Gavin and Jace dressed up for Halloween

Kai after having surgery to put a G-tube in

Kai in his little pumpkin hat

Kai's surgery went good!

Kai's surgery went good! He also got circumsized at the same time. We had decided to have him baptized right before surgery just in case things didn't go well. We will then have an affrimation at our church. They ended up having to take Kai's harness off to do the surgery and had talked to the orthopedic doctor. He told them to just keep his harness off and it sounds like Kai will need to have surgery on his hips. The orthopedic doctor is suppose to see Kai in the next few days. Since we were up at the hospital with Kai, we missed out on taking the boys trick or treating. Luckily Levi's parents were able to take Gavin and Jace out, so they didn't miss out on trick or treating. Well tomorrow we will be hanging out at home and getting things ready for Kai to come home. We are hoping that he will be able to come home on Tuesday.

Kai has a surgery date

Kai will be having surgery Friday afternoon to have the G-tube (gastrostomy) put in. We are praying that everything goes well. He should be able to come home 3-4 days after surgery. We will have to learn how to feed him with this tube. Today he is having an ultrasound done on his hips to see how they are doing. The orthopedic doctor is suppose to see him sometime today as well. He will determine what the plan is for the harness that Kai has been in. Kai is also suppose to be looked at by the pain team. He has been experiencing pain with having this harness on. Otherwise we have been just keeping busy with Gavin and Jace and driving up to see Kai. Since Levi and I will be there for Kai's surgery tomorrow, we will be missing out on taking Gavin and Jace trick or treating. But they won't miss out, Grandma and Grandpa will be taking them. Until the next post!

Things are finally starting to move along. They have officially decided to do the G-tube (gastrostomy) with Kai. They have not given us a surgery date yet, but they said it would either be at the end of this week or early next week. Then he has to stay 3 to 4 days after. So Kai should be able to come home sometime next week. There is a lot that we are going to have to learn in order to take care of Kai. He has been having fussy moments between cares. The nurses think that he is experiencing pain. So the pain team is suppose to have a look at him sometime here. I am now back in St. Peter and am just going to drive back and forth. Until the next update.

Kai is no longer in intensive care

Last night they moved Kai out of intensive care to their next step down nursery (the ICC). I was in St. Peter Sunday night so I have not seen him since they moved him to the ICC. He has been having some fussy spells. The nurses think that he is some pain. Today they are suppose to have a pain specialist look at him. Hopefully I find out a little more information about the plans for Kai today. I had to post this picture of Kai because they had him in such a cute outfit. He looks a little bigger than what he really is because of his harness. Well...until the next post!

Great Grandma Roxie and Kai

Kai with his wrist splints on

There hasn't been a whole of changes since the last blog. They are running some more tests. Kai had a MRI done on Friday, but we haven't heard anything on that. They will be taking some more blood from him on Monday to run some additional tests on top of ones that they are already doing. He has had a little progress with the bottle, but not a lot. It is going to take him a long time to grasp onto bottle feeding. It really sounds like he is going to have to have the

G-tube put in. We should know a little more on that at the beginning of this next week. He is getting his hips looked at again on Thursday. So there is a chance that he could possibly go home at the end of next week. I hope it is soon!

For those who are leaving comments...please email me (selly2517@msn.com) your email address (if I don't already have it) so that I can send you a comment back....Thanks!

Thanks everyone for all your support, prayers, contributions and kindness!

We got some good news!

We received some good news today. Kai does not have Menkes disease or occipital horn syndrome. This is such a relief! Now we are back to square one...what does Kai have??? They are working on trying to figure this out. Whatever the case is...it is rare. They know that there is something wrong because of his loose skin and his joint issues. Tomorrow they are doing a MRI and x-rays on his arms and legs. This will give them a better look at Kai.

Yesterday Kai had a swallowing evaluation done. The good news is that when he swallows the formula, it goes down the right way. He does good for the first handful of swallows and then after that it becomes really hard for him. It gets to be a lot of work to feed from a bottle. This is something that they will be working with him on for the next handful of days. They will re-evaluate early next week and then go from there. If the bottle feeding does not go well, they may have to do tube feeding through the stomach. Also yesterday they put the harness on Kai to help his hips. I believe the plan is for him to have this harness on for about 3 weeks and then they will look at his hips and see how they are doing. This harness is on him 24/7. He seems to be uncomfortable with it on and I think he may be in a little pain from it. I think he will feel better about it once he gets use to it. Today they put splints on his wrists. They are having them on for 1 hour and then off for 2 hours and again same thing. He doesn't really seem to enjoy them either. It is really hard to not be able to comfort him. I'm not sure exactly when, but they are talking about moving him out of intensive care and moving him to the infant care center ( which is a high level of care, but not as high as intensive care). So Kai just needs to get this feeding down and then he will be able to come home. We are so anxious for the day that Kai gets to come home. I suspect that he will still be in the hospital through next week. Well, until the next update!

Grandma and Kai

Kai in his harness

Today I got to spend a lot of time with Kai. I just cherish every moment with him. He had kind of a busy day. He had some blood drawn for the copper level tests. He had an ultrasound done on his bladder and that came back looking normal. The occupational therapist worked with bottle feeding him today. At first he was doing good, until the formula sat in the back of his throat and he wasn't quite sure what he was suppose to do with it. He had a real difficult time with it and had to work really hard to eat. They only did this for about half of his feeding and then did the rest of his feeding through the tube. They are doing a swallowing evaluation on him tomorrow morning. Depending on what they find will determine what they are doing next with his feedings. This evening Levi joined us (he had to go back to work today). Levi and Kai snoozed again in the recliner. They seem to really enjoy doing that together. This evening the orthopedic doctor came and looked at Kai. He wants to try this little harness thing on him for his hips. This may help put his hips back into place, which we are really hoping that it does. They are probably also going to be doing x-rays on his wrists again to get a better look at his bones. It sounds like they are going to do some splints on his wrists also. So it was a busy day for Kai.

Tomorrow I am heading back to St. Peter after I visit Kai in the morning. I will be staying down there until mid-day Wednesday. I really miss Gavin and Jace. It is hard to be away from my family. I wish I could be in both places all the time. Hopefully we will be able to bring Kai home soon. It doesn't sound like it is going to be this week :( Although it is going to be very challenging when Kai does come home, I am very anxious for that day to come. We will have to learn how to take care of him and make sure that we meet all of his needs.

Gavin and Jace have had a lot going on in their little lives. Gavin is going to the eye doctor on Thursday. He didn't pass his vision test when he had his Early Childhood Screening. He has also been squinting (sp?) and complaining that he can't see certain things. So I guess we will see how that shakes out. Next week we meet with Jace's teacher and the speech therapist. We should find out what the game plan is going to be with Jace. The boys are sure keeping us on our toes!;)

Well, this all for today.

We still don't know what is wrong with Kai, but whatever it is, it is rare. It could be awhile before we know anything. They are taking some blood from him tomorrow to send off for some tests. They are looking at his copper levels and then testing for Menkes disease or Occipital Horn Syndrome. Levi did some research on connective tissue disorders and came across Larsens Syndrome. Kai has a lot of characteristics of this Larsens Syndrome. This would be a question that we would have to ask his doctor.

Every day Kai seems to be doing better and is looking better. This weekend we held him a lot. Levi and him snoozed together in a recliner a few times. It was really nice to be able to do that. I have also been taking part in his diaper changes. The first one that I did, I was so scared to do it. I have never been so scared to change a diaper before. Now I feel comfortable doing it. It is definitely different than changing a regular diaper. He has been breathing good so that is checked off the list of things that he has to accomplish in order to come home. He has been doing good with holding his body temp. Tonight they are starting to wrap him in blankets and turn off the warmer. So this is a step closer to checking this off the list. We will see how well he can maintain his body temp on his own. Tomorrow they are going to re-evaluate his feeding and possible try to nipple feed him. Hopefully he will do well it. Once he can do well enough with bottle feeding then he should be able to come home. We are hoping by the end of this week, but we will have to see how well he does. It has been so nice to sit and cuddle with him. Hopefully soon we will be able to do that with him in our own home.

Thanks again for everyone's support, prayers and thoughts,

Kai's first day in clothes

Our Precious Kai!

It was a pretty busy day yesterday. Thursday night they started tube feeding Kai. They tried to do the bottle, but he wasn't able to figure that out. They keep increasing the amount of formula that they are giving him. The occupational therapist has developed an oral motor program for Kai. This is to help him prepare for safe oral feeding. He also gets nutrients through an IV and they keep decreasing that amount. When I called last night to check on him, his nurse said that they removed the IV to see how he would do with just getting the formula intake. So hopefully he is doing fine without the IV. There was some talk about them possibly doing a swallowing evaluation on him. This is one of the things that Kai has to be able to do in order to come home. We are still waiting for the orthopedic doctor and the eye doctor to look at him. So hopefully they will look at him within the next handful of days. We met with the genetics doctor yesterday. They are going to draw some blood from Kai on Monday and send out for some certain tests ( I have a hard time remembering what everything is and the specifics). But I believe this is to look at his cooper levels and then also look at this specific gene. There are a couple of possible disease/disorders that they are looking at and so this test should let us know either way. I believe it may take a couple of weeks to get these results. Whatever Kai has, it is very rare. So that's about all that we have learned right now. It seems like such a slow process, especially when we want answers now. I know that we have to be patient, but it is so hard.

Kai looks better everyday. His skin has more color to it and he seems to be less wrinkly. Yesterday, I got to change his diaper for the first time. I have never been so scared to change a diaper. He just seems so fragile. It is so hard not being able to do all the normal things you do with your baby right after birth. I was able to hold him again yesterday and I didn't want to let go.

We are staying at the Ronald McDonald House in Minneapolis so that we can be near him. We are basically taking things day by day. As much as we want the boys to be up here, it is really hard to have them up here. So the boys are going back down to St. Peter. They are both having a hard time with everything. I feel so bad, they need us and so does Kai. Hopefully we will be able to bring Kai home soon. There are certain things that Kai must accomplish before he can be released; the feeding that I had mentioned earlier, maintain his own body temp and breathing correctly on his own (which I believe he is doing just fine with).

Levi is going back to work next week (unfortunately) and I will probably stay up here. This is really hard on all of us and I know we are going to get through this. Thanks everyone for all the love, support and prayers!

Our first family picture of all of us!

This was the first time that Gavin and Jace got to see their brother Kai. They only got to see him for just a few minutes. It was really hard to have them in there...the boys got a little antsy. We wanted Gavin and Jace to see Kai at least once and get a few pictures.

A little update on Kai

I am getting discharged this morning. Kai will probably be at the Children's Hospital for a couple of weeks. It is too early to determine exactly when he gets to come home. We have to take things with him day by day. It is going to be really tough having him up here and living so far away. But at least we know that he is in good hands.

At this point we still have a lot of unknown questions and it may be awhile before we get answers to these questions. As of right now they have evaluated Kai in many different ways. They have a handful of doctors look at him and have run many tests. At this point they are looking at that he may have some kind of Connective Tissue Disorder. From my understanding there are many different types and they need to narrow it down so that we know what is best for Kai. This would be why Kai has such loose skin and joint issues. He has the "old wrinkly man" look. His hips are dislocated. They have him on a special kind of cushion thing to keep him comfortable. I believe that an orthopedic doctor is going to look at his hips today. Because his chin is kind of small they think that his tongue gets in his way of breathing, but he is able to get back on track with his breathing on his own. Because of this they are holding off on feeding him. So he is getting nutrients through an IV. Today an eye doctor is going to look at his eyes also. They are looking for some specific things, but of course, I can't remember those exact things. On his one foot he has the middle 2 two that are webbed together at the first joint and the last two toes are webbed together at both joints. Yesterday he had an X-Ray done (that is how they discovered the dislocated hips) and ultrasounds. The ultrasounds looked good. He had his brain looked at also and I believe that they said that the structure of his brain looked good. It is so much to take in and a lot to understand. Each day we should learn a little. Today they are doing some cooper test on him. They want to start ruling out things. So this is going to be a day by day kind of thing. He has to be doing certain things on his own before he can come home. It is going to be a huge transition when does get to come home. We are also going to have to learn some special things in order to provide him with the care that he needs when does get to come home.

Levi is bringing Gavin and Jace up here so that they can see their baby brother. Gavin was really upset last night because he wanted to see Baby Kai and he didn't understand why Baby Kai wasn't going to come home when I do. We have a tough road ahead of us, but we will get through this. Kai has proven to us how strong he is. He has shown us that he is a fighter and he is determined.

Baby Kai is here!

Kai Landin Selly was born at 10:48 pm on Tuesday, October 14th, 2008 weighing in at 5 lbs and 14 ounces We didn't think he was going to be born yesterday. Things started off slow, but as we went into the night things ended up going really fast! So fast that I was unable to get the epidural...so it was painful! At least it went really fast and he was out in 3 pushes. He wasn't breathing right at first, but was able to start breathing on his own. I got to see and hold him for a few minutes and then he was taken to Children's Hospital. He is doing good over there. They are doing a bunch of test to determine what is wrong with him. It may take a few days before we actually know things. He has a lot of loose skin from the swelling, so he looks like a wrinkly baby. Parts of him look purple from the swelling as well. He has some joint issues as well. At this point we don't know when he will be able to come home. Hopefully we will know a little more later today.

The big day!

Hello to all! So today is the big day! We are scheduled for an induction this morning. We have to be at the hospital at 7:30 and hopefully things will move quickly. We are very eager and excited to meet this little guy (Kai) of ours. Yesterday I had an amniocentesis done to determine if baby's lungs were mature enough for an early delivery. It didn't work the first time, baby got in the way. So they had to do it a second time. Luckily they were able to get enough fluid the second time before baby started to head towards the needle again (he apparently didn't want to be bothered). We did not get the results back until a little after 9 pm last night, which seemed like forever. They came back with baby's lungs being mature enough, so we able to keep our scheduled induction today! Levi and I are very tired. We haven't gotten much sleep in the past so many weeks. There has been so much on our minds with baby...excitement, nervousness, worrying, anticipation..and the list goes on. It seems as we have been getting closer to this day, things keep looking brighter. Yesterday, the doctor had told us that baby (Kai) didn't appear to be as "puffy" as he anticipated. So that's a good thing. Well, we will keep everyone posted. We are praying that everything goes good and we get to bring our baby Kai home in a few days!