Sunday, June 3, 2012

Happy Two Months

Happy Two Months Chubs

Maybe I used the word home too much or maybe we got a little too cocky in our “medical opinions” but Friday and Saturday were not our best NICU days.

Friday afternoon started with Independence Plus (the home health care providers) dropping off JD’s feeding supplies. Oh my goodness this is happening soon (said with a squeak in my voice). As the guy walked me through how the pump worked and all the equipment I continued to think how excited I am to get JD home. It will be work, there will be less sleep, doctors will become our best friends, we will have an insane amount of appointments to keep track of each week . . .but it will also be so AMAZING to have him home.

We are blessed with the opportunity to watch our two boys grow-up together. JD will take a bit longer to hit milestones but that just means we will enjoy each stage for an extended time. As a parent you will catch yourself saying “I love this stage, I wish he would stay this age for longer.” Well we have that opportunity and I cannot wait. Each milestone will be bigger, each milestone will be celebrated with extra smiles (and pictures), and each milestone will continue to prove JD is a champion.

Back to Friday . . . as I was skipping into the hospital room thinking “this is my last Friday here” my smile was interrupted by a piece of paper sitting in JD’s crib. Before I even picked it up I knew what it said “Your son/daughter DID NOT PASS the infant hearing screening.” Did they really have to highlight in bold the Did Not Pass part? Oh buddy I guess we need to add one more follow-up appointment to our list. We are not worried about his hearing as he is still small so his ear canals might be too small as well. Besides, we have seen him jump numerous times with a loud noise.

Unfortunately, it did not end there. Our primary nurse, Amy, came in from lunch with a look in her eye. This was a bittersweet day for us as we expected to go home on Monday or Tuesday but Amy was not scheduled to work again until Wednesday so this was our last day with her. Here is how the next few minutes went:

Jenn: I saw he did not pass the hearing test
Amy: Yeah, I know. Sometimes it is too loud in these rooms and kids do better in the office. Also . . .  there are few more things I need to tell you.
Jenn: Oh?
Amy: First, I am a floater so I have to go to the PICU at 3 (sometimes the nurses “float” between units if one is overstaffed and one is understaffed)
Jenn: What?!?!
Amy: I know I am so bummed. Second, we have to move rooms. They need this space for a new admission so we are moving to room 813 (Side note: 813 is a very small room where many babies go just before heading home. However, that room tends to be staffed with nurses that do not know or understand JD.)
Jenn: Oh no! Ugh, I knew it we would have to move soon.
Amy: And, one more thing . . .
Jenn: Did he Brady again?
Amy: Yes. I’m sorry.

My heart just sank. Friday was our last day of Brady watch so now we will be on a new Brady watch again. 5 more days.

Amy: He was laying flat after his feeding and started to spit up which lead to a Destat then his heart rate dropped to 60 for just a second. But it came right back up. I talked to the doctors and we think it was because his bed was flat and he refluxed. We decided he should be slightly elevated during his feedings and for at least an hour after. That should help with his reflux problem.

At this point I started to tear up because I did not want this to delay our departure. They were testing his bed flat before he goes home because technically babies are supposed to be in flat cribs with nothing else in the bed. Due to the low muscle tone and the possibility of reflux we were prepared to have him elevated when we went home so a flat bed was not necessary.

At that exact moment the Charge Nurse came in to move JD. Amy was angry. We were in the middle of a serious conversation where I was getting upset and now I have to walk down the hall holding slightly deflated balloons as my baby was being wheeled behind me. This day was rapidly declining.

When we arrived in the new room we were given the spot by the window in the back corner which was tiny. Amy helped setup JD in his new spot before heading to the PICU and we discussed the final few things we needed to do before discharge. As she told us we were going to be great at home and JD would flourish I started to cry, she started to cry, and Nate looked away. It will be so strange not to see her every week or bounce ideas about JD off of her.

For all the ups and downs we have had at Children’s she was there from the beginning. Amy was working her last week of night shifts the evening Nate and JD arrived. When I spoke to Nate that night 2 months ago I asked “do they know he has Wolf-Hirschhorn Syndrome? Have they ever heard about it? Do they know he is a fighter and extra awesome?” Nate was very confident when he said “when I walked in they had information from the site layout by his bedside. The nurse, Amy, seems great. He will be in really good hands here.” The following night JD was baptized in the hospital because he was scheduled for surgery the next day. Amy was the witness to the baptism. Needless to say, Amy has a very special place in our heart and family (and she is a UT grad).

JD's first crush, Nurse Amy
We finished off the day with a new nurse and no idea when we are scheduled to head home. It was Friday afternoon so our next opportunity to speak with the doctors is not until Monday morning. Get through the weekend comfortably was the goal. That is not exactly how it went . . .

JD’s two month birthday! Nate and I arrived in the room to find JD flat in his bed AGAIN with a new nurse who does not know him. Why is his bed flat?!?! She said he had another Brady and a few destats. What is going on? For 2 months we had never even heard the word Brady and now he has them daily? Something has to be wrong with the situation. Where are the nurses that know him? Why are we being moved to rooms that are hindering his progress?

The first 30 minutes were spent trying to understand why he was flat during his feed? It turns out there was lots of confusing communication. The doctors told the nurse he needed to be flat because when he going home. WHY? I felt bad but I drilled her. Why, why, why? Finally the weekend on-call doctor came in to chat. She was nice and listened to me as I explained that he should not be flat in bed. After much discussion it was once again agreed upon he would be elevated slightly in his crib.

As my blood pressure slowly started to come down I noticed his OG tube was at a 17 not a 21 – SERIOUSLY! On the OG tube there are numbers so you can measure how far down the tube needs to be. As they grow the tube needs to be further down to ensure it is in the stomach. If it is too high it causes reflux due to it being in the wrong spot. We had just measured the tube over and over with our primary nurses a few days prior and it always came up with a 21 or 22. If it was now at a 17 that was a HUGE problem and a very compelling reason as to why he was refluxing with a destat. Now I was really, really angry. We are NOT going to stay here longer because of human error. GIVE ME A BREAK!!!!!

I handed JD off to Nate and went to the bathroom to cool down. Yet, when I got back he had spit up again. Okay, something needed to change. We asked the nurse if we could slow down his feed and change the tube. Afterwards he was much better. There is no excuse for these errors.

We spent the rest of the day nervous about what the doctors would say on Monday but there was nothing more we could do on Saturday.

At 6am I woke up to call the NICU. The nurse said he had a good night and he gained some weight overnight with no Bradys or destats. Good, good and good.

We went to the hospital early where the day nurse told us he destated twice in the morning but he came up on his own and the doctors thought it was okay.

When we walked up to his bed I noticed right away something was wrong. His collar was on backwards! REALLY?!? Inexcusable! However, rather than create more problems I mentioned it to the nurse then Nate and I changed his collar ourselves, made sure he was comfortable, and prayed we could get out of there as soon as possible. Ugh, this has not been our favorite weekend.

Around noon the on-call neonatologist came in to check out JD. She was wonderful. Her job was to examine JD then discuss her thoughts with Dr. P based on his weekend destats. Well . . .let me just help ya out doc. This is my chance to get something done so I laid it all out there. I told her about the flat bed issues, I told her about the tube issue, I told her about the collar and she said “just in talking to you I know he will do great at home. In fact, I think he will be safer and better at home as most babies are. I will make sure to tell Dr. P about our conversation.” THANK YOU!!!!!!!!! This rounded out my whole weekend and gave me hope again.

JD had a wonderful Sunday kicking around during our Two Month photo shoot. Nate and I watched the going home DVDs, packed up some of the JD’s things, and grabbed the copious amount of extra milk I had in the hospital freezer.

Monday we will both be at the hospital bright and early to ensure we talk to the doctors during rounds. Monday will be the deciding factor, in my mind, about whether or not June 9th will be spent at home cuddling with our boys or taking a 3.6 mile ambulance ride to the new hospital. Monday is a big day. If he needs to stay then we know it is for the best but if we get a discharge date you will know due to my permanent smile.

Until then, know that JD is marvelous and continues to add smiles to our family everyday.

Happy Two Months to our little peanut.

Look at those strong legs

Out growing premie clothes


  1. I am so sorry about your weekend. I am hoping you get to have your family at home soon!

    I am proud of you. Very proud! You are an awesome mom! Magnolia had a 'Nurse Amy', but her name was Holli. She was/is amazing and wonderful. We are still great friends. I did not have to 'fight' for anything in the NICU because Holli did it for us. However, when Magnolia ended up in the hospital when she was 8 months old (and obviously not in the NICU) we did have to fight! It was an experience I had hoped we would never have to do, but realized quickly it is something we will do often. Needless to say I am getting good at it! You are ahead of the game! :-)

    Sending love!

  2. You are such an incredible advocate for your little man. Keep up the good work Jen and Nate! JD is going to thrive! Much love coming your way and hoping and praying for a great Monday! xoxo