Results = Direction

As I sit to write this I am alone in JD’s room in the NICU staring into the beautiful, cloudless Chicago sky. I take comfort in the fact good things happen on bright sunny days. The little man is currently getting an MRI of his cervical spine (the neck portion of the spine) to be evaluated by neurosurgery. Seems like quite the jump from my last post huh? Well, it is not too far off. Let me start with the sleep study.

The Sleep Study

Sunday night was JD’s sleep study where they put electrodes and monitors all over him to observe him while he .  . . well sleeps. You would think they would have some fancy, confusing medical term for the test but nope just a Sleep Study. Of course, he had a great night with no episodes because he is just like all other kids. They are perfect when we actually need them to act up. When we heard he had no episodes we were nervous it would lead to inconclusive results. Turns out he did not need any episodes as they got the results they needed.

Good news: it’s not reflux so the Nissen is off the table. YAHOO!

Interesting news (I don’t like using the term bad news): he has what they are classifying as Severe Obstructed Sleep Apnea.

Good news: we now have a few answers and a focused direction to help him

Sounds easy right? Let’s go in look around find out what/if the obstruction is, fix it, and head home. Not so fast . . . JD likes things complicated and this is where it gets a bit challenging.

One of things I have failed to mention in the blog is how anything and everything that JD does needs to be cleared by neurosurgery. Why? Well, it turns out the collar is not as simple as helping his bones mineralize straight. Dr. A (the neurosurgeon) wants to make sure the cervical spine is not being compromised with the tilt in his neck. The more we push back on the collar the more important it has become. All that said, neurosurgery trumps everyone/everything else.

The way I explained to my dad who asked “who is running the show over there” I believe they take the most severe problem and that service is at the top of the pyramid. For example, if a child has a severe heart problem then everything would need to be run by cardiology before any decisions were made. Same thing with JD only instead of cardiology at the top of his pyramid neurosurgery is the king.

I promise all of this has a point. Back to the results . . .

With Severe Obstructed Sleep Apnea they now need to bring in ENT to do a full evaluation on his airway. There is a long list of potential causes for the possible obstruction so let’s keep it top line. ENT would like to do two different tests that do have fancy, confusing medical names which I do not know (remember I have only been a “doctor” for 2½ months). 

Test 1: ENT will put a small scope in through his nose to check out the anatomy of the upper air way. This does not require JD to be sedated making this test simple in comparison to Test 2.

Test 2: ENT will put a larger scope down his throat through his mouth with a camera to evaluate the lower portion of his airway. Obviously, this will be more uncomfortable and invasive so he will need to be under anesthesia to ensure he remains motionless.  His head and neck will need to be in such a position it will cause him to be out of alignment as well as the possibility of needed a breathing tube during the test. This is where neurosurgery comes in. Neurosurgery wants JD to be midline at all times to ensure the safety of his cervical spine, however, the test will pull his neck out of alignment. This is where we get back to our pyramid with neurosurgery on top. ENT will now need to be cleared by neurosurgery to do the test.

At the same time as the ENT test the doctors would like to do the G-tube surgery so he does not need to be under anesthesia more than once. Plus, ophthalmology has be itching to do a test while sedated but we have pushed it off until there was another mandatory procedure that needed anesthesia.

This is where it gets tricky. In order for neurosurgery to clear JD for the ENT test and the G-tube surgery they need to take a better look at his neck. In order to take a better look at his neck they need to get an MRI. In order to get an MRI they need JD to stay completely motionless. In order for JD to stay completely motionless he needs to be sedated. Which means he will have to go under anesthesia twice: once for the MRI and once for the other 3 procedures. Ugh!

Next steps:

1)    MRI under sedation to check the neck

2)    Neurosurgery to study the MRI results and make a decision about what JD can handle in regards to movement with his neck*

3)    If Neurosurgery clears JD the 3 services will need to be coordinated for the same date for the procedures

a.    Pediatric Surgery: G-tube

b.    ENT: Test 2

c.     Ophthalmology: Eye test

4)    Schedule procedures all for the same date and time

5)    Analyze results from ENT - make adjustments

6)    Start feeds through G-tube

7)    Another possible sleep study

8)    Cleared for departure

*No idea what happens if we stop at Step 2 and he is not cleared by neurosurgery. I have not asked that question as we will have to cross that bridge if need be.

Surprisingly, after the doctors laid out the new plan Nate and I felt relieved. Yes, there are some scary possible outcomes if he has severe breathing problems. And yes, this means we will be at the hospital for a few more weeks. But now we have a direction and we know what we are working towards. The pinpoint sized light at the end of the hospital tunnel has finally started to peek through.

Late Day Updates

First step complete! Check.

Before the MRI JD seemed restless as if he knew something was coming. They had to stop his feeds at midnight last night and they did not take him down to the MRI until 11:30am this morning. My little man takes after his mom; he was quite hungry. As soon as the transport isolette came into the room he started crying which is very rare for him. He is a smart kid because he knew something was up.

It was a rushed process as the nurse prepped him for transport. To pat myself on the back, I have done a great job of keeping it together through many of his obstacles yet today was not the day to make my boy upset. Our nurse was great but as I said it was rushed and in the haste James’ little finger got pitched in the window of the isolette. It was not hard or tight but it was enough to have him shout out in pain and cry even harder. My heart dropped and I was no longer the calm and collected mother because the tears started. Whew, it is going to be a long road if I cannot even get through an MRI. In hindsight I have to say I am pleased he cried out in pain. We have read that many of the WHS kids rarely cry making it difficult to tell when they are uncomfortable or in pain. His pain receptors seem to be working which is great news for us.

I was able to escort him down to the MRI and hold him while we were waiting for the room. He took his pacifier like a champ and was calm, but not relaxed, during our wait. When they took him into the MRI room I was able to go back to his room in the NICU and wait. Oh my goodness, this is a fabulous perk to having a private room at the new hospital. The alone time helped me collect my thoughts and restart the afternoon.

Seriously, what are you guys doing to me?

After the MRI, JD was a totally different little dude. He was so chill. The anesthesia team were just going to put a breathing mask on him during the MRI but if he had trouble breathing then he would need to be intubated with a breathing tube. As the transport isolette came into the room I zoomed in on his mouth . . .NOTHING, NO MASK or TUBE!!!!!! James you are a rockstar.

The anesthesiologist said JD was great with just a few dips in his numbers but never lost his color or breathes. He was having no trouble coming out of anesthesia and was wide awake. With the MRIs he had on day 2 and 3 of life he had a really hard time staying warm (the MRI rooms are freezing) so I was nervous about his temp. The nurse took his temp as soon as he came back in and he was at 98.2 degrees hanging out super comfy. After taking his vitals (which all looked great) they started his feed again which he took down like a champ. No problems.

But I have not even gotten to the best part. His Saturation numbers were AMAZING. Over the past few days he has been hanging out around 90 – 94 (these numbers are out of 100 so you want to be at 100%) but after his MRI he was hanging out at 98 . . . 99 . . . 100. 

I'm batting better than the Cubs right now with these statistics

Seriously kid what are you doing? Oh my goodness the afternoon became even sunnier. I was stunned. No idea what happened down there but he seemed to like the anesthesia they gave him. Maybe in a previous life he grew up in the 60s and liked the Cheech and Chong way of life. I don’t know but I will take it. The remainder of the afternoon was spent awake and very comfortable for both JD and mom.

Tough guy after the MRI

Devilishly handsome and a tough little Bulldog with no collar and no tube

Yesterday and today both started out on a low but by staying positive, trusting our parent instincts, loving JD unconditionally and praying led to both days ending on highs (literally for JD). From that fateful day on December 15^th through an early delivery and an extended hospital stay we have never once doubted James Douglas. He will tell us what he needs and he will fight each and every day with us standing proud right by his side.

JD has extraordinary life ahead of him with lots of sunshine and a few mountains to climb; but he is equipped with the best climbing gear ready to take on any boulders that come his way. 

Sunny Afternoons, a Glorious Walk and a Sleep Study

After two weeks it seems like JD was never even home. We have easily fallen back into our hospital routine with Nate going in the morning before work while I head down in the afternoon after spending the morning with Connor. The biggest challenge we have right now is spending enough time with Connor yet being at the hospital when the doctors round. They round in the morning and are much more difficult to catch in the afternoon. Yet, Connor takes a long afternoon nap so in order to optimize time with him I have to miss talking to the doctors in the morning and hope to track them down in the afternoon. But every parent knows what it is like trying to balance life.

Lots of little updates from the past week:

Sunday, 6/17 – Happy Father’s Day

After having an uneventful week (in a hospital an uneventful week is the kind of week you want) JD desated on Sunday evening (early Monday morning) where he needed a “blow by.” A blow by is when the nurses lightly wave the oxygen mask over his face to help bring his oxygen levels back up. Normally when he desats his numbers pop right back up which is encouraging. This was the first time he has stayed down since we have been back at the hospital so it was frustrating. 

Happy Father's Day

Monday, 6/18

It has been 3 weeks since Dr. P started on our rotation, which means a new attending started – oh joy. Everyone knows how much I love when a new attending starts on our rotation. But Dr. M seems to be ready to take on JD. Within the first 30 minutes of his new rotation he had already spent more time talking to us than other doctors in the past. Whew, thank goodness. Of course, I first launched into how I am not comfortable with a Nissen and I don’t think it is reflux and let’s just get a g-tube, yada, yada, yada.

Dr. M handled it (me) very well. He told me he needed to do his JD homework before he could make any decisions. . .but if he can find strong evidence of reflux we will have to discuss the Nissen Fundoplication – ugh. I am sure a few weeks from now I will be writing trying to find a way to justify why the Nissen was right for JD.  However, until then I will say UGH.

That night my phone rang and it was the NICU (never a number you want to see on your phone). It was the on-call doctor letting us know they ordered a sleep study for JD.

Earlier in the day, the resident and I were discussing any patterns we could find with JD’s desats. Nothing stood out as they happen before a feed, during a feed, long after a feed, while he is filling his diaper, etc . . .yet the one piece that jumped out was most of his desats happen in the early morning between 2a – 5a. AHA, said the girl who has no idea what to do with that info. Maybe he gets into a very deep sleep and stops breathing? The resident said, “umm, yeah, maybe” with a look that said “nice try but wrong.”

So when the doctor called to tell me about the sleep study it made sense. It is a very easy test where they just add a few more monitors to him to check his breathing and his reflux. The hardest part is getting all the electrodes attached.

Okay, let’s do th . . .wait! They only do one sleep study a night and we have to get scheduled in so it could be awhile. Oh boy, more waiting.

Tuesday, 6/19

Sleep study has been scheduled for Sunday evening. It takes two days for the results so hopefully by Tuesday, 6/26 we will have a better plan. However, Dr. M told us he is breaking one of his rules by ordering this test. What does that mean? He said he never orders a test without knowing exactly what he will do with the results – he knows what he will do if the test comes back normal and he know what he will do if the test comes back extreme but he is unclear as to what to do if the test comes back in the middle. Dr. M believes JD may have a blockage of some sort which is making it hard for him to breath . . . or he believes it may be reflux. Yet, if the test does not clearly point to either we will most likely get the g-tube and go from there.

Chillin' in his bouncy seat with good numbers

Reading time snuggles with our little Bulldog (we think he has the cheeks of a Bulldog)

Wednesday, 6/20

Pretty good day until the late afternoon. Nate worked from the hospital in the afternoon and we both noticed JD seemed uncomfortable. He was not desating but he was just uncomfortable. As we left I felt something was off.

Thursday, 6/21

Same routine, Nate headed to the hospital while I prepped for taking Connor to the Shedd Aquarium with my parents. Connor woke up super crabby so the morning was a bit of a struggle to begin with. As Nate was walking out the door I proclaimed “I think JD had a bad night.” He asked why, I said “he just seemed extremely uncomfortable yesterday and I don’t think he had a good night.”

Approximately, 15 minutes after Nate left the NICU popped up on my phone again. Our night nurse was calling to tell me JD had 4, yes FOUR, desats in the early morning. One before a feed, one at the end of a feed, one at the beginning of a feed, then they stopped his feeds and put him on an IV and he desated once with the IV. GOODNESS. What is wrong little man?

We canceled the Shedd so I could head to the hospital and talk to the doctors. He was only getting IV fluids but seemed to be comfortable. During rounds they decided to start his feeds again, slowly. By 8p he was comfortable and back up to full feeds.

Friday, 6/22

By Friday JD was back to his old self, comfortable with his feeds and straight chillin’. The morning was spent with JD while the afternoon was spent with Connor and my wonderful high school friend that now lives in Canada and “AUNT JILL” says Connor at the top of his lungs. We took the kids to Navy Pier and enjoyed the fabulous Chicago summer weather.

Anticipating the Merry-Go-Round

The excitement builds

Morgan

Mason

Connor's first Merry-Go-Round

Driving the boat

Saturday, 6/23

The weekend began with a wonderful family walk from the old Ronald McDonald House near Children’s Memorial to the new Ronald McDonald House near Lurie’s Children’s. It was a brisk 4.5 mile walk along Lake Michigan ending with a enjoyable open house at the new house. September marks my 10^th anniversary of being on the RMH auxiliary board so today I walked a little taller with a strong sense of pride. The new house is spectacular designed to make each and every family feel as comfortable as they would in their own home. Our board (now called The Red Show Society) raised $50,000 (in August 2011 I raised $2,000 as my personal contribution by running the Chicago Rock n’ Roll Half Marathon) in addition to our normal fundraising efforts to create the much needed Volunteer Area for the new house. It was emotional to see the final product after years of hard work. My appreciation for the house is even greater now that I have experienced having a little one away from home. It was a fantastic morning.

Getting prepped for the walk

Our walking team

The Gawels minus one

Lita made a great showing dominating the 4.5 mile walk

Aunt Jill (Connor's favorite on Friday) and Uncle Steve (Connor's favorite on Saturday)

The beginning of the walk at the old house

The end of the walk at the new house

Thank you to everyone who donated to my run

By the afternoon, Nate and I were ready to spend the rest of the day with JD. We both traded off snuggle sessions with our boy but Nate was uneasy. While his numbers looked good he once again seemed uncomfortable. Around 5 I stepped out of the room for a moment and when I came back in his monitors were going off, two nurses were in the room and Nate was holding him. His color started to become more and more gray until he started to turn blue. They gave him oxygen but this was not a blow by this was full on mask which still took him a bit to come back up. It was almost as if he forgot how to breathe. As always with his episodes once he comes back up he completely passes out and his numbers look great.

Sleep Study

Everyone is stumped. These episodes have no pattern or blueprint to explain why he slows his breathing. As of now, the sleep study is still scheduled for tonight (6/24). There are a few different directions we can go based on the results of the sleep study. Good news, if he has an episode during the sleep study it should give us a few answers or at least point us in a direction. Bad news, if he has a comfortable night with no episodes we will continue to be stumped. I never want him to have an episode, yet, I am realistic to know that will not be the case. So, if he has to have another episode it would be better to do it during the sleep study while in the hospital.

Update: As I was updating the post I talked to our night nurse and the sleep study tech was hooking up JD. The test is on and hopefully we will have results in two days.

Everything we read in the WHS community said the first year was the hardest as everyone, doctors and parents, try to understand more about the child. Each child is unique making each diagnosis unique as well. Spending the first 2½ months of your little one’s life in the hospital with lots of ups and a few downs helps the heart grow more and more each day. JD will have many challenges, which in our eyes will always be overshadowed by his many, MANY milestones.

Just keeping you guys on your toes

Lita and her littlest man

Finally comfy and cozy

Room with a View

After being back at the hospital for a day we fell right back into the routine. Good news . . . JD seems more comfortable and there are only a few updates so this will be a shortish post. Yay! for shortish posts.

New Room

One of the goals in the new hospital is not to move kids from room to room. However, JD likes to do things his own way. As I mentioned we did not have a window in JD’s room at the new hospital. In passing, I may have pointed out how I wished JD could have natural light as I think it is important for a baby his age (he is no longer a premie)  . . . low and behold they moved us. Everyday JD is now greeted by the Eastern Sun shining through his extremely large window. Call me crazy but I have noticed improvement in JD’s comfort since moving into the window room. He is awake for more hours throughout the day, he is more active, and he appears to be more at ease in his new room. Plus, it sure helps mom and dad to have natural light when spending hours in a hospital room. To that, I have to thank our other primary nurse Beth who made the room switch possible.

Reflux

While JD’s oxygen saturation levels still drop every so often his overall numbers look much better. However, he tends drop during his feeds so the doctors are even more convinced he has reflux. I, on the other hand, am not. I find it odd he never spits up, we never see milk in his mouth, and he has not had problems with reflux until two weeks ago. Yes, it is possible to have reflux that we cannot see and yes, babies tend to peak with reflux around 4 months so he can start any time . . .but I still do not think reflux is fully to blame. My medical opinion, I think he chokes on his saliva because he has a hard time swallowing with the tube in his throat. And I think he has a hard time, ummm, “filling his diaper.” He usually fidgets and turns bright red just before he needs a change - normal baby stuff.

Yet, to ensure we rule out a few things the doctors have put him on reflux meds, which do seem to be helping. It is slightly difficult to tell what we can credit for the change in his comfort as we have changed a few things at once. That said he seems to be doing better so if the meds are helping then I am happy to be proven wrong about reflux.

G-Tube

My many, many days of medical schooling I have attended while here have led me to believe we would discuss the G-tube again. Now, this is the main point of discussion. One of the reasons I believe they moved us to a window room is our stay will be extended with a G-tube surgery. I will not discuss all the details again but the doctors are waiting for a consultation from the pediatric surgeon to decide if JD is ready.

There is another decision as well. When putting in the G-tube they are debating about doing a G-tube and Nissen Fundoplication surgery to help with reflux. Basically, the Nissen surgery is very intense operation to prevent food and liquids from going from the stomach up into the esophagus – a fancy way of saying reflux surgery. NO WAY . . . is what I said to the doctors. We are okay to discuss the G-tube but there is no way I am convinced to do the Nissen procedure as well. Dr. P reassured me this will only happen if they believe it is reflux, which is not being controlled by the meds. NOPE. After putting my fingers in my ears and singing so I could not hear any more they said this was a last resort.

On Monday, I plan to be here for rounds so we can chat about timing for the G-tube surgery. I will once again put my fingers in my ears if they even mention Nissen surgery again. In our eyes, that would be quite extreme for JD. Don’t get me wrong, the doctors are in no way pushing this surgery as they have just mentioned it. Yet, in my mind it is not up for discussion (who knew I could be so bossy).

Playful JD

One last thing I have noticed, when JD gets fidgety or upset while awake he settles down when put him on my legs facing me and we play. We sing Head, Shoulders, Knees, and Toes, ABCs, and You Are My Sunshine. We work on holding our hands and touching our knees. And we read books. The more we interact the better his numbers. It is my new goal that anytime JD is awake I will not put him down and we will play the whole time. There are few things better than looking into the bright navy blue eyes of your child.

Navy blues

JD loves playtime

 JD is having a great day and getting more comfortable with each feeding. We are confident it was the right thing to do to bring him back to Lurie’s. Once he has the G-tube we know he will continue to grow more comfortable each day and we can official start (again) our life as a family of 4! Just in time for the 4^th of July.

Connor came to visit his little brother again today and loved the scrubbing in part of the day. Once in the room he continued to walk around rubbing his hands together saying “wash, wash.” Oh how proud I am that we are raising a germ-resistant son.

Happy Weekend. Go Cubs! 

JD's new digs, notice all the natural light coming from the left

JD's 2 Month sign

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