Tuesday, February 28, 2012

Then and Now

The babies were 4 months on Sunday! Its so hard to believe. I started this blog at the beginning of the pregnancy as we happily prepared for their arrival, and at the same time, just tried to make it one more day, and one more day again without losing one of them. Then through the long three months in the NICU, with all of Mickey's ups and downs and breathing issues and Jolynne's surgeries, and now they have been home a month. So much happened in such a short period of time. This time last year, Tommy and I were in Napa, sipping wine, and only discussing the possibility of children. We had hopes for one beautiful baby, if we could only just have one, how happy that would make us, how full our lives would be, and now here we are, with three little miracles, having been through hell and back it seems, to end up here. What a wonderful place to be. I have been doing alot of reflecting on this the past few days. How easy it is to forget sometimes, with little sleep and no down time, everything you overcame to get here and how close you came to losing it.

We got a bill in the mail a couple months ago from that doctor that told me I should considering terminating one or more of the babies back in July, and was rushing us off to make some drastic decision for a very high risk laser surgery. This was all based on his diagnosis of twin to twin transfusion syndrome. I remember walking out of his office that day, devastated at the thought we might lose one or two or all three and confused about what the right thing to do was. Do we kill one to save the other two or two to save the one, or do we have the surgery and risk all three? Oy! I prayed hard and those of you that have been following the blog probably remember this time well. We were ready to hop on a plane to Miami the next day for the surgery. It was the scariest time of the pregnancy. Scarier than the C section the day they were born. Well, anyway, my insurance will not cover this bill because they say the ultrasound is coded as experimental/investigational and I should call the doctors office and have them change the code or we will have to pay $1700. Experimental? Investigational? I went there because my regular doctor said they were really worried about the babies, not for some experiment. And at the time, I certainly was not thinking, I wonder if my insurance covers this? All I was thinking about was the health of my babies. So, I have been going back and forth between the doctors office, and the billing office and my insurance company since then trying to get the code changed and the bill paid, but I am getting no where. No one from the doctors office will return my calls so I am calling them every week for answers and going in circles. Finally I think I got somewhere yesterday and the claim is being reprocessed. My point to telling you all this boring insurance/billing stuff is that I was laying awake at night the longer this went on, thinking about that appointment and that ultrasound and how much stress it caused us. Thank goodness after we walked out that day we got a second opinion and decided not to do anything drastic, not to have the surgery, not to terminate, because then one of them probably Jolynne, or even Georgia may not be here. I cant even bare to think of it and now they want me to pay $1700 for being prematurely and incorrectly diagnosed? I just cant justify paying that money. Yes, we did have twin to twin transfusion syndrome but it was not as severe as the doctor said and it certainly did not warrant his recommendations. If it were a bill for the NICU, I would have no problem paying it as they saved their lives but not for this. So, after all this thinking and rehashing of that horrible exprience, I have filed a complaint with the State of Arizona Medical Board. I thought long and hard about this one and went back and forth with it. Part of me just thought, well, its in the past, they are ok now so lets move on, but I just cant bare the thought if this advice is given to some other couple and they do not know enough to get a second opinion and they do kill one of their babies based on his advice. What if? If you are going to recommend to some young couple that they consider terminating one of their babies at 17 weeks pregnant, you better be 99.5% sure that is the best thing to do and obviously in our case it was not as we have three healthy babies with us now. Maybe nothing will come of it. I do not know if he violated any medical practices but I felt like it was the right thing to express my concerns. After coming so close to losing them for no good reason, I can't just sit back and not say anything.

The happy ending is that they are all here and doing very well. We had an appointment with the developmental pediatrician last week. They are all about 2 months along developmentally, which, considering  their adjusted age (if they had been born on Jan. 5) would be 6 weeks at the time, 2 months is pretty good. They even said our little Jo is slightly ahead of her sister and brother. That just goes to show size does not always matter! They are all doing well for different reasons. While Mickey is very strong on his stomach and holding himself up and rolling, Georgia is not. She has not rolled over yet and hates her stomach but is really strong sitting up straight and holding her head up, something Mickey needs work on. They are all starting to smile too. Not really consistently but if we are facebook friends then you have seen the pictures of Mickey. He will grin and grin from ear to ear. The girls are to fast for me and I can never grab the camera in time.

The biggest concern overall is that they say Mickey has a mild case of torticollis. This means his head tilts to the right and if you look at his head from above you can see his ears are slightly lopsided. I am not really sure what to think of this yet. They made it sound like as long as we do the daily exercises and stretches with him, he can be corrected. If it doesn't then it can lead to vision problems and even the brain can grow incorrectly if he is always oriented to the right. They said it was probably from letting him sleep upright in the rock and play or the bouncers but I am having a hard time with that. He has only been home for one month, so would this not be something that started while he was in the NICU. The advice of all other doctors was to keep him upright due to his reflux, so there was a wedge under his mattress and a sling keeping him from sliding down, which they recommend we stop using so we have. But its so hard to know what the right thing to do is. He needs to be upright for his reflux, but that is contributing to his torticollis so he needs to be flat as much as possible they say. Its always changing. I hope we can get it corrected though. Poor guy. I don't want him to have to go through anything else and if the exercises don't fix it, that means a helmet, physical therapy and possibly surgery if I understand correctly. The problem is Tommy and I both work full time and have three babies so finding the time  (3 times a day) to do these exercises has been challenging so far, but we are doing our best.

Otherwise my 4 month olds are doing good. They are definitly developing little personalties. Mickey is very laid back compared to his sisters. He just hangs out and smiles and chills with mom and dad, no fussing. Georgia is the diva, she can be very demanding. She was also by herself for awhile so it makes sense. We call her our buddha baby because of her belly. Mickey may weigh more but her belly has always been bigger than her siblings. Jolynne is definitly a little more high strung. She seems more anxious than the others and I think it because of what she went through, but she is so smart. She is very perceptive and I think knows more than she gets credit for. One thing about Jolynne, you cant be fooled by her size or the fact she has had two major surgeries before she was even three months old. She is going to surprise us all just as she already has. They are so much more aware and responsive to us now. They are getting to that playful stage and its so dang cute! 24/7 entertainment! I just love the way they look at me and watching them grow. And I am so proud of how strong they have been already just as little babies. They went through twin to twin transfusion syndrome and proved the doctor wrong then after being given a less than 10% chance all three would survive, and survived being born 10 weeks early, and three months in the NICU. I think that says a lot about the people they will become.

Here is smiley...

 And Sleepy....

And Miss smarty pants...

1 comment:

  1. Kara, as I'm sure you know, all 3 of our boys wear helmets due to torticollis & plagiocephaly. Our boys also had reflux. We were never told it was from sleeping up right or from being in their bouncers. I'm not saying it's wrong or right, it's just not something we were ever told. It was explained to me by the specialist & our pediatrician that it's common among multiples due to limited space & placement in the uterus & it's also very common when babies spend any length of time in the NICU. I'm just telling you so you don't beat yourself up over what the right thing to do is. Make Mickey happy & comfortable. The helmet is also not the worst thing in the world. Now that my boys are mobile I'm quite happy they have helmets to wear, they are constantly banging their heads, lol... We also struggled with the exercises, I did them during diaper changes, it was really the only time I could remember to do it & wasn't trying to do 100 other things. Our boys was too severe though & the exercises didn't help enough.
    I don't blame you for filing a complaint, I would have too. I think there are too many doctors making suggestions based on their personal opinion & unfortunately a lot of them discourage multiple pregnancies. We were encouraged to reduce at our initial ultrasound & there wasn't even anything wrong with any of them. I'm so happy you knew to get another opinion & were given better advice.
    Your little ones will leave an impression on this world for sure!!! You and Tommy are doing fantastic!!!