Christine's Journal
2006
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.
