New Dose of Reality

Last Thursday (1/14) Paul and I had a bunch of appointments at CMC-Main and Levine Children's Hospital. We would have a nurse coordinator with us the whole time. We knew we would be having three tours and meeting with two doctors, but we were not at all prepared for the dose of reality that we were about to experience. 

First up was our meeting Shea's heart surgeon, Dr. Maxey.  We were very anxious about this consultation, we knew it would really tell us whether staying in Charlotte was a real possibility for us or not.  I wont go into the whole appointment, but I will say, we both really liked him...and his statistics.  Since our diagnosis and treatment is a little bit more on the rare side, we wanted numbers, and good ones!  He was very honest and upfront with us.  When sharing the information with us, he and us got teary-eyed.  We know this doctor is a man who is not heartless and cold.  He fights for his patients and will do everything he can to save them.  We were lucky enough to be in a room next to a patient of his who has had the BT shunt and the Glenn (our first two surgeries) and was getting ready to schedule his Fontane (3rd surgery).  We met his parents and him....cutest little 2 and half year old ever!!!  I was able to quickly ask mom, was she pleased with the care Dr. Maxey had given them and had she known prior to giving birth would she have stayed here.  She answered yes to both of those questions immediately. There was no question in her mind that Dr. Maxey and Levine's was the place for her son.  Such relief.  And also another local heart momma I can reach out to. 

Next we toured Labor and Delivery.  Pretty standard, except two things. 1) One labors and delivers in one room and postpartum in another room.  I am not super excited about moving rooms, but I am glad I don't have to walk it!!! (it was a long walk!) 2) We will have a NICU team in the room with us.  Because of Shea needing immediate checking out and care. We will have a team of 3-4 people dedicated just to him.  He will be in the room with us while they do the initial checking out.  Praying now that he will be okay enough for Paul and I to hold him for a few short minutes before rushing him downstairs to the NICU.  I know that when they whisk that sweet child out of my room, I will lose it.  I apologize now to my husband, nurses, doctors and family members.  I will not be a nice person, I will be a #hotdamnmess,  I will be lady who just delivered a baby and dealing with all those emotions PLUS not knowing what  is going on with her child.  Paul will be able to go down and be with Shea, once he is settled.  Most likely a few hours after delivery.  I will be allowed to go down when the pain killers ease up and I am feeling up to it.  

While we couldn't tour the NICU due to admissions and our schedule, we will be going back to do that tour in February.  We did however meet with a neonatalogist who did a wonderful job describing not only what his job was and the NICU itself, but also how Shea's first few hours would be.  Our son will be receiving an echo from a cardiologist as soon as possible.  Hopefully he will be born during the daytime and can get that echo quickly...would help this nervous momma's nerves.  But if born in the middle of the night, he will probably get it the next morning.  Of course if the monitors are telling them he is not doing well, they will get the cardiologist on call to do it right them.  Some other things he prepared us for:  

• Shea's color will not be the pink that you see.  He will be dusk colored or even blue shaded.
• Skin to Skin time will be hard because of him being hooked up to everything.  They will try their best for some skin to skin and also some breastfeeding, but again at first they just want him to spend time in his little crib.
• Shea will probably have either a PICC line to help with meds and nutrition.  We need him strong enough for surgery!
• We will most likely be in the NICU for 3-7 days before we head to surgery 

We were able to break for lunch, which while I didn't think I needed...I needed it.  Surprisingly CMC-Main's food was great!  I had a stromboli and Paul had the pizza.  We each had a dessert that was equally yummy!  We were also to take a break from the seriousness and enjoy some talking.  Of course we talked about what we had just experienced, but still talking to each other was nice

Next up we visited the CVICU.  There are several things about this unit that I absolutely loved.  One being that there are family rooms in which one can sleep on a real bed!  These are next to the unit. However there are only 5, and being their are 10 CVICU patient rooms, it means not everyone gets a room.  Another thing was that there is a couch/bed in the room.  So I can sleep in the room with Shea.  Also they do multidisciplinary rounds.  Which means not only will all the drs and nurses be there but also the social worker and anyone else we need.  We are also encouraged to listen at the door and write down our questions to ask at the end of all their reports.  Being a part of our son's care is super important and hopefully we will feel prepared as we can be.  The plan is to be moved to the CVICU a day before surgery.  After the surgery and once Shea is stable and not in need of an "ICU" room we will head to Progressive Care.

Progressive Care unit looked similar to CVICU.  Individual rooms, with couch to sleep on! The room my also be big enough to keep a regular bed in the room as well as Shea's crib.  Which means two adult sleeping areas.:)  Our whole experience will last us about 3-5 weeks in the hospital.  The majority probably being in this kind of room.  We are hanging out while Shea is eating and growing.  We want him to be a seriously hungry boy!  50% of babies have to go home with a feeding tube, and while I will do everything that Shea needs, I really don't want that added to our plate.  

Some things that we learned while walking through the hallways, sitting down with people and having conversations (and that I did not know where to put in this blog)

• The BT shunt would be our first surgery-It's a $1 million surgery and is about 3-4 hours long NOT including pre and post op. So Shea will be gone for 7-9 hours, talk about the need for distraction!
• Since Shea will be hooked up to lots of different things, breastfeeding is going to be one of those things thats going to be hard to even attempt in the first couple of weeks. We will be doing lots of pumping so they can measure what he is taking in.  They tell me hospital pumps are the best....guess I will find out soon!
• The new head heart surgeon, Dr. Kirshbaum, will be starting April 1st.  So it is possible that he could operate, if Dr. Maxey is sick or on vacation.  We will have a consultation with him as soon as he gets here.  This momma needs to know who is doing open heart surgery on her baby!

Thank you readers, friends and families for continuing on this journey with us.  It sure has been full of ups and downs and we know that trend will continue.  We so appreciate all your messages, texts, and calls.  Just knowing you are out there helps us move forward! :)