Saturday, November 27, 2010
Well I finally did it. I made this blog into a book. To look at the final view, or even if you want to order the book, this is the link.
Thank you all for the support that we received through the hardest trial of our life. We all are a little stronger and better for having gone through it though. Genesis is doing WONDERFULLY!!!! We are waiting for her lab results to tell us how her kidney function is, but last time it was around 90%! She is off all of her meds, except for the antibiotics (which she will be on for the rest of her life.) She is exactly the same little girl that she was before. She runs jumps, plays, remembers EVERYTHING that we had taught her before, and has learned a lot more! Sometimes I look at her, and can't believe that she was ever that sick. When we go to Dr.'s appointments they all are astonished at how well she is doing.
I will never forget what I have learned from this experience, and how much love I felt from all of you, even the ones that were following anonymously.
Friday, June 25, 2010
Well, I have had no time to write the last few days. We are finally home. They let us go a couple of days ago. You are still on a lot of pain medication, and other medications, and in time we hope that you can get off of all of them. Your skin grafts are looking great! I am simply amazed at the miracle that we have experienced. This journey is finally coming to an end, but your brave journey will never end. Always keep moving forward. I have watched you, and I have seen what you are capable of. You are stronger than you will ever know. We never know our own strength until we are pushed to our limits. I hope as you grow and read this at different stages of your life, it can help you to know that you are loved, and that I will always be with you watching and loving you.
Tuesday, June 22, 2010
Well we didn't get to go home today like they thought we would. But the good news is you got your feeding tube out! Then we had to put another one back in. Although it sounds like a step back it actually is not. The other feeding tube you had went way down far in to something called your intestines. This feeding tube is just in your belly. So this one means that you are getting better, and your stomach is starting to work again. They want to keep us here a little longer to try and take you off of some of the medicines you are on, because there are a whole lot of them. They told me that we might go home Friday, might being the key word. You are doing so well, and are looking so good, but for some reason there is always a small reason why you should stay a little longer. But as long as you are improving I am happy.
Monday, June 21, 2010
We got a lot done today! We took pictures of your heart to make sure it was beating the right way. Then we took the staples out in your legs, and also the stiches. We also had to take out your IV because it wasn't going into your body the right way. So you had some pain medicine running through that IV, and because we had to take it out, they decided to put you on all pain medicine that goes through your feeding tube. So now all we have to do to go home is make sure you are eating enough, and that your pain is controlled with the medicine. They said we might not go home tomorrow, but maybe in the next few days. Then Kade came over to visit you, and you didn't like him playing with your toys, so with my help you stood up, and walked over to him to let him know you didn't like it! You also started to crawl all on your own. I can't belive how well you are doing. After we said goodbye to Kade we went down for one last goodbye to Dr. Larsen. I am so grateful to her for never giving up on you. Dr. Hubbard also stopped by your room today, and was so happy to see you are doing well. After all that we came back to the room and you crashed and went straight to sleep! Thank goodness cause I am SO tired!
Sunday, June 20, 2010
Wow it is incredible how far you have come. You are still keeping down all your food, and you are acting like my little Nessa again. You do not want to go to sleep, and you keep playing with the nurse. You had a wonderful day. Today is Father's Day, and I think it is funny that we have been here through a Mother's Day and a Father's Day. It just reminds me how lucky we are that we have you so that we can be a mom and dad on these days, and everyday. We stopped by the PICU today to say good bye to some of our favorite people, namely Andrea, or as you call her "Annie". Every one had to take two looks at you because they didn't recognize you, because you looked so good. Tomorrow they are going to take you into surgery again to get the staples removed out of your legs. They put staple in to keep the skin grafts in place. I love you so much, and I am so happy you are back to yourself, and with us again. I cannot imagine life without you in it. You enrich our lives so much, and I am a better person because of you.
Saturday, June 19, 2010
So far today you have kept down breakfast and lunch, and last night's dinner! I am so excited. I hope that this continues so that we can do less tube feedings and more eating by mouth. This has been the first day this week that you haven't have to be sedated for something. We had nothing scheduled today but just to be together and have a good day. So as usual we went on a walk to angel garden and then to the playroom. Everyday you act more and more like yourself. Everyone that see's you says that you look so good! I feel so lucky to have you back in our lives again.
Friday, June 18, 2010
Daddy came up this morning, and you were able to keep down some yogurt. We are hoping that little by little you normal stomach functions will come back. Right now you have not had any food in your tummy for so long, that it is really hard to keep it in, because your body is not used to it. The doctors are saying that you still should be good to go home by this coming Tuesday. You will have to go home being on a lot of medications, and still have your feeding tube in, but we will be home. I can't believe that we are going to be going home in such a short amount of time. You are improving so much everyday. Today we went to the Playroom. The hospital has this really cool room that has tons of fun toys to play with. You wanted to play in the little kitchen, and so you sat up all by yourself in a chair and played with the kitchen. You even tried to stand a little. You are so weak that it was really difficult, and you needed a lot of help. It is wonderful that you are wanting to try. With lots of practice we will get you back out in the yard running around and playing again.
Thursday, June 17, 2010
You got to see Dora the Explorer, and Sponge Bob at the hospital today! It was so cute, you wanted to hold their hands. After that we went to the playroom and you sat on the floor, and played with a doll house. You did so well, and sat up on your own for about 15 minutes! You are so strong, and getting stronger everyday. You had a pretty good night last night, and only woke up a few times. You were able to keep down the food that you had for dinner. So I am hoping throughout this weekend your stomach can get stronger, and keep more stuff in it. Things are going well, and we are just trying to adjust you medicines so that we can take you home in a week or so.
Wednesday, June 16, 2010
Today was extremely bittersweet. I almost didn't write today, because this morning was so awful. Your feeding tube got pulled out last night while you were tossing and turning in bed from withdrawl and being in pain. So they had to put in a new one and they had to tie your hand and feet to the board so you wouldn't move. You were screaming and so mad. I can't blame you at all. Then I found out that the people who were supposed to pay for your medicines, and our stay at the hospital, and all the stuff we have to do with doctors when we get home, are not going to pay for anything, and that we have very few options left to help you get the medicines you will need and the therapy. So I was pretty upset at people who would do this to us, and at just how cold some people can be. But you woke up from your nap, and were in a great mood, so we went on a wagon ride around the hospital. There was a volunteer who was playing some music in the lobby. So we sat and listened to it. All the sudden I felt so appriciative of that guy. I thought about how he was taking time out of his busy day just to play music for us. That no one was really sitting and listening but us, but he still did it. He didn't get paid to do it, he just did it because he wanted to show his love and concern for complete strangers. Just when I think people can't get any worse, there is someone there to show me that there is good in this world, and though they may not be as loud and in your face as the bad, there is just as much good. I felt a lot of peace, and just knew that something would work out. Money and all that come and go, and that no matter what happens in this world, we will always have eachother for eternity. I hope that I am being like that guy who is in the lobby playing music, and that the world is a little better because I am in it.
Tuesday, June 15, 2010
You had a pretty rough night yesterday. You got really sick and threw up everything, even the food they feed you through a tube. I was really worried about you, because you weren't having too many problems before. So we took it pretty slow today, and gave you just apple juice, and started your feedings through your tube again, and you tollerated it so far. So that made me pretty happy. We got to take you to music time today in the playroom. Then Aunt B met up with us, and she just got back from a trip, and she brought you a Sheep that BAAA's. We got to go out on the Deck after that. It was a perfect day outside. They are talking about maybe sending us home by next Tuesday. When we get home there is still a lot of healing, and doctors appointments, and medicines you will have to deal with, but there's no place like home.
Monday, June 14, 2010
We have finally moved to the next level of care, and I have a lot of mixed feelings. I got so comfortable being in the PICU, that it just feels like that is where we should be. Change is hard. It just is. There is no way around that. But we can't grow if we don't change. The great news is that your skin grafts are looking great! That is something to be really grateful for. I find myself getting so caught up in the small things, like you not tolerating eating today, and I really forget the big picture. I remember that day they told us you were probably not going to make it. There was so much chaos, and it is still such a blur to me, but at the same time there was so much clarity. I knew in a second what was important. It is funny but I found that literally nothing was important but us, and the memories, pictures and videos that we had together. Clothes, bills, work, cars, house, eating, nothing really was important. Try to remember that in times that you get so caught up in the small things, that if you are creating good memories, and surrounded by the ones you love, nothing else matters.
Sunday, June 13, 2010
Well tomorrow we are supposed to be transfered to the next level of care. This is the final stretch, and I am more than ready to pack up and head home. The doctors are going to look at your skin grafts tomorrow and see how they are healing, and if your body is accepting them. I am praying with all my heart that everything will go well, because I am just so ready to go home. As I was sitting up in your room today, I was thinking about how I wanted everything to go perfectly tomorrow, and the thought that came to me was, it was going to be ok. Even if your skin grafts fail, and your kidney's don't return to full function, and you have to be on blood pressure medicine for the rest of your life. It was going to be ok, because we are together. Even if it is at a hospital, and far away from everyone we love, it is ok, because we have eachother. They have church in the hospital, and it was the first time we got to take you to church in the last couple of months. The opening hymn was "Nearer My God to Thee". I couldn't make it through the song with out crying, because I am so grateful for this experience to realize how much you mean to me, and how much closer it has brought all of us a little closer to God. When my Grandpa died, they sang that song at his funeral, and it is common to sing that song at funerals. So when I heard it, it also made me so grateful that God spared your life. I love you, and I am so happy that we have eachother.
Saturday, June 12, 2010
You got so much sleep last night! I am so glad that you are getting a good amount of sleep. They moved us to a different room in the ICU. You shared it with another little boy. I asked the nurse if we could have our own room because the little boy they put you next to was about your same age, and was crying a lot, and it was scaring you. So they moved him. But it is good that they moved us because it means that you are getting better. On Monday they are going to move you on to the next level of care, out of the ICU. You were able to keep down some food today, so that is even better for you. You have been off the machiene that cleans your blood for over a week now. They look at your blood everyday to see if you will need it again, and all the numbers keep getting better and better. You might not need to go back on it ever again! They also took the oxygen off. I just can't believe how well you are doing. We are just praying that your skin grafts are healing well and your body is accepting them.
Friday, June 11, 2010
We painted your nails today, and put on pretty smelling lotion, and the lady that brings toys everyday brought you some sun glasses, and she also made you a badge like all the doctors and nurses have. You also got to drink some chocolate milk, and we listened to music. You started dancing to the music, like you always do. Then we had to change the big band aid on your back, and you did so well. You were so brave, and sat up very still for us. I am so proud of you. You are doing fantastic. All the numbers are showing that your kidney's are starting work again, because it is filtering out more of the bad stuff in your blood. You have a lot more energy today then you have had this whole time. It is so good to see your personality again.
Thursday, June 10, 2010
After you woke up from surgery yesterday, the doctors thought that you were in too much pain to breathe on your own. So they left the breathing tube from surgery in over night. Later tonight we decided that you would do better with it out. And so far you are doing really well. They are saying the first three days after the surgery are the most painful. So hopefully we can get through the next couple of days with out to much complications. It is the worse to see you struggle in pain, and know there is nothing I can do to stop it. But I am finally seeing a light at the end of this long tunnel! I am so proud of all of us for how far we have all come, emotionally, spiritually, and for you physically.
Wednesday, June 9, 2010
You got your skin grafts today. I hate everytime you go into surgery. I look at you and just wish that we could walk away and not do it. But I know that I can't just walk away from this. I know that in this life we have to endure to the end, no matter how hard the opposition is. And our lives are just series of enduring to the end, until we reach the ultimate end. I hope you are always proud of the road you have traveled, because it has been an incredible one already. As you grow up and have to deal with these skin grafts, and being different from everybody else, I hope that you can embrace it, because it is a sign of how special you are, and how hard you have already worked to be where you are at.
Tuesday, June 8, 2010
Today you got to drink some water, and have a slushie for the first time in almost a month and a half! You loved it. You kept asking for more, and you drank 2 whole glasses of water, and half a cup of slushie. We still don't know if they are going to do your skin grafts tomorrow or Friday, but it is looking more like Friday. Your schedule is all messed up now, and you have your days and nights mixed up. So we have been trying to get you back on your schedule. Dr. Larsen stopped by today, and she is going to use some pictures of you to help people learn about what you went through, so that other doctors can better help kids that get sick like you did. We were lucky enough that we got pictures of everyday that all this happened.
Monday, June 7, 2010
They had a dog named Bauer come and visit you yesterday. There are people that bring their dogs to help the kids to feel better. Bauer was so sweet and you loved seeing him. We also got to go outside again today! It is so nice to get outside and go to the garden. The doctors came by and said that they are going to do your skin grafts on Wednesday or Friday this week. Since you got so sick, your body stopped blood flow to your legs. So some of your skin died. We already cut that out, and now they are going to take skin from somewhere else and put it over the spots that died. I am so excited to get you back home and playing, and running around again. They are saying after we do the skin grafts it will be another 2-3 more weeks then we can go home.
Sunday, June 6, 2010
You are still of that machiene that cleans your blood. You will probably have to go back on it in a little while though. Today we went for a ride outside! It was so fun, and sunny and nice. They have this little garden here that has a waterfall, and the birds come and take a bath in it. It also has flowers and trees. You loved watching the birds, and you kept pointing at them. I think it was really good for all of us to go out to the garden today. Other than that it was a pretty slow day, full of watching movies, playing, and reading books. Today Mommy went on the TV to ask people to donate money to this hospital. I hope that by sharing your story it can in some way help other families and little kids that are sick.
Saturday, June 5, 2010
You are amazing. Last night you peed a lot more. You keep amazing the doctors. They are trying to keep you off the machiene that cleans your blood tonight because you have peed so much, that they think that you might not need it any more. If you do well being off that machiene they might be moving us to a different level in the hospital! Today you were watching tv, and just chilling and crossing your legs. I thought it was so cute. Daddy was being silly today and dancing around, and you smiled and laughed. You also are shaking a lot less. I can't believe how far we have made it. I look at you and tears come to my eyes, because there was a time that I thought I wouldn't get to see you any more, and it is just so wonderful to have you in our lives. You are the best thing that has ever happened to daddy and I.
Friday, June 4, 2010
Yesterday you went into surgery to take out some more dead skin. When you came back they said that you might be ready for your skin grafts by next week! I am so happy because this means that we are one step closer to going home. You also have been peeing a lot on your own. That means that your kidney's are starting to work again. Only time will tell if you will regain all your kidney function, but all the doctors think that you have a good chance. You are doing so well, and you play all day, and talk to us. It is so good to see you be yourself again.
Thursday, June 3, 2010
We got to go for a wagon ride today!!! It was so much fun, and you actually said, "fun". We walked to the end of the hall, and they have this great big window to look out. We sat there looking at everything for about 10 minutes, then you got really tired, so we went back to the room for a nap. Today you are going into surgery again for your legs, and your fevers have come down. Today has been a really good day so far. I am so happy to see you acting like yourself again. I missed you so much.
Wednesday, June 2, 2010
I want to tell you Nessa, that you are our miracle. I have experienced a miracle through you. We prayed to God to let you stay with us, and even though everything medical said that you should have died, you were able to stay. Now that we know that you don't have a spleen that is even more evidence of our miracle. From what we have heard it is basically unheard of for someone to live through this bad of a disease with no spleen. My heart is so full of love and adoration for our Heavenly Father, and I will never look at life in the same way. I saw a mom and her little boy today at the store, and it reminded me of you and I. I always remember getting so frusterated when you would cry in the store, or not listen to me, and as I watched this mom, it made me so grateful for this experience with you. That hopefully I can cherish more of our days together, and try to forget about the stuff that in the end doesn't really matter. How I would love to have you at the store again, and trying to get you to sit down in the cart. I love you little one, and there is no one in this world who could make me more proud right now. You are doing so good, and love to play with your doll house. Today was really slow, and we mostly played and slept.
Tuesday, June 1, 2010
This was a fantastic day! You sat up in bed, and played with the little boy and little girl that Nanna bought for you. You talked to me, and said please and signed it at the same time, and you signed thank you to Dr. Hubbard. You also were playing pretend with your dolls. They let me give you some water on a sponge, and you drank it all up. Then after you suck out all the water you asked me for more! I am so happy and proud of you. I was so afraid that all of this would have really hurt your brain, and that you would be very different at the end of this, but I can see you are still the same little girl and remember everything that we have taught you. You truly are an incredible person, and I feel so fourtunate to be your mommy. They also changed the bandages on your legs, and the doctors said they are looking really good. So they need to go into surgery again in a few days to take out a little more of the bad skin.
Monday, May 31, 2010
Since the bug you got was so bad, you have been in a lot of pain since we got here. So they have put you on some pretty strong drugs. When you are on these strong of drugs, for as long as you are, it is hard for your body to deal without them. Yesterday they tried to slow down the amount they were giving you, and you didn't like it very much. You were up most of the night being really shaky, and mad, and sweaty, so they decided to go back up on your pain medicine to help your body handle coming off of these medications. So then today, you were really tired, and slept literally all day long! We were hoping to take you on a wagon ride around the unit, but you were just too tired. So maybe in a few days we can try again. Right now your legs won't stop bleeding, from the last time you went into surgery. That is the worry of the day, how to make your legs stop bleeding, without hurting other parts of your body. But I remember when we first got here, we had so many worries, and it is very nice now to only have to worry about one or two things at a time.
Sunday, May 30, 2010
You are doing so well! You are pretty scared of all the nurses and doctors. Anybody that walks into the room you keep a close eye on them. When you are sick of everybody you will take the blanket, and with shaky hands you pull it over your head. It is the cutest, saddest thing I have ever seen. It is cute, because it means that you are still the same in your head. Your sickness can destroy anything that your brain controls. So we are so happy to see that you are still the same. But it is also pretty sad because it is hard to see you be scared of everybody, and not understand what is going on. Another thing that you have to have is your Froggy in one arm, and your bear in the other. You have enough of your tubes disconnected that I was able to hold you in my lap today. Despite being so sick you are still the same stubborn little girl. It has always amazed me that you always seem to know just what you want. You never hesitate in expressing what you want, but it is that kind of attitude that has gotten you through this whole thing.
Saturday, May 29, 2010
Well you have a little bit of a fever today, but that is normal because of your surgery yesterday. But they decided that it would be good for you to sit up in a chair to help your lungs to get some exercise and for the rest of your body to get stronger. You are doing so good! You are holding up your own head, and all the doctors are really impressed with how strong you are. You are holding your froggy, and you won't let go of the little baby doll that Nana got for you. The doctors are so impressed with how well you are doing that they might take your breathing tube out. I am grateful to God for the miracle he has given to all of us. A couple of days ago I was pretty upset because I felt like you weren't moving forward in your healing. But when we ask God for a miracle, we cannot dictate when or how fast that miracle happens, we have to allow him to do it in his infinate wisdom, especially when we don't understand it.
Friday, May 28, 2010
Today the nurse that took you on the airplane from Idaho Falls to Salt Lake stopped by to see you! I really love this lady, her name is Kris. If she had not come at the exact moment she did, you would have died. I really felt like God sent the right person at the right time. She told me that you were a fighter, and was very suprised that you lived, because you were in such bad condition when she walked into the room. Later today you went into surgery again to get the bad skin on your legs removed again. You came back, and are doing well.
Thursday, May 27, 2010
Your fevers went down today. Most of the day your temperature was right where it needed to be. I went to the store today and saw this stuffed dog that looked like Maxie. You love to sleep with a stuffed animal under your arm, one by your face, and then we use another one to hold up your breathing tube. Tomorrow they are going to take you into surgery again, and take off some more dead skin. We are hoping that this will be the last time they have to do it before you get your skin grafts. Today was pretty slow, but I am seeing you improve. When the physical therapist came today, she had you try to sit up, and you held your own weight for about 30 seconds! That is pretty strong for someone who has not used any muscles in more than a month!
Wednesday, May 26, 2010
Yesterday and today have been really hard for mommy. You still have fevers, and when they look at your blood it looks like your body is starting to fight another infection. They want to go back, and remove some more stuff from your legs, because some of the tissue doesn't look so good. I have watched you get better, then worse, better then worse, and I am sick of having to see you look at me, with tears in your eyes, and not understand what is going on, and why I am not helping you. I get really mad that you have to go through this. Yesterday I just couldn't think of anything to say that was good or positive, so I didn't write anything. Today I thought I should let you know that it is ok to be angry sometimes, but the important thing is what we do with that anger. It is ok as long as we are able to let it go. Go ahead, and feel angry, and after you have felt angry, let it go. This is much easier said than done. But I am trying my hardest right now to let it go and move forward with you, even if it is so slow that it feels like we are not moving at all. I found a positve for today, it is bingo day at the hospital, and you got another blanket!!! I feel like you can never have enough blankets. Your daddy and I said that at the begining of all this that it would either make us or break us. Well I talked to your daddy, and we are both still voting for make us.
Monday, May 24, 2010
Well they didn't take the breathing tube out today. They said that we might do it tomorrow. You slept all day. Not much is changing right now, you just are getting a little bit better everyday. We did start your feedings again today. We have started and stopped them alot because you have been having so many problems, but the doctors are hopeful that you will stay off the breathing tube, and stay on the feedings. The very first day we were here your doctor's that were in charge were Dr. Larsen and Dr. Hubbard. They are two more of my favorite people here. The first night that you were so sick it was Dr. Larsen that had to tell us that bad news that you were probably going to die. I know it was really hard for her to have to tell us that, but she did it anyways, because it was better for us to know. I really appriciated that she would put herself in a tough position, to help us try and understand what was really happening. You should always do what is right, especially when it makes you uncomfortable, and when it is not easy. If it were not for these two doctors I know that you would probably not be here with us today.
Sunday, May 23, 2010
Today was a really slow day. You spent most of the day sleeping. They are talking about taking the breathing tube out tomorrow if you are not having any more fevers. Your nurse today was Beau. He is one of my favorites. The second day you were here, he was watching you while your nurse for the day went to lunch. I was so grateful to all the people here for what they were doing for you, and I told him that I had no idea how to pay them back. He told me, "All you have to do is send us a picture of when you get home and she is playing around." That touched me so much because it really showed me how much everyone here cares, and how much they were going to do try and save you life, even if the odds were not in our favor. That day things didn't look to good for you, they told us that you had a 10-15% chance to live, and it impressed me that even with those kind of odds they still were trying their hardest to make sure that they did all they could to save you. I hope you realize that there are people like this in the world. That people can and do have good sides to them, that make them want to help in extrodinary ways, without personal gain.
Saturday, May 22, 2010
I can tell you are starting to feel better, because you are trying to pull out your tubes, and you want us to hold you. Nanna, Papa, and Daddy came up this weekend, and today you looked at them and played with them. Nanna didn't want to leave your side! When you were really sick I saw this baby doll, and knew you would love it. Daddy didn't like it, and didn't think that you wouldn't like it. So I showed you the baby today and you were looking at it and holding it's hand, and Daddy tried to get you to play with another toy, but as weak as you are, you pick up the toy that he gave you, with your arm shaking, and gave it back to him, and reached for the baby! It made me so happy, because it is so much like you. You have always just known what you want, and you won't settle for anything less. It is so good to see your personality again.
Friday, May 21, 2010
Your fever finally broke today! We are so happy because that means that the bad bug you have might be going away. We just have to keep hoping and praying that you don't get any more infections. They told us that you were born without an organ called a spleen. One thing a spleen does is to help you fight infections. They say that this is the reason why you probably got so sick with this. So from now on you will have to take antibiotics everyday for the rest of your life. It would be really easy to say that this is so horrible and hard to deal with, but I don't think that we give enought credit to our modern day miracles. Not just the obvious miracle, that you lived, but everyday miracles. That we wake up, and can breath on our own, and be able to talk, and the list goes on and on. We get so caught up in having our life go so perfectly that we forget about all the miracles that are going on around us all of the time. Never feel sorry for yourself because there is always something to be grateful for. Nothing is for sure, every minute of every day is a gift, and we need to give credit to God for all that he does for us.
Thursday, May 20, 2010
Late last night they decided that maybe the dead skin on your legs, that went black, was making you sick. So they took you into surgery to cut out the dead parts. You are still pretty sick today with fevers and chills, but the doctor said that is normal for the next few days until your body has a chance to fight the infection. You are pretty tired most of the time so you sleep most of the day, but once in a while you open your eyes, and we will read a book. Your favorite is a robot book, and a book called "Tilly Bee" that Aunt B bought for you. You like to feel the pages.
Wednesday, May 19, 2010
Last night mommy was really sad because they had to put the breathing tube back in. You were just too tired from fighting the infection that you were having a hard time breathing. You are really sick with fevers, and you keep shaking. We are putting wet washclothes on your head to help cool you down. The doctors are trying to figure out what is wrong, but don't know what it is for sure yet. I don't know what to say but that I wish I could fix this. I guess we just have to continue to have faith and keep praying.
Tuesday, May 18, 2010
Last night was a rough night. You were shaking and had a fever all night. The doctors thought that they might have to put the tube back down your throat, but you did well enough that they waited. The same thing happened again this afternoon. When they told me you would have to have the tube again this afternoon, I started to cry. Just after that you started to breathe better, and so the doctors waited again, and ever since then you have been doing ok. I keep hoping and praying, that we can move forward and get you feeling better. They had to put a funny thing on your nose called a CPAP. It helps you to get more air. It is just like papa's nose breather. You are twins!
Monday, May 17, 2010
This was probably one of the best days we have had at Primary Childrens Hospital. We took the breathing tube out. You were hitting a ball that Taylor gave you, and trying to say Aunt B's name. You can't talk very well because your throat is still pretty sore. You are doing so much better with the tube out this time. One of the girls that works here brought a toy for you to blow into and you loved it! You tried so hard to hold it up and blow on it. I keep underestimating how strong you are. You had a great time playing and tried to smile. You have been sick for so long that it will take time for you to remeber how to do things that you could do before. But I know you will always be persistant and try your hardest.
Sunday, May 16, 2010
You had a really hard day today. The medicine they give you to help with your pain wasn't going into your body the right way, so you started out the day feeling a lot of pain, and shaking. It broke our hearts because you looked right into daddy's eyes and started to cry. You can't make any noise with your mouth because the tube is in your throat, but you had tears running down your face. All we wanted to do was take the pain away, but we couldn't. I wonder how difficult it is for our Heavenly Father to sit and watch us suffer, as we go to him with tears running down our face, and all he can do is stay by our side. I can't imagine how badly he wants to take our pain away, but knows that what we are going through will eventually make us stronger. I know how difficult this is for all of us, but eventually this will make us all stronger.
Saturday, May 15, 2010
You had a really busy day today. They use tubes to pull the blood out of your body, and to clean it in the machine. One of those tubes had a blood clot in it, blocking the flow into the machine. So they had to take you into surgery to put in a new tube. While they were there they took away some of your dead skin. So your legs are starting to look really good now. Then we had to take you into get a picture of what your brain looks like, to make sure there wasn't a bad bug up there making you sick. The picture of your brain looked fine, and they didn't see anything bad. We are seeing so many blessings. You are a living example of answers to prayers. Your name is being mentioned in prayers to our Heavenly Father from so many people, everyday, and we are truly being blessed because of it. We love you so much.