Madison update- 7/27/2010

Today was a rough day but I am counting my blessings for all the little miracles and things we have. Madison continues to do well on some fronts and we have been presented with some new struggles on others. She is doing great on the regular ventilator. Her skin is improving for the most part. She looks like a little boxer in this picture with her hands all taped. But fitting since she is our little fighter. Her toes are much improved although the doctor told us that although they may not be black anymore we have to watch to make sure they grow properly. Madison's weight continues to remain about the same...around 1lb. 4.5oz. The doctors tried feeding her again but she didn't do so well with it which is not unusual for her gestational age. It was rather alarming seeing her today as she has an iv in her head. She has no more usable veins left and apparently, your head has very good ones. I had a hard time seeing her with it in but the drs assured us it was ok.

The hard new came when we met with the neonatologist. The doctor had called last night and said that Madison's head ultrasound had come back showing bleeding in her brain and she was concerned and wanted to meet with us today to talk about it. Needless to say, I didn't sleep very well last night. Madison has grade 4 bleeding in her brain, which is the worst grade possible. Usually, babies with grade 4 bleeds do not live but luckily Madison was blessed and due to the location of the bleed, at the front of her brain, the doctors feel that she still has a chance. If the bleed was anywhere else it would be worse because it would be where most of the new brain cells are made and she wouldn't have a chance. The grade 4 bleeding is only on one side of her brain although it has overflowed to the other side as well. There shouldn't be anymore new bleeds at this point, they just have to watch to see if this one is absorbed by the body. The doctor said that it would take a month or two to absorb. Also, we have to watch to see if, because of the bleed, her brain produces fluid normally and does not begin to back up and put pressure on her brain. If she cannot drain the fluid, then she will have to have an access portal put into her skull to drain the fluid. If she continues to need to access portal by the time she is ready to go home, then the doctors will be able to put a shunt in her skull and run a tube to her stomach to drain the fluid. This would be a lifelong problem that would require multiple surgeries to adjust her shunt. However...all of this is a maybe that could happen. As far as the bleeding affecting her brain functioning, the doctors said that about 80% of babies have some sort of brain damage that affects functioning. It is too early to see how she will be affected or what she will have to deal with but I am preparing myself to deal with some challenges due to this.

We feel so blessed that Madison still has a chance to live and continue to pray for her. We have seen so many miracles and prayers answered in regard to her development and health and we know that this new development will be no different.

our new house...

new house

the kitchen

the living room

At the beginning of July, we moved to a new house. Our lease on our town home was up and we needed more room. It wasn't exactly ideal to move in the middle of all the pregnancy struggles but our ward and parents were great and helped us out beyond belief! We could not have done it without everyones help. Thank you so much! Its a good house to rent for now and we are glad to have found it. Luckily, it is right around the corner from our old place and so it wasn't far to move. I promised my sisters i would post pictures so here they are. It is really nice having the space of a house although Jason already hates doing yard work as we have a good sized yard.

Madison update- 7/25/2010

Little Madison continues to be a survivor! She is continuing to hold stable and progressing in many little ways. The heart medication to close her PDA valve worked and because that is now closed her blood pressure is much improved and she is off all of the blood pressure medication at the moment. Yesterday, the doctors were able to take her off the Oscillator, the most high powered type of ventilator, and put her on a regular ventilator. She continues to do well on it...next step is to get off the ventilator and on a c-pap breathing machine. Her brain ultrasounds came back with minimal brain hemorrhage...normal for a preemie, which was a huge blessing! They will continue to monitor her brain for bleeding but for now it looks good. They also tried to give her some milk, nothing for nutritional value, just to begin to prime her stomach for food but she didn't digest it well so the doctors are holding off for now and she will continue to just get iv nutrition.

We love our sweet baby and are so proud of her. She is a tough little fighter and we are grateful for all the progress that she has made so far. I can't believe that it has only been a week since she was born. It seems much longer with all of the physical changes that happen on a daily basis for Madison. It has been an emotional roller coaster for me and combined with postpartum hormones I find myself crying over nothing and everything but that's ok. I am hoping to be able to actually hold Madison soon...in my arms..for more than a minute but we will see what this week brings. It has always been one of the hardest things for me with all of the kids wiating to hold them for the first time. Hopefully, we won't have to wait much longer...

Madison update 7/22/2010

Holding Madison for the 1st time

Madison in her little blue light sunglass shields..they protect her eyes while she is under the blue jaundice lights

Sweet baby-looking so much better today!

I just love her little tiny hands!

Sorry that I did not get an update posted yesterday for everyone. I just got back from the hospital and this is the latest update...

Madison is doing a lot better today. She had a rough day yesterday. Yesterday, they were having a hard time keeping her blood pressure up and had her on every possible medication they could to keep it up. Her toes were still somewhat black and she is still having problems with her skin being so fragile and tearing. Each day, she gets about 2 blood transfusions plus platelets to keep her blood levels up. She has so little blood and they have to take so much to run tests so they have to keep re -giving her some. They also started Madison on some medication to close her PDA valve in her heart. All babies are born with it open but it usually closes after birth and Madison's has not. The drs thought this was contributing to her low blood pressure. My dad, Jason, our our old Bishop, Bishop Mower, came down to the hospital and gave Madison another blessing. The blessing really helped as today she was doing so much better.

Today, Madison is off all of the blood pressure medications for the moment. She is keeping it stable and the heart medication has seemed to help. It is a 3 day course of medication so they will test her heart again after the 3rd day. Madison's toes look a lot better. Her one foot is has almost all the black gone! She was much more active today. I even got to hold her in my hands for 2 minutes while the nurse put the jaundice blue lights underneath her. It was great to be able to hold her! The doctors did some head ultrasounds yesterday but we are still waiting for the results to see if their is bleeding in her brain. The doctor thought that there was some but he was unsure how bad it was. We are taking it day by day and glad that she is having a little better of a day today.

Baby Madison Faith Sessions

Baby Madison Faith Sessions was born Sunday, July 18, 2010 at 9:48pm. Madison weighed in at 1 lb 4.5oz and 12 inches long.

On Friday, July 17th, I went into the Doctor for my weekly progesterone shot. I was having a lot of cramping and didn't feel good. The doctor ended up checking me out and they did an ultrasound. the ultrasound showed that I had started to dilate from the inside out, which is rare. Usually, it happens the other way around. The doctor gave me some anti-contraction medication, pain medication and sent me home to take it easy. On Saturday night, I was in a lot of pain and so I sent Jason out to a 24 hour pharmacy to get my pain prescription filled. On Sunday, I still was hurting and so I stayed in bed. Jason went to sacrament meeting with London, while Brayden stayed home with me and took a nap. As Jason was sitting down at church, London started crying and spit up all over Jason and herself, so they headed back home. When Jason got home, I was coming out of the bathroom where my water had broken (this was around noon). I layed back down to wait things out a bit to see what was going to happen. About 1/2 hour later, I started bleeding and we decided that I needed to go into the hospital. My mom came over and watched the kids and Jason took me to the hospital. The doctors looked at me and did an ultrasound and confirmed that my water had broken. Things were under control for the moment and so Jason left to go back home and get the kids home for bed.

Around 8:30pm, I started hemorrhaging really bad. I called Jason and told him to leave for the hospital that minute. the doctor came in to look at me and by that time, I was bleeding so bad, it was like a water facet. The nurses and doctors started prepping me for an emergency c-section. They didn't have time to put in an epidural and so they just put me out the sleeping gas. Jason wasn't allowed in the room, but he wasn't at the hospital yet anyway. I am glad that they just put me out completely. I was crying so hard, just scared for the baby, and then I started going into shock and shaking uncontrollably. When I woke up, the baby was in the NICU and Jason was in the recovery room with me. The down-side of not having an epidural was that when I woke up I hurt so so bad. They started pumping me full of pain medicine but it took a couple hours for me to be able to get the pain under control. Jason was able to go up to the NICU and see Madison. My parents came down to the hospital, after Jason's parents got to our house to watch the kids, and Jason and my dad were able to give Madison a name and a blessing. My mom was a sweetheart and rubbed my back along with my good friend Maelena. Jason and my dad also gave me another blessing and we settled in for the night not knowing what to expect as the docotor said that this inital week of Madison's life would tell a lot.

The next day, Monday, the doctors had to give me ablood transfusion after losing so much blood the night before. That delayed me seeing Madison longer but around 4pm, I was finally allowed to go up and see her. She was/is so tiny and sweet.

Her eyes are still fused shut and it will proably be a couple of weeks unil they open. Her skin is so fragile, they cannot tape anything to her skin or else is would just peel of. The doctors had trouble getting a cental pick line into her for her medications and feedings but on the last try, before doing it surgically, they were able to get one in. She has had some blood circulation problems and so her little toes are black. We are waiting to see if the skin will begin to heal or if they need to ultimatly be amputated. Only time will tell. She is on a ventilator but on a low oxygen pressure. Considering all things she is doing well. We are taking things one day a time and one challenge at a time. We love our sweet baby and are so greatful that she had a chance to gain a body and come into this world. We know that whatever the Lord wants it will all work out and be for the best.

Thank you to everyone for their prayers and well wishes. We will keep you updated through the blog and all the happenings that happen.
Little Madison in the incubator

Her tiny little legs

You can see her black little toes

Madison's left leg is all bandaged up becasue her skin is so fragile

Madison's special incubator blanket, that helpes keep the light out, that my mom, Grandma Rupp made special

More blanket...thanks mom for the special blanket!

Madison's tiny diapers which she swims in-they are smalle than our cell phones

Seeing Madison for the first time

Madison's tiny hand...yes this is all of her fingers next to my pointer finger

The size of her little leg bone

Tiny baby hands

We tryed to get a point of reference to show how little Madison is. She is about the size of a dollar bill

Her hat is so big it covers her whole head and face