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.

Brooke Ashley

Our sweet little girl, Brooke, passed away Thurs , July 24 about 2:15 PM while I was holding her. She was surrounded by a family who loves her. It was both a heart breaking and bitter sweet day for all of us. For what we had to go through, we couldn't have asked for a better experience...Here's what happened... She has been such a strong fighter and we thought for sure she would pull through. The last couple of days she has been struggling getting enough oxygen to her tiny body. The doctors at Children's worked very hard to keep her going but nothing they could do would help her survive. They had to increase her oxygen to 100% and maximize the medications to help her blood pressure, lung development, and more. They were perplexed as to why she was not getting any better...even a little. After much research and consultation with several experts they realized she probably had a rare and fatal lung disease that occurs as the lungs develop and was not a result of prematurity. We were told that even if she had been full term, she would not have survived. Even if she could have survived pulmonary stenosis (the blockage in her pulmonary artery in her heart) and the lung disease, she also had bleeding in her brain that would have caused serious neurological damage.

We received a call at 3 AM Thurs morning at Evergreen that she was going downhill fast and we should be with her. Tom and I gathered ourselves together and rushed over to Children's. We had received a similar phone call the night before and been with her for a while until she appeared somewhat stable then went back to Evergreen to stay, so this call was not wanted, but not unexpected. We had also talked with Dr. Jackson (Brooke's doc) about what was happening. He explained that all possible treatments had been exhausted and he wished he could offer something else they hadn't tried, but couldn't. He has been very compassionate through the span of her brief life and this time was no exception. She was dying, not if, but when, and we needed to make a decision between medical care and loving care. This phrase really hit home to us, though we did not want to face the reality of it all.

When we arrived at the hospital around 4 AM Brooke was still hanging on. We started making phone calls to family and slowly they started arriving. Not sure what to do or who to have present, we couldn't have planned it better if we had planned it at all. Our parents, Tom's brother, Charles, and Debbie with kids, Connor and Micaela, and little Tom and Andrew were there by 6:30. Tom was able to give Brooke a name and a blessing. By about noon we also had Tom's sisters, Jeanette and Rachel, their husbands, Matt and Walter, Jeanette's kids. We spent the day holding her for the first time. I was able to do kangaroo care with her, the boys held her, grandparents, and Tom too. Up to that point her heart rate had been extremely accelerated because of all the medications, but was now dropped to a more normal resting level. We knew that she was feeling comforted and we were too. The hospital offered us an opportunity to have a non profit photographer come in and take black and white photos for us, so this was done while we held her. The nurses and social worker also worked quickly taking pictures, printing them, and putting together a memory box for her full of a scrap book, Christmas ornament with her footprint, and pictures for the boys with their hand print and hers.

The hospital's chapel was available for use after 1 PM, so at 1:30, held by her Daddy, Brooke went downstairs with us. We gathered as a family with me, holding Brooke, Tom, little Tom, and Andrew in the center of the room All the others gathered around us. Tom's dad offered a family prayer and then they removed her breathing tube. Brooke looked so pretty, this was the first time we had seen her little face without any medical equipment. I had been sobbing off and on for the 2 days prior, but at that moment, I felt a strong sense of peace. Brooke did too. She cracked her eyes slightly and gave me a tiny newborn smile. I knew that there was a room full of people, but all I saw was her sweet spirit comforting me and telling me it was okay. We stayed gathered as a family for a short time, then returned upstairs to her room. I couldn't let her go...we held her for a few hours more. The hardest thing I have ever had to do was leave her in that room and walk away.

Tom and I hadn't eaten for a long time so we went downstairs and ate with our family. Everything seemed so surreal. We ended our day talking and reflecting, crying and laughing with the kids playing together at the playground. Our family really pulled together and we knew that we were surrounded by love. After we all left Children's, we decided we needed baby therapy. We headed to see our little ray of sunshine, Summer, at Evergreen. Tom was able to do kangaroo care with her for two hours while he fell asleep and the boys slept by me on the couch.

We do and will miss Brooke immensely, her little spirit can never be replaced. Though only 10 days old, she left an imprint on all of us we will never forget.

Preemie Steps...

AAAHHHH!

I'm starting out this entry full of cute pictures with a not so cute one...yes, this is the current condition of my legs and feet! Carrying twins comes with extra fluid and to boot, I had surgery with general anesthesia, AND I've been on bed rest for 11 weeks. I guess it will be about 2 weeks until my sausage-like feet will re-appear as normal walking apparatuses...good thing I own a lot of flip flops!

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~ODE TO AUNT DEBBIE~

As I have been posting all the picures I have taken over the last few days, I realized I don't have any of my sister, Debbie. except this one my mom took of her and my dad in my hospital room. Not having any pictures of her here is like not having any of my husband! She has stuck by my side through this whole thing. She even slept at the hospital with me the first couple of nights so I wouldn't have to be alone while Tom stayed at Children's with Brooke. We stayed up late (much to my nurse's chagrin. She told me to get a good night's sleep) talking and crying and laughing. She has been by my side for every baby born and this time was no different. Things went so fast though, she missed going into the OR by about 5 minutes. A nurse pointed her in the right direction and told her there was a bench she could sit on to wait. She went down the hall and couldn't find the bench. She said she just started bawling hysterically...she didn't know if I was all alone, or if Tom had made it in time. A nurse comforted her and Debbie asked if she could just stay by the wall and wait, then go with me to the recovery room. The nurse said "I don't think dynamite could tear you away from this spot" and she let her stay. When I woke up in recovery, Debbie was sitting by my feet and checking out my painted toes and shaved legs, which by the way, were only possible because of some sweet friends who had pity on my enlarged belly :) It was really nice to have her there since Tom was with the babies...it made such a hard situation so much easier. I have now found out that it is a general policy for no one, not even husbands, to be allowed to stay in the recovery room with a surgery patient. I guess they could see that she was so incredibly devoted they couldn't keep her away if they tried. Since the first couple of days, she also came to visit and brought me food for the fridge in Summer's room and fed me while I held her for a while. Debbie lives in Monroe, which is only about 15 minutes from here, and is one of the many reasons we chose to have the babies at Evergreen. I am lucky to have her and I don't think I tell her enough...so now you all know :) Thanks Deb :)
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And now, an update on the cute little ones...

We always hear of things happening in baby steps, our lives are currently taking preemie steps...

Summer's diaper, shades, binky, and foot and hand prints

Summer is progressing very quickly without any complications. All the nurses say she does not seem to be so young. She is getting breast milk through her feeding tube, pooping, and peeing nicely :) It all comes to the importance of bodily functions eventually! I have held her twice so far :) The hospital does what they call Kangaroo care. It is something started in Brazil when they had a shortage of incubators. They put the babies on the mom's chest skin to skin for as long as the baby can handle it. The warmth of the mom's body automatically increases to give warmth to the baby. In addition, the baby can hear mom's heartbeat and smell the familiar smells from when they were in the womb. This is so cool. Not only is is great for Summer, but it doesn't hurt me a bit either! All those who have held a sweet baby know how good it feels :) She had been under the UV lights for jaundice, but got taken off yesterday because her belly rubin was low enough. She had her breathing tube taken out on Wednesday and just has something called a CPAP. It goes over her nose and delivers oxygen to force her to remember to breathe. She is breathing very well on her own and has even had her level turned down to 21 percent at times, which is room air. She is finding her voice too...little tiny voice (yes, I know it will get much bigger!) Here are yet more and more pictures...sorry, can't resist the cuteness!

Our family, minus Brooke...hopefully all 7 of us will be together soon!
I first did Kangaroo care with Summer on Friday, July 18th with Grandma Norris looking on Sat. July 19th Kangaroo care without the CPAP
Sweet little Summer...all the nurses like to comment on both of them having so much hair. Apparently it is uncommon for a preemie to have so much, and is definitely uncommon for our babies!
Andrew meets Summer...he is very gentle Little Tom really wants to hold Summer. He has always loved the name Summer and begged us to name one of the twins this . We had actually decided on Autumn, but when Daddy saw her, that name didn't fit...Summer did. Little Tom is thrilled. I am so happy he gets to have that special bond with her. He has been through a lot with this pregnancy and this is a great reward for him, and us too.
Tom and Summer...he loves this tiny little one

Morgan loves the baby too...especially because mom wasn't holding her! She kept climbing up on a stool and peering in at her saying "baby migh"-translation baby sleeping :)
Grandpa Norris admires grandchild #15, Summer Marie. Her middle name is in honor of my Grandma, Bertha Marie Norris

Summer's first smiles...no it's not gas! She is truly content these days with a full tummy and diaper to boot!

Here Summer is in action...no gas sounds here, haha :)

Brooke still has not had her heart surgery. We aren't sure when this will happen since she is still so tiny. They also want her respiratory issues well under hand before they even attempt it. She has been stable though and had two good days in a row. She has been on an oscillating respirator (it sounds like a generator and shakes her body constantly to keep air flow going) because she can't breathe at all on her own. That respirator is about as last resort as they come, but she is due to try a different one maybe today :) They found a cranial bleed a couple of days ago, but are thinking that it isn't as bad as they thought in the beginning. This is something they just have to watch and see where it goes, but head measurements have indicated no swelling....we'll keep our fingers crossed! Brooke is still under the UV lights for jaundice, but her belly Rubin count is slowly coming down and her color is looking a lot better. She is doing amazingly well, considering all she has been through. Every day I meet another nurse that was in the OR the day they were born who says that Brooke worried them. She had such a rocky start, they were concerned she might not pull through. So far, so good. :)

Grandma Norris meets Brooke for the first time

Grandma and Brooke are stylin' together with their shades

Grandpa Norris admires grandchild #14, Brooke Ashley. Her middle name was chosen by Daddy when he gave her a blessing before transport to Children's Hospital. She was a very sick little baby that night and almost didn't make it...we are so lucky to have them both with us!

When I visited Brooke yesterday, she heard my voice and her eyes popped open. She is getting more responsive and I can't wait to hold her!

Brooke was taking a diaper breather when we were there to help expose her skin to the UV light treatments. You have to admit that is the tiniest little but you will ever see!

Brooke is getting stronger all the time!

While the boys took turns meeting Brooke, I sat outside with the other kids while they played. It is obvious who had a great time here! Morgan got her clothes wet and decided to strip...I managed to get her back into a diaper at least...the helmet was her idea!

Everything is better when done in a diaper!

Little Tom figured out how to get up to the highest point of the castle in no time at all

When Tom brought the kids up to see both babies yesterday, they were so cute touching them. I still haven't left Evergreen, not sure when I will return home. Visiting both babies is hard....the price of gas is killing us, blah....oh well, we have a couple of miracles on our hands here :)

The nurse showed Andrew how to touch a preemie. They can get overstimulated very easily so you can't stroke them, just place your hands on them gently to let them know you are there. Andrew took this very seriously and Brooke responded well to his voice.

What a sweet big brother

Last, but not least, Little Tom meets Brooke. He didn't want to leave the side of either baby. He is so tender and loving, he is going to be a huge help when they come home (I hope!)

I have been informed that I need to stay glued to my laptop reporting blow by blow, so I will do my best :) While I am stuck here (oh darn, I have peace and quiet and get to see my baby more!)at the mercy of gas prices, I have nothing better to do anyway! It is very peaceful here and I get to glance at my cute baby while I finish the two quilts I was supposed to get to do on bed rest! So, for all you inquiring minds who want to know, this is as current as you get for now! Thanks for all the support you are all giving us...we couldn't be doing this without it! :)

Time to meet Baby Brooke! WARNING this entry contains LOTS of photos! :

Thursday I was discharged from Evergreen...without my purple chair :( I asked my nurse, Jenny if I could take it home and she said no, it is not your parting gift. Darn.

Mel and Jenny, one of my favorite nurses

I have been somewhat anxious to be home, but it is really hard to feel like leaving when you have 2 babies you can't bring with you. It took most of the day packing up all the junk I had brought with me to occupy my time, so I didn't leave until about 6:30 PM with Tom and Debbie.

Here she is...our little fighter, Brooke Ashley

We headed for Children's so I could meet the daughter I was rumored to have. Since I had to be put out during my c-section, I didn't get to see Brooke at all. It's suchBrooke has been slowly improving in very little ways, but still has a long road ahead of her. Her lungs are very under developed and need lots of time to heal. They need to get her to the point where she can be off the respirator and breathe on her own so they can perform her heart procedure. Despite that, she looked a lot better than I thought she would. She has gotten a much pinker tint to her skin and they have been slowly reducing medications, which has a calming effect on her. Yesterday they found an intercranial bleed that they will be watching...they aren't sure if it will have any long term impact or not, they will just watch it and see. She seemed so much more fragile and delicate than her sister, but it was great to finally get to see her :) Here are some more photos to show her off.

Mom and Brooke meet for the first timeDaddy is wrapped around Brooke's tiny little fingers already!Mom and Dad visit their sweet little fighter, Brooke

Summer is doing excellent! She is still in Evergreen's NICU and is thriving. She had her breathing tube taken out on Wednesday and is responding nicely. She has started to discover her voice and has made a few noises to express her displeasure to the nurses poking and prodding :) I am spending a couple of days here with her and enjoying just watching her little legs and arms flailing around like little antennas searching for that perfect signal. I am starting to really connect with her and can't wait to hold her soon.

Summer before the tube was removed

Mom and Dad admire SummerWe can finally see our sweet daugher's face without the breathing tube

I got to steal some kisses after they took out her breathing tube :)

Summer's cute little face

More of Summer's cute face...I can't wait to see Brooke this much!

Summer is stylin' in her Star Wars Pod Racing gear!

This ia a CPAP...it delivers oxygen through her nose while she breathes on her own

Tom has been spening lots of time with Brooke and has fallen in love with his tiny daughter. He is definitely wrapped around the littlest finger we have ever seen! We are so grateful for all the doctors and nurses who have made it possible for these tiny little spirits to be here with us...there is no way we could ever have imagined we would be gazing at two such sweet babies just a few weeks ago!

Well, before I start bawling (again) and short my computer out, I better go to bed...until next update, here are some more photos to gaze upon. My poor daughters didn't know they would be so famous so soon! :)

Summer's tanning bed...complete with UV lights (for jaundice) and shades

Brooke's UV tanning bed and her purple shades

A visit for Summer from Mel's friends, Mel K. and Emily

Lynette and Summer

Grandma Julie touches Summer for the first time

Grandma Norris' first touch with Summer

Aunt Jeanette and Summer

Aunt Rachel and Summer

Summer's little footsie is not even as long as my pinky!