Monday, April 18, 2011

Little "E" Part Four

The next few days were a roller coaster of ups and downs. Every morning brought with it new accomplishments and every night ended with new challenges. Wednesday April 6th After the morning X-rays, the doctors said your lungs were looking much better. Our new doctor, Dr. D, doesn't think you were seizuring yesterday, he thinks that it was just reactions from being born so early and so quickly. The brain scan was sent to a specialist at Primary Childrens hospital. They say there's a possibility your brain isn't bleeding and instead it's just swollen due to the emergency situation of the day before. Today they put a bili light on you. They're worried about you getting jaundice, so they're trying to kick it early. Your little body is all swollen and puffy today because of the fluids they've been pumping into you. Yesterday you weighed 2lbs 7oz and today you weigh 3lbs 2oz. The nurses stimulate you as little as possible so you can be comfortable. They try to touch you only every 6 hours. We figured out their time schedule today so we can be ther to touch you and help them do your tests. Today they let us take your temperature and change your diaper while they were doing their tests. We LOVED to be able to spend that extra time with you. Thursday April 7th You maintained your blood pressure through the night and they've started to take you off your meds! We got back another ultrasound of your brain, this time they're sure there's been some bleeding and we're watching to see the effects and whether or not it's spread. We had a tough talk with your doctor on what this could mean for your little body. The nurses have also discovered some blood in your urine, which means your kidneys and liver are still struggling. Your little body is so swollen with all the extra fluid they've pumped into you. Dad, Rhett and Great Uncle Barry gave you a blessing of health tonight. It was beautiful. You were also given your first "fats" tonight through IV. We call the IV your twinkies..

Friday April 8th

We got back the second brain scan this afternoon. The bleeding stopped and didn't spread. This is a huge positive! Your kidneys are starting to catch up with your body and they're doing awesome now! Grandma Curtis got to spend some special time alone with you today. She's been our angel through this process. We're still watching the effects of the bleeding on your brain and we're still worried about your liver.

Saturday April 9th

The newest tests show that your liver might be doing better. Your lungs are doing better and they've been able to turn down the help you're getting from the oxygen machine. The nurse waited for mom to get there before she changed your diaper. We waited too long and you had peed through the bedding! The nurses don't like this because it means they have to take you out of your incubator, but Mom and Dad loved it, because we got to hold you for a few short minutes while the nurse hurried and changed your blankets. Your swelling has gone down a ton and you're starting to look like a skinny baby again. This is a good sign that your liver and kidneys are doing better.

Tonight was a tough night because we had a blunt talk with the doctor. You're showing signs of improvements in small areas, but they have some big concerns. They've decided to wait until Monday to make any tough decisions. Dad, Grandpa Curtis, Grandpa Tom and Uncle Jeffrey gave you a blessing tonight. We also asked all our family to fast and pray for you tomorrow.

Sunday April 10th

They were able to take you off all your blood pressure meds, but you've started showing signs of seizures again on your monitors. We got to change your bedding again today and weigh you. Mom and Dad got to pick you up and we LOVED it! The nurses are going to start putting extra big (Preemie size) diapers on you today so they won't have to change your bedding again. We talked to Dr. Chan today. The outlook is grim, but we're getting a second opinion tomorrow. They think the reason why you started struggling inside of me is because you somehow got yourself lodged up against the umbilical cord and it started to cut off your supply of oxygen and blood.

Monday April 11th

Today while Mom and Grandma were sitting with you, you started to wiggle your foot. We got so excited that it was a sign of your medications starting to wear off. The doctor told us it was just a muscle twitch. Mom and Dad had a feeling that the doctors would have a hard talk with us today. They did. They're not seeing improvements in the areas that they need to be seeing and they feel like they've done everything they can for you. We had a specialized doctor from Primary Childrens come over and check you out. He thinks they've done everything they can for you too.

It broke Mommy and Daddy's hearts to hear the news. Your nurse got you out of your incubator tonight so we could rock and snuggle you for the first time. We loved every minute of it and we're so grateful for the fight your little body has been giving for us. We had a really hard time leaving you tonight and going home.

Tuesday April 12th

We will always remember this as a bittersweet day. Your grandparents and some aunts and uncles were able to come say their goodbyes and hold you for the first time. It was a wonderful time as everyone took their turn to tell you how much they loved you.

Mom and Dad spent all afternoon with you. We had some pictures taken together that we will cherish forever. We were given the wonderful blessing to hold you and love you as you passed away peacefully in our arms. It was the hardest day of our lives, but we know you're in a better place and your little body is finally at peace.

1 comment:

Ty & Jill said...

We love you guys! Thank you for sharing your story. I can't believe all you've endured. What a special baby! (tears running down my face).