The First Two Weeks, Part TWO

I adore this picture!
I should mention that at this point (when Jett was transfered to UMMC) we were obviously distraught that our newborn had just left us in an ambulance, but we were not fully aware of the severity of his situation. Since Frederick didn't have pediatric surgeons, he needed to be transferred to a facility that could meet Jett's needs. I think I was mostly sad that Jett had to be transferred, and not overly worried about his health (although trust me, it was on my mind! And I was praying....really, really hard! Harder than I ever have in my entire life!) I was in denial.

I knew they were suspecting Hirschsprungs Disease, but I still thought that everything would have been SO much better and less emotional if there had been pediatric surgeons here and we had been able to stay local with Jett. For obvious reasons, it would have been easier-- we would have had a place to stay, we could have seen Tage and Mason more, could have gone to be with Jett in shifts, wouldn't have had the emotional departure in the ambulance... etc. But it wasn't until a few days later, when his belly had gone down more than 5cm, that we realized just how distended and at risk he really was. 5cm is A LOT for a newborn.


So.... Jett was transferred Tuesday afternoon on Nov. 2nd. After the ambulance left, Kevin and I realized we couldn't get back into the hospital from the door we had come out of. So, we walked around the hospital, back to the main entrance, and through the main lobby, back into the birthing center, and back to my room... all done in my pjs and socks. Okay, so they were Kevin's pjs, red plaid bottoms and a white shirt, and brown hospital socks... I was a vision of beauty!


When we got to my room, I called for our nurse, who came in and I said we wanted to be discharged immediately. Fastest hospital discharge ever! I was very grateful. We left, and went home. We ate dinner with Tage and Mason (courtsey of some angelic visiting teachers!) packed some bags and left for Baltimore. While at home I called the NICU (a number I would program into my phone and call 1,000 times over the next week) and Jett's nurse talked to me telling me he was there, and was sleeping peacefully. It was relieving to know he was at the hospital safe and sound! And, equally relieving was the surgeon had seen him and had stimulated his rectum to make him poop!


When we got to the hospital and did our 3min srub and then gowned up, we walked into where Jett was. I spotted him immediately, and my heart leapt that he was once again within my line of vision! The UMMC NICU has the babies divided up into different rooms depending on their needs. Jett belonged in the "Surgery" room, since there was a potential for him to need surgery, but there was currently no space there for him, so he was put in the "Extremely Low Birthweight" room. (Which, let me tell you... wow. Seriously heart breaking. I was so thankful that Jett was a "hefty" 7lbs 13oz!) Kevin and I talked to him and touched him lightly, and his nurse came over and talked to us. Jett's skin looked really rough, like they hadn't been lubing him very much, and he was back under a warmer, which didn't help his skin. The nurse said they were lubing him every 4 hours. I was not happy! In Frederick they were doing it every 2. I grabbed the tube of Dermaphor and started giving him a greasing, and we held him.


The resident doctor came in to talk to us, and we told her we wanted him to be lubed every 2 hours and that we didn't want him under a heater. He had proved in Frederick that he was able to maintain his body temp, so being under a heater was not necessary and was wrecking havoc on his skin. I really appreciated the doctor's willingness to consider our opinions concerning Jett's health, and she said she agreed with us, but would check with the attending before she made the changes. We stayed with Jett until almost midnight, and then we left and stayed in a hotel a few blocks away for the night.


The next morning, Jett had a barium enema done, and we spoke with the surgeon. He said the enema had indicated that Hirschsprungs was likely, although not a diagnosis. They had also done a biopsy and those results would not be in until Friday. It was Wednesday. In between his tests and other cares (lubing, diapers, enemas, IV checks, etc) Kevin and I took turns holding him all day. We went home that night, as we couldn't afford to stay in Baltimore all week, plus we felt it was important for Tage and Mason to see us in the morning, since they had barely seen us since the Friday Jett was born).


Thursday morning Tage and Mason were DELIGHTED to see that Mommy and Daddy were home! They were sure starving for our attention! It was wonderful to see them! All I wanted to do was give them 100% of my attention while we were home. I thought about how so often before Tage would ask me to play with her and I would think "hmmm... how can I play with her AND accomplish something else at the same time?" or I would stress all day long about trying to clean and organize the house and be productive. All that mattered now was spending time with them. It was a short amount of time, but we made sure it was QUALITY, and FUN. We got ready and took them to a friend's house, and then went back to Baltimore.


It was almost noon by the time we got up to see Jett. I walked over to his bedside, and saw this:

Hit me with a bat, 3 times, in the stomach. I burst into tears. I knew it was an IV... but still... look at it! He looked miserable! A dermatologist (and his 20 gazillion students) had come to talk see Jett almost at the same time we had arrived. When they left, Jett's nurse apologized profusely that she was not right there when we came in to explain his head. She actually said "it's worse than it looks" but then laughed and said "it's looks worse than it is" Apparently the IV in his hand had blown the night before and the nurses couldn't get one in his other hand or either of his feet, and so as a last resort they attacked his head. As for the tape job.... well, my son is greasy! It takes a lot of tape to keep his tubs and IVs and wires in place. Other nurses who would see Jett would say things (not in front of us, but some of them later became his nurse and confessed) like "Oh my gosh! What happened to that baby? or What's wrong with that baby?" thinking he had some sort of brain surgery. Some would see the IV and say "Holy crap, that's one heck of a tape job!" But then they would learn of his skin condition, and his greasiness, and it would all make sense. I was SO glad to see that IV taken out the next day and sucessfully placed in his hand again.

Thursday afternoon, the surgeon came and told us they had the results. Early. "He has Hirschsprungs" I struggled to maintain my composure. Dr. Strauch went on to explain the plan of action (in detail, he had explained the gist of it before the positive diagnosis, so we were already aware of what Hirschsprung's entailed). He kept asking me if I was okay, all I would do was nod (of course I wasn't OKAY!). The nurse then handed me a box of tissues (Why in the world are hospital tissues so tiny??? Seriously, they only work for the tiniest of sniffles!) He told us a number of times that Jett was going to be okay. One time, he said so confidently "He is going to be okay....(long pause, looked me square in the eyes...) I promise." He probably asked me 10 times if I had any questions, but I just shook my head no. The whole time he was there I didn't say a single word. I couldn't. Bless his heart, he knew I did have a million questions, and told me he would come back the next day.

I was devastated that Jett had a positive diagnosis, and yet relieved that we now had a plan of action. Relieved that there was a treatment. Relieved that the doctors knew how to help him. I felt so blessed to live in a time where medical knowledge is so great! 50 years ago, this diagnosis was lethal. 50 years ago, there was no treatment. It was a painful thought to me that if we were to take Jett home and not provide him with medical care, he would die. We absolutely could not take him home. Death would be a sure thing. But I know God had a plan for Jett. And I know it was His hand that had protected him in the womb. I know that our loving Father in Heaven provided Jett with the EXACT care he needed all along the way. There were no mistakes. Every nurse and Doctor that saw Jett did exactly the things that Jett needed.

That night, we left later than we expected to. Jett started fussing just as we were getting ready to leave, and well, we just couldn't leave him sad. Until that evening, he had been very peaceful, only letting out little wimpers that were easily soothed with a pacifier. But that night, he was screaming! I called the hospital a lot that night, just to make sure he was sleeping peacefully. It broke my heart to leave him there every night. I wanted so badly to soothe his every cry. I knew the nurses would take care of him, but they had other babies to take care of too. The thought of him crying by himself, with no one there to hold him and snuggle him until he calmed down tore me apart. Oh how I wanted Jett sleeping in his bassinet next to my bed! I desperately wanted to be woken up at all hours of the night by my baby! And, although I knew God was in control, and I had felt the peace and comfort of my Savior many times, I sometimes wondered if I would ever have him at my bedside. I had felt peace, but was confused as to what that peace meant. I wondered if we would ever bring him home. I know, it's a terrible thought to think, and I really did have faith that he would be okay. But when your newborn is scheduled to have major surgery to save his life, you can't help but be terrified that something might go wrong. I tried to push those thoughts away and not "waver" but the fear was still there. The next day I asked Kevin if he thought we would get to bring Jett home, and he looked at me, shocked that I had considered the alternative, and said "Yes. I really do. We will bring him home." (Ahhh... thank you Kevin! Thank you for being strong! I love you!)

(The weekend, Ronald McDonald House, and Jett's Surgery in part 3! Sorry to keep you in suspense... it's a very long story, and I want to include every detail and don't ever have time to write it all in one sitting!)