Quick Update

Nolan has kept us pretty busy since being in the hospital. We have had several doctor appointments and therapy visits. We have really seen big improvements in Nolan’s muscle coordination and stability, although we still have a long way to go.

            Currently Nolan has a skills therapist and an occupational therapist that come to the house once a week, and next week he will start seeing a physical therapist in Fort Worth which we will be going to every Monday.

            We have added a pediatric eye specialist to our team of doctors. Nolan is pretty near sighted, which isn’t a big deal right now because Nolan’s world is small and close. However, he will need glasses by the age of two. The good news is that as of now the doctor does not see any eye/vision problems that cannot be corrected, which was a concern for us.

            We had an appointment today to see one of the top CDG doctors in the world, Dr. Morava based out of Tulane, but because of our nice winter storm our flight was canceled and we are having to reschedule. We are extremely excited about getting to meet Dr. Morava, and are anxiously waiting for our next appointment on Januray 7. The main goal of this appointment is to gain information and become connected with the top researchers in the world.

            Nolan has also added another Endocrine doctor, one who specializes in Hyperinsulinism. Since being in the hospital Nolan has struggled with maintaining his blood sugar. He has to eat every 3 hours, around the clock, meaning we have to wake him up at night to eat. It can get pretty exhausting.

            Tomorrow we will check into Cook Children’s hospital where Nolan will undergo a fasting study. Basically, tomorrow night Nolan will start fasting and we will check his blood sugar every hour. When his blood sugar drops below 50, he will have several labs drawn and the fasting study will be over. These lab results will give us some insight on why he is unable to maintain his blood sugars and hopefully will show us how we can treat it. We were told we would only be in the hospital for a couple of nights, but that just depends on how Nolan does with the study. We ask for your prayers for Nolan, his doctors, and nurses , and our sanity during our stay.

            We appreciate all of the thoughts, prayers, donations and kind words we have received. We cannot thank you enough. Nolan is growing and is such a happy boy, have you seen those chunky cheeks of his??? We are beyond blessed to have the support system that we do. I hope you continue to follow the life of our sweet boy. I plan to update you as often as I can. 

I leave you with a few pictures of our life these past few months.

Nolan got baptized and we were blessed to be surrounded by friends and family.

The top right photo is at a doctors appointment, Nolan almost always has an entourage when going to the doctor.

The Birth of Baby NoKo- From Dad's Point of View

Here I am at 40 weeks pregnant, not a very good angle, I promise my belly was much bigger than that. My last meal, and Joe and I after getting checked in at the hospital.

5:10            Wake up, Andrea showers, I pack car
5:45            Leaving Gordon, on our way to hospital
6:45            Arrive at hospital
7:00            Check in, and it is a long process

8:00            The drugs start, to help get this little baby out                      
                   Dawn and Mary have been the nurses thus far and they are really good. 
                   This room is really cold

9:13            BC called, very nice of him. He had great advice, "when those 
                   contractions start, get in the corner and shut up"

9:55            Dr Robbins made her first appearance. She came in and broke the water,
                   said everything is going fine and looking good

10:18          Our first visitors, Jim and Maegan... No surprise
10:50          Pa and NiNi
11:18          Dr. Dan, we don’t know where Lovey is
11:20          Lovey is here

We had quite the support system gathered in the waiting room

11:55        Sug decides it is time for an epidural, 3-4 and 90%
12:28        Nurse anesthetist is in the house, getting an epidural. Dawn is really good

     and is the nurse in the picture, they say it wont hurt

     Andrea says otherwise
12:47        The shot has taken place, a really odd feeling. BC said I can now go

     back to doing my normal annoying things like breathing too loud

     and blinking too fast. It should be coming up fairly soon now. I do need to

     eat though or I will probably pass out. Jim is bringing chipotle. The

     nurses joke about the epidural being a free back wax, it is a huge band aid.
1:18          Chipotle
1:20          That didn't take long. Andrea is more happy now than the rest of the day,

     mostly because of the catheter. Getting up to go to the bathroom is 

     quite the chore.

2:00          It is the 2:00 check to tell progress. Still a 4, progress is good but it

     doesn't seem like birth is around the corner

2:25          Things are good still...seems to be slow

2:30          Attempt to take a nap.

2:40          Nurse walks into wrong room and wakes us up, naptime over
4:00          Next check up, she is a good four now and they say that the slow part is 

                 about over. Who knows what that means.

5:00          Check up, nothing new. Patience.
Apparently there was a big commotion in the lobby with a family and with a son/grandson? Saying loud obscenities at the grandmother, everyone is talking about it.
7:33         Andrea is now on all fours trying to get this little guy out of here
8:30         Andrea has spent the last hour on all fours, anxious to see what the

                progress is after this. She is a real trooper. After all of that she is 

    talking nails with her mother, wow...
8:43         She is a 5, slow process but everyone is healthy, it isn't happening 

    quickly but Dr R said it is good and she will be in later, 

   "Everybody go take a nap"

9:10         I scarf down two tacos.
9:25         Family heads home, should be a while till baby time, we are going 

   to try to take a nap, it is freezing in here so we will see how that goes. 

9:35        Epidural is beeping loudly....so much for sleep, they change the bag and

                we are back in action

11:07      Andrea isn't feeling well, things haven’t been great since about 730, thinks

               contractions are farther apart, getting discouraged at this point
11:09      Dr Robbins comes in and plays the role of superwoman, says everything is

   fine. Andrea is now at an 8 and feels like she will be pushing in the next

   couple of hours. She was just at the time you needed her the most. We call 

   and update family, they head back up here. 

Andrea "I guess the 26th is a good day to have a baby."

11:50       Still can't sleep, photographer is on the way. 

                It is probably 60 degrees in here, ice cold.

Andrea  "I guess it is chilly in here but I can't tell."

6/26

12:09       Nurse report, Good and ready.
12:54       Ma and Pops and Mae Mae are back, Dr Dan is sleeping on a pizza box...

    Wakes up very confused.
1:17         Checked, she is at a 9 and plus 1 in. Should be anytime now. Nurse put her

    back in all fours position, not sure why. It is getting close.
1:47        Still in all fours, Dr Debbie is keeping a wet towel on her back, she isn't

   feeling well.  I expect Dr R here within an hour.

2:02        Andrea - "I really just want him out and I don't want to push."

2:13        Out of all fours, nurse says to rest. Wet towel on head.

2:25       "I was really fine till about 7 pm."

2:58       The five thousandth reference to pops shining his shoes. It is really cool,

               lost art.
3:02        Are you ready?

3:20       Andrea gets something for her stomach and going to add pain medication, 

  she is not feeling well at all
3:48       Nurse says we just have to wait for that left side to clear.
4:12        Check up, will push soon. Just seems like he isn't ready just yet. 

   I feel bad because the others came back on no sleep. They could have

   easily waited till morning. Next time we will wait to tell everyone when 

  to come. Andrea is still in pain but I believe that she is getting at ease 

  a little. The push coming soon, will hopefully break out. Did I mention 

  it is freezing in here?
4:37       We are going to have this thing
4:56       Still pushing, doing great... Pushing.

              Tough process.

5:01       These pushes seem to be going somewhere. He has hair she says.
5:03       She says that he is almost here, asks if I want to see the next one...
5:10       Getting closer, by this point I don't know what close is.
5:18        Nurse – “most I've seen of him so far” Hard to make progress they say.
5:26        Still no Robbins, but it is going well
5:30        Nurse "we are going to be calling the troops in soon"

Andrea "I hope so."
It is a different face from Andrea, this just shows how difficult it is. She is tough and this is taking a lot out of her.
5:40        Seems to actually be getting a little more real now. We will see if Nolan

   actually comes.
5:43        Nurse, so close... Wish I could help.

5:45        Pressure is constant, he is really low.

5:50        Dr R is about to be in the house.

6:00        No Dr yet, and baby not quite here. Seems to be very close but what do I

   know really.
6:03        Dr. R in the house, we adjusting and it coming.
6:08        This one will be it she says
6:10        It is a boy!!!! Temp 97.1, looks real long, scary, he isn’t crying, 

   sounds snorty, cone head because of time, nose like Andrea
6:40        Nolan's first poo poo on mom
7:12       First family photo
7:20       Intro to the family.

             

Nolan Val Kostiha born on June 26, 2013 at 6:10am, 7lbs 3oz, 21 ½ inches long