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...

Thursday, February 9, 2012

Organized Chaos

Its been awhile since my last update, but I suppose I have a good excuse. Every extra minute I get, I am trying to get a few more minutes of sleep or even just take a few minutes to breathe. Life got crazy, real quick when the babies all came home. As Tommy says, it is organized chaos! The first week was very scary for me, I think it was hard for both Tommy and I but I tend to worry more than he does so I was scared the whole time the babies were going to have to go back to the hospital or that maybe they weren't ready, even though I know deep down the doctors and nurses there would not have let them go if they were not ready. The reason it was tough was that we were going through what most parents go through in their babies first few weeks of life, trying to get them on the same schedule, waking every two hours or less to feed them and change their diapers and figure out why they were crying. Although they are 3 months old, they act like newborns and developmentally they are newborns right now, as they were not suppose to be born until January 5th. It would not be so hard maybe if they all slept at the same and cried at the same time, but they don't, they like to take turns, which will be awesome later in life, but not so much right now. When we finally get one to settle down, somebody else starts. I will say Mickey is much more mellow than the girls, as long as he is being held he will settle right down and fall asleep, with the girls sometimes it seems like nothing will make them happy. On top of that I could tell Jolynne was not gaining any weight, and even though I had no way to prove it, every day I wondered why she wasn't getting bigger. Sure enough, a week after she left the hospital at her first doctor appointment, she had only gained 40 grams or 1 ounce....in one week! That was not good and I didn't understand, I still don't really know why, because we were doing everything exactly like we did in the hospital. On top of that Mickey was not eating very much food, and when he was he was spitting it all up, so it took us almost an hour just to feed him, he is a slow eater to begin with, then he would spit up everything, then we change clothes (his and ours), clean the couch again and start with bottle number 2! I was so afraid he was not getting enough and that he would become dehydrated.

I am happy to say that the second week went much better than the first. Mickey started to eat more and spit up less, we are down to maybe once a day now which is pretty good, and he eats almost all his food pretty consistently. As of today he weighs 11 pounds, so he is gaining weight just as he should, I think he has adjusted well to being at home. Jolynne has also started gaining weight. After that first appointment we got permission to increase her calories and that seems to have helped. We have to get the doctors ok to change anything with her food because her belly is so sensitive to everything and if we push to hard she will start losing all the nutrients in everything she eats, but our girl weighed 8 pounds today and I am very happy with that. I will spare you the details on all her poop and what it is supposed to look like, I will just say it is still not what it is supposed to be but we are working on it and at least she is gaining some weight now. Georgia is pretty predictable, she cries for food and that's about it. She weighs 9 pounds, 12 ounces now. She is the one who consistently wakes us up at the night while the other two could probably sleep a little longer and her cry is the loudest of all three. But she smiled for the first time on February 1st and my heart melted. Her and Jolynne are really starting to be more reactive to Tommy and I when we make faces or funny noises at them. I think they like us : ).

While the girls go through their fussy period between 8pm and 2am, Mickey starts his around 6 or 7am, so that's been interesting. But as long as you hold him, he is ok, so when he is awake, you will usually find him attached to either myself or Tommy or the nanny, Erin, who seems to be doing pretty well for someone with no experience with multiples. There are still some things we are working on with her but with each day I think she gets better and better with the multitasking and she is good with the babies.

Overall I think the babies are doing good, we have anywhere from 3-5 doctor appointments a week between the three of them and that is hard, but good they are being followed so closely and I will take that over going back to the hospital any day. Tommy and I are exhausted. Some days we get 4-5 hours of sleep at night and sometimes, it is more like 2-3, but it is such a great feeling to have our whole family together and start to really develop these relationships with the babies and watch them grow from or our own home rather than sitting in a hospital room.

NICU for 3 months, I am always in that mind set. I know what the flip side to everything is, after all that time in the NICU, I understand the consequences of a lot more than I would like to. Those that know me, know, I am a little more on the serious side, and I over analyze everything. Yes, I like to have fun too, but its harder for me these days. Which is one of the reasons Tommy is so good for me, we definitely balance each other out. That being said all that over analyzation is magnified now. I worry about every little thing since they have been home, what their poop looks like, is it enough, is it too much, why they spit up, how they spit up, and how often, why they are crying, every twitch, every eye roll, everything I wonder the reason behind it in fear there is something wrong and they will have to go back to the hospital. So, my new years resolution is to try and relax a little and enjoy the babies more. I am so busy worrying and stressing about them all the time, I hardly ever am able to sit back and just enjoy being with them.I realized last night when I laughed the hardest I have in a long time, that I hardly laugh at all. I spend my time at home, on my toes, ready for whatever may be next. So I am going to try and work on that. I have wanted children my whole life and I have waited for three months for them to all be home, I want to enjoy it. I am going to have to learn how to do this without taking up a new hobby, I just don't have time for that.

That does not mean I will stop being overly cautious with them though, they are still fragile preemies, even though they are bigger now, their bodies are super sensitive and hopefully our guests or anyone else they come into contact with understands that if I correct them when they are doing something with the babies or ask them to wash their hands, its just too risky for my babies to not do be careful like that. If they get sick, it could be extremely detrimental to their long term health and affect the rest of their lives so some things I just can't relax about.

Tommy and I had their newborn pictures taken last Saturday. Something else I have been waiting for. I can finally send out announcements (4 months later) We are so excited to see how they turn out. The one we did get to see  they look so peaceful, if only you knew what went on behind the scenes to get them to look like that. It was an exhausting couple hours, but it will be so worth it. Before we had those pictures done, Tommy and I decided to do our own photo shoot on their 3 month birthday. I am posting the pictures below so you can see how much fun everyone had. It is kind of how the session on Saturday went only with a much better ending. I guess we should have just waited for the professionals. LOL. The pictures are good for a laugh. Mickey's progression throughout is the funniest to me. Enjoy!

And a more peaceful moment with Tommy and the girls...