This is a journal documenting then events the first two years after Christine was born
July 17, 2006 - Mom is in her hospital room hours before delivery. Christine is born, then baptized by Pastor Spaulding in the delivery room.
July 18, 2006 - Christine spent most of the day sleeping. The staff at Children's Hospital-St. Paul have confirmed Hypoplastic Left Heart.
July 22, 2006 - Christine is now at Children's Hospital-Minneapolis in order to be closer to the Pediatric Cardiologists who will be overseeing her care. She dropped 2 ounces since birth, so she has been put on a respirator so that she isn't burning many calories just to breathe.
July 23, 2006 - Christine has been gaining weight and is back to her birth weight. She has been sleeping all day and has had no episodes of apnea as in previous days.
July 28 - Lisa got to hold Christine for the first time. She has had a few heart decelerations the past few days and fluid has had to be drawn from her lungs, but she is doing well. Today is also the first day that Christine has been fed formula.
July 29 & 30 - Christine has been gaining a lot of weight overnight so they decided to put a scale under her. They don.t know how accurate the other scale was. At the end of the week they have her weight at 3 lbs 14 oz. She opened her eyes for Joey and Kaitlyn to see and they got excited about that.
July 31 - Christine is now 2 weeks old today. Lisa got to hold her again because she was having a good day. Really no other changes today.
August 1 - Christine lost a little weight last night, other than that everything looks good. There is also a picture of her first outfit.
August 2 - Today was a busy day, she had a terrible night. The cardiologist called this morning and said they stopped her feedings and put her on antibiotics. They are going to do some x-rays. They think she may have an infection, they are not sure where, either in the blood or in the intestines. Her hemoglobin was low so they were going to give her some blood.
August 3 - Today was better we found out she has an infection in her blood. They are deciding whether or not to remove the surgical iv in her head. They don.t want to since that is the iv that is keeping her heart chamber open. She has some fluid in her lungs and her eyes are puffy. She gained some more weight, but they think a lot of it is fluid.
August 4 - Christine has gained another 1/2 ounce. She still has the iv in her head. She was given some more blood today along with some potassium. The doctor said today things are looking better, and he thinks that the formula she was getting was going to her lungs. Her lungs sounded better today.
August 5 - They removed the iv in her head last night. They will be putting another one in on Sunday. Other than that she was looking better.
August 6 - Christine now weighs 4 lbs 4 oz. They put another iv in her surgically today. They put it in her groin this time. Hopefully this one will last until her surgery. Nothing has been set up for that, they are still waiting for her to gain more weight. They also took the respirator out of her mouth and put it in her nose. That's where they want it anyway. They said when it was in her mouth there was a leak.
August 7 - Today was a better day. The nurse who saw her last week said she looks a lot better today, so that was good to hear. She is up another ½ ounce and for the week she is up which is a good thing. They are still giving her potassium and they started her feedings again.
August 8 - Christine is up another ounce to 4 lbs. 5oz.. She keeps gaining which is what they want. There is nothing new to note except that they will be increasing her formula again. Hopefully, this time, she doesn't get an infection.
August 9 - Everything looks good. They stopped her feedings for a little while. She was collecting too much in her stomach, but then they would start them up again.
August 10 - Christine had a good night. She is up to 4 lbs. 8 oz. Lisa was able to change her diaper and take her temperature. Today was the last day for her antibiotics. They also decided to up her feedings. Other than that, everything looked good.
August 12 - Christine gained some more weight and is now 4 lbs. 9 oz. There is really nothing new to report, except that they raised her feedings, so she gets more in a 4 hour stretch.
August 13 - Today we had our first family picture taken. It was a good thing she was having a good day, otherwise we couldn't do it. She gained more weight overnight. Joey and Kaitlyn were able to hold her today. The cardiologist came in when we were there and talked with us. She said that they were looking at the first week in September to do the surgery if her condition permits. They are concerned with her heart chambers thickening up too much, in which case they would have to do the surgery earlier. She also said that it would be okay to do the surgery now if they had to, but she would prefer that Christine put on more weight.
August 14 - She is now 4 weeks old. Her weight is about 4 lbs. 13 oz. For the week she gained 9 ounces, which is a lot. They raised her feedings, again, to the maximum level - a good sign. Because of her feedings now, they were able to get rid of one of the medicines, since she is now getting it in her formula. They are keeping her on antibiotics for now, since they don't want her to get another infection.
August 15 - Today, Christine lost an ounce, which didn't surprise the doctors. She also had a tough day, as her oxygen level kept going down and taking a while to come back up. They monitored it carefully, but nothing new had to be done. She had somewhat of a temperature, so they were taking it every hour. It eventually went down. The cardiologist was in and noticed that her hemoglobin was at the low end, again, but she didn't order any blood. The neonatal doctor also had no additions or changes in orders. He also said all of the recent test results came back negative, which is another good sign.
August 16 - When they weighed Christine last night, is showed that she gained 4 ounces, which would put her a little over 5 pounds. The cardiologist ordered more blood for her. Christine was not happy and got fussy, dropping her oxygen level, but not as bad as yesterday. The neonatal doctor said that he didn't like the respirator going in her nose and would talk to the cardiologist about putting it back in her mouth. They also took away the nitrogen tank she had, as she hadn't used it in 3 days. She is making progress.
August 17 - Christine is now 1 month old. She surprised the doctor and gained a little weight. Everything looked good today, and there were no changes in orders by the doctors. They did take the respirator out of her nose and put it back in her mouth. It was making her nostril bigger, and he was afraid of what it was doing to the membranes in her nose.
August 19 - She had her eyes open for a while and she laid there so nice. The neonatal doctor said she looked good but was concerned that her carbon dioxide was high so she raised her breaths per minute.
August 20 - They took the artery tube out of her leg it was getting loose and she hasn't needed as many blood draws like she did. They put the tube in so they wouldn't have to prick her foot all the time when they needed blood drawn. Other than that her carbon dixiode was still a little high so they raised her breaths a little more again.
August 21 - Today was the day Christine was supposed to be born. She is now 5 weeks old. She weighs 5 lbs 3 1/2 oz. For the week she gained over 6 ozs which is good. Both the cardiologist and the neonatal doctor ordered nothing new. They said she looked good. She is 18 1/2 inches long.
August 23 - She gained weight and is now at 5 lbs 6 1/2 oz. The cardiologist called and talked to Lisa today and he said they are now waiting for Christine to reach 3 kg that's over 6 lbs. He also said he is very pleased at the way she looked and how she has been putting on weight. The neonatal doctor said she looked good. The only change he made was putting her on a nebulizer to help clear out her lungs. She has to be on it every 4 hours for about 5 minutes. Lisa was able to hold her today since the family picture.
August 24 - They ordered a culture today because they are now worried about infection or even pneumonia because she lays on her back a lot and she is on a respirator. When we went in to see her in the evening the doctor said the culture came back negative, but that they will be doing another one in the morning. Other than that no other changes have been made.
August 25 - The cardiologist was in and he said she looked good and the only thing he would like to see is more feedings. He also increased her oxygen level. The neonatal doctor came in and said she looked good, he still ordered a culture for the morning and increased her feedings a little bit, he doesn't want to give her too much.
August 27 - She gained some more weight and she is up to 5 lbs 11 oz. She is still on a nebulizer for 5 minutes every 4 hours to keep her lungs from collecting fluid. The neonatal doctor came in and she said that she wants to get rid of the iv, but not to soon because she doesn't want to put another one in. They are looking at giving most of her medicine orally now. There is just one that can't but there is a way around that she said. Other than that she said that Christine looked really good.
August 28 - This is the first day Lisa has not been in to see her. She wasn't able to go in because she has a cold. She lost weight last night and is down to 5 lbs 8 oz. We don't know how she can lose weight, but again they don't look at daily weight loss or gain they look at it in a weekly basis, and for the week she gained 7 oz. which is really good. They increased her feedings again, to give her more calories.
August 29 - The nurse said that they lowered her breaths per minute from 46 to 40. The cardiologist ordered a chest x-ray only because she hasn't had one in a while. Her iv is out totally. She gained weight and is back up to 5 lbs 11 1/2 oz. According to the growth chart she is making a nice curve.
August 30 - Lisa still hasn't been in to see her. This time the nurse called the house but it wasn't bad news. She just wanted to let us know that they moved her into another room. She said that Christine lost just a little weight. She also mentioned that there has been a lot of rumbling in her tummy. They are going to give her something for that. The nurse thinks it's from the increase in one of her fluids that she needs. So they are going to adjust. The nurse also mentioned that Christine's bottom was really red, not really sure why.
September 1 - Lisa was so tempted to go in and see her today, but she didn't. The nurse told her that they took the ventilator today. So she has no tube going into her mouth. So far she is doing well and the nurse thinks she likes it out. They have little prongs going into her nose for oxygen. The ventilator was there to help her if she needed it. She is up to 5 lbs 13 1/2 oz. Still no date has been set for surgery.
September 2 - Her weight went down a little bit she is down to 5 lbs 13 oz. She still has the prongs going into her nose for oxygen. They are still feeding her through the nose so she doesn't have to work so hard and burn up some calories. Other than that both of the doctors made no new changes. Her oxygen level remained the same at 30%. We still haven't been able to go and see her, we don't want to get her sick.
September 4 - Lisa's mom went in to see Christine today and that's where we got the pictures. She gained weight and is up to 5 lbs 15 oz. Her oxygen level is still the same. She is breathing a little faster today but nothing serious. Again, the doctors made no new changes.
September 5 - Today is the day she finally made it over 6 lbs. The cardiologist called and said that everything looked good and was going to get a date set for surgery. When Lisa called the nurse she said that it was set up for September 18 at 7:30 am. It is so good to have that date set, now we really don't want to get her sick. Her growth curve is looking good. She gained about 7 oz for the week and she is about 20 inches long.
Septmeber 6 - Lisa again called the nurse and she mentioned that Christine is not a morning person. She was a little crabby, but she settled down. The cardiologist increased one of her fluids a little. Her oxygen level remains the same. The doctor now ordered a blood gas to be done every other day until surgery.
September 14 - We received a call from the cardiologist this morning. She said that surgery has been set for tomorrow. Luckly I wasn't standing up. So of course had to make phone calls and adjust the schedule. I arrived at the hospital around 11:30 AM and Christine had already been moved to PICU. They are going to keep her sedated today so she is ready for tomorrow.
September 15 - Christine went in for surgery at 8:00 this morning. Prep for surgery took about an hour and a half, and the actual surgery took place about 9:30. We received frequent updates from the staff, and at about 2:00, the surgery was complete. She was sent back to PICU for recovery, where she was on a pacemaker and her breathing was being done artificially, so that she wouldn't have to work so hard to breathe. The next 12 hours will be crucial, as Christine's body starts the recovery process.
September 24 - We received a call the night of her surgery from the cardiologist, he said that her heart rate was way high, it was in the 240's. They were giving her medicine to reduce that and by the next night it was back to normal. Christine stayed heavily medicated the first few days, just to keep her from not working so hard. She is now a little over two months old. Her chest was open until Friday(22). All of her numbers have been looking really good. She has given herself an infection. They are calling it Pseudomonas Aeruginosa. (I will let you figure that one out) We just know it as pneumonia. This is not unusual since she is on a ventilator. She is surprising the doctors by handling it very well. She has actually surprised the doctors on everything, considering what she went through. The infection is going away slowly, but it is going away. She is on antibotics for it. They started her feedings on September 20 she didn't handle it very well, but now she is up to 7ml an hour. They are now starting to ween her off some of her iv stuff. She is off her nitrogen tank and hopefully if all goes well she will have the ventilator off later this week. They have given her blood, but that is no surprise. Still not as much as they thought she was going to need. As of today her weight is 3K or just over 6 lbs. She now has her own room and still has a nurse just for her. The surgeon removed her chest tubes on September 23, so that's a step closer. She didn't like it at all. She still has wires in for the pacemaker just in case otherwise the pacemaker is not hooked up to her. She has been doing great and actually looking really good too. Still, don't know when she will be able to come home, but she is moving a step closer everyday.
October 9 - Christine is doing well. She got the ventilator off on Thursday October 5. She moved to the third floor on Friday October 6. So she is a step closer to coming home. She has to work on her feedings now. They were feeding her continuously, now she has to eat from the bottle. She has never sucked before, it was always through her nose so the doctors weren't sure how she was going to do. Well, she proved them wrong again and has been feeding from a bottle, not as much as they would like so the rest goes through her nose tube. She has been kinda crabby and it may be that her throat is sore. They are going to look into it and hopefully it will heal. When she comes home she may have the nose tube still in her. They are thinking that the end of the week she may be able to come home. The only thing holding her up is her feedings she is doing well with everything else and is almost done with the medications. Her weight is just over 7 lbs.
October 20 - Today we found out she gets to go home. We left around noon and got home before 12:45pm. The kids were all excited to see her. When we pulled up in the driveway there was a banner on the garage that said "Welcome Home Christine", it was so cute. Hopefully, she will be able to sleep tonight.
October 22 - At 4 AM we noticed a little blood on her outfit. We waited and I was about to give her a bath when there was puss coming out of the incision. We called the cardiologist and she said to bring her on in. I took her to the emergency room at Children's Hospital in Minneapolis and they told us she was not going anywhere. We found out she has an infection and they don't know which one yet. We got another room on the 3rd floor.
October 23 - Today we found out she has a staff(spelling?) infection. They are giving her antibotics for it. The surgeon stopped in and was actually cleaning out the incision and then put a new bandage on it.
October 26 - Today she had a seizure while they were trying to put in an IV. She had to go to surgery to have a brobaic put back into her. They couldn't get an IV and that's why they need a central line. She also had an MRI done. Nothing to report yet. She had another seizure that night. It is just on her left side so far.
October 30 - Today was a busy day for us. Joshua went in for surgery today at 9:30 AM. His surgery wasn't as long as Christine's. They were able to fix it, but the cardiologist said it was a big hole. He will have to go in for another ECHO in a month to make sure everything looks good. His surgery went well and after he didn't want to wake up. The surgery may not have taken long but him waking up took over an hour. Christine is still doing well. She is on antibotics and her incision looks good. The kids ended up being on the same floor at the hospital, but not the same room. That was kinda different to have two kids there. Lisa stayed with Joshua that night since he isn't supposed to move around that night.
October 31 - Today of course is her First Halloween and she has to spend it in the hospital. Joshua was able to be released today. His ECHO looked good and so he was able to go. He's not supposed to run or jump or do anything that will make the incision bleed. Do you know how hard that is? The infectous doctor was in to see her and put her on 10 day antibotics instead of 14 days. She has a bad cough but her lungs sound clear.
November 2 - The doctors said she can go home today. She is off her antibotics and she is eating well. We were all so excited and hoping this time she will be staying home a little longer. The kids were excited to see her. She has to have a lot of medicine and we have to clean her brobaic out so it doesn't cause an infection.
November 8 - She is still at home which is good. She had an appointment with the cardiologist yesterday and Dr. Gleason said that Christine looks good. The doctor wanted some labs done to make sure she has nothing going on before her brobaic gets taken out. The doctor called today and said that the tests look good but would like a CRP done again on Monday to make sure everything still looks good before Thursday when she gets the brobaic taken out. So far she hasn't had anymore seizures. The seizures may have been caused by the infection and the antibotics she was on.
March 29, 2007 - It is now time for her Glenn. Surgery was changed again. It is now scheduled for 1:30 PM today. We got to the hospital at noon. They took her from us around 1:15 PM. We finally got a call at 2:45 PM saying they were ready to start. It took that long to get her set up. Then a little after 3 PM Dr. Gleason Han came in telling us things were going well. We didn't hear anything until 4:15 PM when Dr. Gleason Han came out to tell us that they were closing her up now. She said they didn't need to use heart lung machine. Then at 4:30 PM the surgeon came out to talk to us. He said everything went smoothly. He is a little concerned since they didn't use the machine that her risks for stroke could increase, but we will have to see.
March 30, 2007 - She had a good night. This morning though is another story. Her heart rate went down to 54, which is really low. They stopped one of her medications and that worked. It then starting going back up where it should be. Her blood pressure looked good through it all. Lisa had to leave early so she could get some sleep before the Timberwolves game tonight. She called at 3:30 PM and the nurse mentioned that she may have had a seizure and they put her on medication for that. Other than that she looks good for today.
March 31, 2007 - Lisa got to the hospital early today. Dr. Han said that she looked good today and no changes to be made. She will be starting on formula today. Lisa was able to hold her today, but it was tricky because she was moving all over the place and she had her chest tubes still in. The surgeon said they may come out today, but tomorrow for sure. She had an up and down day. She was uncomfortable and it's because on her xray she had a big bubble in it and she couldn't get it out yet. So they are giving her medication to get that going. Other than that she is doing great. Her eyes are swollen today which the surgeon told us would happen. She is taking her formula well. The neurologist stopped by to see her. She mentioned that it may not have been a seizure that she had. The nurse just put in her notes that she stiffened up so that doesn't mean it was a seizure but it will not hurt her to stay on the medication. She settled down in the early evening.
April 1, 2007 - Lisa stayed the night at the hospital last night. The nurse said she had a good night. She ate and even smiled for her. Her eyes look a lot better today, she can open them better. Her stats look good. She is waking up and falling back to sleep with little or no problem. Dr. Han said today she will be getting her ART line out of her arm, she will still have the one in her neck for now. She will be put on oral medication now. The surgeon came by and removed those chest tubes. She is getting closer to moving upstairs. All she has is the line in her neck and prongs with oxygen going into her really on her. Medication is really nothing like before. Other than that she looks good today and I think she feels better today.
April 2, 2007 - Today was a good day. Christine was awake and smiling today. The nurse gave me the good news today and that is we are moving up to the 3rd floor. As soon as she eats we are going up. When we got there she decided she didn't want the prongs in her nose anymore so she pulled one side off. The nurse then decided she looked good and really didn't need the nose prongs so she removed the other side. She didn't like that at all. Other than that she is looking and feeling good today.
April 3, 2007 - Today was another good day. Dr. Han said that tommorrow morning her line in her neck will be removed after she gets her blood drawn. Dr. Han also mentioned that if everything goes well she could go home by Thursday. She didn't want to sleep today hopefully she will sleep tonight. Other than that everything looks good.
April 4, 2007 - Today Dr. Han called the house to let us know that on her x-ray there is air in her lungs and they will have to put in one chest tube to get rid of it. So that means she will be moving back to the first floor. Lisa got there around 10:30 AM. When she got there she got the news that the surgeon said that it wasn't enough to have one put in just yet. He ordered another x-ray for later on today to see if she can release it on her own. Lisa had to leave cause she wasn't feeling well at all. Her mom is staying with Christine. Dr. Baker looked at the x-ray and said that nothing has changed. So as of tonight she won't have the chest tube put in. They will do another one in the morning and then they will decide. Hopefully she won't need it. Other than that she is having a good day. She is happy and smiling again today.
April 5, 2007 - Today, we had another good day. Her x-ray came back showing that the air was gone in her lungs, so they didn't have to put her chest tube back in. Lisa didn't go to see her because Lisa had a fever yesterday. Christine is still downstairs, because, unfortunately, there isn't a room available upstairs. So we are just hanging out right now. She still has the line in her neck, and we don't know when that will get removed.
April 6, 2007 - Today was a great day. She started out in the PICU where she stayed and we ended up on the 3rd floor. The surgeon wanted her to stay one more night and she could go home tomorrow. Everything looks good and said that Christine would get rid of that air on her own. (not needing the chest tube) He also said that it was a good thing that it was air and not water that would have been worse. When we got upstairs that nurse didn't like how red looking her neck looked from the neck line. She made a phone call to Dr. Han and came back and said that she has to get some blood out first and then after that she will take it out. The stitches were really close on her skin so that was tricky since she wanted to move her head. She got the stitches cut and pulled out and then she pulled her neck line out. Christine just screamed she didn't like that at all. The nurse said that it was starting to come out anyway. The neck area was really red for a while and then was looking so much better. I think Christine liked that it was out. Let's hope we can go home tomorrow.
April 7, 2007 - Well, we had a great night. Christine went to sleep around 9 PM and didn't wake up until 4 AM. She even stayed sleeping when the nurse came in to check her over at midnight. She was a tired baby. After her feeding she fell back to sleep. Her nurse today is the same one she had yesterday when we got up here. Her neck looks so good today. The nurse weighed her and she is 12 lbs 3 oz. That is good since she went down to 11 lbs. Everything looks good and the nurse is trying to get us out of here. The doctor didn't make it up to the floor until after noon. She said in order for her to go home her x-ray needs to look the same or improved. So, we took her down to get the x-ray done. To our surprise the bubble was gone and the x-ray looked perfect. The doctor made some orders and got the medications written up. I started packing up. Finally, it was time to get Christine loaded up. As we were leaving we had say good bye to a lot of the nurses. (they remember her from the last time she was in) We got home and the kids (and Gary) were so excited to see her. Let's hope she can stay home.
April 11, 2007 - She is still at home. We had an appointment with Dr. Han today. Everything looked good. Her weight is 12 lbs 7.6 oz, height is 25 1/2" and her oxygen level remains the same. She also had an x-ray done again. That x-ray came back the same as the last one from the hospital. No changes except for her medications. We had to stop some and start some new ones. Dr. Han also said that we will see her in two weeks and after that it would be three months when we would have to come back.
July 13, 2007 - She had an appointment with the cardiologist today. We had to see a different one today since her regular doctor was on maternity leave. We saw Joshua's doctor today. She weighs 14 lbs. 6.8 oz. and is 26" long. We ran into the surgeon on our way to the appointment and he just can't believe how good she looks. We didn't need anything done which was good.
July 17, 2007 - Happy 1st Birthday!!!! We had a party for her with just family. She was overwhelmed, there were so many presents and everyone was wanting to hold her. She even dipped her fingers in her cake. It was a great day. I just can't believe it has been a year already, time just flew. She is our little miracle baby and we thank God everyday that she is still with us. We sure treasure everyday.
October 18, 2007 - Today was another appointment with the cardiologist. We got to see Dr. Han again. She needed an ECHO done today and well it started out good and she was cooperating, but then they needed one other thing and she just wasn't going to let it happen. They got it good enough. Dr. Han noticed that there is a little leak going on, but it is so little that she can't even hear it, so for now nothing is being done. Since there is a mild leak she wanted another blood pressure taken and it came out good. Her weight today is 17 lbs. and 28" long.
January 11, 2008 - It has been 3 months since the last appointment with the cardilogist. Today she needed an x-ray done. The nurse took her into another room and I stayed back and I could hear her crying, I think the whole building could. The x-ray looked good. Dr. Han also listened to her and said she still can't hear the leak yet so in April she will have another ECHO done. Her weight today is 18 lbs. 6 oz and 28 1/4" long. She is still doing her own curve. Other than that everything looks good.
April 27, 2008 - Earlier this month Christine had another appointment with the cardiologist. As I was getting her undressed for her weight she started crying. This was not going to be an easy appointment. She didn't want to be measured either, but we got it. Then came time for her oxygen level check, the nurse tired her foot and no luck with a reading then she put it on her big toe, well, that was not place to put it, Christine just screamed. I calmed her down long enough to get a reading that was steady. Then we left and headed for the exam room. This is where it was time for blood pressure, again not a good thing. Of course, it was high. Okay, now it was time for her ECHO. I brought a bottle to help some and that's all it did. I should have had a bigger one because the bottle was gone before the ECHO was done. After all that we finally got to see Dr. Han. She said the ECHO was okay but she would have liked to see more. It would have helped if Christine wasn't crying. So, she listened to her and sounded good and clear. Dr. Han is a little concerned because her oxygen level is quite a bit lower than last visit, but she says that Christine looks great. So, now she wants us to go in and see the primary doctor the following week.
We went in the following week to see Christine's primary doctor. She was fine until they called us back. She had to get weighed, which again she didn't like. We go to the room and then came time for the oxygen check. Well, again the nurse put it on her big toe, which again she didn't like. We did get a reading and it was as low as at the cardiologists. So the doctor came in and listened to her and just checked her over. He said she sounded good and she looked good to him, but he also said that he is no cardiologist. So we got home and I called Dr. Han's office and left a message with the results. The nurse called back and said that Dr. Han would like us to go back and see him next month. Here we go again.
July 17, 2008 -- Happy 2nd Birthday! We are so blessed to have her still here with us. Her becoming 2 seemed so far away and now it is here. It has been a good year. She is beginning to walk, talk and feed herself. We had a birthday party for her on July 12. There was a house full of mom, dad, sister, brothers, cousins and more cousins, aunts, great aunt, uncles, grandmas and grandpa, great grandma and great grandpa. It turned out really nice.
She is so into Blues Clues right now. So, we got a cake and decorations with Blues Clues on them. Finding toys with Blues Clues on them was almost impossible, as they don’t make any more toys. She had so much fun opening up presents this year. She was doing a great job until she opened the Blues Clues DVDs. After that she didn’t want to finish. It was a perfect day. As we continue to pray for our little miracle, please help us with your prayers as well.
July 22, 2008 – Today was another 3-month check up with her cardiologist. We got a call Monday afternoon from the clinic asking if we could come in an hour earlier because the doctor wanted her to have an ECHO done. Oh, my goodness, it was a good thing we left early for the appointment, it is such a mess down by Children’s Minneapolis. They are redoing the roads and the ramp. It will be nice when it is done, hopefully better in 3 months when we go back. Nurse Shannon took us back to get weighed and measured. She is 20 lbs. 4 oz and 31 ½” long. She is at 5% for her height. (yea!!) Then it was time for her oxygen level check, that didn’t go so well. We finally got a reading 85% which is good for her.
Next, was her ECHO to be done. We got into the room and luckily I remembered to grab a Blues Clues movie, so he started that up and then I laid her down so he could put the stickers on and then get started. It worked for a lot of the exam, but towards the end she was getting upset, so I tried holding her. That worked for a little longer and then she really said enough is enough. We then went back to the room to wait for the doctor.
Dr. Han came in and said that the ECHO looked good. Except for one thing, there is a little leak in her aorta but when she listens to her heart she can’t hear it. We have known about this since October of 2007 and it hasn’t grown which is a good thing. She didn’t have much else to say. She of course said that she looks great. No new changes and will see her in 3 months again.
July 29, 2008 – Today was an appointment with the pediatrician. She did really well today. I had to get her undressed, to get weighed and she had a hard time with that, but otherwise nothing really upset her. The weight that they got was 20 lb. .4 oz and 32” long. Her O2 stats were 84-85%, which is in her area. Everything else looked good. The doctor was really pleased with her considering everything she has been through. He was just a little concerned she isn’t talking as much as she should, and he would like her to have her hearing tested. Won’t have to see the pediatrician until she is 3, unless something comes up before that.
October 6, 2008 -- Well, here we are again another 3 months. I hope I don’t put my foot in my mouth by saying this but I think she is getting used to the appointments. She was excellent. She didn’t cry when her blood pressure was taken, or when the nurse did her oxygen level, and because of that it went a lot quicker. Dr. Han came in with a startled look on her face because she saw Christine walking and talking. She looked Christine over and said everything looked great. She still can’t hear the “leak”, which is a good thing. She didn’t make any changes to her medications. We will again see her in 3 months when again she will have an ECHO done. I sure can’t wait for that!!!!! She also mentioned that by summer she could be getting her heart cath done. ( so soon?) Thanks for checking in on us.
January 19, 2009 – First journal entry of the new year. Things are returning back to normal. (whatever that is right!) The kids and Gary all got sick over the last few weeks. Nothing that required a trip to the hospital, which is great. There was and maybe still is something going around and it found it's way to us.
Christine had her 3 month check up today. I was a little nervous how things were going to go today, as Christine needed an ECHO done. The nurse did what she needed to do. She gained almost 2 pounds in 3 months, but she lost some height, it was an inch. Well, the doctor said that is not possible and one of the nurses measured wrong. Her oxygen level was where it should be for her, and her blood pressure was good.
Before the ECHO, Dr. Han came in to see us. She went over the chart and listened to her and just said she looks great. Still, can't hear anything with the leak. She increased her medication but other than that nothing new. Yeah!!!!! So, now it was time for the ECHO. We got in the room and laid her on the table and she was fine until he wanted to put “stickers” on her chest, for hook up of wires. She did awesome and we got out of there in no time. We got back to the room, got her dressed and then Dr. Han came in again. She said everything was clear and looked good. We can now leave.
Of course, we will see her again in three months and then in July we will have a CATH done on her to prep her for her final surgery. Please, continue to pray for us and with us. Thanks for checking in on us.
April 27, 2009 . First, we would like to thank everyone who has been checking in on us. Then of course thank you for keeping us in your prayers. The power of prayer is a wonderful tool to have.
Now for the update. We had an appointment with the cardiologist on Friday (24). It went well. Christine had an x-ray done and we didn't even hear her this time. That is because she is big enough to sit up, instead of laying down. She is now 23 lbs and she gained back the inch that was lost 3 months ago, her O2's were in the 70's now, which is really low for her. The cardiologist said that is normal for her stats to be lower as she is growing. As long as she looks good, which she does, then everything is good for now. She had to have 4 blood pressures taken. On both arms and legs. Of course the readings were all different, but she didn't have to have them redone. (thank goodness) There is still that leak going on, but again it is still small where she can't hear it. Hopefully, with the next surgery they can fix that.
This appointment was a little longer than usual as we were getting some details as to when surgery may happen. Here's what we found out. It appears that surgery will happen late summer or early fall. They would like to do it before .cold and flu. season start up again. She could be in the hospital as little as 10 days or it could be months, it all depends on how much fluid she gets in her lungs, as with this surgery it's likely she will get some.
She has a CATH set up for May. As some of you may know that would mean surgery is coming. What they are doing is looking around and seeing what are going to be dealing with. Then they sit down and talk about it. This should be just a day thing, but you never know.
May 14, 2009 – Today, we had an appointment with the cardiologist who will be doing Christine's heart cath. This is her pre-op appointment. She is up to 24 lbs. Everything else is good. Her oxygen level was in the 70's again, but no concerns yet. She did really good. He even said that her heart sounded good.
Once the heart cath has been done, he will be bringing Christine up in the meeting with the other cardiologists. We should find out a couple of weeks after her cath, what they have decided to do. The ONLY thing he is worried about is her weight. She is not where they would like, but you never know they still may decide to go ahead with the surgery anyway. We will know more of course once her cath is done.
Please, continue to pray along with us. Also, please feel free to email me a “praying for you”, or “thinking of you”. I plan on putting them all together for Christine, so she can go back and see how many people are out there praying for her. More later.
May 21, 2009: Christine went into a scheduled surgery, today, to prepare for the big sugery within the next year. A cath was inserted in her to have a look at her heart to see how she is progressing.
After a couple of hours between the process of being anesthetized and the procedure, Christine came out groggy and irratable, comforted only in that she arrived in the Short Stay Unit just in time to watch Wow Wow Wubbzy. She is scheduled to be released at 8:30, tonight, so she can sleep in her own bed.
May 25, 2009 – Sorry, this is a late update it was a tough a weekend. On Saturday, we decided it was time to put our dog of 16 years to sleep. She was a good dog and as you can see we had her for a long time. The kids took it hard but they too knew it was time. Thank you, Thank you for all of your prayers. Everything on Thursday went well.
We got there on time, and got down to the room with the nurse who went over things. If you can believe this but one of Christine's favorite nurses from the NICU now works downstairs. Once the nurses were done with what they needed to do, the doctor came in. He went over things had us sign consent and then listened to her. Then the anesthesiologist came in and talked about what they were going to do. Then it was time.
I felt I should go in with her as they put her to sleep. I thought it was going to be okay, I could do this. After seeing that, it was not easy at all. It was one of the hardest things to watch. I then went back to the room and saw Gary and just cried. Then we went to the waiting room, to of course WAIT.
The nurse called a couple of times to let us know how things were going. At 4 pm the cardiologist came out and we went to go over what he found. He said things went well, her stats were awesome BUT the leak I have been talking about is not slight it is more than that. He isn't concerned about it as she has been handling it this long so he just upped her blood pressure medicine to modify the leak. He wants her to come back in two months. Also, on Thursday (28th) he will be bringing her up at the big meeting. After that meeting we should know more. He also mentioned that she will be released at 8:30 pm. (yeah!)
Finally, at 4:30 pm they call and say she is ready to move to the short stay unit. It was such a relief to see her, she looked great. Every hour a nurse came in and took her temperature, blood pressure and get her oxygen level. Everything looked good. They have this new device that they use for the cath that stays on her groin (like a big band aid) and they have to deflate it to make sure she isn't bleeding and then they reflate it. They put air back in it and have to make sure they don't put to much. Once we leave they will take the air out and cut off the end and then in 24 hours the whole bandage will come off. (guess who will be doing that)
A little before 8:30 pm the nurse came in and went over things with us. Then we were free to go home.
July 17, 2009 . Happy 3rd Birthday to our little sweetheart. It is hard to believe that's it's been three years already. Where has the time gone. We didn't do much on her birthday as we were going to have a party the next day.
So Saturday we had a family party at the house. We had a house full of people which was nice. We only did one cake but we celebrated not only Christine's but also Joey and Joshua's as their birthdays are in August and we don't know where we will be. It turned out to be a beautiful day.
They got some very nice gifts. Christine got some yo gabba gabba stuff along with wow wow wubbzy. She had so much fun opening gifts it was great to see. Joey got more than usual as his golden birthday is this year. Joshua cashed in on some more cars (from the movie cars). All in all it was a pretty big mess around here.
It won't be long and we will be back at the hospital. Please, continue to pray with us that everything turns out okay. We know that there will be good days and bad days, we just hope the good days out number the bad days. I plan on staying at the hospital as much as I can. Gary took some vacation time to stay home with the rest of the kids. It should be interesting to see how that goes. Help us in getting through the month of August. Thanks again for everything.
June 12, 2009 . Today I got a call from the lady who sets up surgery dates for the cardiologists. We now have a date of August 7. Christine will be the first one, so we will have to be there early.
Now more than ever we need the prayers coming. Even though this surgery has a very high survival rate, something could still go wrong. She could be in the hospital for 10 days or even longer depending on how much fluid gets in her lungs.
Her third surgery in the series of three is called the Fontan. In the final surgery the surgeon will redirect the blood flow. Taking the blood through the IVC (inferior vena cava) directly to the pulmonary arteries with the SVC (superior vena cava) blood. All the blood then goes to the lungs for oxygenation before going to the heart for pumping to the body.
The surgeon who will be doing the surgery said that her weight is not a factor. She is doing her own curve and it won't matter if it gets done this summer or next year. We are glad they want to do the surgery this summer as Christine seems to be huffing and puffing more than usual. She seems to be blue a lot more than usual and she feels sweaty. This all has to do with her growing and the her maybe needing the surgery sooner rather than later. Through all of this she is still a happy almost 3 year old.
August 14, 2009 - We got the okay to go home today. That was so exciting.
Her chest xray remains the same with the left side still holding some
fluid, however it has not gotten worse. This is nothing out of the
ordainary, they are hoping it will just move its way out, if that doesn't
happen or if it gets worse they will have to go back and fix it. We hope
and pray that doesn't have to happen. They told us to watch her closely,
making sure she doesn't get a fever (hense infection), she doesn't get
blue when she isn't crying (hense the lungs), watch for bruising,
bleeding, etc. She is on four different medications, only one she really
doesn't like and of course she needs it twice a day.
Christine was so excited to be home. The rest of the kids so excited
to see her also. It is so great to have the whole family together
again. It has been great to have the families of Joey's class bring
us dinners. That has been so helpful and thoughtful of them. It is
so amazing how people are there for you when you really need them.
We go in on Tuesday to get blood drawn (not looking forward to that),
chest xray and just a regular check up. Hopefully everything looks
Thank you for all the prayers, cards, gifts, meals. Please, continue
to keep us in your prayers as we come up to the appointment and there
after. Our prayers have been answered so far. It sure is a
wonderful tool to have.
August 18, 2009 - We are still at home. We did have an appointment with
Dr. Han this morning. Before the appointment we had to go and get her
blood drawn. We got to the hospital around 8:15 am and got in by 8:30 am,
thank goodness that gives us a half an hour to get the draw. Well,
luckily the lady was able to find one right away and her blood didn't stop
it kept going. That was the one thing I was not looking forward to. It
is one thing to get poked but when it stops and they have to poke again,
it just isn't right.
So, we walked over to the clinic. It was a beautiful morning (not
raining, yet). She weighed in at 23 lbs 5.6 oz, and 34 1/4" long.
Her oxygen level was 99%. Everything looked great. Well, almost
everything, she had her chest xray and well it still shows the fluid.
It is still the same amount, she just can't clear it yet. Dr. Han
prescribed another prescription to see if that helps at all and we
will be back to the clinic on Friday. Luckly, it's only the chest
xray no blood drawn.
Christine's INR level is still not where they want it, so that means
instead of 1 and 1/2 tablets daily of coumadin, some of the days she
will need 2 tablets. Otherwise, she really didn't change anything.
All we hear from the doctors and nurses is that she looks great.
Really, she looks sooooo much better than before. She is just one
of those miracle babies. We know how lucky we have been. There are
some kids who have a harder time and maybe our time is yet to come
but for now we are taking one day at a time.
As we were walking out we ran into the surgeon and he always has said
to her "Well, hello beautiful." He said she looks great and then
Christine smiled at him. I think she knew he wasn't going to change
her bandage anymore. The Lord has really blessed him with a
Will update on Friday, with results of the xray. Please, pray that it
will look better. That is one tool that doesn't get old. Thanks for
checking in on us.
September 1, 2009 - Today was another scheduled blood draw and xray. The
blood draw is so hard to do. She just screams as soon as she sees the
blue thing they wrap around your arm. Then when they can't find a vein
cause it moves, it just delays the process. There is NOTHING you can do
to settle her down until she realizes that it is almost done, then will
she stop crying.
After that ordeal we head over to the clinic for the next process.
We get in and she has gained some weight (good and bad), height grown
a little, oxygen level is in the 90's, and blood pressure looks good.
The xray she does not mind (or as she calls it her picture). She
walks right into the room and in no time she is back by us. Dr. Han
then came in and said the fluid has gone down some more BUT there is
still some. Everything else looks good and she sounds good. Dr. Han
said we have had four xrays since being released and they are looking
good so we don't have to see her for two weeks now, unless something
comes up before.
Thanks for all you have done for us. Thank you for checking in on
us, it really means a lot. Till next time.
August 21 - Today was our appointment for Christine's chest xray. We got there at 11:15, just as scheduled. When we got to the room, it was time to get her weighed, so off with the clothes. Her weight is 22 bls. and 11.8 oz. - great, she has lost weight. I am thinking this is not good. The nurse steps in and says that this could be good, as it may be a sign the she got rid of some of the fluid in her lungs.
We got into a room and took her blood pressure, which was in the range- no oxygen level check, today. Christine actually walked to the xray room, as the room we were in is right across from there. Now, it was time to wait for Dr. Han to come and tell us the news.
Dr. Han grabbed the xrays from Tuesday, then todays, and showed us the difference. She did lose some fluid, but there's still a bit there. So, we will stay with the medications we have now and see her again on Tuesday for another xray and blood draw.
Please, continue to pray with us that her xray will finally look clear, and that the blood will flow when they have to draw it. Thanks for checking in on us.
November 5, 2009 - Sorry, for the lack of updates. It has been a long
month of October here. If it wasn't one child sick (with fever) it was
another and then trying to make up homework. So far Christine and mommy are the only ones who DIDN'T get the fever.
There just isn't a whole lot going on with Christine. Praise the
Lord!!! He is definately watching over her. We had two appointments
today. One was the neurologist and the other was the cardiologist.
The neurologist said she looks great and there is really no need to come see him again unless she gets a seizure. Since she didn't have
one after her last surgery, he feels she will be fine. Yeah! one
less doctor to see.
We got to the cardiologist early to see if Christine needed her blood drawn. Well, of course she did but the good news was her doctor
would be able to see her now before the blood draw. She is still 24
lbs. She had an xray that came back perfect. The doctor was
impressed with her yet again. She only had surgery 3 months ago and
she is doing amazing. She has been doing so well that the doctor
reduced one medication and stopped one completely. We don't have to
see her until January unless something comes up.
Now it's time for the blood work. I sure hate this time and can't wait until I can just finger poke her. We got in and we got a man. Okay, this is our second one and she just doesn't do well with them at all. It took longer than a couple of weeks ago, but not as long as the one before that (with the other man). I will be requesting a female from now on. Christine knows that after the blood work she
gets some stickers and a pencil. Well, she got her ONE sticker and
no pencil. He told her they were running low on them, she started
to cry. Are you kidding me? I guess I should just bring a pencil
from home and have her pick that one out everytime. We finally
leave trying to calm her down.
I get a phone call about 3 hours later from the nurse. Christine's INR is high. Great what does that mean? She said that we should stop the coumandin for 3 days and start back after that with just 1 1/2 tablets instead of 2. Here comes the kicker, come back in a
week and get her INR checked again. Really not what I wanted to
Joshua goes in on Monday to see the urologist. It has been over
three years since his surgery and two years exactly from seeing him.
Hopefully everything still looks good.
Thanks again for checking in on us.
December 16, 2009 . It appears to me that it has been a while since my last journal, so I thought it was time to update. As the saying goes "no news is good news" and in this case it is. We are all finally healthy again.
Christine is doing amazing. We have gone to the hospital the last three Mondays for blood draws. Her first one was high so they adjusted her coumandin level and they wanted to make sure it was okay after that. As of right now we won't have to get blood drawn for a month. That is so awesome. She is growing and running and talking and fighting with her siblings. It is great to see. Well, okay not all the time with the fighting, cause she usually gets her way.
We hope everyone has a wonderful Christmas. This is such a special time of the year as we celebrate the birth of our Savior. Thanks for checking in on us.