As I sit here and finally get to write, my heart is extremely full! A year ago on May 31st, we were told by my amazing OB, Dr. S, that something wasn't right with Madison. He had done an ultrasound the previous week and her bladder was enlarged. So, he decided he needed to do another one this appointment...only to find the same thing...her bladder was still enlarged. He immediately called the University of Utah hospital where Colt and I would go the next day to have an MRI. We met with Dr. K, one of their radiologists, and she should us where to go. She was amazing! I had the MRI to look at the baby and she immediately knew what she had, they had just written about it in a textbook. They diagnosed her with a Persistent Cloaca and told us that we are only 1 of 5 cases the U has ever seen. Well, if that doesn't freak a mother out I don't know what would. The then told us that we needed to meet with the OB at the U that would be delivering me so that Madison could immediately be taken to Primarys. We went and met with Dr. C. I liked her but she wasn't Dr. S. We were then told that we should go take a tour of Primary Children's NICU so that we could be familiar with it. (The tour did easy my anxiety a little.) They were so nice and welcoming. We felt like part of a family. We talked to one of the NNPs and told them Madison's diagnosis. They told us that was something they saw fairly often (1 in 20,000 births). Again, that eased my anxiety a little more. This began our amazing journey!
After meeting all of these new amazing people, we thought we would have about 3 1/2 weeks to prepare for what life would be like. Well, Madison decided to come 12 days early. We left for the hospital at 4:00 am on June 10th. I was having labor pains in my back and they were coming about every 5 minutes. We got to the hospital and they put me in a room where they wanted to monitor me. I was there FOREVER and they weren't doing anything. Finally, about 10:00 am, Dr. C's midwife called to schedule my C-section for the following Thursday. I immediately called back to tell them that I was there already and that the nurses and residents working wouldn't do anything and I had been there for going on 6 hours. Within minutes Dr. C was there and she informed me that they were preparing the operating room. By 11:15 I was headed to the operating room to be prepared for surgery. Colt couldn't come in with me until I was prepared and they had the sheet up. He had to stand by me and hold the "urine bucket" incase I threw up. (They make you drink this nasty stuff so if you do throw-up it is sanitary...well, that is what makes you throw-up!!!!!) At 12:07 pm, our little Madison was born. They immediately took her away and sent her to the U's NICU. They prepared her for transfer and the Life Flight Transfer Team came and "walked her across the bridge." Before they took her though, I got to hold her for about 2 seconds because I thought I was going to throw up. She was so little and she looked so perfect.
Colt stayed at the U with me but constantly went to see Madi at Primary's. He would come and tell me what was going on. Well, needless to say the next few days were a rollercoaster ride. Our little angel had to have surgery the day after she was born. They had to form a stoma and mucus fistula so that she had a place to get rid of all the waste. When there were preparing her for surgery, they found multiple other problems and we would find out about each of them in the days to come. I still remember when Colt came back to the room on June 11th and I could tell something was incredibly wrong. I asked him what was going on and he kept saying nothing. I knew something was wrong so I continued to ask and he broke down and told me about Madison's heart defect that they had found. Didn't this little girl have enough problems? She didn't need one more thing! I remember a calming feeling come over me and I told Colt that everything would be okay and our little girl was in good hands. Through the days and weeks ahead we found that Madison had kidney problems, heart problems, bowel/digestive system problems, spine problems, and hearing problems. What a miracle she was!! After 5 days of Colt and I staying at the U, it was time to go home. We went to see Madison before we left and then took the long journey home. That was probably one of the hardest days I had experienced so far during this journey. Colt and I bawled the whole way home. I had to leave my brand-new-baby at the hospital! Gut-wrenching!
Over the last year, we have endured many things. I wouldn't trade any of them for the world. We have had three surgeries, countless doctor visits, many prayers and blessings, and met many amazing friends along the way. (We aren't finished yet!) As we celebrated Madison's one-year-old birthday yesterday and friends and family came to visit, I can't help but think about the lives she has already touched! She is one amazing and happy baby! I am so glad that she is mine! I am also glad that we have such amazing family support! We are so lucky to live close to family and see them on a daily basis.
A year ago I don't think that I could know the amazing journey that we would have to take. I didn't think I could do it! I knew it would be hard but I knew that if I endured it well, it would be worth it! It is so worth it! A day doesn't pass when I don't thank my Heavenly Father for my amazing gift. She is a miracle and I am so glad that I am her mom. There are so many people that love her and I am so thankful for them. She is always happy and full of energy...she can get almost anyone to smile! She loves to wave, blow kisses, give kisses, eat, crawl, talk, and she wants MORE of everything! She is my angel and I am glad that I have been entrusted with her life. This last year has not been easy...and the next couple of years will not be easy, but I know that they will be worth it.
I am thankful to all of those that have been there for us. Please know that we are thankful for you. I am so thankful for the gospel in my life and for all that it teaches me. I would be so lost without it. I am thankful for the blessing of eternal families and I am so glad that my little family can be together forever. I am thankful for the knowledge I have of prayer and the opportunity I have to speak to my Heavenly Father anytime I want. I know that He knows me, He loves me, and He is there for me whenever I need him. He has helped me endure this trial and I thank Him everyday for it.
(Many pictures to come of the last couple events in our family!)
Monday, June 11, 2012
Saturday, February 4, 2012
Rollercoaster
I know that there are probably lots of people checking to see if I have updated yet. I decided that I needed to update my blog tonight and let everyone know what is going on and get stuff down before I forget.
The last couple of days have been an emotional roller coaster at the Flitton household. Monday I took Madison to Primary Children's to have pre-op work done. She received a chest x-ray and then had to have blood drawn. The phlebotomist that was doing her blood work had NO idea what she was doing. They had to poke both hands, one of her veins in the middle of her arm (opposite side of her elbow), and her heel. I felt so bad for her because the dug, and dug, and dug. She was SCREAMING bloody-murder. I have never heard her scream like that. I then went to meet with the nurse practitioner so that she could do a physical. I got to the desk to check in and was told that her surgery had been moved because they performed a heart transplant and were unable to do it on Tuesday. I was a little upset to say the least. We were told that they were going to try and schedule it for Friday, February 3rd and not to do anything until they called. They never called so I decided to call them on Thursday to see if it was still on. They informed me that it was and told me that I needed to take her down to have a second round of pre-op labs and her physical. I had to go to work and Colt had the day off so he took her down and had her work done. Everything looked great so the surgery was still on.
Friday, February 3rd we had to have Madison to the hospital by 6:00 am to prepare for surgery. We got up and left the house about 5:15 am. We went to same-day surgery and checked in. They took us to a room where we put her scrubs on and prepared for surgery.
She knew what was going on because every time Colt or I put her down she would scream bloody-murder. We then waited for the surgeon to come in and talk to us. He came in and told us a bunch of statistics for problems that could happen (Good thing to tell a mom of a baby about ready to have heart surgery.) and used words too big for my vocabulary to describe the procedure and what he would do. After he left we waited for the anesthesiologist to come and talk to us. He was there shortly after the surgeon and told us some other statistics of what could happen and on his end and then showed us to where we were going. At about 7:30, we walked down the hall, the surgeon scanned his badge to the operating area, looked at me and said, "I will take her from here." He took her, she started to cry and say, "Da, da, da," and we walked down the hall to the waiting room. I bald the whole way and so did Colt. That was the hardest part...besides waiting. We checked in at the waiting room so we could receive updates and decided to go get breakfast at the U of U cafeteria, much better than Primarys! It is so hard to go from taking a baby with you everywhere to all of a sudden being back to just the two of us! I hated it to say the least. We then went back up to the waiting room. Sheri came to help pass the time and then Colt's mom also came. It was so nice to have people to talk to to help the time pass by. We received a few updates to let us know what they were doing. The let us know about 9:00 am that they had started the surgery and they would call later and inform us of how she did. (We were told earlier that she would be in surgery for 3-5 hours.) At about 1:00 pm they called to inform us that surgery just finished and that the surgeon would be coming up to let us know how it went. Dr. Burch, Madison's surgeon, came and informed us that surgery went well and she was headed to the CICU. After Dr. Burch came, Dr. Bateman, the anesthesiologist, came to let us know how she did with his portion. He let us know that she is a fighter and VERY STUBBORN...I guess that means that she is my child because I am very stubborn. He said he was very impressed with her and her willpower. I am so thankful for that as well. Dr. Burch told us that we would be able to see her in about 45 minutes but they would let us know when they were ready. Well, it ended up being about an hour and a half before we got to see her. I was SO anxious and couldn't wait. About 2:15 or so we got to finally go and see her. She looked better than I expected her to and I am also grateful for that.
She has 3 chest tubes, 1 breathing tube, an arterial line, an IV in her hand, an IV in her neck (a central line), pacemaker wires, and the normal wires that they get when they are in the hospital. She is such a miracle and I can't believe how blessed I feel to be her mom.
We couldn't get her to wake up because she was so sleepy so they had to wait until 6:50 pm to extabate her, meaning take her breathing tube out, even though she was breathing on her own.
She is a little unhappy because her throat is really sore and the anesthesia is starting to wear off.
At 6:00 am on Saturday, February 4th we received a call from the nurse to ask us about formula. They were ready to start feeding her and she wasn't enjoying the Pedialyte. We told her what we used and she fed her. I then called about 10:00 am to find out how things were going. They informed me that they had taken 2 of the chest tubes out and she took the IV out of her right hand (which she still needed.) They also took her off most of the medicine and she was only on a diarrhetic, an antibiotic, and lortab for pain. They also couldn't keep her full...she was constantly wanting to eat. The nurse said that they didn't have any spoons for infants and if I would bring down a spoon we would try to give her some solids. Well, at 12:00 pm we gave her a thing of squash, half a thing of bananas, and an ounce of milk. She then feel asleep for 4 hours. When she woke up, she was hungry. I then fed her a thing of squash, a thing of carrots, and 2 1/2-3 ounces of milk. I think she is a better eater now!!!
You can see the huge difference from right after surgery. She is a little swollen and itchy from the morphine but doing remarkably well. Plus, I got to hold her today! That was the best feeling ever.
I can't believe how amazing Madison is. She is a fighter! She is our miracle baby and I am so glad she is mine. The nurses and doctors are amazed and her and her drive to get better. She wants all of her tubes gone and she is willing to do what she needs to get rid of them. My mom came up and saw her today and said that she is going to call her M&M now, it stands for Miracle Madison or Madison the Miracle.
There have been multiple people tell us that we are way stronger than they would've ever been. I don't think that Colt and I are any stronger than anyone else, we have just been given a miracle baby that has multiple issues and trials and we have an amazing Heavenly Father who is always there to help us. He didn't give us a trial that we couldn't handle, He has helped us get through the trial we have been given. My Heavenly Father and Savior Jesus Christ are the reason I can get through this hard time in my life. I am so thankful for Them in my life and the strength, courage, and ability to go on that They give me. I know that there are people on the other side of the veil that are helping and have helped her through the last couple of days. She is being watched over and protected and I know that she is still here because I need her! I need her here to help me become a better person. She teaches me patience, love, compassion, gratitude, and many other things that I may not otherwise experience. At one point in my life, it was my brother, Hunter, that made me want to be a better person so that I could know him and live with him someday and now it is Madison that makes me and helps me to be a better person. I know that she is one of our Heavenly Father's chosen daugthers and I am glad that I get to be her mom on this earth.
The last couple of days have been an emotional roller coaster at the Flitton household. Monday I took Madison to Primary Children's to have pre-op work done. She received a chest x-ray and then had to have blood drawn. The phlebotomist that was doing her blood work had NO idea what she was doing. They had to poke both hands, one of her veins in the middle of her arm (opposite side of her elbow), and her heel. I felt so bad for her because the dug, and dug, and dug. She was SCREAMING bloody-murder. I have never heard her scream like that. I then went to meet with the nurse practitioner so that she could do a physical. I got to the desk to check in and was told that her surgery had been moved because they performed a heart transplant and were unable to do it on Tuesday. I was a little upset to say the least. We were told that they were going to try and schedule it for Friday, February 3rd and not to do anything until they called. They never called so I decided to call them on Thursday to see if it was still on. They informed me that it was and told me that I needed to take her down to have a second round of pre-op labs and her physical. I had to go to work and Colt had the day off so he took her down and had her work done. Everything looked great so the surgery was still on.
Friday, February 3rd we had to have Madison to the hospital by 6:00 am to prepare for surgery. We got up and left the house about 5:15 am. We went to same-day surgery and checked in. They took us to a room where we put her scrubs on and prepared for surgery.
We couldn't get her to wake up because she was so sleepy so they had to wait until 6:50 pm to extabate her, meaning take her breathing tube out, even though she was breathing on her own.
I can't believe how amazing Madison is. She is a fighter! She is our miracle baby and I am so glad she is mine. The nurses and doctors are amazed and her and her drive to get better. She wants all of her tubes gone and she is willing to do what she needs to get rid of them. My mom came up and saw her today and said that she is going to call her M&M now, it stands for Miracle Madison or Madison the Miracle.
There have been multiple people tell us that we are way stronger than they would've ever been. I don't think that Colt and I are any stronger than anyone else, we have just been given a miracle baby that has multiple issues and trials and we have an amazing Heavenly Father who is always there to help us. He didn't give us a trial that we couldn't handle, He has helped us get through the trial we have been given. My Heavenly Father and Savior Jesus Christ are the reason I can get through this hard time in my life. I am so thankful for Them in my life and the strength, courage, and ability to go on that They give me. I know that there are people on the other side of the veil that are helping and have helped her through the last couple of days. She is being watched over and protected and I know that she is still here because I need her! I need her here to help me become a better person. She teaches me patience, love, compassion, gratitude, and many other things that I may not otherwise experience. At one point in my life, it was my brother, Hunter, that made me want to be a better person so that I could know him and live with him someday and now it is Madison that makes me and helps me to be a better person. I know that she is one of our Heavenly Father's chosen daugthers and I am glad that I get to be her mom on this earth.
Tuesday, December 20, 2011
Update from a previous post
I found the quote that I wanted to share in a previous post and it so applies to our life and everything we do! I don't know how said it but here it is, "Let's give thanks if only for all the bad things that are never going to happen." This is how I feel with our little miracle. We need to give thanks for all the things that she will never have to go through. It makes our trials easier to focus on the positive.
I was also going to share some pictures of our trip to the hospital in September. Well, here they are FINALLY!
This is a picture of Madison's hand with the IV.
She loved to suck on the IV...it kept her busy.
After she received the IV she feel asleep. I was wishing I could sleep too because we were in the ER at Primary's from 1 am to 8 am.
This was in her room while they were watching her infection.
As you can see, she isn't even phased by what was going on. She is so happy ALL the time.
She loved the swing that they brought to her room.
This picture has nothing to do with the hospital but it is the picture we got taken for Halloween. This was her cute Halloween outfit.
This was her first time meeting Santa. She looks a little scared but she didn't even cry.
Like I have said in every post...I LOVE THIS LITTLE GIRL and her fun personality that is starting to develop.
Long time coming!
I have been thinking about posting for a long time! Life just seems to be flying by and I seem to be missing some important milestones in the Little Misses life. She is so fun. As I was sitting at Primary Children's yesterday waiting for the cardiologist for TWO hours, yes TWO hours, I was trying to keep a 6 month old occupied. I pulled out my cellphone and we were watching videos of Madi from September. I didn't realize how big she is and how much she has grown in 3 short months. She is babbling up a storm, almost sitting on her own, loving books, happy as ever, Miss social butterfly, loves her cousin Daxton, and so much more.
We went to her 6 month checkup and she is still just a little peanut. She only weights 12 lbs which is less than the 5 percentile. She is 24 and a half inches long which is the 20 percentile and her head is 16 inches which is in the 25th percentile. She is still wearing 3 month clothes but that is good because then I don't have to go buy new clothes which I love.
We also went and had her 6 month pictures taken. I have been trying to find a place to go that is really reasonable and I found a place. They were amazing and they are so reasonably priced. They are called Foto Fly in Draper and they only cost $79 for any shoot with 15 people or less. So, here are some of Madison's pictures.
The photographer, Tia, said that she has never had a baby happy the whole 45 minutes. She was shocked at how happy Madison was the WHOLE ENTIRE TIME! She didn't fuss once. This is her everyday unless she doesn't feel good! She is such a good baby and you would never know anything was wrong with her. Colt and I love her so much and we are so lucky to call her ours!
We went to her 6 month checkup and she is still just a little peanut. She only weights 12 lbs which is less than the 5 percentile. She is 24 and a half inches long which is the 20 percentile and her head is 16 inches which is in the 25th percentile. She is still wearing 3 month clothes but that is good because then I don't have to go buy new clothes which I love.
We also went and had her 6 month pictures taken. I have been trying to find a place to go that is really reasonable and I found a place. They were amazing and they are so reasonably priced. They are called Foto Fly in Draper and they only cost $79 for any shoot with 15 people or less. So, here are some of Madison's pictures.
Tuesday, October 11, 2011
Life isn't fair!
This is a post I have tried to post many times. It has been erased a few times and I hope I can finally get it down. Life at the Flitton home doesn't seem to slow down. Just when I think we might start floating again and we might be able to build our savings back up or we might be able to have medical bills all paid, something else happens! The last couple of weeks are no different.
Two weeks ago tomorrow (September 28th), Madison woke up at 1:00 in the morning screaming. She never does that. I went in to get her and I tried to feed her. When she wakes up that is all she seems to want, food! She wouldn't take her milk and she kept crying. I finally calmed her down after what seemed like hours later. I decided I was going to take her to the spare bedroom and lay down with her. She was struggling to breathe and I didn't want to put her in her crib where I couldn't hear her well! I walked into the spare bedroom and had an overwhelming feeling that we needed to take her to the ER. I went and woke Colt up and told him. We both threw on some clothes and headed to Primary Children's. We arrived at the ER around 1:30. They called Madison back and put her on monitors. They decided to do a urine sample, blood work, and give her an IV.
Side note: I wanted to die when the EMT working in the ER tried to give Madison her IV. He dug and dug and dug. Madison screamed and screamed and screamed. It was gut wrenching!! He tried for about 5 minutes or so and finally decided that he couldn't get it. (She still has a bruise on that hand today!) They called the IV team in and they put an IV in her hand in about 2 seconds. She didn't even cry. Why didn't they have them do it in the first place???? (There is no bruise on that hand!!) Madison is so forgiving too. After the IV team gave her the IV, she looked up at the guy and gave him the biggest smile! She acted like nothing ever happened to her. I wish I was more like her.
Colt and I had been up since 1:00! We were wondering what they were doing. They couldn't do much until the doctors were in around 7. We were working with a great resident in the ER who was very informative and very good at making sure we were as comfortable as we could be. (The ER was FREEZING!!!!!) At about 8:30 they finally admitted her to the infant unit.
We went to the infant unit and they gave her a really strong antibiotic because they found that she had a horrible UTI. (Urinary Tract Infection for those that don't know what a UTI is.) Thirty minutes after she had the antibiotic I noticed that she wasn't herself. Her hands started to turn blue, her face turned white, and her body turned grey. She acted like she couldn't breathe. I went and got the nurse and told her something wasn't right. She sent me down the hall to get breakfast. While I was getting something to eat, her saturation level dropped. They had put her on oxygen. I was a mess at that point. I started to cry because there was nothing I could do to help my little girl and I knew that she was in a lot of pain!! The nurse called cardiology and they immediately came to her bedside. They ordered an echocardiogram right then. The nurse decided to give her some saline as well. After 5 minutes of the saline going into her body she started to respond and acting like herself again. The nurse told me that a lot of times the toxins from the infection go into the baby's body and they can't get rid of them so the saline flushes them out of their system.
They finally decided that they needed to move her to a unit where they could better monitor her heart. We ended up on the surgical floor where all of her doctors came to visit her. I love Primary's and how the doctors that have been working with Madison came to see her once they knew she was there, which was almost immediately. We spent three days at the hospital and Colt and I were able to spend the night with her. It wasn't ideal but at least I didn't have to leave my baby there! Friday my mom went down and stayed with her so that I could go to work! I am so glad that I have such an amazing mom who is willing to do anything for her kids and grandkids! Love you mom!
We returned home on Friday afternoon. Sometime that weekend, I don't really remember when, our house seemed to be a little cold. We fiddled with the thermostat to find that it wasn't heating up! We called my dad to come look at it and he couldn't find the problem either. So, we called a HVAC guy to come look at it..sure enough, we needed a new furnace! At this point I began to wonder what on earth I need to learn from all of this! We just have one thing after another! So, yesterday they came to finish putting in the carpet for our basement because of the flood (vandalism) and the furance guy replaced the furnace. What's next??
I have pictures of Madison in the hospital but they are on my phone so I will have to post them later! They show how happy she is even when she is in pain or struggling! I love my sweet girl and I am so glad that I have an amazing husband, Colt, to help me through these hard times.
I found a quote at my house the other day that so applies to us. I will put it on here as soon as I get it the exact quote!
Two weeks ago tomorrow (September 28th), Madison woke up at 1:00 in the morning screaming. She never does that. I went in to get her and I tried to feed her. When she wakes up that is all she seems to want, food! She wouldn't take her milk and she kept crying. I finally calmed her down after what seemed like hours later. I decided I was going to take her to the spare bedroom and lay down with her. She was struggling to breathe and I didn't want to put her in her crib where I couldn't hear her well! I walked into the spare bedroom and had an overwhelming feeling that we needed to take her to the ER. I went and woke Colt up and told him. We both threw on some clothes and headed to Primary Children's. We arrived at the ER around 1:30. They called Madison back and put her on monitors. They decided to do a urine sample, blood work, and give her an IV.
Side note: I wanted to die when the EMT working in the ER tried to give Madison her IV. He dug and dug and dug. Madison screamed and screamed and screamed. It was gut wrenching!! He tried for about 5 minutes or so and finally decided that he couldn't get it. (She still has a bruise on that hand today!) They called the IV team in and they put an IV in her hand in about 2 seconds. She didn't even cry. Why didn't they have them do it in the first place???? (There is no bruise on that hand!!) Madison is so forgiving too. After the IV team gave her the IV, she looked up at the guy and gave him the biggest smile! She acted like nothing ever happened to her. I wish I was more like her.
Colt and I had been up since 1:00! We were wondering what they were doing. They couldn't do much until the doctors were in around 7. We were working with a great resident in the ER who was very informative and very good at making sure we were as comfortable as we could be. (The ER was FREEZING!!!!!) At about 8:30 they finally admitted her to the infant unit.
We went to the infant unit and they gave her a really strong antibiotic because they found that she had a horrible UTI. (Urinary Tract Infection for those that don't know what a UTI is.) Thirty minutes after she had the antibiotic I noticed that she wasn't herself. Her hands started to turn blue, her face turned white, and her body turned grey. She acted like she couldn't breathe. I went and got the nurse and told her something wasn't right. She sent me down the hall to get breakfast. While I was getting something to eat, her saturation level dropped. They had put her on oxygen. I was a mess at that point. I started to cry because there was nothing I could do to help my little girl and I knew that she was in a lot of pain!! The nurse called cardiology and they immediately came to her bedside. They ordered an echocardiogram right then. The nurse decided to give her some saline as well. After 5 minutes of the saline going into her body she started to respond and acting like herself again. The nurse told me that a lot of times the toxins from the infection go into the baby's body and they can't get rid of them so the saline flushes them out of their system.
They finally decided that they needed to move her to a unit where they could better monitor her heart. We ended up on the surgical floor where all of her doctors came to visit her. I love Primary's and how the doctors that have been working with Madison came to see her once they knew she was there, which was almost immediately. We spent three days at the hospital and Colt and I were able to spend the night with her. It wasn't ideal but at least I didn't have to leave my baby there! Friday my mom went down and stayed with her so that I could go to work! I am so glad that I have such an amazing mom who is willing to do anything for her kids and grandkids! Love you mom!
We returned home on Friday afternoon. Sometime that weekend, I don't really remember when, our house seemed to be a little cold. We fiddled with the thermostat to find that it wasn't heating up! We called my dad to come look at it and he couldn't find the problem either. So, we called a HVAC guy to come look at it..sure enough, we needed a new furnace! At this point I began to wonder what on earth I need to learn from all of this! We just have one thing after another! So, yesterday they came to finish putting in the carpet for our basement because of the flood (vandalism) and the furance guy replaced the furnace. What's next??
I have pictures of Madison in the hospital but they are on my phone so I will have to post them later! They show how happy she is even when she is in pain or struggling! I love my sweet girl and I am so glad that I have an amazing husband, Colt, to help me through these hard times.
I found a quote at my house the other day that so applies to us. I will put it on here as soon as I get it the exact quote!
Saturday, September 24, 2011
Miracles, Miracles!
Yesterday was a great day! I had a few doctor's appointments for Madison and I was a little nervous because I had no idea what to expect when meeting with the neurosurgeon. I had never met with him before and I was worried about Madison's spine.
I first met with Dr. Rollins, Madi's colon/rectum/reproductive doctor. He said that she looks great and we need to keep doing what we are doing. He also said to just treat her like a normal, healthy child. He did say that she does have 2 vaginas, 2 cervixes, and 2 uterus. But that isn't a concern. They will just take out the septum between the 2 vaginas and create 1. I guess they will leave the other stuff alone...they didn't tell me about them. He then proceeded to tell me what will happen for surgery. After cardiology give there clearance, they will go in and create Madison an anus. For three months we will have to dilate it to make sure that it stays open and doesn't re-close itself. After the three months, they will go in and do a "take down." This is where they connect everything back up and she should have a normal colon, rectum, anus. At that point they will see what muscles she has down there and will see if she will be able to function without training. (I pray she does!!) I guess time will tell.
Next, I went and met with Dr. Riva-Cambrin. He is Madi's neurosurgeon. When he came in he asked me questions and did a little exam on her. He was very pleased. He said by looking at her clinically, that means physically, and on the MRI, he knows she DOESN'T have a tethered cord, as of now. She could still get a tethered cord but there is a 70% chance she won't have to have surgery on her spine. He explained what exactly is going on with the bottom of her spine and a ligament that is there. The bottom is not formed correctly but he said that is really common for a baby with a cloaca. He also explained to me that she has NO tailbone. I asked what that meant and he said, "That just means that she can't come to you after skiing and tell you she broke her tailbone." I replied, "So, it isn't that important?" He said that it is a part of our bodies that we can live without. WHAT A MIRACLE!!
I can't believe how blessed this little girl is. Dr. Rollins said she is doing better than he expected and Dr. Riva-Cambrin said that she doesn't have a tethered cord. I am so relieved and so thankful for these daily miracles in our life. Madison is a miracle and a daily reminder to me of how lucky I am to be her mother. I know that she is a choice daughter of our Heavenly Father and I am so glad I am blessed to be her earthly mom. I have felt so much love from my Heavenly Father and Savior lately. I know they are watching over us.
This is off the subject, but yesterday while I was in the elevator going to visit Laurel in the NICU, I was talking to a mom. She had a baby strapped to her chest. She asked how old Madison was and I told her. I then asked her how old her baby was. She replied, "She is 7 months." "Wow," I replied, "she is little." The mom looked at me, almost ready to cry and said, "Yeah, she isn't growing and we can't find out why." The elevator door opened the mom got out and I said, "Good luck, you will be in my prayers." The doors shut and I continued up to the 4th floor. I wanted so badly to hug this poor mom and reassure her that everything would work out. As I was in the elevator by myself, I began to think about the blessings I have received. My Heavenly Father and Savior know me. They know Madison. They know Colt. They know all of us better than we know ourselves. They know that I could handle this precious blessing and trial in my life even when I think I can't go one more day. I know that they will help that poor little mom. She is one of our Heavenly Father's children and He loves her as much as He loves me. There are so many amazing stories at Primary's and all of those children are SO special. I love the spirit that I feel when I am at that hospital. It can be a sad place, but there are also so many amazing things going on there. I pray that little girl will be blessed and all will be well. Please keep all the children at Primary's in your prayers...they need them!!
I first met with Dr. Rollins, Madi's colon/rectum/reproductive doctor. He said that she looks great and we need to keep doing what we are doing. He also said to just treat her like a normal, healthy child. He did say that she does have 2 vaginas, 2 cervixes, and 2 uterus. But that isn't a concern. They will just take out the septum between the 2 vaginas and create 1. I guess they will leave the other stuff alone...they didn't tell me about them. He then proceeded to tell me what will happen for surgery. After cardiology give there clearance, they will go in and create Madison an anus. For three months we will have to dilate it to make sure that it stays open and doesn't re-close itself. After the three months, they will go in and do a "take down." This is where they connect everything back up and she should have a normal colon, rectum, anus. At that point they will see what muscles she has down there and will see if she will be able to function without training. (I pray she does!!) I guess time will tell.
Next, I went and met with Dr. Riva-Cambrin. He is Madi's neurosurgeon. When he came in he asked me questions and did a little exam on her. He was very pleased. He said by looking at her clinically, that means physically, and on the MRI, he knows she DOESN'T have a tethered cord, as of now. She could still get a tethered cord but there is a 70% chance she won't have to have surgery on her spine. He explained what exactly is going on with the bottom of her spine and a ligament that is there. The bottom is not formed correctly but he said that is really common for a baby with a cloaca. He also explained to me that she has NO tailbone. I asked what that meant and he said, "That just means that she can't come to you after skiing and tell you she broke her tailbone." I replied, "So, it isn't that important?" He said that it is a part of our bodies that we can live without. WHAT A MIRACLE!!
I can't believe how blessed this little girl is. Dr. Rollins said she is doing better than he expected and Dr. Riva-Cambrin said that she doesn't have a tethered cord. I am so relieved and so thankful for these daily miracles in our life. Madison is a miracle and a daily reminder to me of how lucky I am to be her mother. I know that she is a choice daughter of our Heavenly Father and I am so glad I am blessed to be her earthly mom. I have felt so much love from my Heavenly Father and Savior lately. I know they are watching over us.
This is off the subject, but yesterday while I was in the elevator going to visit Laurel in the NICU, I was talking to a mom. She had a baby strapped to her chest. She asked how old Madison was and I told her. I then asked her how old her baby was. She replied, "She is 7 months." "Wow," I replied, "she is little." The mom looked at me, almost ready to cry and said, "Yeah, she isn't growing and we can't find out why." The elevator door opened the mom got out and I said, "Good luck, you will be in my prayers." The doors shut and I continued up to the 4th floor. I wanted so badly to hug this poor mom and reassure her that everything would work out. As I was in the elevator by myself, I began to think about the blessings I have received. My Heavenly Father and Savior know me. They know Madison. They know Colt. They know all of us better than we know ourselves. They know that I could handle this precious blessing and trial in my life even when I think I can't go one more day. I know that they will help that poor little mom. She is one of our Heavenly Father's children and He loves her as much as He loves me. There are so many amazing stories at Primary's and all of those children are SO special. I love the spirit that I feel when I am at that hospital. It can be a sad place, but there are also so many amazing things going on there. I pray that little girl will be blessed and all will be well. Please keep all the children at Primary's in your prayers...they need them!!
Wednesday, September 21, 2011
Primarys
Today Madi had an MRI at Primary Children's. Madi, Colt's mom, and I went up to the hospital at 7:30 this morning. Madison's appointment was at 8:30 but with college back in it takes a while to get to Primary's. In order to be ready for the MRI and sedation she couldn't eat any milk after midnight. They told me to give her apple juice, water, or pedialyte...what? She is three months old, how on earth is she suppose to accept the fact that she can't have any milk? I figured it would be a long, long night. She actually did really well! I fed her some milk at 11:40 to hopefully satisfy her for the long day ahead. Of course it didn't work! She woke up at 3 a.m. like always and was hungry. I decided to try the apple juice mixed with water and she inhaled it. But it wasn't very filling...she woke up at 6 and wanted more! I was told that she couldn't have anything to eat after 7. So you can image how ornery she was when they didn't take her back for sedation until 10:00. It is really sad to have to see your child go through some of the things she has to go through. They took us back to a room, told us what would happen today, made me change her outfit to some scrubs, and then took us to a second waiting room.
Here she is getting ready. She had some cute little hospital socks too.
After waiting in the second waiting room and trying to keep her happy because she was starving, they finally took us to see Dr. Miller. Dr. Miller is the anesthesiologist that sedated Madison. I really liked him, he took good care of my cute girl and made sure I knew what I needed to know. We watched as they put her to sleep, it was really sad, and then one of the nurses said, "Well, looks like she is out so you can go sit in the waiting room, let me show you where that is." All I could think is, "Wait, let me kiss my baby." I didn't want to leave her. It was hard.
Care and I went to the waiting room for about an hour while they gave her the MRI. It was a good thing that Care was there because I had someone to talk to and make the time go faster. (I have to teach Relief Society on Sunday so we talked a lot about my lesson.) They came and got us about 11:15 and we were able to go back and see her as she was waking up. It was so sad because she was swollen from the IV and she was extremely irritable, which is pretty normal for babies they said. She cried, and cried, and cried, and cried, and cried for about 20 minutes. She wouldn't eat, all she wanted was her mom and her binkie. They finally released her about 11:35 or so and we got to come home. She has been starving ever since we left the hospital and I don't blame her. I would have to admit though, she has been a surprisingly happy girl since we left.
I love my little girl so much and I know that today was just a glimpse of what she and I will go through when she has heart surgery. I don't think I am ready for that. I have felt my Savior so close lately and I know that he is here helping me through this time in our life.
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