Baby Summer update

I wish I could report all is well, but as we are finding out, preemies are very unpredictable. We are worried about Summer and the turn of events that started Tues. July 29th. We are praying for her quick recovery...we need this sweet little spirit and want so much to bring her home one day. Here are some examples of her strength of spirit and her current story...

Our spunky Summer

Summer loves her binky

Summer is a happy baby

Our little spunky Summer has been nothing but strength and has a great love for life. Every time we have been missing Brooke, or feeling that big empty hole she has left, Summer has brightened our spirits and helped us feel comfort. We had been spending the last few days visiting her at night with the kids, holding her and being together as a family. Even Morgan was okay with Tom holding the baby...no signs of jealousy. We felt complete just being in the room with her while she hung out with her feet stretched out, hands by her face, sometimes opening her eyes wide to see us. I have felt that having her around has been such a comfort that maybe we could deal with the loss of Brooke a little easier. Summer has been so strong from day one. She had her breathing tube removed at only 3 days old, was only on CPAP for a few days and had spent the last 6 with only a nasal cannula (small oxygen tube with prongs that fit in the nose). She even pulled out the cannula and had it in her mouth at one point. The nurses have often commented on how she wants to be a big girl.

Mom doing kangaroo care with Summer

Daddy and Summer...she even smiled for us :)Andrew, Daddy, and SummerMorgan and SummerGrandpa Cameron meets Summer for the first timeLittle Tom holds Summer fo rthe first time...she was the most alert we had seen so far that night

Tues. Dr. Lawson from the Evergreen NICU called to deliver bad news. The nurse had noticed Summer wasn't looking quite right that morning so started watching her closely. Her usual pink color had changed to slightly gray, her belly was swelling a bit, and she was not breathing as well on her own as she had been. They did an x-ray and noticed she had some air build up in her belly. they started antibiotics around noon and would take x-rays periodically to watch her. She had developed a disease called NEC (necrotizing enterocolitis), a disease found in premature infants which attacks the bowel and parts of it die. They were hoping that she would respond to medical treatment rather than surgical. We decided to go see her as soon as we could, and made it to Evergreen around 4 PM. When we walked down the hall ot her room, we saw a lot of commotion in her room. Nurses were running around and they were talking about the crash cart. They saw we had walked up and sent a nurse out to assure us everything was okay. I had a sick sinking feeling in my stomach...panic set in and I was afraid something terrible was happening. They had decided to put a breathing tube back in her as a precautionary measure since she was struggling to maintain her breathing on her own. They let us come in to peek at her. She looked terrible. She didn't look like our lively little girl anymore.

My sister Kathy came to visit Summer at Evergreen

By that evening, she was exhibiting other signs she was trying to fight off infection. The docs repeated her x-ray earlier than scheduled and found nothing new. Despite that, the doc was getting nervous and decided to transfer her to Children's Hospital to be observed. I rode in the ambulance with her and we arrived around 11:30 PM. The surgeons immediately took a look at her and Dr. Stephanie came and told us she was very concerned about what she saw. By the time Summer had arrived, her belly was much more swollen and she looked even worse. Her skin was grey and her belly was a little blue. The surgeons felt it was urgent that they go in and take a look. We consented and by 1:30 AM Wed. morning she was wheeled into surgery.

My sister, Kathy had flown in earlier that day and came with us to the hospital. Tom, Kathy and I waited in the waiting room for a very long hour. Dr. Jackson, who had been the attending for Brooke as well, came out to tell us what they had found. Summer had a significant amount of small intestine that had died (2/3 of it had to be removed along with a large amount of puss) and some pieces that are questionable. They know for sure she has 19 cm of good tissue and another 50 cm that has parts that are possibly dying. They left this piece hoping to salvage a large portion of it. They placed a large mesh plastic piece in her belly, leaving her incision free to breathe for the next 48 hours while they waited to see if the tissue could recover. They have had her on antibiotics, iv fluids, morphine, and dopamine. Tom and I have been staying at Children's in a sleep room (a small room with a double bed and night stand and no windows) while we are waiting for our little daughter to recover.

We are now at about 46 hours, yes, Tom has been counting...and still waiting. Summer has been doing very well in all the areas they have been monitoring...blood pressure, heart rate, blood gas, PH level, hematacrit level, blood platelets, white blood cell count, urine output, blood oxygenation, oxygen level, etc. Despite being on morphine, she has still been quite responsive. We have discovered she doesn't like her feet covered, and though she can barely move, she has been wiggling her toes and moving her legs to get them uncovered again. We can see she wants to move her arms and legs and tried to open her eyes when we talk to her. At times we have even seen her sucking on her breathing tube like a binky.

Her second surgery is scheduled for Friday, Aug. 1st at 3:00 PM and we will know what they find to work with. We are trying to keep calm, but are getting nervous...I miss her wiggly little body and cat-like squawking...we hope to see her do this again very soon.