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!

Is it time yet???

Well I am now 35 weeks along and ready for this baby to be out. I have been really uncomfortable and wiped out. I had an ultrasound done yesterday done here. They did a Biophysical profile, which the baby scored 8 out 8, so that's good. Baby weighs about 5 lbs 14 oz. The woman that was doing the ultrasound said that she thought she could see hair on the baby's head. Yesterday, I also was hooked up to the monitor and baby wasn't all that active during that time, so they buzzed my stomach a few times to get baby to move around. So far I have gained 34 pounds with this one. This was my last visit with my regular doctor down here until after baby is born. Oh and I haven't started dialating yet :( Next Tuesday we go up to Abbott. I am really hoping that they plan to take me earlier than 39 weeks. I also really hope that they set an induction date. I'm such a planner and would like to get things planned out.

We have been keeping busy with everything and the boys. Jace has been into the naughty 2 year old stage...he can be so naughty at times ;) He is also getting re-evaluated for speech therapy. So we will have to wait and see if he qualifies. He sees the audiologist this Thursday. Gavin started Sunday school a few weeks back and absolutely loves it. He also started ECFE last night and loved it. He gets so excited about going to "school". We think it is great for him. It nice to get him in a different environment and around different kids. We have decided not to do ECFE with Jace this Fall/Winter. He doesn't do well with separating, so I think it would actually be a little hard on him.

Bowling started late August. I have decided not to bowl this year, but to just be a sub. I miss hanging out with the bowling girls, but I just can't add to my already full plate.

Levi has been working a lot as usual. We haven't been able to spend a lot of time together lately. He has been absolutely wonderful and have been taking the boys off of my hands in the evenings so that I can rest and have a break.

Well, I will write again after my appointment up at Abbott.

Belly Pics at 34 weeks

Baby Update 9-4-08 at 32 weeks

Hello to all! We had our appointments up at Abbott today. We did not learn much of anything new about baby. Baby is growing right on target (weighing almost 4 lbs) with the exception of the arms. The arms are measuring a little smaller, but it doesn't seem to be a huge concern. The swelling on baby's stomach has pretty much stayed the same in proportion to baby's growth. They hooked me up to the fetal monitor for about an hour today and everything on there looked good. We don't see the same doctor every time we go up there, but this doctor said that they will probably be doing an induction at 39 weeks. It is too early to schedule that now. At this point it sounds like there is no reason to have a C-section done. We met with a neonatologist at the Children's Hospital today also. Of course, he didn't really have any answers for us either. We need to wait to see baby when he arrives. This doctor is feeling pretty optimistic about everything. He doesn't seem as concerned about baby having any major issues. With baby measuring up to where he should be, lungs and heart look good and baby being very active, things seem to be looking up for baby. Of course we really won't know anything more until after baby is born. So now we have a little bit of a game plan. The doctor requested that I be done with daycare at the end of my 37th week. At this point, I would be induced at 39 weeks up at Abbott. There would be a neonatologist there at the time of delivery to look baby over. At that time, it would be decided where baby would go. So depending on baby, baby may just stay at the nursery at Abbott or baby may go over to Children's Hospital. So once again, we play the waiting game. Today, I am 32 weeks and 2 days. Our next appointment up at Abbott is September 30th. Things just seem more promising and more positive. Thanks everyone for your support and prayers! Until the next baby update!

Belly pics at 30 weeks

Jace thinks it is fun to push on my belly button (or turkey timer as my friend, Angie calls it).

It's been a few weeks since I have posted

Well, it's been a few weeks since I have posted, so I better post an update. We took the boys to the Nicollet County Fair. I wasn't all that impressed with the fair. The boys got to see all the animals and go on a few rides. Gavin did get scare on the little kiddie roller coaster. It did go a little too fast and bumpy. They had fun. A couple of weeks ago I took the boys up to Como Zoo. Gavin was so anxious to see Giraffes, so that was the main goal. It was a bit of a challenge taking them myself, but it worked out fine. The boys were very good when we were there. We are planning to go back up there on Labor Day so that Levi can go with us and we can do more up there. On our way home, the boys and I stopped in and visited my great grandma. It was nice to see her as I only see her every few months or so. Last Saturday was my sister, Tina's baby shower up north. She is due two weeks after me. Her shower turned out wonderful. Gavin and Jace got to play with their cousins as well. I did get to stop in and visit my friend, Melissa, who I haven't seen in a long time. It was great to see her and her family.

We had recently found out that Levi's sister is pregnant also! Very exciting news, she is due at the end of March. Another March baby for Levi's side of the family.

The boys are doing good. Gavin is pretty close to being completely potty trained. He does pretty well with a few accidents here and there. Jace is starting to learn how to count and learning his colors. He is learning more words, but still not up to where he is suppose to be. He is suppose to go to the audiologist next month for another hearing test. He is also suppose to be re-evaluated for speech therapy next month. We are hoping that he qualifies this time.

I'm now 30 1/2 weeks pregnant, but feel like I am farther along. I had more regular doctor's appointment yesterday. I'm right on track with everything. They are going to have my alternate appointments between Mankato and Abbott. So are next visit is up at Abbott on Sept 3. We are very anxious for that appointment. We meet up with the neonatologist that day as well. I will send out a baby update after that appointment.

Some sad news...we did find Duke (our dog) a new home. It was a little hard to do, but we knew it was for the best. He has too much energy for us and the kids. He was always knocking kids over. He was just getting to be too much and we didn't have time to exercise him. Where he went there were 2 kids, ages 6 & 9, so he will get played with and get some of the energy run off. We don't plan to get another dog.

Well until the next posting.

**Gavin, Levi and Jace at Minneopa State Park

Baby Update at 28 weeks

Hello to all!

Today was our appointment up at Abbott. We still don't know the why, but we will not find anything about the why until after baby is born. The cysts on the brain are now gone--Yeah! What was a cystic hygroma on the back of baby's neck is now just considered swelling. With a hygroma there is a clear fluid and there is no longer that clear fluid, it is just the swelling. The nose bone is short. The swelling around the baby's belly seems to be stable. Baby weighs about 2 lbs and 7 oz. So this is what we know about baby. Now the other things that we found out today. I will be delivering up at Abbott. This makes it easier to take care of baby right after baby is born. Baby then can go to Children's Hospital (which is right next to Abbott) and they will be able to do all the stuff they need to do and run all the test they need to do. Hopefully we will find out more answers at that time. They want me to transfer my care up to Abbott now. It sounds like I will be induced and probably around 38 to 39 weeks (I'm 28 weeks now). This way we can avoid me going into labor. It sounds like it will be likely that I will have a c-section (which I am scared of, but I know that it will be best for baby). So my next appointment up there is September 3rd. We will have another ultrasound, then we have a transfer of care appointment (which I think is like a regular check up appointment) and then we will meet with the neonatal people from Children's Hospital. So that is the latest on baby boy Selly. Until next time. (Oh and for some reason I am having trouble uploading pictures).

It's been a little while since I last posted. I would like to post every week, but it may not always happen. Last Thursday morning we had a wind storm that came through here. We had a little damage. Some of our siding from our house came off, singles from our shed came off, lost the top half of a tree and we lost the trampoline that grandma and grandpa just got for the boys about 2 weeks before hand. Unfortunately, the trampoline blew into our neighbors and did some damage over there. No more trampolines for us! Levi's parent's dock was over turned. The winds were clocked at mid 80's (mph) in the surrounding cities, so I'm not sure exactly what they were here. I had the boys and all the daycare kids in the storm shelter. I was so impressed by how well they did in there. We do our practice drills every month, but this is the first time we actually had to be in there. Great job, kids!

Saturday was mine and Levi's 5 year wedding anniversary. Can't believe it's been 5 years already. It has gone by fast and we have gone through a lot in that time. We spent the day doing yard work. Our yard has been getting neglected. Saturday evening, Levi's parents took the boys for a few hours and we went out to dinner. Sunday...well we were pretty much lazy! Gotta have one of those days every now and then right? We did take the boys to Minneopa State Park and saw the falls. They really enjoyed that. On the way home we stopped in at 7 Mile Creek Park. Then when we got home, we all take a nice long nap. It was great have a lazy day.

Today, I had my appointment at Abbott. I will write more about that in my next blog. As far as everything else...we still keep pretty busy with the boys. Jace is getting into the terrible two's. He gets into a lot of things and is constant about it. We still work with him and his speech. He is learning more words. He should be going back to the audiologist in September and he should be getting re-evaluated for speech therapy in September also. Gavin is getting to be so grown up. He talks up a storm sometimes. He is learning new things every day. He has also been getting for sassy with his mouth (which is not good). He has been doing well with the potty training. He just basically does a pull up at nap time or if we are out and about for a long period of time. Sheldon moved back to Missouri. Unfortunately we have a lot on our plate right now. We will miss having him around. Levi has been keeping busy with his tinkering with 4-wheelers and jet ski's. For those that don't know...he buys old ones, fixes them and resells them. As far as me...I keep busy with everything. I get tired easily, but I guess that is to be expected. I get overwhelmed sometimes with everything...I can't always keep up with all the household stuff.

Anyway, I will post a few pictures and then I will write the baby update blog.

July 22, 2008

Well, I haven't been on here in a really long time. I do more blogging through my myspace, but not everyone is on myspace, so I thought I would start this up again. I have posted about previous blogs and most of you have already read about the updates, but they are on here for those who haven't.

Our boys are growing so much! We have accomplished some potty training with Gavin. He still has accidents every now and then, but he is in underwear pretty much all day long. Then just a a pull up at night. We are very excited about this and of course this will save on some money also. Now if we could Jace potty trained before baby comes, that would be just great! :) Jace just turned 2 last week and still gets into everything.

I have my regular doctor's appointment next week and I am always anxious for those appointments. Then I have my next ultrasound up at Abbott on August 4th and I'm extremely anxious to see how baby is doing.

We are starting to get things ready for baby. I had gotten rid of all the baby clothes, so now I have been rounding up baby clothes again. We just got the crib bedding last week and I just ordered the baby book. We have a lot of the actual baby stuff, so that is good.

Anyway, I will post a few recent pictures also. I will try to keep this more up to date for those who would like to keep updated on the Selly Family :)

Baby Update 7-7-08

Today we had another ultrasound up at Abbott and things look a little better than 4 weeks ago. Baby's hands are no longer clenched...this is good. Baby moved hands and fingers around and even grabbed at it's toes. The cysts on the brain have decreased to almost nothing...this is good. The cystic hygroma on the back of the neck has decreased also...this is definitely good considering this was a huge concern before. This doctor didn't seem that concerned with the baby's nose. He said because that bone is so small, it is really hard to tell. It was hard to tell if the swelling around the belly has decreased or not. The measurement of it is about the same as 4 weeks ago, but baby has got bigger, so it is hard to say. Baby has swelling throughout it's body and at this point, we don't know why. Since there has been so many things ruled out, we just have to keep monitoring baby and wait for baby to arrive to run more tests. I have to go back up to Abbott in 4 weeks (August 4th) for another ultrasound. If this swelling is like this towards the end of the pregnancy, there is a good chance that I would have to deliver up there instead of Mankato. My regular doctor also said that there was a good chance that I would be induced. This way, we would have the delivery more scheduled and controlled, so to speak (during regular business hours and more staff available). So now we play the waiting game again and anxiously wait for the next ultrasound. Overall things are looking better, so this is good. Thanks for everyone's thoughts and prayers! Until the next baby update...

July 3

I had my regular doctor's visit yesterday. I have gained 6 pounds in the last 4 weeks, which is good. Baby's heart beat is nice and strong. Gavin came with me so he got to hear the heart beat also. I am measuring right where I am suppose to be at. It's too early to decide what I will actually need to do at the time of delivery...as far as maybe delivering up at Abbott and a c-section. But it did sound like there is a high chance of inducing me. This way it is more controlled and baby would then be born when more staff is around. She said that she will know more after my ultrasound on Monday. I have another appointment in 4 weeks and then depending on how this ultrasound goes, I may then go to every 2 weeks after that. My doctor also said that I will probably have to go for another ultra sound up at Abbott after this one on Monday. So we are anxious for my ultrasound on Monday. We will hopefully learn more then. I will keep everyone posted. Until next baby update....

Update - June 20th

At the beginning of June we finished our basement. What a nice relief! It is nice to relax a little in the evenings. I moved daycare to the basement. It is nice to have a separate area for daycare. I get to "go home" at the end of the day.

Some of you know what has been going on with my pregnancy, but for those who don't, this is a little update. I went in for my regular ultrasound on June 4th, hoping to find out if baby was a boy or girl. We were unable at that time to find out because baby did not cooperate and was curled up. Unfortunately my ultrasound did not go that well. There were 4 concerns with the baby at that point. I was sent over to see my doctor right away and she scheduled me for an ultrasound up at Abbott. I had my appointment at Abbott Northwestern Hospital on June 9th. Things with the baby aren't going very well. They did an amniocentesis. At this point the baby has swelling around it's tummy, 2 cysts on the brain, cystic hygroma on the back of the neck (this is probably one of the main concerns); all of this I knew at my last appointment. At Abbott, I found out that there is something wrong with the baby's nose, either missing a bone, the bone is shorter or something along that line and they said that the baby's hands were clenced. By all of this information, at this point it is being determined that there are some deformities with baby and baby has some kind of syndrome. At that point, chances of baby surviving were not good and it didn't sound like those chances were going to increase. We also learned that baby is a BOY. Which we were then able to rule out Turner's Syndrome since that is only in girls. We have gotten the results back from the amnio and that came back with no chromosomal disorders. This is good thing, because this rules out a lot of things. This is also a bad thing, because now we are left with the unknown. Before we knew this, there was some focus on baby having Trisomy 18. Which there is no survival chance, but that has now been ruled out. This week I went in for a blood test to rule out CMV and the result came back negative. So we keep ruling things out, but still left with unknown. I am scheduled for another ultrasound up at Abbott on July 7. Hopefully we will learn more at that time. So we just play the waiting game now.

Jace had tubes put in his ears (again) on June 11th. Hopefully this will help with his speech. Levi and I have been trying to work with him and his speech.

The boys are enjoying summer so far. We are trying to do more family things, since we have been so busy with everything since the tornado. This is all for now. I will try to keep this blogging more up to date.