A truly Merry Christmas

Merry Christmas!

I have always loved Christmas. It is my favorite time of year. And since becoming a mom, it has become even more special. I get to see the magic of it all through my kids eyes. The fun they have just riving around looking at the Christmas lights. Or helping put the tree up and the ornaments on. Klara telling me, "oh, we can't do this one because it's your special delicate one." It's just an all around great time of year! Most of the time.

Cardinal George blessing Ben last Christmas

Last year was not such a great time of year for us. Ben was in the PICU. He was very very sick. His heart rate kept creeping up, even with the maximum amount of heart meds.  He was blessed by Cardinal George last year. And I was afraid of not seeing another Christmas with him. For that reason, I did not want him to be alone at all. Ever. Joe, the girls and I opened Christmas presents with him in the PICU. Then Joe stayed with Ben, while the girls and I went to Kohl's house to open presents with the rest of my family. Joe did come over briefly to Kohl's house when we lost the skype connection. Then we all went back over to the PICU. It was a very sad Christmas for us. I even dressed Ben up in a Christmas outfit. I still have that outfit. the nurses had to cut it up to make room for all of Ben's lines.

This Christmas, I feel so very thankful. But, I am also reminded of the reason that Ben is here. I am so very grateful that Ben is here with us. I am so happy that he is crawling around, and for the most part is very healthy. He loved all of his presents this year. He loved watching his sisters open their presents and playing with their things. He gets such a smile when Abby built a tower for him from his blocks, and then he knocked it down. It was a fun game to him. He also loved playing with all the boxes and paper from all the gifts.

I am forever thankful to the donor's family for giving us this awesome gift. We have Ben here spending Christmas with us. He is so happy. But, it also makes me think of how they must be feeling this year. Last year, they had their baby with them for Christmas too. They might have been playing with him/her around the Christmas tree, taking pictures. And, this Christmas, they don't have their baby anymore. It pains me to think of the hurt they might be going through at this time of year. Ben got his heart a little over a week after Christmas. So, while we are forever thankful that we have Ben, I am also thinking of his donor family during this time. Joe and I are writing the letter to his donor family soon. I hope that the fact that their child lives on in Ben might offer them a little bit of comfort. I hope that knowing that he is truly living a wonderfully full life and is alive, thanks to their selfless gift in a time of sorrow, might help ease the pain a little. Words can not express how I feel right now. All I can say is, I feel very very thankful and truly blessed to have this year with Ben and hopefully many many more to come!

Sickness issues again

We have had the yuck come through the house again. It has been one thing after another with every one of the kids. Luckily, Joe and I have not caught anything. That would be bad to be sick with 2 healthy kids and 1 sick one. Dec 6 and 7, Ben was at the pediatrician for a cold and fever. Then, last Thursday,  the 13th, I brought him back because his cough was worse. She diagnosed an ear infection. We started a 10 day course of amoxicillan. I was hoping that would be the end of the sicknesses.

As if that wasn't bad enough, the throwing up started, unfortunately, on Saturday when we were at my mom's house in IN. Ben threw up once and we thought it was just because he had eaten and my mom was bouncing him on her knee. So, we didn't make a big deal about it. Then, on Sunday, he threw up 2 more times in the morning. Then, Klara started saying her tummy hurt. She was acting so miserable for about 4 hours. Then, she finally threw up. On my mom's kitchen floor. Ben threw up 2 more times on Sunday. He also had a fever of about 99.8. Klara had a fever of about 100.5 that night. Klara woke up Monday morning and was fine. Ben threw up another time in the morning. We hoped that he would be better after that, since  he started acting more like himself. The whole time, he also had diarrhea. I was worried we would need to go to an ER in IN and would be stuck there. Almost every time we have gone to an ER, they have admitted us. And I would rather be at Lurie or Edward, if possible. We left Monday evening and stopped by Red Robin for dinner. Ben was acting like himself again, so we tried little bites of food. Joe then went to the bathroom and Ben threw up. I had to strip him naked. I had no extra clothes in my purse, so Joe ran out and got an extra outfit for him. We changed him and he felt better. We got in the car and got on the way. When we were about an hour or so from home, Abby started saying she was really nauseous. I gave her Klara's bag since Klara was asleep already. We had her do some deep breathing. She closed her eyes and said she felt better. Then, all of a sudden she screamed "I need my bag! I need my bag!" And then threw up. She then handed the bag to me. I took it, smelled it felt sick. I told Joe, "you need to pull over somewhere or I'm going to be sick!" Abby said, "no mommy! Don't throw up in the car! Throw up in the bag." I told her ok. I kept my hand over my mouth and nose so I wouldn't smell it and told Joe, "I'm going to be sick." Abby piped up from the back, "But, at least I'm feeling better. Right, mommy?" We got to a gas station and threw out the bag. As soon as we pulled in to our driveway, Abby screamed, "I have to throw up! Right now!" Joe rushed to get her out of the seat and she threw up in the grass.

We think Abby was just car sick. She does get car sick, though she hasn't ever thrown up before. Klara felt better. But, until yesterday, Ben just kept throwing up any time any little amount of food got in to his stomach. Even a cracker made him throw up. I was getting very worried about dehydration, or even the possibility that it was something with his heart. Rejection, or an infection possibly. Today, he is starting to get a bit better. He was able to eat 4 crackers and a tiny piece of bread and some apple slices. And he kept them down, which was the best part. He has been nursing extra to make up the calories, and we gave him a bit of pedialyte. Joe took him to the pediatrician yesterday and he had lost a bit of weight. He also still has diarrhea, but he is not dehydrated at this point. Which is why we need to keep pushing fluids. The pedi said not to worry too much about food until he has been vomit free for 24 hours or more. Just worry about the fluids to keep him hydrated. So, that's what we're doing. Hopefully everyone is sickness free before Christmas. I'd rather not have anyone sick on Christmas day.

One Year Ago

Dec 12, 2011

One year ago! It has been one year and what a year it has been! Ben has been on quite the roller coaster ride, and taken us with him!

One year ago today, I thought I was taking Ben in for a tummy bug. We had all had a GI bug go through our house. The girls got it, Joe got it, then I got it. I assumed since I was breastfeeding that Ben would not get it. But, he started throwing up. Since he was one month old, they had us bring him in.

One year ago, I brought our baby in to the pediatrician, he started having breathing problems on the way there. The pediatrician administered a breathing treatment, for which Ben did not wake up for. The pediatrician did not like that, so he sent us to the ER.

One year ago today, I left the pediatrician and headed to the ER, thinking they would keep us overnight possibly, since he was so little and was throwing up. Maybe dehydration?

I brought him in to the ER. The nurses looked concerned. His temp was 95.4°. I remember this because I thought it was due to it being so cold out. They said that no, his temp would not be that low just due to being in the cold. They started the same battery of tests they do for a high fever in a baby. Catheterization for urine, blood, spinal tap. He didn't even flinch for the blood. That worried me, but I still didn't think we would be there more than a couple of days. The nurse in the ER let me know that we would be observed in the PICU for at least two days, maybe a week. I thought, "I can handle that. I don't have to start work until January 3rd. This will be fine. We will get through it." We got to the PICU and things went down from there. The PICU attending at Edward thought Ben's liver felt enlarged. They did an EKG and X-ray and more labs. At this point, I was thinking Ben might have some liver problems. Which I thought that was horrible. Little did I know, at that point, that it would be much much worse.

One year ago today, they told me they were calling the head of pediatric cardiology to come personally do an echocardiogram on him. It might be a problem with his heart since they saw something weird on the chest x-ray. They wanted her in there personally, since she was the best one at Edward. They told me she should be there in about 20 minutes. While we were waiting they told me his breathing sounded funny again and they might want to have him on a vent. I started crying, but wanted to do what was best for my baby. The head of cardiology got there and reviewed his EKG and did the echo. She had me sit down. She told me my baby would need to be vented and had a problem with his heart. Something called dilated cardiomyopathy. Basically his heart was not squeezing hard enough. The cardiologist also told me that he was in very critical condition. He might not make it through the night, and they needed to life flight him to Lutheran General because they had an infant ECMO machine and Edward did not. I had been on and off the phone with Joe and my mom all night. I had told my mom I didn't think she needed to come at first. After I heard that, I called her and Joe back. I told Joe to get down there right now. Luckily, our friends took the girls, even though it was midnight. Joe says the girls knew something was going on and were very good about getting up and in the car. I called my mom and, between sobbing, told her she should get down here right now! Since she is in Indiana and we are in IL it took her a while. The cardiologist came back in and talked to me, she said that she changed her mind and wanted Ben at Children's Memorial in Chicago. They were the only ones in Illinois that could do an infant heart transplant if needed.

One year ago, that's when I heard the words "infant heart transplant." Something no mom should have to think about in relation to her 1 month old. Ben was getting worse before my eyes. I had the nurse call the chaplain. He talked to me, he blessed Ben before his helicopter flight. He held me up when I thought I was going to collapse from grief. He was a wonderful man! I am very thankful he was there, especially before Joe got there and I only had one of the nurses talking to me. The flight crew from Lifestar-1 came in to transport Ben to Children's Memorial. I kissed Ben a lot. The nurses warned us that he may not make the flight, but it was safer than an ambulance, they would get him there quicker. Joe and I rushed down the highway at breakneck speeds, beating the helicopter there. We got there at about 3 in the morning on Dec 13th. My sister met us there about fifteen minutes later.

Making mischief!

It has been very hard reliving this. I have cried a few times thinking it all over. How critical he was, how my family all came to the hospital sometime between 3 AM and 8 AM and were with us all day. How we all worried forever. Would he make it through each night? What would we do with the girls if this turned in to an extended hospital stay? How would they react to their brother being critically ill? How hard it was seeing 5 doctors, three or four nurses, a respiratory technician and the paramedics all in his room at Children's Memorial, fighting to save his life. Fighting to give him a second chance at life. Luckily, we had some amazing friends that helped us out tremendously, letting the girls stay overnight on their school days and helping with transportation to the houses they would stay at, or to school, etc.

But, as you all know, the story does not end there. Ben received his second chance at life on January 5th, 2012. His beautiful new heart. For which we will be forever grateful to his donor family. I will of course, be posting about that on January 5th, 2013. The moments leading up to that, the call, and the day of surgery. You can all expect another long post then (for which I am sure I will need to take another three days to prepare to fight through the tears). We saw our baby laying in the tiny little crib and I kept fearing the worst every single day. When his heart rate would shoot up to almost 300  beats per minute, I didn't know if he would make it. When he needed more pressure support, I worried. I can not even begin to say thank you enough, to the donor family. How hard that must have been to make that decision. They made a very selfless decision in their time of grief. And because of that, our son is here today, making mischief as any 1 year old should. Thank you from the bottom of our hearts!

Cardiology and kidney clinic

Ben's favorite nurse!

Ben had his cardiology and kidney clinic on Weds 11/28. He is doing amazingly well. Kidney decided to drop his Cytra down to only one time a day, which is great because he hates that stuff, and it gives him diarrhea. The kidney doctor even saw evidence of that during clinic, so maybe now he believes it a little more. :)

Cardiology said he is doing very well. He is up to 21 lbs and 29 1/2 inches. The only minor problem is, he can't keep his Prograf levels up. His trough level they wanted him at used to be 10-12. He was consistently at about 8 or 9. But, since he is so close to a year post transplant and is doing well, they decided to drop it down to 8-10. Well, wouldn't you know, now his trough levels are coming back in the 6-7 range. Ugh! So, we had originally tried not feeding him before and for an hour after his prograf was due. Let me tell you how much fun that was! Do you know how miserable it is to tell a 1 year old who thinks he is starving, "no you can't eat for the next 2 hours. Sorry baby boy." :( It's horrible. He would scream and scream until I would give in. It didn't always happen, but when it did, man was it difficult.

So, anyways, when he had his Prograf levels drawn again on Wednesday, he was again low. 6.7, I believe Joe told me, which is no good. The APN agreed with Joe and I that we don't think feeding him before or not feeding him before is making any sort of difference. So, they asked us if we would like to go down on his Prograf, but give it 3 times a day, or go up on the prograf and give it 2 times a day. Well, at first I flipped out at the idea. I mean, I did not want to ruin his sleep even more, or my sleep! Joe had suggested doing 7, 3 and 11. Ack! That meant he would be up until 12 probably. But, then when I thought about it a little bit more, we could do 6:30, 2:30 and 10:30. This would be much easier, though it might mean his nap got cut a little short. But, 10:30 was a little bit better. So, now we have meds 4 times a day, unfortunately :( We have his 6:30, 2:30, 6:30 and 10:30 meds. I was so happy on his 2 times a day schedule. But, the good news is, he may come off of Cytra altogether soon. Though, we will still have other meds anyways. So, I think we will be at 4 times a day for a while. But, at least his prograf dose is lower now. He gets 2.5 ml of prograf three times a day, as opposed to 5.6 ml three times a day. This confused me, but basically, Joe explained that since he will be getting it more frequently, he needs less to keep his levels up. This should also help his kidneys, and his potassium. His potassium levels were great last lab, but lowering the Prograf can only help more!

So, after Joe was done with labs, he had some people from Lurie sign Ben's birthday book. He had his cardiothoracic surgeon, the surgeon's assistant, his cardiologist, a few of the APNs and our favorite nurse from the PICU sign his book. This will mean so much to him when he is older. I know he doesn't care right now, but we love it! And it will be great for him to look back at. Mariah, the nurse from the PICU, said "Oh my gosh! I was having such a bad day today. But seeing you looking so great, my day has just gotten tons better!" We love that she was able to see him so healthy. The last time she saw him, he was 4 months old and 2 months post transplant. He still looked good then, but the majority of the time she saw him, he was hooked up to 14 different meds and a vent and so many machines! We also left a pic of him for the PICU to hang up on their success board. :) I'm sure they love seeing their success stories!