The verdict is in…

We have been waiting for the bill for Sara’s two-week stay in the five star resort of The University of Michigan’s high-risk pregnancy unit. You may have read about her two week visit and thought “I would love to visit and take in all that pampering.” We would suggest you consider spending your money elsewhere. We have received two statements so far for Sara’s stay. The first one was for just over $4,000 and the second was just under $45,000. Not a bad deal for an all-inclusive stay, including as much chocolate cake as Sara could eat and as much juice as she could drink. Fortunately for us, insurance should pick up most of this $49,000. We, at the most, may have to pay $3,400 of it. We are well convinced we could have gone to a much nicer location for that kind of cash.

Kaily is still continuing the slow climb up. She is still puffy; she continues to have about a pound of extra fluid. She continues to need the respirator as she de-sats quite regularly. They are continuing to try and move the fluid off of her and to bring her ventilator settings down. She is getting closer and closer to “room air.” This is something we are really looking forward to. We are worried about how much damage has been done to her lungs. She definitely has “lung disease”, but we really aren’t sure what that means. We may not know what that means for quite a while. The main goal for her now is to get the fluid off and get her off the ventilator. This may take a week or so, but that is the goal. Please pray specifically for her lungs that they would fully recover even more quickly than the doctor’s expect.

Once again we thank you for your concern and interest…

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Ahhh, we love good days!

Kaily seems to be turning the corner on this infection. She has continued to improve over the last couple of days. A break from the stress of high ventilator settings and fluid filled lungs is nice. She has come down some more in weight in the last couple of days, which is good, and her ventilator settings are creeping back down to the more “normal” settings of room air. We are thanking God that infection #1 of her life seems to be heading out. The doctors have told us infections are par for the course here in the NICU, but as she gets stronger she will be able to fight them better. We enjoy the “good days” while we can have them.

Yesterday Sara was able to help a little with Kaily’s bath. She got a sponge bath in her isolete, and the nurse asked if we would like to help. Daddy opted out, but Mommy got in there to help clean some of the crusties behind her ears that were left from birth. We expected Kailyn to de-sat and not handle her bath well, but after it was over, her numbers showed she was doing better than ever. She was breathing a LOT on her own, lots of maize and blue on her ventilator screen, probably because she was mad.

Today marks four weeks that Kailyn has been in our world. She would probably say it’s not all it’s cracked up to be, but she has decided to stay nonetheless. We are so grateful for all those who have been praying for Kailyn. It has been amazing to see the power of God’s people rising up on our family’s behalf. We can truly say that God has given us peace in a time when peace should not exist. Thank you so much for you interest in our adventure here.

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It has nothing to do with Ohio State…

But we don’t like to see any red on the screen of Kaily’s ventilator. We sit and watch loops that illustrate Kaily’s breathing. Half of the loop represents the breath in and the other half represents the breath out. The breath in shows up as either red or yellow, and the exhale is always blue. If the top of the loop is red that means the ventilator is breathing for her. If the upper part of the loop is yellow that means she is breathing by herself. For the last week we have seen nothing but red. She hasn’t been doing any of the work because she has been so sick. They call this “riding the vent”. Today we have seen more yellow than we have for a while. She is still primarily relying on the ventilator for her breathing, but she is beginning to have her ventilator settings lowered some, not a whole lot, but some. We can’t wait until all we see is maize and blue!

Kaily is doing slightly better than she was yesterday. A positive step, however small it may be, is really encouraging. We seem to be turning the corner on the infection. She is still really puffy, and she will be until the infection fully clears, but they expect her to do some good shrinking throughout the week. We should give her some credit here…she did lose some weight over the last 24 hours. She went from 1.82 kg to 1.81 kg. That means she has dropped just below 4 lbs. Keep up the good work, little girl.

Thanks for your prayers and concerns; it means so much! Keep fighting, Kaily, keep fighting!

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It would be nice to know…

It would be nice to know what particular bug Kaily has. It is clear she has an infection and doesn’t feel well at all, but they have tried for days and days to identify which particular infection she has. They try to identify the infection by drawing blood and letting it sit to see if any bacteria grows. If anything were to grow, they would be able to see what type of bacteria it is and then be able to give her an antibiotic to fight that specific bug. This hasn’t been able to happen due to many factors, but the greatest being the antibiotics she is taking can cover it up and not let anything grow. This is good and bad. Good because we know it is killing the bad stuff, but it is also bad because it doesn’t allow us to know how to specifically help her.

Kaily is REALLY puffy. She weighs 4 lbs. today. She should weigh around 2½ lbs. She really looks like she isn’t feeling well. Like they have for almost ten days now, the doctors are trying to figure out how to remove fluid from her. Her lungs are still very “wet.” She will be much easier to ventilate and feel much more comfortable when this fluid can be removed. Pray they can help her with this. Her blood pressure is now back to normal without the help of medication and will allow the doctors to give her more diuretics to help get fluid out.

She is still really sick, but Sunday was the first day in ten days that she didn’t get worse than she had been the day before. She hasn’t started to get any better yet, but it is encouraging to see her not getting any worse.

The plan to help our little girl…They will continue to give her lots of antibiotics. They don’t think they will be able to pin point the infection so it will take a bit longer to see her kick the infection, but she will. Due to her issues, she is going to be on the ventilator for quite awhile. They will attempt to bring her ventilator settings down over the next couple of weeks. We hope they can do this soon. They are also going to try to start her feeding her milk again today.

That is where we are at…She is really sick and we are worried…She is getting great care and God has given us peace…Pray for our little girl!

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She sets a new personal best…

Kaily has set a new personal best in how many pumps she has on the pole connected to her bed…she is up to six!!! If you were wondering, the fewer pumps you have, the better you are feeling. The pumps give Kaily her medicines, and she is not feeling well at ALL, so she has a LOT of medicine helping her right now.

Kaily is still having the same respiratory problems she has been dealing with for over a week now. Her lungs are still “wet”, and she continues to have issues with the oxygen level in her blood going down too low. She has definitely kept her nurses and doctors very busy the last two days.

They really don’t know what is wrong with her, but it is clear that she really isn’t doing too great at the moment. They are starting to think more and more that she has an infection. She gets tested for various infections everyday, and those continue to come back negative for any infection. This would appear to be good news, but she is on four really big antibiotics that can cause those tests to show no infection when there really is one. This seems to proving true as she seems to be getting worse in the last few days.

What does this mean? We aren’t really sure if they will do anything differently than they already are. Like we said, they are giving her some crazy big antibiotics that should do the trick in time. They are basically dealing with the results of the possible infection. They are trying to help her with her low blood pressure with two different drugs and they are trying to help her get rid of the fluid that she still is retaining with diuretics. She has gotten to be puffy and really needs to do some good peeing. They are also playing with the ventilator to help her with all of her respiratory trouble.

To say the least, that last few days have not been too fun. It is not easy watching your child getting worse day after day. We are very grateful that she can be here at the University Hospital as she is getting great care. Pray for Kaily as she fights through this and that she would start to improve SOON. She has a lot of fight for such a small little girl, but she could sure use some more “Jesus help!”

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She better not commit a crime now…

That we have her feet and finger prints. I guess she could commit a crime, but she would want to where shoes and gloves…
They look HUGE here…the camera always adds at least 3 times your body size…

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Stop that!

Seriously now, Kaily, you really need to stop this Desatting and Hi-satting.

Kaily is still really having a tough time in the respiratory department. She must love beeping and flashing lights because hers are going off every two to four minutes. She is really keeping her nurses hopping and confounding her doctors. She probably just wants to get her money’s worth here, but she needs to stop that. The doctors are trying to figure out what is going on and why it is happening. They actually know what is going on. She is bringing air in just fine, but she is not oxygenating her blood correctly. Figuring this out is the quest we are on now.

There are many things that could cause this problem. The two easiest to find are heart problems, meaning she is having problems moving blood around, and the other cause could be infections. These two have both been ruled out now. The Eco Cardiogram she had done on Monday came back with no found heart issues, and she still has had no sign of infection in her blood. These two issues could lead to much bigger problems, so we are glad they aren’t the cause of her breathing issues.

The doctors have done several chest x-rays, and they show fluid in her lungs. They are reducing the amount of fluid they are giving her, and they are also giving her more diuretics to help her get more fluid out,. Now she’s got to pee.

That is where things are at now. She isn’t the “low maintenance” kid anymore, and we can’t wait to give her that title back. Please pray that the doctors can figure out what is going on for sure and that we can help her feel better.

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More questions than answers…

We have been waiting for answers on the possibility of Kaily having an infection. They check to see if anything bad is growing in the cultures that have been taken over the last week, and we are thankful that nothing has shown up as an infection. They will finish the 10 days of antibiotics just in case.

Today has brought more questions, and we have no answers yet. The main question has to do with the fact that Kaily continues to have “de-sats.” This is when her blood oxygen levels go up and down to extremes. They have done more chest x-rays to see if the ventilator tube is the in the right place or not. These x-rays have shown that there is fluid in her lungs. They are not yet sure why this is happening. Also, the docs have heard a murmur in her heart for sometime, and they decided to take a another look at this with an ultrasound. The possible explanations are that there is a valve near her heart that would need to be fixed. This would be done with a “simple” procedure. Kaily would probably say, “It is simple if you’re not having it done to you.” Another possibility would be an infection. They don’t think this is really the cause as all of her cultures have come back negative. The third possibility is that she isn’t peeing enough. They are walking a thin line of wanting to give her fluids to help her gain strength, but they don’t want to give so much it fills her lungs. If the heart ultrasound doesn’t show anything, they will give her diuretics to help her get rid of the extra fluids. We won’t know anything until later today.

As you can see dull moments aren’t in excess here in the NICU. We have grown to love and look forward to the boring days.

Pray for Kaily…she is still on the ventilator. Her oxygen levels are higher than room air, we like them lower. Getting this lung fluid figured out will help her a lot in this area.

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“I’m so tired”

Kaily was able to tough out two whole days on the c pap. This was two whole days of breathing on her own. For a little girl, that is quite the workout. Yesterday, late afternoon, she decided she had had enough of this breathing on her own dealio and made a request to be put back on the ventilator. This request, as it always has been, was done in dramatic fashion. This is how it goes…in her words…

“I can’t talk yet, so to get everyone’s attention I have to have lights flash and alarms sound. First, I slow down my breathing to a nice turtle type pace. This will make the oxygen level in my blood go down, and this causes a light to flash red and an alarm to beep loudly. Then I like to start picking up my breathing a bit, which cause that oxygen level to rise, and the light show stops. This is great fun. Heads turn towards my bed, and people watch to see what I will do next. I repeat this process for a while confounding nurses and doctors all around. Such sport! If you think that is cool, you she see what I do next. I will do everyone’s favorite game of just plain stopping breathing. This is awesome. The alarm changes tone to a alarm/honk that is really loud, and everyone comes over to my bed right away. I usually try to turn a yellowish/pale tone, and they have to use this bag thingy to get me to breathe again. I do love that personal touch. Once I do this a few times close together, they put me back on the ventilator and I am able to clock out and not have to breathe as much on my own. And that’s how I get out of breathing totally on my own. Once I am put back on the ventilator I usually will still show my breathing skills and over achieve by breathing over the vent. I just want to them to know who is in charge here.”

There ya have it…that’s what she did and why she is on the ventilator again. She will probably stay on it for a few days again. They are starting to feed her again, but they have to start at the crazy tiny amount of food again. It will help her get stronger none the less. The last thing to update you on is that Kaily finally got her pic line yesterday!! She waited a week, but it is now in place. This line will allow her to get larger amounts of sugars and such that will help her grow and get stronger.

Thanks for your interest and concern!

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Hey, I’m uncomfortable over here!

That was Kailyn’s message all day yesterday. She had respiratory issues for about 24 hours or more. She was restless, and they couldn’t figure out why. These respiratory issues were the reasons the doctors decided to test for a possible infection. They took a bunch of blood yesterday and started to see if infection was present. The results of these won’t be known until Friday morning. They also took a chest x-ray to look for possible pneumonia. Like we said yesterday they also started her on antibiotics that will run for seven days to fight any possible infection.

We asked all day long to see if they had taken a look at those chest films. They told us they would take a quick look soon after they were taken at 11am. In reality, they hadn’t had the chance to look at them all day long. Kaily was having increasing breathing problems as the day went on. Her oxygen percentages crept up slowly as time went on from the high twenties to well over fifty percent. Around 4:30pm she was going nuts, and they were having a hard time getting air into her. She wasn’t breathing, and the ventilator wasn’t working well. We were by her bed as all this went on by the way…good times. They called in the doctors, not her normal team of docs, and we asked again about the chest films. They took a quick look and realized that her ventilator tube was too high and that was, more than likely, the cause of all her distress for the previous 12 to 18 hours. They moved it, took more films, it looked good, and she was feeling great. If they had only looked at those films at 11:30am.

Basically since then Kaily has been doing much better. They had decided in all of that commotion to change her vent tube to a bigger size as her tube had been “leaking” for a while now. Once they took it out she decided to breathe on her own for a while, so they put on the c-pap thing that helps her breathe, but most of it is really on her own. This is not as much help as the ventilator for her, so it is better for her in the long run. They didn’t expect her to stay off the ventilator for too long, but thought they would give her a chance to exercise her lungs a bit. We totally expected to come in this morning and find her back on the ventilator, but as of now she is still on the c pap. This could last for a long time, or she could get tired and have to go back to the ventilator. Regardless, she is a MUCH happier girl today!

There still have been no real signs of infection, which is great. Were hoping not to become those parents who drive the doctors nuts, but if the girl goes nuts again that’s what they might get. Nothing but fun here in the NICU, nothing but fun!

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