Monday, May 21, 2012

It took a team of 5 ( nurses and respiratory therapist) but they did it. Today was the first day I got to hold you sweet baby boy! What a wonderful day! These are the pictures of the whole process. Thank you so much to the nurses and RTs that made this possible today. You are now getting breast milk feeds through a tube in your tummy and your ventilator settings are very low. Good job sweetheart. Keep it up!


Wednesday, May 16, 2012



Today has been a big day for us! First of all you are so brave and wonderful. You gave me the best mother's day present in the world. You are off ECMO. They took out your cannulas yesterday and you are no longer attached to that big machine and you are able to use your lungs to get oxygen. You are so good.

Today May 15 is the big day that you finally had your surgery. Dr. Camps is your amazing surgeon. You had to have this surgery to move your liver back into your belly and close the hole in your diaphragm for your lungs to expand. It was a big surgery and your mom and dad were very anxious and nervous. You did so well since you came off of the ECMO (bypass) machine!

We anxiously awaited Dr. Camps to update us about your surgery with our closest friends here in Columbia, SC. We waited with Hailey, Katie, Spencer and Lauren. They helped distract me from all the worries I was having and were very supportive. Dr. Camps spent about 3 hours doing the surgery to fix you up. He came out with your wonderful nurse that day Lynda and said that you did very well and everything went very smoothly.  Your daddy and I had the biggest smiles on our face since the day you were born!

He said that you ended up having a fairly large defect in the left side of your diaphragm and had to use a synthetic patch called a GORE-TEX patch to repair the hole to keep the chest and abdominal contents separated as they should be. He moved your liver down which had been kinked and a small part of it looked a little ratty but he was not worried since the liver is fairly good about repairing itself. After moving that down he moved your stomach down which was located right beside your heart making it a little difficult to fill up when it was in the wrong location. Your little heart was smashed over on the right side of your chest but after surgery moved over to the left where it should be. After that Dr. Camps was looking for your spleen which should be on the left side of your belly. He looked around and found that is was somewhat enlarged behind your heart in the right side of your chest. It is probably enlarged because of congestion since it was smashed up in the wrong location. Wheeeewh! After all of that he took out your appendix and closed up your belly and put in a chest tube. This is the scar under you left lower rib. All of that work through a now 3.5" incision.

You did an amazing job! What a strong little guy! We are so proud! All 3 of us were very strong during all of this and we are all together :) You have an amazing team of doctors, surgeons, nurses and respiratory therapist. We can't thank them enough!

You tolerated the surgery very well and our next goal is to manage your pain and support you through the next few days. Just after surgery as you can imagine is a very critical time, but so far you are doing well. We still have you on the conventional ventilator to help you breath and oxygenate your blood but you are doing most of the work on your own!

I know all of our family and friends are awaiting pictures of you off of the ECMO machine but we don't want to upset you too much or cause you any pain at this time. I will see how you are doing either tomorrow or the next day and we will try to do a photo shoot.

Even coming from a family with two doctors as parents, hope, thoughts and prayers did something for us. My hope for you and our love for each other is so strong that it is getting us through these hurdles! I told all of your doctors that the thing you needed most was the strength from our love for you and here we are still loving each other! As it says in one of the books I read you, "you are meant to do BIG things" and you will!

Stay strong little bear!

Tuesday, May 8, 2012

Ups and downs!

Owen bear,

Oh how I love you! You are more amazing than I could have imagined. Today I decided to write to you because we need a little help. We have had some major ups and downs over the last week. Our major struggle was with all of the extra fluid you had making you look like a giant baby which really doesn't help the lungs. After we started you on a medicine called Lasix you really peed up a storm! You have dropped your body weight by around 50% over the last 4 days! On top of that Dr. Iskersky who is your doctor this week said that your x-ray showed quite a bit of your lungs actually inflated with air! That is more than I could have ever asked for!!!! And most of your bowel seems to be located in its rightful place in your belly and not your chest. You even had a big poop!! Even this really helped to clear out some room in your chest for your lungs to expand. We still have a long way to go but a few things have gone our way. You are still on ECMO which hasn't been ideal and we would like to wean you off. We met today with the baby doctors and surgeons and have a plan over the next few days to try to wean the ECMO. It is doing a lot of work for you that your lungs should be doing like putting oxygen into the blood. This is where we need our family and friends to really think about you and pray for you to respond!! There is a medicine that we can deliver to your lungs called nitric oxide that will help your oxygenation by decreasing the blood pressure in the blood vessels going to your lungs. They are also doing an ultrasound of your heart again today. The main goal we have right now is to get you off ECMO. It will be very difficult but your mommy and daddy have a lot of hope!

We come and visit you several times a day and you like when we give you your passy and read you some books. Your Grammy May sent you some books with a main character named "Owen"! He has a fuzzy yellow blanket that he takes everywhere. The new thing you like to torture the nurses with is pulling on your tubes and leads. Please try not to be so stubborn in the NICU. Just save that all up for me when you get home.

Here are some recent photos of you! You are so loved little angel. Our family has so much love! Our 3 year anniversary is tomorrow on May 9 and all of our love is for you!

Love you little sweetheart!