Driving to LA is not one of my favorite activities, but it is something that we now do a lot of and don't have much choice with, so you just do it and pray that God will give you the strength to survive the day, especially when it is a long one like today. And we can say that God did carry us through the day amazingly.
We left bright and early at 8:00 am to make it to LA by 10:30 am. Very close to Magic Mountain Mia started to get a bit fussy so we pulled off to change her diaper and give her a moment out of the car seat. As we were sitting there, Brad looks over at the freeway and there is a police car driving very slowly with a lot of cars following. A few minutes later the freeway is at a stand still...and we're thinking, oh no...this doesn't look good. Rather than jumping back on the freeway where it was a stand still, Brad drove us south on surface streets and we were able to get back on the freeway in front of whatever happened (we have no idea!)...and we were thankful. Needless to say, we arrived at UCLA right on time for our first appointment, thank you God.
Our first stop was with the intestinal doctor. Note: Some of what I write here may be graphic, but in order to pray appropriately, I feel like I have to explain the situation in detail. Mia weighed in at 4.5 kilos...and remember, they wanted her to be around 5 kilos (11 pounds) for the next surgery...so we are very close, in fact, close enough to start the process! That made me very happy, you see, I need goals and this puts getting everything done one step closer. So, Mia's next step is for them to insert a catheter in her fistula (the opening to the bottom half of her intestines) and inject some dye and x-ray her lower abdomen to see where the intestine actually connected up. There are a couple of choices, the most likely is that it connected to her vagina, however, it could have also connected to her bladder or somewhere else. If it connected to her vagina (this is the best possible case), then it is very likely that she'll be able to control her bowel movements later in life. If it connected to her bladder, then there is a higher chance she won't be able to control them. So please pray that regardless of where it connected, she'll be able to have control of her bowels. The intestinal doctor did say though, that outwardly it looks as though it probably connected to her vagina because of the fact that she has "bum cheeks". That means she was really close to being developed properly. :) After they determine this information, they are going to set up the next surgery which is to create the anal opening. So, when are they going to look with the dye? They are checking to see with radiology for something in the next couple of weeks. We are getting closer!
2 bottles later, we were headed downstairs to the lab for Mia to get blood work done prior to her next surgery (3 weeks from now!). That was probably the most difficult time of the day for me and for Mia. There was a little bit of a wait and by the time we got in there, she was hungry again, so 1 bottle later they were trying to find an artery to use to draw blood...an arterial draw was requested... So several of the lab people came in, but if you remember from the NICU, Mia is a hard one to stick because she clots easily and her veins/arteries are difficult to find. After 3 people tied off both of her arms they decided to send in "Fernando"...he's the one who can draw the blood when no one else can. Anyway...he was able to stick her and get blood (3 viles...which is about 10 cc's...), but she was very angry during the process and when she gets angry, she'll sometimes make herself gag to the point of throwing up, which she did and we made him take the needle out as all of her milk was coming back up. :( The good news is they got enough blood that we didn't have to do it again...thank you God! But not a fun moment for Mia.
1 more bottle later we were headed upstairs to an appointment with one of the NICU doctors for a follow-up visit. They were so excited to see her, the doctor who discharged her stopped by just to see how she looked because she heard she was coming. They were very excited to see how big she had gotten. They brought in an occupational therapist to see how she was doing developmentally. She assessed her and made some notes, but didn't say whether or not she is behind developmentally...at this point it is still a bit early to know because she was born a month early and she had a few surgeries to begin with, which is not typical of newborn babies. They just want to keep track of her progress at this point, there are no major concerns. The NICU doctor then came in and talked to us and looked Mia over. We discussed her medicines and decided she didn't need to be on all of them, so from now on she'll just be getting zantac, iron, and vitamins. And we talked about increasing the calories in the formula she gets to try to bulk her up as much as possible in the next few months prior to more surgeries. Pray that she would tolerate the increased calorie formula.
We also pointed out that there is a bump on the back of Mia's head (a bony bump of some sort) and so they started looking at the sutures in her head (a person's head is made up of different regions, which eventually fuse together, the location they fuse together is called a suture) and thought that one of them looked like it might have prematurely fused. They weren't for sure, so they scheduled us to take her downstairs before we left to have some x-rays done of her head. If they are prematurely fused, then she may have to wear a helmet to shape her skull as it grows. We'll know by tomorrow what the x-rays tell them. We were encouraged that it is something that they can fix with a helmet when it is caught early. It was really cute when I took Mia downstairs to get her x-rays. The first one was her lying on her back looking straight up into a light. She was so mesmerized by the light that she held perfectly still, the x-ray technician was so impressed with that and she thought it really cute.
1 more bottle later we were on our way home (5pm) and I was so not looking forward to the drive, especially at that time for LA. Praise God though, the traffic was not bad for us at all and we were home by 7:30, which included one stop for 1 more bottle.
Now if you were counting that should have been a total of 6 bottles...yes, 6 bottles for Mia, which is about 12 hours of time. We were very thankful to be home. And as I reflect and write this, it was a long day, but a good day. God has taken care of us so well. We are thankful. And thank you as you continue to pray for Mia in her journey, it's not over, but it's getting closer.
One last note, Mia has been eating much better, back to how she was before her shots, so we are hopeful that she'll continue to do so as she gets bigger!
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