I wanted to get this down so we had as much time to pray for this as possible. In one week Karsie is going to have another EEG test. We need to pray that those tests come back normal. If they do, it means that Karsie's brain has been able to fix itself. If not, it means that it suffered a hit that is probably irreversible. This could be as serious as cerebral palsy or mental retardation caused by her traumatic entry into this world.
The hopeful news is that the first week in a preemie's life, the EEG is a bit unreliable because of the healing it needs to do anyway. Therefore, the neurologist thinks it's possible it was just a bum test. Also, all of her organs are healthy (she's peeing...remember when we were excited about that...this is why) and she is not having seizures. The neurologist said that he is cautiously optomistic that the next test will be a bit better, but we still ask for some serious prayer for this specifically (along with all the other things we have asked you to pray for). We continue to be very appreciative of your faithfulness.
Tuesday, July 21, 2009
Another Prayer Request
Karsie just had her bandages changed. She did great. This means she is getting a bit more stable. Also, Dr. Losasso is very happy with the way things are looking. It was repeated to me again that this was going to be a multiple month process, but her vitals are still looking good. We are having a meeting with our doctors today to go over some specifics of Karsie's progression, but one thing that is a newer development is worth adding the the prayer checklist.
Along with praying for her to do well on the ventilator, her blood pressure, and her brain tests, we need to pray for her bowel as well. It looked slightly discolored today. This could be a number of things, many of which not serious at all, but it is being watched. The surgeon didn't seem to think it was a huge deal immediately, but he definitely is wanting to watch it. He thought maybe the angle at which the siloh was hung needed to be changed. Anyway, something new to add on to the list. Eventually, we hope to start taking things off the list, but we'll probably add more before we start to eliminate.
Along with praying for her to do well on the ventilator, her blood pressure, and her brain tests, we need to pray for her bowel as well. It looked slightly discolored today. This could be a number of things, many of which not serious at all, but it is being watched. The surgeon didn't seem to think it was a huge deal immediately, but he definitely is wanting to watch it. He thought maybe the angle at which the siloh was hung needed to be changed. Anyway, something new to add on to the list. Eventually, we hope to start taking things off the list, but we'll probably add more before we start to eliminate.
Morning Update (7-21)
Last night seemed to be another good night. She does well at night. Her oxygen levels have continued to look excellent to the point that they have weened her down into the 30's. For a reference, she was in the 90-100 range the first night and a little the second day. I may be completely wrong, but I think that's a percentage of her own oxygen intake. In other words she is getting about 70% of her oxygen by herself now that it is in the 30's.
In our blitz of picture posting I realized that there hasn't been a ton of explanation of things that have been happening, so I will try to post all of the significant happenings going on currently.
EEG results - I am still waiting for the results of the abnormal EEG. We cheated yesterday and had another doctor find out what was read and what that means so we didn't have to wait for the results and possibly a doctor that has the personality of a lizard. When they measured her brain it looked like she had periods of high activity followed by periods of lower than normal activity. The doctor we talked to told us that he would have been absolutely shocked if that test came back normal based on her first hour of life. While the possibility still exists she could have very serious brain damage, some signs look good that she may just be showing us that her brain is still in recovery right now. One of those signs is her other organ functions. Remember when I told you a couple of days ago that she peed and we are happy about that? This means her kidneys are functioning. This is important because when there is major blood loss to a person, the body does an amazing job of keeping vital organs happy. The body will start to shut down organs like kidneys and bowels and such to keep the heart and the brain still flowing with blood. Since her kidneys are still functioning, we hope that means her blood loss wasn't significant enough to her brain to begin the shutting down process. However, the actual test means that there is an irregular brain pattern now. They will continue to monitor her activity for a while to see if that continues for a longer period of time. The doctor told us that this initial test is not as important as the tests they will do in the next few weeks. If those start coming back the same way, then there is cause for more concern.
Michelle seems to be getting discharged today. She has done amazingly well and is now starting to do some more walking. We are waiting for the doctor to make the final word.
We are also waiting on the surgeon to see if they will change the bandages around Bob today. Karsie is getting pretty puffy and the initial bandages put on her incision are getting pretty tight. The surgeon wanted to wait for a more stable baby to change them, so we're waiting on that. He came in last night and was probably going to do so, but he must have gotten called in to surgery and hasn't been back.
When we were talking with the doctor about the EEG, he also gave us the full story of Karsie's birth. He was the same doctor that came in and told us that they were able to get Karsie stable. We understand the situation very similar to what actually happened. However, what makes things interesting is that at birth, her stats were good. The assessment that was given right away was good. She turned pink. She cried. Things looked real good except for the ruptured omphalocele, but that wasn't the concerning part. The only thing that was not posted earlier was that her cord ruptured and actually shredded, so the bleeding was coming from there. The good news about this was that at no point was her heart rate low or stopped and there was still some blood flow throughout. This makes us hope that there may not have been as extensive a lack of blood to the brain as initially thought. We'll just have to wait (painfully) and see.
In our blitz of picture posting I realized that there hasn't been a ton of explanation of things that have been happening, so I will try to post all of the significant happenings going on currently.
EEG results - I am still waiting for the results of the abnormal EEG. We cheated yesterday and had another doctor find out what was read and what that means so we didn't have to wait for the results and possibly a doctor that has the personality of a lizard. When they measured her brain it looked like she had periods of high activity followed by periods of lower than normal activity. The doctor we talked to told us that he would have been absolutely shocked if that test came back normal based on her first hour of life. While the possibility still exists she could have very serious brain damage, some signs look good that she may just be showing us that her brain is still in recovery right now. One of those signs is her other organ functions. Remember when I told you a couple of days ago that she peed and we are happy about that? This means her kidneys are functioning. This is important because when there is major blood loss to a person, the body does an amazing job of keeping vital organs happy. The body will start to shut down organs like kidneys and bowels and such to keep the heart and the brain still flowing with blood. Since her kidneys are still functioning, we hope that means her blood loss wasn't significant enough to her brain to begin the shutting down process. However, the actual test means that there is an irregular brain pattern now. They will continue to monitor her activity for a while to see if that continues for a longer period of time. The doctor told us that this initial test is not as important as the tests they will do in the next few weeks. If those start coming back the same way, then there is cause for more concern.
Michelle seems to be getting discharged today. She has done amazingly well and is now starting to do some more walking. We are waiting for the doctor to make the final word.
We are also waiting on the surgeon to see if they will change the bandages around Bob today. Karsie is getting pretty puffy and the initial bandages put on her incision are getting pretty tight. The surgeon wanted to wait for a more stable baby to change them, so we're waiting on that. He came in last night and was probably going to do so, but he must have gotten called in to surgery and hasn't been back.
When we were talking with the doctor about the EEG, he also gave us the full story of Karsie's birth. He was the same doctor that came in and told us that they were able to get Karsie stable. We understand the situation very similar to what actually happened. However, what makes things interesting is that at birth, her stats were good. The assessment that was given right away was good. She turned pink. She cried. Things looked real good except for the ruptured omphalocele, but that wasn't the concerning part. The only thing that was not posted earlier was that her cord ruptured and actually shredded, so the bleeding was coming from there. The good news about this was that at no point was her heart rate low or stopped and there was still some blood flow throughout. This makes us hope that there may not have been as extensive a lack of blood to the brain as initially thought. We'll just have to wait (painfully) and see.
Monday, July 20, 2009
Grandpa Gets in Too
Karsie's blood pressure went down when Grandpa prayed with her. We know who she's going to when she wants something.
Test Results
Two good, one concerning.
They did a brain ultrasound (measuring blood in the brain), an EEG (measures seizures and brainwaves), and an echo cardiogram (heart ultrasound) today. Both of the ultrasounds came back basically normal. There is no bleeding in the brain and her heart looks fairly normal. (I say fairly because the technician said that they didn't see anything abnormal, but the doctor hasn't confirmed it yet...but I trust the techs).
The EEG came back abnormal. Unfortunately that's all the information that was given to me in a sit-down meeting behind closed doors (which was terrifying) and she tried to explain it, but it was basically prefaced by "The neurologist will explain more what his report 'abnormal' meant." So, that's just enough information to have us worry until we talk to the neurologist.
The good news is that they are not seeing Karsie seize at all, so it is very mild if she is, and while the report said abnormal they did not order any immediate medicine for her, so it may be something that will hopefully correct itself in time. This is not the best news obviously, but we can't say we're surprised given she was lacking sufficient blood to her brain her first part of life. So again, if some of you need specific areas to pray for, pray that whatever is happening to her brain or happened to her brain is not going to be long term and will correct itself rather quickly.
They did a brain ultrasound (measuring blood in the brain), an EEG (measures seizures and brainwaves), and an echo cardiogram (heart ultrasound) today. Both of the ultrasounds came back basically normal. There is no bleeding in the brain and her heart looks fairly normal. (I say fairly because the technician said that they didn't see anything abnormal, but the doctor hasn't confirmed it yet...but I trust the techs).
The EEG came back abnormal. Unfortunately that's all the information that was given to me in a sit-down meeting behind closed doors (which was terrifying) and she tried to explain it, but it was basically prefaced by "The neurologist will explain more what his report 'abnormal' meant." So, that's just enough information to have us worry until we talk to the neurologist.
The good news is that they are not seeing Karsie seize at all, so it is very mild if she is, and while the report said abnormal they did not order any immediate medicine for her, so it may be something that will hopefully correct itself in time. This is not the best news obviously, but we can't say we're surprised given she was lacking sufficient blood to her brain her first part of life. So again, if some of you need specific areas to pray for, pray that whatever is happening to her brain or happened to her brain is not going to be long term and will correct itself rather quickly.
Update (7-20)
Things are still going fairly well. Karsie had a busy morning this morning as she had two tests on her brain (to measure her brain...not actually on it), they did a thorough assessment where they touch her and poke her, and she got a little mad, but she is still stable. They are continually weening her off of the ventilator and she is doing some breathing on her own.
One thing that I don't remember if I mentioned was that the day she was delivered her lung collapsed so a chest tube was inserted. They are probably going to remove that today as they have already clamped it off and she is doing fine without it.
She is getting a bit puffy because of her surgery recovery, and so her bandages around Bob are starting to restrict her body a bit, so a little later today the surgeon will probably redress those, which is a pretty delicate situation.
Boring news is good news so far. She is starting to really move since her paralysis medicine has been taken off, and obviously her eyes are starting to open and close a bit. We will update more when we know more.
One thing that I don't remember if I mentioned was that the day she was delivered her lung collapsed so a chest tube was inserted. They are probably going to remove that today as they have already clamped it off and she is doing fine without it.
She is getting a bit puffy because of her surgery recovery, and so her bandages around Bob are starting to restrict her body a bit, so a little later today the surgeon will probably redress those, which is a pretty delicate situation.
Boring news is good news so far. She is starting to really move since her paralysis medicine has been taken off, and obviously her eyes are starting to open and close a bit. We will update more when we know more.
Sunday, July 19, 2009
Surgeon Update
Kevin: I was in the NICU visiting with Karsie and happened to be there when the surgeon was doing rounds. (I am in such awe of what he does and did for Karsie. I firmly believe God used Dr. Losasso to make a miracle just keeping Karsie alive after all of that trauma). He did a quick look over Karsie's organs and vitals and he said that her liver looks "perfect" and her bowels look excellent as well. He said they're doing as good as he would expect. He said that he probably won't do anything until she is a bit more stable. He wants to see that Karsie is off the high intensity ventilator and moved to a more standard ventilator plus her off of medication to regulate her blood pressure. Once those two things are looking good he will try to start working the organs back into the body, starting with the liver, which is the most important to get in at this point.
So, if you're like me and you need some specific things to pray for, in the next few days pray that Karsie's lungs start to strengthen to the point of being able to move to a standard ventilator, and that she starts to regulate her own blood pressure w/o medication.
Karsie Had a Good Night (Graphic Pic Under Text)
Saturday, July 18, 2009
Update
Karsie is still stable. They are currently putting in a central line to get medicine and nourishment much more quickly. I should be getting word about that soon.
Earlier today they did a sonogram on the brain to see if there was any bleeding. Often with premature babies there is a high risk of that, but there was none. Her brain looks normal for now. We will still need to test for other problems, but we're ruling out a lot right away.
Pictures (WARNING...graphic pictures after the warning signs)
I was lucky to see her eyes open because she was just coming out of the medicine that they want her on so she doesn't move too much, but they said I should take a quick picture w/ her eyes open.
The liquid around her eyes is medicine they put there to help them with the low activity they are getting in the NICU.
The siloh is under the towels. This is the first picture I got. They later removed it when I told them I could handle the blood.
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What Happened
Delivery: As far as we can tell the problems happened here. We have not had this explained to us in great detail and officially, but this is how we understand it. Michelle did amazing through the surgery, but there were some abnormalities/complications with the delivery of Karsie. When they were pulling Karsie out her omphalocele sac was stuck to the placenta, so it tore quite a lot and it ruptured the sac which was protecting Karsie's organs. In doing this all of the organs became exposed and suffered severe trauma both on the way out and as they were trying to stabilize her. The liver appears to be the biggest hit organ, which is the most sensitive organ. (A quick word to our friends with omphalocele babies that read this blog, all of the doctors said that this condition is very rare. The placenta, during birth, naturally lets go of everything and if the sac ruptures it almost always happens in utero. Our doctor immediately let us know that it happened and that he had never seen that before. This is not something to be concerned about for your baby. But if you could pray for ours since it did happen to us, we would be forever grateful).
Thank goodness both Reva and I were able to be with Michelle during this process. As soon as Michelle's c-section was complete they moved her into a temporary recovery "room" (with vomiting patients in the "room" next to her). I was told from our perinatologist (the doctor in charge of Michelle and the baby in utero) that things weren't looking good and there were some major complications, but that our neonatologist (the doctor in charge of stabilizing Karsie) would come and talk with us as soon as he could. Reva and I went into the room and tried to gently tell that to Michelle and a short time afterward our neonatologist came in and explained the situation.
He said that there was so much trauma to Karsie that he was doubtful she was going to make it. He explained some of the things I have said already, but told us that she was bleeding so much that they could not stop it. Not only could they not stop it they didn't even know where it was coming from. He said that there was probably no way she would make it. (Obviously we remember things a certain way under a lot of stress, so that might not be exactly as he said it but that's how I remember it. However, it was not looking good).
Michelle, Reva, and I tried to mentally prepare for the bad news we were sure was going to come at any moment. This is probably the worst time to have to explain this to a new mom as all of the hormones are working overtime, but Michelle did okay. We were shortly visited by another neonatologist that said that thankfully they were able to stop the bleeding at this point and barely stabilized her, but she had significant blood loss and her blood pressure was so low she spent an extensive amount of time without sufficient oxygen to the brain. So, as good as things may look soon, we will always be looking for signs of damage. The hopeful news about that is that baby's brains (as explained to me by her current nurse) have incredible stamina and are quite a bit different than adult brains as they arrive ready to encounter trauma. The hope is that the trauma encountered is not significant. They said they rushed her to Children's Hospital and they were able to get a transfusion done, so she was, for the moment stable.
We separated at that moment and Reva went with Michelle to move to a private room, and I went with Kelli and Carlos to Children's hospital accompanied by a nurse. I was put into a consult room and had to sign a bunch of papers giving them permission to basically do what they already did, but permission to continue to do some things and then permission to have the surgery. Both the anesthesiologist and the surgeon came and talked to me and explained her condition was extremely delicate and she is very, very sick. He took her into surgery and about 3-4 hours later we were given the word that she was going to be brought back to the NICU, which was uplifting news to us. At this point I had Kelli, Dave, and Carlos with me, which without them I'm not sure how I would have made it waiting that long. We saw her wheeled back into the NICU, which we have video of, and we had a small conversation with the surgeon that went like this:
Carlos: It's just encouraging to us seeing her move from surgery to here.
Surgeon: I would say it's a miracle.
He told us later everything that happened in the surgery. Basically, the liver was still bleeding. The trauma had hurt a lot of the blood vessels that travel from the liver to the heart and many of them were stuck. He was able to fix that (amazing!) and stop the bleeding. He said that pretty much every organ was outside the body, heart and lungs being the exception, and so he couldn't put anything back in because she is so small. We think he was able to get the stomach and bladder (if it was out) back in. We know this because she peed last night, which is a great sign. We are still waiting for more pee as she hasn't done it in a while, but we know that those organs are working for the time being. Currently, her organs are hanging from a sac over her and sitting on her abdomen, which gravity is pushing them in so very slowly. When we post pictures, if you can handle it, you will be able to see this sac.
We have been prepared, by the doctors, that this process could take a very long time. We're looking at another pretty major surgery in a couple of days to put the liver back in the body because that is the most crucial organ outside. If they can't get everything sewed up in a couple of weeks, we will probably be looking at a multiple month, even year process to get things back in.
I'm about to go back in to see her as the shift change has happened and I can go in (they only kick out parents from 6:30-8:00 when the shift change happens). If I didn't cover a question that you have feel free to ask. If we don't feel like it, we won't answer it (hope you understand) but for now it keeps our mind doing something other than worry. Thank you for the continued prayer while being in the dark for so long. We'll update as soon as we can.
-Kevin
Morning Update
No news is now wonderful news. Karsie stayed stable throughout the night. Kevin walked in about an hour ago to see her and she had her eyes open. They are trying to keep her as still as possible so she doesn't damage her incision, but it was cute to see if only for a minute. The nurses are so wonderful here and understand that we have no idea what's going on with her.
Our nurse last night, and until about an hour ago, was named Ruth. She was so amazing at updating Kevin on every detail of Karsie's stabilizing process from what looks good to what they are concerned with. So far it looks like everything that is cautious for now is something they can fix. There are always about 4 nurses around her 24 hours a day. Kevin loves the times when he sees only one or two as it doesn't accelerate his anxiety.
Pictures will be posted as soon as Michelle has had a chance to see them first. We're having to do a lot of transferring being in two different hospitals and her still not getting to see her baby. We just got word that she may get to see her this morning if she checks out as being okay. We definitely don't want her injuring herself trying to get down here. Thank you so much for all of the prayers last night and continuous. It has been both comforting and helpful. We are still aggressively praying for a miracle.
Friday, July 17, 2009
Karsie's out of Surgery
Kevin was able to see Karsie about a half hour after surgery and for the time being she is stable. She has been through so much trauma in the past 6 hrs or so that it's a miacle she's still alive. We will explain more about that tomorrow, but for now we need our rest. We have some pictures soon to come too, but not for the faint of heart.
surgical update
A hospital socialworker who is a helper for Michelle and me said one of her jobs is to update us on Karsie's progress, so she did that. It sounds like things are going okay in surgery. No excitement. We are hoping to have a full update in the next hour or so.
The Story
In case the last post was a bit cryptic, here's the story: when karsie was born her omphalocele sac ruptured and tore from the umbilical cord which craeted lots of blood loss that they were not able to stop. When we spread the word we had just been told that and that her survival was not likely.
Michelle and I at that point seriously prepared for the news that we had lost our daughter.
The doctors came back and told us that they were able to get her stable enough to transfer to childrens hospital and they were able to somehat stablize her to go into surgery. She is currently there and will be four a couple hours, but she is still very very sick. She lost a lot of blood and was without it to the brain for long enough time to be scary.
We are still in a very bad situation, but we continue to hope and pray. Michelle is doing well after her own surgery.
Michelle and I at that point seriously prepared for the news that we had lost our daughter.
The doctors came back and told us that they were able to get her stable enough to transfer to childrens hospital and they were able to somehat stablize her to go into surgery. She is currently there and will be four a couple hours, but she is still very very sick. She lost a lot of blood and was without it to the brain for long enough time to be scary.
We are still in a very bad situation, but we continue to hope and pray. Michelle is doing well after her own surgery.
update
They have moved karsie's status from survival unlikely to stablizing. We are no where near out of the woods but it looks slightly better. In a bit of a dead zone now but we will post more info when there's time.
Lungs are Mature!
They test in many different levels and only the highest set bar will show up this early that the lungs are mature.
Translation: The lungs are VERY mature! We are a bit on cloud nine right now. We're waiting for the doctor to see if we're going in soon.
Update
We are very happy with the current plan that has been put into place by Dr. Dowling. He came in and said that we basically have 3 options:
1. Delivery - he was a bit tentative doing this because we do not yet know about the lungs and we definitely don't want another issue for Karsie to deal with other than the omphalocele. If she was in active/stressful labor then this is the only option, but since she has calmed down then he said we might want to find out a few more things.
2. Amniocentesis - This is the option that he prefers and so do we. He is going to take some fluid out of the sac and test the lung maturity. If she has mature lungs we will deliver today. If she does not, then we will probably wait until we can't wait any more. If they are not we will then wait until next week if we can (because that's when they can do another amnio) and they may be mature then (which will signal delivery).
3. Wait - This is not anyone's optimal choice, but this was an option. Not going to happen.
We are now going to have an amnio and will probably find out the results in 3-4 hours. Sorry for the continued delay, but this will be so much less stressful to know that she has full maturity if we have to deliver today....we'll keep you posted.
Waiting.....
So the plan at this point was to give you some information a few hours ago. Not so. The doctor has not come in to talk to us yet and at this point we have a new doctor, but still aware of our situation.
Michelle's contractions slowed down considerably last night which makes us wonder if they will try to push it. However, the medicine that is keeping Michelle's uterus happy is making Michelle not so happy. We are fairly certain (without any console yet) that even if they decide to push it, it won't be too terribly long. Michelle has moved from about a 3cm cervix on Wed. to being 1 cm dilated this morning. While this can be a very slow process for most pregnancies, we are not wanting to get to that point. We'll keep you posted when we find things out.
(While I was typing this the nurse came in and said our doc is on his way, and he wanted to make sure Michelle was not having any liquids, so it sounds like he's planning on a c-section to us...but we'll find out for sure soon).
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