And we’re back . . .

This is not the sing-songy post I had written in my head for the weekend. My plan was to explain, in detail, Connor’s reaction to meeting JD which was filled with lots of kisses and lots of “hiiiiiii JD” while peaking into his bassinet. I wanted to describe how he ran to the back door to get his first live glimpse of his little brother. How he beamed with pride as we brought JD into the living room exclaiming “JD sit, read books.” To which he jumped on the sofa with his Things That Go book pointing out helicopters and motorcycles and airplanes to his new best friend. I wanted to express how my eyes filled with tears and my heart burst with joy when Connor held his hands together and said “Hold it” meaning he wanted to hold JD.

As we have been around other babies Connor has never shown much interest but this was different. He knew JD was his. This was the little brother he would watch over, protect, laugh with, and love for the rest of his life. Maybe we were not giving Connor enough credit when we said he could not grasp the concept of having a little brother. Already at the age of 21 months he is proving to be the big brother JD will look up to for the rest of his life.

Proud Big Brother

Could not resist the matching PJs

Saturday night pajama party celebration

Keeping my eye on you mom

Maybe if I just stay still she will stop taking pictures

First bath at home

Yet, that is not the post you will be seeing tonight. Instead I will explain how we ended up back in the NICU at Children’s Memorial (now called Lurie’s Children’s Hospital)

Late Saturday night into Sunday morning JD started to seem uncomfortable during his feedings. JD would do a “crunchie” thing where he scrunches his whole body and turns bright red. When he had one of these events we would hold him and try to make him as comfortable as possible. The duration of the event would be only a minute or so but it was enough to make us take notice. Throughout he event he would hold his breath for a second but he never stopped breathing.

Then it was time for his 11a feed on Sunday morning. He was gently placed in his bassinet, which is at an incline to help with possible reflux, I checked for placement of the tube (we do this before every feed) and started his feed. I walked to the kitchen to start pumping while doing dishes and Nate followed Connor into his room. Before I go on I want to note this is similar to how he ate in the hospital everyday and this is the exact same way he was eating at home over the past few days. Nothing new, nothing had changed. As I was in the kitchen and Nate was chasing Connor JD let out a little cry. Connor ran over to the bassinet and said “JD out” which he tells us anytime JD cries.

Nate peaked in and calmly said “Jen, he’s blue.” “WHAT?” I shouted from the kitchen. Once again, he said “He is really blue.” I ran over and saw Nate holding my baby boy whose face was the same color as his baby blue shirt. My heart dropped. However, Nate and I remained very calm. I asked if he felt I should call 911 and we decided it would be for the best. When the operator asked if we needed an ambulance I looked at Nate, he paused for a moment and said “yes.”

I later asked Nate why he paused to which he responded “I was debating about driving him to the hospital myself but I kept hearing Amy’s voice say ‘Call an ambulance! Do not drive yourself. You do not know what could happen in the back seat even if someone is sitting back there with him.’ Even as I watched his color come back I knew we had to call the ambulance.” Amy is our primary nurse who also gave us our refresher CPR course. Those few words helped Nate make the decision to call for an ambulance rather than take the chance by driving ourselves. Nate truly is the greatest dad our boys could ever have.

This whole event took less than a minute but it grabbed our attention. By the time I hung up the phone I could hear the ambulance and fire truck (it is protocol to send a fire truck with every ambulance – cannot wait to receive that bill). JD was almost back to his full color and he was crying giving us a moment of relief knowing he was breathing. Being voted Most Organized in 8^th grade paid off as I handed Nate a folder with all of JD’s information including his all-inclusive discharge papers. He later told me it absolutely helped during the ride.

When the 7 medics stormed into our condo a very intense woman led the charge. “Alright, let’s go. How old is he? Was he a preemie? How many weeks when he was born?” Before I even answered any of these questions she turned to one of the 6 men following her and said “should we take him there, you know it moved? I don’t know if we should take him there. We are not supposed to go there.” She was referring to Children’s Memorial (where JD spent the first 2 months of his life), which had literally moved (very publicly) the day before. The old Children’s was less than a mile away from our condo on Friday but as of Saturday the new hospital moved downtown and was now 4 miles away. For those who cannot do mental math that is a difference of 3 miles . . . 3 miles and this was up for discussion? Not with my son.

As Nate carried JD out of the door I told him “make sure they take him to Children’s do not let them take him anywhere else  . . . and get him admitted back to the NICU not the PICU.” It turns out Nate went head to head with the Intense Woman to ensure JD was taken to Children’s instead of the hospital down the street (there are about 3 hospitals closer than Children’s but our nurses and docs are not at those hospitals so why would we go there). After she told him a few more times Children’s had moved (really?!?! not only were we at the hospital until Thursday - which is all they talked about – anyone living in Chicago would need to be asleep all weekend to have missed the overload of move coverage) she reluctantly strapped Nate into a bed holding JD and was taken to Children’s. Score another one for JD’s dad.

Connor is such an awesome kid for many reasons but one of the best things is how he goes with the flow. It did not even faze him to see 7 people standing in our condo only to leave a few minutes later with his dad and little brother. We picked up right where we left off . . . lunch. Running room-to-room to gather stuff to take to the hospital while trying to keep Connor occupied and jump in the shower and watch the status of the ambulance sitting outside and finally make the “ronis” Connor was demanding for lunch (macaroni & cheese) made for some excitement. Not to pat myself on the back (but I will) I felt I did a great job of keeping it together. I felt comfortable JD was with Nate and they were heading to Children’s (or so I hoped). 

 

After 30 minutes of making lunch while Connor grabbed my frazzled attention by drawing red mustaches on his own face (no worries it was no toxic, washable markers), gathering supplies and trying to throw on something beside PJs I finally received a text from Nate. They were in the ER at Children’s and the nurses were working on finding him a bed in the NICU (another battle Nate fought and won). Once my parents arrived from the burbs I would head to the hospital to meet up with Nate. He reassured me JD was doing fine and breathing okay. 

You would think a children's hospital could find a smaller ER bed

One of my favorite things about Children’s is how connected everything is throughout all the services. As soon as the Intense Woman called in JD on the way to the hospital James popped up in the computer for our primary nurse to see he was being admitted. Nurse Amy sent me a text to find out what was going on before I had the chance to text her myself. Even with all our ups and downs throughout JD’s short life the stars seem to align along the way. We were lucky Amy was working that day as she was able to chat with the doctors about bringing JD back to the NICU. She also came down to the ER to help escort JD up to the NICU. He was not on her rotation that day yet she took her break time to help readmit him to the unit.

Side note about the new hospital (which I will begin calling Lurie’s moving forward– if I donated $100 million to get the naming rights I would want everyone to call it by my name too) it is spectacular. Yet that word does not even describe this beyond state-of-the-art hospital. JD’s private room is so cozy and welcoming at the same time. I no longer have to leave the room to pump or track down chairs to sit with my son or leave when the doctors come in to talk to other parents. Everything is right in the room ready for us. Unfortunately, we did not get a lakeview room but we are hoping that means we will not be here long.

New digs

Connor will continue to watch over JD

Once settled into the NICU one of the neonatologists, who was actually in the OR during James’ delivery, explained a few of the test they would be doing. First we needed to rule out a virus or infection he could have picked up while at home  - so they took some blood. Then, they would rule out pneumonia as a possibility in case he had refluxed and some of the milk had gone in to the lungs – so they took an x-ray. Finally, there was possibility it was reflux gone wrong – so they put him on reflux medicine to see if that helps. Those were all normal so on to the next round of problem solving.

Nurse Amy, Nate and I spent Monday morning trouble shooting what we thought might be wrong with JD. We think it is that damn (yes, I said it, damn) collar. As a mom I feel guilty about allowing us to leave the hospital when I was uncomfortable with the fit of collar last week. It is tough straddling the line between being that mom by forcing the issue with the doctors and just going along without questions. Most of the time, your gut is accurate. This time I made it known the collar needs to be recreated. Start over, clean slate, new collar and let’s try to customize this time.

As silly as it sounds I made the analogy of a horse and saddle. Sometimes horses feel that saddle on their back and it does not feel right so they try to get it off the only way they know how, by bucking it off. Same thing with JD, the collar was not working. It was not doing it’s job so he wanted to “buck it off” causing him to crunchie and wiggle trying to get it off the only way he could. When he crunchies he curls up and close his airway restricting his oxygen flow. Neurosurgery was called and agreed the collar needed to be fixed so they placed an order with orthics to create a new collar.

By the time I left on Monday evening JD seemed a bit more comfortable but there was still something slightly off. From the moment he got home until the moment he went to the hospital I was “charting” every action and response JD made. This included 3 different documents called: James’ Feeding Log, James’ Activity Log, and James’ Concerns Log. One of our concerns was his trouble swallowing some of his extra secretions/saliva in his mouth. While he is not taking any food by mouth (we had taken a break bottle feeding after his events two weekends ago) he still has bubbles in his mouth. Sometimes those can be worse because of his cleft palate.

This concern made me wonder if the OG tube was making it more difficult to swallow or if was creating more bubbles in his mouth and throat. I mentioned to Nate we may need to revisit the g-tube conversation. Low and behold our attending Dr. P said the exact same thing on Monday afternoon. I am getting pretty good at this doctor thing.

Dr. C, the Pediatric Surgeon was called for another consult. Originally, they wanted JD to be between 3 – 4 kilos (6lbs 10oz – 8lbs 13oz) and JD is right at 3kg so we will see what Dr. C says. Our pediatrician Dr. D stopped by today (seriously how great is he to come visit his littlest patient each week) and he is pro g-tube as well. I am not pushing it but I want to put it back on the table so we can discuss all the pros and cons of each feeding option. My first priority is to make JD comfortable and in order to do that we need to understand what is making him uncomfortable.

Apologies for the length of this post. By now if you are still reading this post or this blog you know what you are in for each time you read . . . lots of words.

Let’s end on a fun little story. In the new hospital they allow siblings to visit even if they are under the age of 2 years old so my parents brought Connor to the hospital today. There is so much to do we were forced to remove him from each area crying because he did not want to leave. First he got to wear a mask when visiting JD (they only wanted him to wear it while walking to JDs room but he loved it so he did not want to take it off). Next he got to play in a real fire truck. Then we played with trains while over looking Lake Michigan. And finally we got to see the fish in the new coral garden. It was a delightful day for the munchkin.

Thank you again for all your thoughts and texts and prayers about JD. We know he is in good hands and we will keep everyday updated as we learn more.

Future doctor

Hanging out with JD playing puzzles, this is super cool

Driving the fire truck - notice the sweet rug burn on my face from the nose dive I took yesterday

While I will never swim in the Lake Michigan I sure do love looking at it