Thursday, May 31, 2012

Homeward Bound

Sidenote: We are playing around with the pictures and layout of the blog so it may look different from time to time. The skyline picture was taken from the roof of the parking garage as I was leaving the hospital. I love this city.

WOW, it has been two weeks since our last post and we have lots of updates. I will try to keep it as short as I can because I have been told I am “very detailed” when I write. Pretty sure that is code for “do you ever stop talking/writing” . . . nope.

Wednesday, 5/16
Right as I hit publish on the previous post we had some huge changes to our story. On Wednesday the Nurse Practitioner for the Pediatric Surgeon (Dr. C, the man who will put in JD’s G-Tube) came by to chat. After introducing herself she said we could discuss JD’s upcoming surgery to which I said “great, would you mind coming back on Friday afternoon when my husband is here so we can both talk to you.” She paused and said, “well we can chat on Friday but that is the day James is scheduled for surgery.” WHAT?!?! Considering we have been asking to speak to someone regarding the G-Tube surgery for a week with no luck a surgery scheduled for two days time was quite the shock.

Needless to say I was taken aback as was the NP who thought this was going to be a quick stop by. I told her we would not be ready for surgery on Friday if we did not have the chance to speak to the surgeon prior. To her credit she said if we were uncomfortable we could push it back but we at least know he is on the schedule for Friday. She left me with a packet explaining the G-Tube and told me she would come back to discuss in more detail. Guess what, she never came back.

Frustration and nerves were filling my emotions as Nate and I talked that night. Neither of us would be comfortable with surgery on Friday without talking to someone in more detail. In our minds the surgery would be canceled for Friday unless someone convinced us otherwise in the next two days.

Thursday, 5/17
Happy 4th Anniversary to us!

Nate went to the hospital early Thursday morning as he always does and was able to schedule a consult with Dr. C. A last minute conference call with the surgeon had me running around just like my last minute client calls use to do. With Nate at the bedside and me at home with Super Why playing in the background we discussed G-Tube surgery. To ensure I stay away from the “very detailed” label I will give you the outcome. Dr. C recommended we wait until JD gets a few more kilos on his body and few more months under his belt before we do the surgery.

Hmmmm, on Wednesday we were full speed ahead on the surgery train expected to arrive Friday and yet on Thursday we were asked to get off. Why was the team on board with the surgery on Wednesday but on Thursday everyone was head nodding with this change?

I needed to discuss this change with Dr. D, our pediatrician, as he was in agreement with the G-Tube from the start. After speaking with the team, Dr. D agreed it would be best for JD to wait until he was bit older to have the surgery. With JD’s growth and weight gain the surgery was not a need to have at this time. Rather than put him under anesthesia this early we should wait until he was older to make it easier on his little body. UGH.

Every reason we were given makes perfect sense; yet, I was really looking forward to getting the OG tube out. JD is not a fan of the OG tube and his feedings with the bottle are going okay but I believe they would be better without the tube in his mouth. Plus, the doctors don’t like sending kids home with an OG because it is easier to pull out, meaning we would have to put it back in at home (scary). The other option is the NG tube (through the nose) but with his cleft palate it can get caught up and cause more problems. In my mind neither option sound optimal to me.

Ultimately, we decided to wait a few months to be reevaluated before receiving the G-Tube. I will not go into the ridiculously pointless conversation we had with one of the doctors but while this means we have to come back for another extended stay it also means we are ready to chat about discharge.

Week of 5/21
Last week was spent trying to nicely get the doctors to nail down a general date for when we can be discharged. We continued to nicely remind the doctors with the move coming up on June 9th there really is no reason to keep JD at the hospital. He is tolerating his feeds, growing, and extremely stable with no special treatments needed. Why would they want to move an extra kid that does not need the help? And each time we say something the doctor ever so smugly says “if he needs to be here we will not rush him out” (I may or may not like the current Attending). I get it but COME ON we are only waiting for services to clear him. If something is wrong, please by all means keep him here but if we are only waiting for ophthalmology to check his eyes one more time lets get on with it.

Don’t get me wrong; I want to make sure he is healthy and ready to come home. Plus, having two kids at home with me will be a challenge but we would like our family of four to be together. Everyday I look forward to the moment Connor gets to meet his little brother. When he sees a picture he shouts “JD” or when you ask who his little brother is he knows “JD” but yet it can’t be real for him until he is actually home. Can you tell we are excited to bring James home?

As a way to keep us happy (or so I think), they have moved us back into our favorite room with the view and natural light. Oh how it makes the days so much more cheerful.

Now that we know we are going home with an OG tube there are few more things we need to learn prior to leaving. Over Memorial Day weekend Nate and I checked a few things off our list.

CPR – we took a class before we had Connor but we wanted a refresher
OG Tube Training – before we can go home with JD’s OG tube we need to learn how to change it (scary). Both Nate and I have to “pass” changing the tube twice before we can leave. It is not hard and I know it does not hurt him but I dislike feeding a tube down my little man’s throat. If it comes out at home we will have to Rock, Paper, Scissors to see who has to put it back in (although I am sure Nate will be super dad and be the one to put it back in)
Endocrine Labs – sent out on Tuesday, 5/29
Echo – completed Tuesday, 5/29
EKG – completed Tuesday, 5/29
Baseline EEG - completed Thursday, 5/31 

The more electrodes they use the smarter the child

The remaining items:
     ABR – hearing test
·      Ophthalmology Exam
·      Car Seat Test
·      DVD – every parent needs to watch prior to taking their child home

As we mentioned our fabulous Resident, Dr. N, put together this list as well as started making all of our follow-up appointments (12 and counting) and OF COURSE Friday was her last day on our rotation. Not again! She promised me the new Resident would be even more detailed . . . we will see.

Thursday, 5/28
Today felt like the last day of freshman year in college. JD’s new BFF (Little J) was discharged. After being moved into the loud, cave room we starting chatting with the family across from JD. Little J’s mom was at the hospital even more than I was so it was nice to have someone to talk while sitting holding our kids for hours.

Like I said, it felt like college. Little J has been at Children’s for awhile so I was extremely excited they were going home, yet, I was sad I was losing my mom friend. With an exchange of emails and phone numbers and a “stay in touch” I was left wondering if we would actually get together in the summer (we have been texting so maybe we will “see you this summer”).

With Little J leaving it made me realize how close we are to taking JD home. Oh. My. Goodness. How am I going to have two little ones at home all day? Excited, nervous, anxious, thrilled . . . was how I felt all weekend.

Memorial Day Weekend
Another fantastic weekend in Chicago! 

Family run to the Farmers Market

Connor used daddy's head as the drums

Saturday Farmers Market with Connor
Sunday night dinner with the family then afterhours with JD
Monday Nate passed one OG tube changing

But best of all, we started discussing discharge. No one actually likes to say the word H-O-M-E because they don’t ant to jinx anything but everyone seems to agree it should be early in the week of 6/4 . . . squeezing it in before the move.

Just to keep things exciting and dramatic most of the kids who get a discharge date tend to have an “episode” before leaving. And our little munchkin was no different. In the 56 days JD has been at the hospital his heart rate has never dipped. . .but on Monday he had a Bradycardia (a slowed heart rate of less than 80 beats a minute – more info in Medical Jargon) with a Desat (a blood oxygen level drop). The episode occurred while we were moving him, which could have caused the drop due to bad positioning of the collar, but he did “gray out” a bit and the heart rate dipped. It sounds scarier than it really was because he cried the whole time so we knew he was getting oxygen but he has never dropped his heart rate.

Similar to when you get in trouble and beg mom “please don’t tell dad” it is the same thing with an episode. I wanted to run to the computer and shout to the nurse “please don’t record it” because I knew when the doctors saw a Brady it would push back our discharge timing.

Tuesday, 5/29
Went to the hospital early for rounds to meet the new Resident (Dr. R) and Attending (Dr. P). Confused by all the doctors read the Meet the Cast section to keep everyone straight.  As Dr. R was reading the updates she mentioned the Desat with the heart rate drop to 70 (BLAST, it’s on his permanent record). She was nice enough to ask if it actually “counted” because it was during a position change. Dr. P said “yes it counts.” Then she turned to me “when we have a Brady it is procedure to watch the baby in the hospital for 3 – 5 days to ensure it does not continue. It is my policy to watch for the baby for the full 5 days so I am sorry if that changes your thoughts on when you can head home.”

While it is great he is being watched closely it just makes us nervous about saying H-O-M-E. Luckily, the Brady occurred on Monday 5/28 and we were not talking about discharge until the week of 6/4 so it did not technically set us back.

Thursday, 5/31
Today I got a call from Home Healthcare saying they received an order for the OG tube equipment for James and they are ready to deliver to us tomorrow. WOW!!!!! This is getting real. We are getting everything in order.

  • Nate and I have both passed the OG tube changing
  • We have all 12 follow-up appointments set
  • The nurses have us doing just about everything for JD while we are at the hospital
  • Neurosurgery said JD will have the collar on for 3 months but we can take it off for baths and for feeding as long as we support his neck
  • Tomorrow Nate and I will watch the going home DVDs
  • This weekend JD will do the car seat test
  • Nurses are coming up to us in the hall saying “I hear you are on your way out” meaning they are talking about it behind the scenes

This time next week we could be snuggling with BOTH of our little pumpkins. How lucky are we to have watched our son grow into such a wonderful little baby. With the exception of the first few days of life JD has been stable and working on growing. No oxygen, no additional meds, no surgeries (so far), no episodes, very low maintenance. Many other babies have come and gone who are in a far worse place than James. Everyday I realize how blessed we are to have a champ and a fighter and another little boy to add joy to our life.

One last thing, JD now weighs . . .5lbs 15oz!!!!!!! And yes, that was a long post. Good night.

One of many, many rockin' dance moves

"Hmm, how can I get out of here before they put that tube back in"

"Look mom, no collar. . . I promise to be good"

"You wanted me to gain weight but you did not specify where so I am storing in my cheeks"

Saturday, May 19, 2012

MTV Cribs NICU Edition

After moving to the big boy crib we wanted to make sure JD was sleeping in style sooooo we pimped it out. Notice the picture of Connor in the crib giving JD the thumbs up, Connor is very happy JD is gaining weight like a champ.

JD's animals watch over him every night

Happy Crosstown Classic Weekend

It is a beautiful weekend in Chicago, with the exception of the protesters currently living next door to us. It smells like the 60s in the streets or how I imagine the 60s would smell. Anyway, JD wanted to celebrate Cubs vs. White Sox by wearing his Cubs outfit. Remember opening day when we could only lay it on him because he was a tiny 3lbs well now he can actually wear it. It may not totally fit him but he deserves to wear it more than some of the actual Cubs players.
"Take me out to the ballgame . . ."

April 5, 2012 - 3lbs
May 18, 2012 - 4lbs 12oz

And of course, JD was dying to show off Aunt Katie/Nia’s special gift. She sure knows how to make our little man smile in style.

Our favorite cub of all

As of Saturday, JD is tipping the scales at 4lbs 13oz. If any one questioned whether or not he would continue to gain weight in the open-air crib JD just proved you wrong – obviously.

JD ready to take on the world outside of the NICU

Nate and I celebrated our 4th anniversary on May 17th with a conversation with the surgeon, homemade tacos (I finally cooked again), Skinny Girl cocktails/beer, a little Connor time, and a little JD time. There is absolutely nothing I would change about the day. I will post more about the medical stuff later but know that JD is, as always, dominating the NICU.

7 years together, 4 years married, 2 incredible boys, 1 magnificent lifetime

 Hope everyone has a marvelous weekend enjoying the gorgeous weather.

Wednesday, May 16, 2012

I’m Free

Sorry I am a bit delayed in posting. I started writing this post last week but could not finish it until now. My goal is to post more frequently.

My Mother’s Day gift came early on Friday night around 8:30p. Our FABULOUS primary nurse, Amy, texted Nate a picture of JD is his new open-air, big boy crib.

Bog Boy Crib!!!!

As you know we have been anticipating this for a few weeks as this is one of the steps before being discharged. VICTORY!

Happy Mother’s Day
What a beautiful day in the city of Chicago! And what a beautiful day we had together as a family. While we could not be with both boys at the same time we were able to give each boy our full attention. Connor went running on the lake front path while JD snuggled comfy in the quiet room. JD loves his new bed so much he put on 45 grams overnight. On Sunday he weighed-in at 4lbs 5oz and as Connor would say that is a “HUMONGOUS” jump in weight. 
Handsome big man

Adorable little man

Business Man Connor

Running on the lake

C Money
Next Steps
Now that JD is in an open-air crib we are on our way out, right? Well . . . not yet. There are still a few more things we need to do. Good news, the list is not as long as we originally thought. The new Resident, Dr. N, created a check-off list of the things that need to be completed prior being discharged as well as follow-ups for the next year. Dr. N is phenomenal as she follows up on absolutely every single thing we have ever mentioned. She is very thorough, she is very organized, she writes lists, she is my kinda girl!

Prior to Discharge:
           1)    Repeat Echo
2)    Endocrine Labs
3)    ABR (hearing test)
4)    Car Seat Test (to ensure he can breathe comfortably while in a car seat for extended periods of time)
5)    Eye exam – we are not fans of the whole eye exams/ophthalmology thing as JD hates, hates, hates it and I would too as they press on his eyes a few times a week

If you had asked us on Friday if we thought JD would be spending Memorial Day at home with us we would have said yes with no hesitation. However, it looks more and more like we will be taking another ambulance ride back down to Streeterville to be among the first families to stay in the new Ann & Robert H. Lurie Children’s Hospital of Chicago.

The main step missing from that list is the discussion of the feeding tube. We are now at the point where we need to chat about the best ways to feed him at home. There is not much they are doing at the hospital that we cannot do at home which is why we need to find the best home feeding option. Nate and I are prepared for this talk as many of the babies we follow with WHS have a feeding tube of some kind (at least when they are younger).

Our options include going home with a NG Tube or G-Tube (differences explained within the Medical Jargon section). With the Cleft Palate, being born early, and WHS we have a trifecta of feeding challenges. At this stage in a baby’s life ensuring JD is getting the proper nutrients is key to his growth, development, and weight gain. Without the right nutrients it may delay all of the above so feeding is our number one priority right now.

There is no need to go into the pros and cons of each option but we are leaning towards a G-Tube, which is a surgical procedure. Everyone at Children’s seem relived that we are on board with a G-Tube. The doctors have started to move forward with pre-surgery tests and OR dates yet no one has officially sat down with us to have a discussion. From what we gather, most families need to be talked into a G-Tube making it a very long process. Given Nate and I are the ones who brought it up they are jumping on board and running with it because it makes the whole process much easier. Yet, they still have not had in depth conversations with us.

Nate and I have done some research through the Wolf-Hirschhorn community and have spoken to our previous doctors (including Dr. D, our pediatrician) but we are still hoping to have more information by the end of the week. As far as parents go we are pretty low maintenance and have been for a while. After JD’s first week at Children’s we (including JD) have not needed much attention. Therefore, we are ready to spend some time with the doctors to come up with a plan to get our little man home.

While we are frustrated with the lack of conversation with the doctors we are impressed with how fast they are moving forward with the G-Tube preparations.

This brings us to the next steps . . . we have no idea what that consists of BUT we do know we are getting closer to a homecoming for JD. As I mentioned above we no longer think he will be home with us by Memorial Day so our new goal is Father’s Day. Why are we pushing our goal a full month? Well, we are not sure if they will delay the surgery due to the move (scheduled for June 9th). There are two thoughts:
1)    If it takes a few weeks to get clearance and prepare for the G-Tube surgery they might wait until after we are settled in the new hospital. The reasoning behind the wait is they do not want him recovering from surgery while traveling through the pothole filled roads of Chicago.
2)    Then again, if they can transport one less kid they might get JD scheduled quickly so he can be discharged before the move.
Let’s hope to have the final decision by the end of the week.

No matter what the final decision we are so happy with how JD is growing and how well he is progressing. He finally looks like a little baby with more wakeful hours throughout the day. JD has also started to stretch his lungs. For the first month he never cried but he has started to express his feelings through cries. And we love it. Not many parents of a newborn love to hear crying but we cannot get enough. It shows he is developing and it allows us to know when he is uncomfortable and in need of something.

Now that we are closer to bring JD home it is time for a deep, deep, deep clean of the condo and you know what that means . .  . it is bathroom cleaning time. UGH. I know I will feel better once I can clean but I have to work myself up to it. How will I ever keep this place clean with two kids living here? Goodness. 

Until next time, enjoy the fabulous Spring days.

Looking bigger and better every day

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