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 9^th). 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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