Friday, August 15, 2008

Quick Update

Abbie told me that if we were going to have a blog that I would be in charge of it...hence the reason nothing ever gets posted on it. Here is a quick update on what has been going on.

I am still working on the LAUSD Learning Center project in down town Los Angeles. It is a K-12 school with a contract price of around $400 million. It is crazy how much they are spending on this is good for the company I work for but I think it is an extremely wasteful way of using the tax payers money, but it doesn't really matter what I think.

Abbie is working one day a week at St. Johns Regional Medical Center in the Cardiac ICU. She likes her job and it is good for her to be able to get out of the house that one day a it gives Madisyn and I a night to hang out and have daddy daughter date night.

Madisyn is doing very well...she is now 4-1/2 months old. She is still pretty small...weighing in at just 8 lbs 11.5 ozs. She really should be gaining more weight but she throws up a lot...when I say a lot it is not like the regular spit up babies usually do...she will throw up like half of her meal (or more) and then won't feel like eating again for a few hours. Her pediatrician is trying to get her in to see a gastroenterologist to see if he can find a reason why she can't eat very much and why she throws up so much. She has had a few x-rays to see if her left lung has started to develop and help out with her breathing but her little left lung still is not doing looks like she will just have to rely on her right lung. Although she only has the one lung her body has compensated very well and if you didn't know all of the stuff that had happened to her you would never be able to tell by just looking at her. At the end of this month she will be going to Childrens Hospital of Los Angeles to get into their pulminary clinic. The pulminologist will hopefully start working with her and he will also hopefully be able to refer her to a pediatric orthopedist so that we can figure out what is going on with her spine. As far as the doctors can tell she already has some scoliosis in her lower spine as well as an extra bone growing in the same place. They also need to do a work up on her upper spine to see if there is anything going on in her neck. Because she doesn't really have anything in her left chest cavity they will have to watch her really close because it will just make her spinal problems worse if they don't stay on top of things.

Although it seems like there is a lot going on with little Madi she is a happy little baby and we are so happy that she is here with us. Abbie takes really good care of her and I am so grateful for all that she does. She always knows the right questions to ask the doctors and she understands what they tell her...Madi is blessed to have such a good mom.

That is it for are some recent pictures of Madisyn...Enjoy!

So Cute!

Her first Dodger game...

she didn't really know what to think.

Bath Time

4 Month Picture

Saturday, July 12, 2008

Madisyn's Story

Madi's story began three years ago when we decided to start a family. After two years of trying with several infertility treatments, thanks to in-vitro we were pregnant. The pregnany was full of problems from the beginning as they gave a very high probability of miscarriage. Thankfully she fought hard to be here with us. At 18 weeks we went to a perinatologist for an ultrasound at which time they told us she possibly had heart problems, stomach problems, and an opening in her spine. That weekend our family and friends fasted and prayed for a miracle and the following week we got our miracle. We were sent to another perinatologist who found our little girl to be perfectly normal.

At 24 weeks the perinatologist found that she had a Congenital Diaphragmatic Hernia which is a hole in the diaphragm (the muscle that separates the chest cavity from the abdominal cavity and helps with respiratory function). As a result, part of her intestine and stomach were up in her chest inhibiting the developement of her left lung. We had many appointments to evaluate the growth of the baby and the size of the hernia so they could determine the best time for her to be delivered via c-section. We also had the task of selecting a hospital that would meet her needs and where we were comfortable with the surgeon. We decided upon Huntington Memorial Hospital in Pasadena which is about 45 minutes from Thousand Oaks.

On March 26, 2008 we welcomed Madisyn into our family. She weighed 5lbs 7oz. and was 17 ¾ inches long. She was a miracle from day one and continues to prove that. She was quickly intubated (placed on a ventilator) and paralyzed in the delivery room so that she wouldn’t swallow air or fight the ventilator. Following multiple tests and close monitoring Madi had stabilized and they decided it was time to repair the hernia. Madisyn had surgery three days after she was born. The hernia was much larger than they expected; she was missing 2/3 of her diaphragm, she had part of her stomach, liver, intestine, and spleen in her left chest which prevented her left lung from developing. As a result she relied solely on the right lung to support her little body. She did so well through the surgery and exceeded everyones expectations.

In addition to the hernia the doctors found on x-ray that Madisyn had some spinal abnormalities and rib deformities so a geneticist was called in to see if there was a syndrome to explain all her anomalies. After some testing they were unable to identify any genetic reason for her symptoms. Our little girl had just about every part of her body tested and thankfully everything else came out normal.

After the surgery they began to take her off the paralytics and sedatives to allow her to move and begin to do more of the work of breathing on her own. It was a very slow process but little by little she made improvements. When she was about 2 weeks old, she was finally stable enough for us to hold.

When she was 3 1/2 weeks old they took her off the ventilator and other than the assistance of a little oxygen she was able to breath on her own. Many of the doctors were impressed with how well she had done being that she only had one lung to support her little body.
Madisyn continued to improve but had one more hurdle to get through before she could come home. She had been fed via IV or feeding tube up to this point, now it was time to try the bottle. Eating seems like such a natural thing but for her it wasn’t. She did really good initially but then plateaued, she wasn’t eating enough to sustain her weight so they continued to have to feed her through the feeding tube. This was a frustrating time as we were so close to going home yet so far away. Steadily she was able to increase the amount that she was eating and they added extra calories to compensate for what volume she wasn’t able to eat.

After 7 weeks and 1 day of being in the hospital Madisyn was able to come home. We both cried when we put her in the car, we finally got to take our little girl home. We are so grateful to our Heavenly Father for blessing us with our little miracle and know that it is because of the prayers and faith of our loved ones along with priesthood blessings that she has done so well.

Madisyn is doing wonderful now that she is home. She continues to have frequent doctor appointments to follow up on her spinal issues, to monitor and see if she develops a functioning lung on the left side, to monitor her blood pressure, and to monitor her weight gain. She also goes to physical therapy to correct her torticollis (tightening of the neck muscles on one side).
She truely is our little miracle and our lives have been so richly blessed since she joined our family. We are grateful to all of our family and friends that stuck by us through this difficult time.