15 Days Later

Smiles

Hard to believe 15 days ago I woke up pregnant only to go to sleep that night, on my back, not pregnant. It feels much longer than 2 weeks. This morning I went for a walk with Connor and I wanted to shout “I just had a baby 15 days ago please forgive the outfit.” Normally, when you have a baby and go on a walk people see “oh she has a newborn, I totally get the puffy eyes, no make-up, thrown together outfit” look. For the first time it hit me today that all my justification for my appearance is snuggled up tight with a window view on Lincoln Ave. I found myself telling the casher at Trader Joe’s I just had a baby and the teller at Fidelity I just had a baby and giving looks to other moms on the street that said “ I just had a baby.”

After all this trouble to let everyone know I had a baby I realized I am sad I am not pregnant any more. I miss JD being with me all day long. I miss the reassuring kicks, which told us he will always be a fighter. I even miss the extra pounds with the round belly, which told everyone I have a new little munchkin waiting to take on the world. I know I felt some of these emotions with Connor but I feel as though these are exaggerated because I am still using the single stroller instead of the double.

Don't get me wrong, JD is making great progress but we are ready for him to be home with our family. We are still a few weeks away but we are ready to start our life of 4.

Just a few thoughts I wanted to share as people have been asking how I am doing. To answer, I am doing very well. When I see my little man flourishing then it is always a good day. He is doing so well I just want to snuggle with him at home instead of the NICU . . . although with the construction going on outside our condo right now the hospital might be the more peaceful place to be.

Sorry I do not post more often but the good news is we don’t have many new updates. Plus, I thought I would have more time with the computer while at the hospital but I spend most of time holding JD. . . and I would MUCH rather hold my munchkin than use the computer.

Just a few updates:

Neck Collar

As we have mentioned, JD’s cartilage in his neck was slightly off when he was born (we think that may have been the reason he was keeping his head tucked into his neck at birth) so the neurosurgery team wanted to use the collar to help keep his neck straight. The goal is to ensure the neck is straight as the bones mineralize as he grows. Based on the first MRI/CT Scan/X-rays they took during days 2 and 3 to the MRV (similar to an MRI) they took last week they have already seen great improvement in his neck. Obviously!!!! So we will keep the collar on as he continues to grow to help ensure the neck stays straight and strong. VICTORY!

Incubator

JD has “upgraded” from a Giraffe (baby warming table which anyone who has had a baby knows exactly what they look like) to an Incubator. You are probably questioning the upgrade to an Incubator as I did. It took me sometime to understand how we were not taking a step back by putting him in an Incubator. According to Hipster Dr. H, this is NOT a step back but just a better way to use his calories. When JD is in the Giraffe he uses his calories to keep his temp up and stay warm, however, the doctors want him to use his calories to gain weight. Therefore, the Incubator is a more efficient way to use calories as it helps to regulate his temp so JD’s little body can gain weight. HUH?!?! I still have a hard wrapping my head around that logic but if it gets him “out of the box” sooner I will take it.

Goals

Dr. S and I had a discussion about JD’s goals to get him “out of the box” and into an open-air crib, which is the last step before being released. I am not rushing anything, as I know they are taking great care of JD here at Children’s, but Nate and I are goal-oriented people so we want to make sure James is on the right track. Plus, I love a good check-off list (right Spark friends).

• Temperature: He needs to be able to maintain his own temp without the help of the Giraffe or Incubator. CHECK, Above Target – he is rocking Temp Control

• Breathing: He needs to be able to breathe and maintain steady breaths on his own. CHECK, On Target – he is breathing on his own but he still breathes slightly faster than we would like to see. 

 

o Weight Gain: This is the area that Needs Improvement (notice no check). JD is up to full feeds with some additional calories added in to help him grow big and strong. He is currently doing well but he is not yet back up to his birth weight. During Rounds yesterday, I had my notebook full of notes to discuss with the doctors (I’ve seen Grey’s Anatomy) mainly JD’s weight gain in association with WHS. Nate and I wanted to make sure they were taking into account the fact that WHS kiddos tend to take a bit longer to gain weight. We don’t want to be here for months and months because he has not gained the weight expected by other babies. We want him treated the same but with the knowledge there may be reasons behind his slow weight gain. Dr. S said we will start to assess his growth potential.

Once he gets out of the box and into an open-air crib we will focus on his feedings and the best way to ensure he is getting nutrients.

Everyday, James has a new nurse falling in love with him. Previous nurses will come in to check on him, new nurses on the other side of the room will come over to see him, and the PT ladies just LOVE him. He has everyone’s heart but mostly ours. Nate and I just sit and stare at him every moment we are with him.

One last thing, JD’s first girlfriend was discharged on Saturday. As I mentioned in a previous blog, a friend from college was in a room across the way. I became friends with his wife. A week ago they moved into our room and JD was officially living with his girlfriend, without asking for permission. Where did we go wrong?!? It was nice having a friend in the room to chat with as we sat all day staring at our little ones. However, it was bittersweet when they left but we were very happy they were able to take their little lady home much earlier than they expected. JD will miss little Maddie and looks forward to future playdates.

JD wanted me to tell everyone “Go Hawks!!!!”

We LOVE this face  . . . so do the nurses

Not sucking his thumb just yet but great progress - Speech will be so proud