Sunday, February 3, 2013

The Long Road

Well it has been awhile since I have written anything about Karis. What has been going on in the past three months you ask? Everything baby :) In a quick run down- November/December
we finally made it home after 4 very long months in the NICU, also Mimi (my Mom) came to visit again for 3 weeks :) there were many, many snuggles and lots of kisses and hugs. I am not sure Karis was ever put down during the time my Mom was here! Right as my Mom left Clifford's work picked up and he was working a ton until the day after Christmas. This ment I was on my own with no help even from Clifford. It was very exhausting to function on such little sleep, but I made it! Then we had a glorious winter vacation where we stayed at home and figured out the new "us"! So January was the start of real life, no mom, no hubby and no vacation. Since we need to be careful about what germs Karis is exposed to means I have had to limit what we do, but I am trying to find a balance with this. Many families in our situation lock themselves away all winter until the germfest has passed. While I haven't completely done that I do try to be careful. We still haven't taken Karis to church yet, I guess it seems like so many people in such a small area, and in some ways I feel less in control with my lack of Japanese. With our American friends I can be very direct and ask if they or anyone in their family has been sick in the past week, but it seems like a challenge to me at our Japanese church. I so desperately want to bring her, as they have been so gracious and helpful to us, I guess when the time is right I will feel ok about it.

Over the past three months, I have also been reflecting about all that has happened and how I have been changed forever. Sadly, the excitement and wonder of pregnancy, child birth and even now care of Karis have been tainted. Now, when I have friends who are pregnant I am ALWAYS worried for them. Even if I don't say it and seem normal about pregnancy, that isn't how I truly feel or think. Someone said to me recently-Wow you really are doing great not being too extreme and over protective with Karis. You seem to be taking it in stride. Well it may seem that way but somedays I go absolutely CRAZY in my head and heart about her getting sick- Flu, RSV, and now some other things I will get to later. Honestly everyday and I mean EVERDAY I have at least one or more thoughts about her dying. For me, it is like the big elephant in the room, something I don't talk much about but it is there. Always wondering is today the day something will happen. It seems to happen a lot at night and when I am driving alone with her. I guess since I am not focusing on her at those times. I think some of it is Post traumatic stress from having so many things go wrong and Judah's death. To those of you who pray for us- Please pray for me that I will continue to rely on praying, it is a daily sometimes more recently hourly thing for me. Also we are wanting to come to America for a visit. The plan was to come at the end of March, but now I am concerned about plane germs and flu or RSV so I just don't know!

Now for a Karis update-
Well first of all she is just the sweetest little baby around and her Papa and I are just over the moon about her.
* She has been gaining weight ever so slowly. She is finally getting close to 9 pounds at 6 months/3 adjusted! She is my little bitty pumpkin pie<3 .She smiles up a storm and is even starting to giggle just a little. Also, she will coo if it is quiet and especially at some of her favorite toys.
*Also, in the past week she has started to swat and try (just a little) to hold stuff.
*The only developmental task for her adjusted age she is having trouble with is lifting her head/pushing up on her arms while doing tummy time. I am really not terribly concerned about this and am certain that she will get there in time!!!

So, in the past few weeks I had been noticing an increase of spitting up (not a ton) after EVERY bottle and coughing during bottles, coughing just randomly and even having times of extreme pain. Now, if you could spend any amount of time with Karis she is just a really happy baby( I am a thankful mama) Since she came home her bed has always been elevated at an angle since it was that way in the NICU. I had read about preemies having an increase chance for reflux/GERD. Then, last week i was feeding her and she started choking, while she didn't turn blue, but it scared me enough that I almost took her to the hospital. It took her about 5-10 min to start breathing again normally. I thought she may have aspirated some milk into her lungs. She seemed fine by the time we talked with her doctor. After researching a bit, I found that it seemed like she may have Silent Reflux. I actually thought this for a long time but her symptoms weren't enough at the time. So we decided to do a 24 hour PH study of what the acid was doing in her stomach, and if it was going up into her esophagus. When they test for this, a baby that has acid in their esophagus for 4% of the time is considered to have reflux. Well what they found was Karis had it 60% of the time and most of that being while she sleeps. On top of that her coughing/choking is very worrisome to her doctors. They are afraid she will choke in her sleep and die, that is basically what the doctor told me, very plainly I must say. If he was trying to scare me-well done! Now you can understand why I have been having such a hard time recently. When I went into the meeting, what I was prepared for was- yep, she has reflux and these meds should help. What I got was- yes she has EXTREME reflux and needs either surgery or an NG tube(feeding tube that goes through her nose) the doctors don't believe the meds will fix her problem. They said 90% do out grow reflux and 10% of children with reflux do not outgrow it. They believe she will be in the 10%. One of the doctors told us later he had never seen a baby with 60% reflux. So, this is where we are at, having to decide what to be honest I don't really like any of the options they are giving us. We are having another meeting with them on Wednesday, and Clifford will be there along with our regular interpreter so I am hoping to get more information then. In the last meeting I was alone and with an interpreter that doesn't usually do doctors meeting, so while she did her best, there was A LOT of talking that was not givin to me word for word. We have been doing research and still just don't know...So my praying friends please pray for wisdom as we decide what is best for Karis. All I can say is being a parent is HARD. Alright enough with all the "talk" here are some pictures of this sweetie!

I Love my Papa!

Such a sweet face.

Sweet tutu girl!

I have a lot to say.