Jett's a FIGHTER

Jett is very sick and is back in Baltimore in the ICU. We took him to the ER in Frederick on Thursday and were transferred a few hours later down to the University of Maryland. He has RSV and Pneumonia. He is such a tough guy, and has been through soooo much! He is doing a little better but still struggles to breathe. He's a fighter though and will pull though!

GO JETT! I'm so sorry I let you get sick...I love you!

The First Two Weeks: Part Three

So, where was I?

Friday, Saturday, and Sunday were very much the same. Jett still had the silly straw in his mouth, continually suctioning bile out of his stomach and an IV in his hand. His skin was still rough, but was improving and all the nurses were commenting on how great it looked.

Saturday night, at our house, I was taking a shower at 10pm and looking forward to going to sleep. We had been at the hospital all day and both Kevin and I were exhausted. As I get out of the shower, I can hear Kevin talking on the phone. As I listen, I realize it is the hospital and I panic momentairly. A call from the hospital at 10pm at night is unusual especially since everything was okay with Jett just a few hours before. After a few minutes Kevin interrupted the caller and said "I understand, I feel it was explained to us very well already... can you please tell me the purpose of this call?" Turns out, it was the Resident Surgeon who was calling to get our permission for Jett's surgery that was happening on Monday. Why she thought 10pm at night would be a good time to call, when we had spent the entire day at the hospital where they could have easily reached us, or could have called the next day... I don't know. They've obviously never had a baby in the NICU. I understand that she is a Resident, and is still learning and making mistakes... but common sense says you don't call at 10PM when the parent's baby is in the hospital! We told our nurse about it the next day, and she apologized and started to try to make an excuse for the resident, trying to smooth it over (we weren't angry, we just were retelling our experience to the nurse), but then she stopped her self because she couldn't think of a legit reason for the resident to have called at that hour, and she said "there's really no excuse for that. I am so sorry." It was okay. Kevin's heart attack was only minor.

Sunday afternoon we finally got a call from the Ronald McDonald House, saying they had a room for us. We took a break from holding Jett to go move into our room.

The RMH was amazing! I was blown away at how nice and accomadating it was. It is a gem, unlike most of the rest of Baltimore! It was so shiny there! UMMC: not so shiny. Good thing the superior nurses and doctors there made up for the ancient grungy building Jett had been sent to! Breakfast and Dinner were provided by volunteers, during which we ate with other families staying there. It was incredible to meet people and hear their stories. Everyone was so kind, and the children were so brave...

Then Monday came. Oh boy. We left the RMH early so we could be with Jett as much as possible. We followed the nurse and Jett down to surgery around 10:30am. We sat with him until about 11am when the surgical team was ready and they wheeled Jett down the hall, to the O.R. While I had faith that he was going to be okay I still found myself saying a silently praying that he would be coming back to me in a few hours. I began to cry, and once again a nurse handed me a box of TEENSY tissues, saying "It's a tissue kind of a day..." Yes. Yes it was.

We recieved several updates while we waited for the surgery to be over. They didn't really get started on the actual surgery until about 12:20 and completed around 1:30pm. During those 2 1/2 hours I did a lot of praying and reflecting on our Savior. A few days before, Chad (Kevin's brother) came to help Kevin give Jett a blessing. In the blessing, Jett was told that all medical staff attending to his care and needs were being led by the spirit and that the Lord would be doing His work through them. He was blessed that in time he would be discharged from the hospital and go home to be with his family. It was such a comfort to me to hear these words. I was grateful too, for my knowledge of The Plan of Happiness.

Jett right after surgery

Jett had 5-6in removed from his colon, and the "good" colon was reattached to him. The surgery had gone as expected and we were allowed to go see him. It was such a relief to see him again! He was still waking up, and was pretty swollen from the fluids. His expression made us chuckle though... he was just soooo cute, laying there arms spread out and mouth open, staring at us... trying to keep his little peepers open. Such a sweetie. It was such a relief to have the surgery over with.

We didn't hold him the rest of the day, we just wanted him to rest. It took 5 hours to get his "STAT" order of morphine from the pharmacy... which I was more than a little annoyed about. There had been a mix up in communication, and so his order had not been filled. Luckily, Jett had not shown signs of pain or discomfort, otherwise momma bear would have gotten very angry. Jett had stayed asleep except for a few whimpers and moans he made. Finally, around 7:15pm Jett got his morphine drip all set up. Knowing that he would be okay, we decided to go back to the RMH and go to bed. We made the nurse promise to call us if he was upset or in ANY pain. I would have gone back to be with him no matter what time it was (and trust me, if I hadn't just had major abdominal surgery and had the chairs in the NICU been more comfortable and accomodating for post-partum mothers, I never would have left his side from the moment he began his stay in Baltimore...)

Jett never did show any signs of pain (monitored by heart rate and breathing) which was an incredible comfort to me. We now had Tage and Mason with us, and so Tuesday Kevin and I took turns at the hospital with Jett. Jett had developed a bad, wet cough, and we were worried about pneumonia. An x-ray ruled pneumonia out. He looked so miserable when he would cough, and we would sit him up and pat his back or the nurse would suction his throat. Thank goodness it wasn't anything serious. We held him a lot, and the doctors and nurses listened for bowel sounds. By the end of the day we heard those sounds, which meant on Wednesday we could start feeding him. Wednesday we began feeding Jett a few ounces every few hours. He was eating and pooping like a champ!

Thursday I was allowed to start breastfeeding him, which I was worried that he wouldn't do. He was almost two weeks old and had never nursed. I was so happy when he had absolutely no problems at all! On Friday we spent the day getting Jett ready for discharge... it took all day long. FINALLY, at 5:30pm, I was once again following behind as my baby was paraded through the halls of the hospital. Only this time we didn't go to the back doors of the emergency room. There was no isolete. No monitors. No tubes. No doors shutting me out and Jett in. No ambulances. No long walk back in the hospital. Instead, we were greeted at the front of the hospital by Kevin, with Tage and Mason in the back seat of the car. Tage was so giddy with excitement as Kevin opened the car door and put Jett in next to her! Mason was equally as excited and kept saying "Hi Baby!" In the cutest high-pitched little voice you have ever heard! For the first time ever, we were all together. Our whole family. All five of us!

Jett, waiting to be discharged

We went back to the RMH and ate dinner and packed our things. While we were thrilled beyond belief to have Jett with us and to have everyone congratulate us and say how cute he was, my heart broke a little for some dear friends we had met while there. We actually met them in the NICU but they also stayed at RMH. The mom, Julie (who is amazing in so many ways... I love her and her family!), and I walked to the hospital or rode the shuttle together when we could. While I knew she was happy for us I also knew it hurt her a little to see us with Jett, out of the hospital and on our way home. Her daughter, sweet little Abby, was still in the NICU, with no end in sight and she desperately wanted (what mother doesn't) to be doing the same thing we were- taking our baby home where he belongs. I am happy to say that they took her home just a few days ago. You can read about Abby here . They could sure use your prayers, as their struggles are still far from over.

Mason and Jett at RMH
Tage and Jett at RMH

It was absolutely wonderful to drive home with three kids in stow! I was so incredibly happy to go to bed that night, only to be woken up an hour and a half later to answer the cries of a little baby who NEEDED me. His mother. And, when anyone asks me now if Jett is letting me sleep much, I say "No, isn't it great?!" Because sleeping through the night when you are supposed to have a baby waking you up a gazillion times is not rockin awesome. Having a baby to force you to peel your eyes open and be sleep deprived is.

Thank you for all of your prayers. Miracles happen! God is good.

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!)