Another surgery for Summer

Summer is continuing to do well, all things considered. She has become a favorite in the NICU...many nurses and others come to coo at her and smile at her sweet little self. The nurses and docs are very pleased with her strength and ability to bounce back from 2 traumatic surgeries. She has been off the breathing tube now for 5 days and needing only a little extra oxygen. She has gained a little weight and is right around 3+ pounds. This last Monday marked 4 weeks old already! Her face is starting to fill out and her arms and legs are not quite as spindly as they were. She is back to sucking on a binky, wrapped up, and cozy in her incubator...I hold her as much as possible. :)

My friend Tabatha met Summer Sunday, Aug. 10th

Andrew came with me to see Summer Aug. 10th

Big brother, Andrew, and Summer

The last few days, the docs have talked to us about her PDA (the blood vessel they closed at Evergreen with medication right before she got NEC) They have heard a loud murmer in her heart leading them to believe her PDA has reopened. Just to refresh your minds...the PDA is open while a baby is in-utero and closes within the first few days of life...except in preemies. Sometimes it will close on it's own, sometime it needs help. Hers was closed, but as a result of the infection and trauma from surgery, it reopened. With it open at this point, the blood flow that should be directed through all chambers of the heart, bypasses the left chamber and sends too much blood across the lungs. Summer has very healthy lungs, but increased fluid in them could cause respiratory issues and takes the blood flow there instead of to the vital organs that need to grow. With most of her intestines gone, Summer needs all the blood flow and growth potential directed to her gut she can get.

Tom and I went to the hospital today and talked with the docs. We agreed to have the PDA surgically closed...which they feel is best and will improve her chances of remaining healthy and strong. They make a small incision (small is relative...it is about an inch long. On you or I that sould be tiny...on her it seems huge!) in her left side, go in through the ribs, past a lung and close off the vessel with a tiny staple. I hated the idea of another surgery, but put our trust in the docs again. They have assured us that these babies who have had surgeries so young heal nicely and soon the scar is just a pencil line that will eventually blend and hardly be noticeable...I hope so...she has been through so much and will need at least two more surgeries(one in a few months to hook her bowel back up, and one for a transplant later down the road), that we know of, in the future. We were there for about 3 hours before the surgery and I held her for that time. She is still smiling a lot and loves to be held :) The surgery only took about 15 minutes with a little more time for prep and clean up...she was in and out in an hour. She came back to her room sedated, with a breathing tube. When she wakes up, the nurses are going to hear about it! Before Summer came back in, the resident doctor popped her head in, and said she is not looking forward to seeing her intebated again. She looks forward to Summer "letting them know" she is ready to have it out (if you remember, she coughed against it, making the nursed run to the bells and alarms). She has enjoyed seeing her without the tube, wrapped up in a blankie, and doing well...we have too! Summer did great and remained stable during the surgery. All went as planned, no complications. She should have her tube taken out in the next few days.

Summer is 4 weeks old :)

Cute smiles quickly turn to a grimace when I pull out the flashy camera!

Some interesting info we found out while waiting.... We talked to the attending doc about Omegaven again. She had made a phone call for us to one of the docs who has helped other families and he said they are not as open to dispense it as they were without a research program in place. The kids who are currently on it with a compassionate request, are those who have shown signs of liver damage and/or have no intestine at all. They are not in a position to dispense it as a preventative measure at this point. However, she just found out that a surgeon who specializes in SBS (short bowel syndrome) from Boston is joining their staff this Fall. He is part of the Omegaven program there and she hopes he will heading up a research study at Children's. This would be great news for us...maybe we would have a better chance to use it as preventative with a research program in place. The doc also assured us that Summer is in very good shape right now, and even before the NEC hit. She has healthy, strong organs, and her Biliruben is very low...a high count is one of the first indicators of liver damage... She will more than likely be able to "cycle" her TPN (be on for a time and be off for 4-6 hours a day) They don't know why, but being able to eat regular foods and be off TPN for a time, helps reduce the amount of damage. We had been given the option of taking Summer back to Evergreen sometime soon, but I think we will stay at Children's to remain connected with what is to come...

Take a deep breath.....that is what I have to keep telling myself.

A quick note to put your minds at ease :)

I have been very busy the last week worrying about our little Summer. She is still such a strong baby! As you know, she had surgery on her bowel last Friday and we have been anxiously standing by.

By Sat. night she started needing less medications. They weren't giving her morphine as often, decresed her dopamine (for her blood pressure) and were watching less. Our night nurse, Sarah (who had taken care of Brooke as well) had fun "playing" with her. We went to see her Sunday morning and Sarah had dressed her up for us :)

For the next two days she began coughing against her breathing tube, setting off all kinds of bells and alarms. The nurses were laughing at how opinionated she is already. But, we have been told several times they all like feisty preemies! She was so ready to have the tube taken out! Monday morning after rounds they took it out and she was a very happy little girl :) Once the tube was out, they moved her to an isolet (incubator) to keep warm and grow, and she moved into a shared room. These are all good signs in the NICU because it means she is on the low maintenance list! She still needs a little extra oxygen, but not much. She has also been off morphine and just taking Tylenol for a few days, so she is back to her little drama queen self...it is so nice to see her happy and content.

I have held her a few times and she loves it as much as I do. I can't believe she is already 3 weeks old! As of yesterday she weighed 3 lbs. 2 oz. and is still gaining. It will be still some time before we can bring her home, but for now, we are grateful to have her with us still.

I talked to one of the docs a couple days ago about Omegaven and she offered to help us get the ball rolling with it. It sounds like they welcome anyone who would like to try it and be part of the case study. We are willing to do whatever we can to avoid liver damage from TPN...we are so grateful to those who have contacted us with information!

Well, we are off to visit Summer :)

Summer's surgery

Yesterday morning we went to see Summer and sat in on rounds with the doctors. She had made it past 48 hours remaining stable. They decided to move her surgery up to 11:00 AM because of an opening. We had just a half hour to sit with her before the long wait. Tom gave her a blessing and we took a few thousand deep breaths. They prepped her and wheeled her out at exactly 11:00 AM as we took more deep breaths...

Tom and I headed for the cafeteria for lunch, though neither one of us really felt like eating. As we choked down our food, we discussed all the possibilities the surgeons had given us. We reflected on our previous experience at Children's and hoped that we could turn this time into something a lot more positive. Tom's parents came to see us during lunch...we finished up and headed upstairs alone to wait some more.

At about 12:15 I heard the receptionist on the phone talking about Summer Cameron. They didn't realize she was in surgery and didn't know we were in the waiting room near the desk. I popped my head up and they told me the surgeon wanted to come out and talk with us. More pits and knots in our stomachs came on. The surgeon came out to let us know all 50 cm of tissue they left in hoping to recover had died. She had only 22 cm that could remain...only 10% of the normal length. He wanted to know what we wanted him to do...of course, we said, do what you need to do to save her. He let us know the odds were not in her favor, and she would likely be TPN (IV nutrients) dependent for what may me a short life. The constant need for TPN can be toxic to her liver, increase bilirubin, and cause liver failure...we were in shock. He returned to the operating room and finished, forming a shunt for an iliostomy and sewed up her incision.

I was speechless and numb. I was really thinking she would come out of surgery with different results...she had been so stable and showed no signs of continued infection. They brought her back in her room and we went to see her. She was very stable through the whole surgery and they felt good about how she looked. Now we have to wait some more and see how she will recover from the surgery, how her body will adapt to the shortened bowel, and what it will all mean for her future.

It had now been 36 hours since her surgery and she has remained strong. Her vital signs have been even more stable than after the first surgery and she hasn't needed morphine to stay comfortable. As we have visited her today she has been sleepy, but trying to respond to us...trying to open her eyes and move her arms and legs. We are scared and hervous for what is in her future...trying to hope for the best. We may get to hold her in the next couple of days...we can use some good baby therapy!

My sister Kathy, me and Summer

Now, we have to wait some more. The nurse today told me she is still in the 3rd trimester of growth (I would be in my 3rd trimester of pregnancy at this point)...the bowel does some growing in that time and sometimes a child with shortened bowl will have some growth in the remaining sections. We will take any added length we can get, it will mean an easier time for her body to be able to absorb food.

Yesterday Tom ran into a woman who was very upset. He decided to ask her if she needed anything and they got talking. It turns out she has a baby here that is TPN dependent, has no intestine left, and is now 6 months old. She has no family here and has little support from her husband. They talked for a long time about the process she has gone through to keep her baby going. There is a doctor here who has helped her get in contact with a drug called Omegaven that is not widely used and only available from Canada or Germany. Her son's bilirubin had climbed to 19, after Omegaven it came down to 2. There are not any case studies because the drug is only 2 years old, but he found lots of testimonials from families whose kids have benefitted from it. We are grateful that Tom listened to the spirit and talked to her...we would have never known about Omegaven otherwise. For now, we wait and see what we will actually be faced with. Summer has a long road ahead and we will do what we can to make it longer...

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! :)