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!!

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.  

I am going to scream!

So, as most of you are aware, we have some major issues at our house.  Not only do we have a medically fragile baby but we have one thing after another keep happening.  This past Tuesday, September 6th, I returned to work.  It has been so hard and crazy.  My sister, Brooke; my mother-in-law, Carolyn; and my Grandma Park have been so nice to volunteer to take Madison.  This makes my life somewhat easier.  Well, not only have I had to worry about teaching this week but I have had a meeting after school every single day this week.  Teaching just isn't worth it anymore.  The legislature is trying to kill the teachers away and make it so that the ones that LOVE teaching don't want to do it anymore because it just isn't worth it.  We work our tails off and get nothing for it.  We have to pay for our own re-certification every 5 years (~ 200+ dollars) and we have to set goals every year and we have to make sure EVERY student passes the end-of-level test and...the list goes on!  What about parents?  They don't have to send their student, there is a punishment but it isn't enforced. So how is it far that I work my tail off and the student doesn't come but i am still reliable for him or her and making sure they pass...it's ridiculous!  Anyways, I will get off my soap box!  It is just hard to work when you have a baby at home...especially a baby that is so high maintenance.

BUT, this week has been extremely hard.  Not only do I have to go back to work, leave my baby, get more responsibility as a teacher but I have to have extra problems at home.  First, our dishwasher stopped working.  My dad came over to fix it and while fixing it found a baby cockroach.  Well, where there is one...there are many.  So, we have to have some one come out and spray.  So, I have come to the conclusion that this isn't necessarily a bad thing because we have a billion spiders and they probably need to be sprayed too.  So we will just get it all done at once.  Well, Colt picks Madison up from his mom's house yesterday and I meet them at home.  When we walk in the door I hear a funny noise.  I went to the kitchen to see what was going on.  I realized it wasn't coming from inside...it was outside.  Colt went outside and someone had put our hose in the window well, turned on the water, and flooded our basement.  Just ONE MORE THING!!  So I went downstairs to find the carpet and everything downstairs soaked.  I called the neighbors and neither of them saw anything so we figured it happened sometime between 2 and 5.  Well, Colt called the insurance and my dad called the cops.  We hauled everything upstairs and Servpro came to dry the carpets.  Well, needless to say, this has been the worst week ever!  Plus, it is LOTOJA this weekend...I am really hoping that Colt starts making some decent money because we have a million dollar baby and a million dollar house!

Update...

I know it has been a while since I have posted.  Life has been SO crazy and I have been trying to enjoy this little one of ours before she grows too big.  She is so much fun and so happy all the time.  I can't believe how much she smiles and coos.  She is a little trooper and I hope that she continues to be happy even after all of her surgeries.

As for a surgery update...we went to the cardiologist, Dr. Su, on August 22.  Dr. Su is amazing and I am so glad that he is Madi's doctor.  When we went to the doctor she of course had to have an x-ray to look at her heart and lungs and their sizes.  He asked me a few questions, looked her over, looked over the x-ray, I asked him a few questions and then we started talking about heart surgery.  ****Just so you know, heart surgery scares me the most!  I know she is in good hands but it makes me sick to think that my perfect little girl will have to be cut open and put on bypass.****  Anyways, Dr. Su informed me that she is doing so well!  Her body has "fixed itself" for the time being.  He said that instead of surgery at 6 months, November/December (Christmas time), he thinks she will be able to wait until 8 months, February.  That is definitely a blessing because the bigger she is, the better!  Another blessing is that I am off track in February and would get to be at the hospital full-time.  He said that she would be in the CICU for about a week and on the floor for about a week.  When she is on the floor, she will have her own room and Colt and I can stay there with her.  I wouldn't want it any other way!

As for the other issues, Madi has an MRI on September 21 and we have a big appointment with Dr. Rollins (general surgeon), Dr. Wallis (urologist), and Dr. Riva-Cambrian (neurosurgeon) on September 23.  I will update you all then and let you know about that surgery.  I am so glad we live in this day and age where the medical advances are amazing.  I am also glad that we live so close to Primary Children's Hospital.  There are so many people that drive or fly hours and hours to get there and I only have a 35-40 minute drive.  I can do that!!!

Next, we went and had pictures taken shortly after Madison came home from the hospital. I need to show some of my favorites!  She was such a little trooper!

I love these pictures!  Thanks Julie Parsons for doing them!

I have some really cute candid pictures that I just took with my phone!  They show how happy she is all the time! These are out of order but oh well...

 This was a picture of Madison after she had just woke up!

 She is mad in this one because I made her sit in her bumbo.

 This is Madison at the zoo.  She LOVES being warm, outside, and loves to look around.  She is going to be a people watcher like her mom!

 This is her in the tub!  She loves the tub!

 This is her after the tub in her ducky towel!  Thanks Shauna for the towel!

 I was watching my nephew, Daxton, and we decided to walk to my grandmas.  This was when we were having our HOT, HOT temperatures.  I know, I am smart!  Well, on the way there Daxton fell asleep but I couldn't get him to lay back so I put Madison behind him.  They were both asleep.  It was so funny.  So, I had to take a picture!

 This is my grandpa with Daxton.

 I found this little rocking chair at Home Goods in Farmington.  It matches her room perfectly and I wanted it so bad.  I just couldn't get myself to spend $55 on it.

 The other day I went in her room to check on her.  As you can see, she is constantly moving and this is the result.  She got out of her swaddled blanket and turned herself sideways.  She is so funny!  She never stops moving or making noises, even when she is sleeping!  This is why she sleeps in her own room now instead of our room.

We love football around our house!  We are huge Colt fans.  Well, we also go to the Davis games on Friday nights.  Colt's dad is the team doctor and so we get the perk of getting into the game for free.  So, we took Madison the other night for her first, well second, football game.  This is her new bow and she has a new onesie that says, "My First Colts Tee."  It is pink and SO stinkin' cute.  Off the subject, I also got her ears pierced.  They are so cute.  She has pink earrings right now.