and started going over our instructions for home. We loaded the car seat, complete with a baby now, in the wagon and headed downstairs.... I was in charge of 'wheeling' Wyatt down stairs, and with this task the worry truly set in!! Pat, the RN, could tell I think because as we got off the elevator on the ground floor, she asked if I was OK and how I was feeling. I just looked up at her, and all I could say was 'I never thought this day would come' and in my mind I cannot say that I ever actually let myself think or dream of Wyatt coming home. Maybe it was a coping mechanism or maybe it was my way not to stress out about anything else then the task at hand, but wheeling my son down to the car from his NICU room, the only home he had ever known, I felt like we had conquered one of the most difficult battles we ever would.
I know that CDH comes with many, many hurdles and we are already running into some of them only being home 24 hours, G tube questions and volume of feeds issues, but I cannot thank God enough for letting me have my baby at home. So many people have prayed for Wyatt and our family and I have never felt more blessed in my life, EVER!! I have this perfect little miracle baby, and wonderful husband that is already one of the best dads I have ever known, and the best/most supportive friends and family a person could ever dream of.
I know that I will be updating this blog as we hit milestones or set backs or frustrations or successes and hopefully people do not forget to pray for Wyatt even though a big part of our journey is over. CDH is tough, tough diagnosis and defect. There are never any solid answers and the journey or 'roller coaster' never ends! Please not only pray for Wyatt and our family but for all babies and families that are suffering with hurdles of CDH or any birth defects/problems!! It is truthfully something I nor anyone else will ever understand but great things and babies (people) come out of these situations!
Until next time......

Thursday, July 4, 2013

Update: Day 11 thru 15


It's been a couple of days... We started feeding Mr. Wyatt on Sunday. We started off slow and for the first 24 hours he got 10mls of pedialyte in a bottle. At this point, we are going to try not to use his G tube unless necessary. The first couple feeding were successful but difficult. Wyatt wasn't sure what to do with this new experience but he would eventually start sucking and get down the 10 mls. No reflux or pukes so this was a good sign.
Since we did so good with the first day of feeding we started him on breast milk Monday morning, 15 mls every 3 hours. As long as he was tolerating feeding, we would increase the amount 15 mls every 12 hours until we got to 'full feeds'. This seemed like big jumps in amounts to me but I was so happy he was eating, and eating my milk I didn't argue. The first amounts, 15 mls, was a breeze. Wyatt was a natural and he was having no trouble at all! When it was time to increase to 30 mls, they let me put him to breast for the first two feeds, and again Wyatt latched and seemed to have no problem.
During this 'trial' phase of feedings, we hadn't had a poop... but no one was concerned so we kept pushing forward.
During the early morning hours of Tuesday, the RN did a feeding for me while I rested. I woke up about 45 minutes after this feeding took place and something didn't feel right. Wyatt was VERY fussy... the nurse had tried and swing, soothing music, a vibrating device in his crib to help and nothing would console him. When I held him, he would settle down after about 10 minutes of rocking and soothing from mommy. This was a good feeling that I could comfort him, but then I began the 'worry' phase. Why all the sudden was he so uncomfortable? The RN seemed pretty concerned as well, even ordered an x-ray to make sure everything was OK.
I was back to the night we found all the air in his belly and he extubated himself. I became very anxious and started thinking the worst... No sleep, a non consolable baby, and talk about 'air' in his belly equals a terrible night/morning for baby and mommy. I just knew this was another BIG set back and that we would somehow/some way end up back in the OR or on a vent or some huge step back and I was petrified!! I sat in the rocking chair holding my little man for 10 straight hours... no getting up to pee or eat or sleep or even move. I was the only thing that could keep him calm and I wasn't moving or letting him go until things were settled down again.
Turned out that the x-ray looked fine and he was very back upped with poops and transitioning from no food in his belly to a pretty hefty amount of breast milk in his belly. Poor baby had the worlds worst belly ache!! As the day went on, he got to feeling better and began pooping. His eating/sleeping habits however changed dramatically. He was now not wanting anything to do with the feedings and was sleeping all the time. I was grateful he was not uncomfortable anymore but wondering if this change in his behavior was good. At this point I was thinking that the doctors would tell us he wasn't ready for PO (by mouth) feedings and that we would give him the breast milk in his G tube. It was the total opposite. They wanted to push through, they said to go ahead and continue to increase his feeds as long as he wasn't spitting them back up.
So, we did. Over the next couple of days we increased his feeds by 15mls at a time until we got up to 55mls every three hours. He is still pretty lazy while feeding and after about 20 mls is no longer interested but I am working with him and he seems to get a little bit (I mean may a ml or 2) better with each feed. If he doesn't eat the entire 55mls, we put the rest in his G tube which the RN's have been letting me do and I am comfortable with it but wish we didn't have to use it. I just wish he could eat what he wanted. It is beginning to feel like a challenge and a struggle every time the three hours is up and it is time to feed again. I just want to enjoy feeding my baby, not look at it as a test we have to pass before we can go home. I don't even really want to say in fear that is will jinks us but the last feeding we did he actually took all 55mls PO : ). I'm not saying that was easy or I didn't REALLY have to work with him to take, but never the less he did and I am one proud mama!! I just hope we aren't pushing him to far to fast. We have to continue to gain weight even if we are taking the full feeds and when a baby has to work a lot to eat they begin burning a lot of what they are taking in...
I need to realize that even though I am the parent, with medical background, the doctors do this every day and help to get so many kiddos home and healthy. I may just ask if we can back off just by like 10mls tomorrow in rounds just so it isn't such a struggle with each feed. Then we worry about him loosing weight and that brings up a whole new ball park of issues. I have been told that even before a discharge date is discussed Wyatt has to have 2 consecutive nights of weight gains while on full feeds, PO or by G tube. We weighted 6lbs 9oz last night so we will see what we get tonight.... 
I also need to remember that even though this may be a struggle right now, we have made leaps and bounds in a very short period of time. This scares me to say out loud because I fear, every minute of every day, that something will happen or we will have some sort of set back but in reality Wyatt is doing very well right now!! God is great and we are so thankful every time we look at our sweet little boy!! Prayers for moving forward and that Wyatt gains weight and takes his feeds with less struggle!! Until next time....


One happy baby after a feeding : )

Look at those eyes a beautiful cheeks!!! : )
Happy 4th of July!!!!!!!!!!!!!!