Surgery recovery update #5

Guess what I did today...wow, you are so smart...I DID visit Summer :) I took Morgan with me again today and my mom came too. Morgan was supposed to go the playroom with a volunteer...when we got there we were told she just found out there isn't anyone available on Fridays. Morgan had been very grouchy all the way to the hospital, I was looking forward to getting her to the playroom to cheer her up so dreaded trying to keep her happy while we visited. It was a good thing Grandma came along :) My mom held Summer for a few minutes and Morgan asked if she could hold baby Supber. I sat in the chair, Morgan sat on my lap and Summer sat on Morgan's lap. We took some pictures and when Morgan was done, she climbed down. I got to hold Summer for a while longer and Morgan sat with Grandma drawing pictures...she was very happy and content.

The 3 Cameron girls...Morgan really loved holding Summer :)

Morgan kisses her sad little sister

During our visit a surgeon came in to talk. She explained what has been happening. Summer got the infection because of a hole that developed at the connection site on her intestines. Apparently they had reopened the incision because they noticed she had been leaking stool through the incision in one end that had opened on its own. The surgical team will be watching her closely for the next four to six weeks hoping that the hole will close on its own and she doesn't have any remaining stool that pools in a pocket and it drains. If at any time Summer gets sick again or any other complications arises, they will be forced to repeat the operation. This is definitely a drawback...each time they do a resection, they have to remove more intestine...not something we want to happen! As long as she is dealing with this problem she will be strictly on TPN. I asked if this would prevent her coming home...she said Summer may still be TPN 24/7. We are going to have to experience that anyway, so if possible I would opt to have her come home...we are going on 2 months at the hospital! The surgeons are pleased with how well she is doing at the moment, so maybe that can continue...going in a positive direction is definitely what we hope for...

After taking my mom home, I picked up the boys from school and took them to our favorite beach park. It has finally gotten warm enough for the beach, just in time for Fall...typical Seattle weather! Angie and her kids met us there again...check out the cute little girls...true "Beach bums"!

Sadie doesn't like getting very sandy, and yet, here she is :)

Sadie and Morgan coating themselves with sand

Sugery recovery update #4

Summer is still continuing to get better! I went to visit Wednesday and she had been weaned some more on the vent…By the time I left, she was at 26% and was starting to really breathe on her own. She started opening her eyes and had her 2nd eye exam. Her eyes have not changed…they still look great J She is now between stage 2-3 of 3 stages…the peripheral vision. I decided to give Morgan a break from babysitters and she came with me. I was a little worried about how she would do, but she did pretty well…thanks to 2 cartons of chocolate milk! Morgan loves to talk about going to see “baby Supber” all the time. By the time we got there, she told me she didn’t want to see “Supber” after all, but was very excited by the big giraffes in the lobby, outside, on the roof of the building, etc.

You can see how much her swelling has gone down around her neck...the rest is mainly her own naurally grown double chin...and it looks like we have a thumb sucker on our hands!

I went again today, Sept. 11th. Summer has been weaned down to 24% oxygen and should have the breathing tube taken out today! Yeah! J Her Hydro cortisone has been reduced to once every 24 hours and no longer receive any dopamine (for her blood pressure). The only concern at this point is her incision…it is open and oozing a little. Her nurse is fairly confident it will heal up nicely lets hope she is right! She is also showing some signs of jaundice from the TPN and lack of food. Hopefully she will be ready to eaten through her feeding tube very soon…her intestines will start processing the food (hopefully breast milk) which will reduce the jaundice. The nurse told me Summer was passing gas today, so thought she would be able to use the intestines as soon as she is infection free, yeah!

Big sis, Morgan

Morgan fell asleep after church on Sunday...in the dress we forced on her the night before...this technique works well to get us closer to being on time to go to church the next day...the only draw back is her dresses end up looking like they have been slept in...a small pricc to pay for not dealing with a 45 minute fit before church at 9 AM!

Surgery recovery update #3

Today's progress...

Summer loves to hold her stuffed animals...she is still a little too puffy to open her eyes very well so she does her Japanese Anime smile look when she tries :)

Summer is still consistently improving. Today they have been weaning her oxygen and as of 10:30 PM tonight she was down to 28%, her blood gases have been great, she has had less blood pressure medications. They were going to do a spinal tap, but put it off since they had a lot of very sick babies to take care of. I went to visit this afternoon and she opened her eyes when I talked to her. She has continued to fill her diaper up and looks a lot less puffy. She still has a little bit of fluid on her lungs, but is losing it. The nurse is very happy with the progress she had and continues with. Summer is now 5 pounds and growing. Her nurse is impressed with her rate of growth, especially since she has been on IV nutrition for the majority of the time...most preemies on TPN don't grow very quickly..Summer is gaining weight at a good rate :) She is expecting Summer will continue growing more intestine. Things seem to be going in the right direction despite the temporary set backs...She is definitely showing how tough she can be!

Surgery recovery update #2

Summer on Aug 24th 2008...still very tiny

Time to stop holding our breath...for the moment. Summer is looking better and better all the time. She still has a few days to prove she is really improving.

Sleepy Summer Sept. 8th 2008 ... check out the cute little bed head...none of my other kids ever had this much hair even at 7 months old!

As of today at 2:00 PM she had been on the conventional ventilator for a couple of hours and doing well. Her oxygen was turned down to 35% and the settings were reduced. She is now breathing over the vent (taking more of her own breaths than the machine is set to do for her). She is much more responsive even though she is still on morphine. The conventional vent will help her blood pressure regulate on it's own...she will not need medications any more to raise it to a normal level. In the next couple of days they will do a spinal tap to check the fluid. They are expecting (and hoping) the infection to have only settled in her bloodstream and not made it's way up to her brain. The doctor is very happy with how she is slowly improving and encouraged by this. They took an x-ray while I was there and she still has a small section of lung that is somewhat hazy...this means she still has some fluid there that she needs to loose...she is now peeing a large amount so will hopefully get rid of it soon. As soon as she looks stable enough they want to start feeding her and continue the recovery process....yet another deep breath...

Some of surgery evidence...I am told Summer will have a small amount of scarring over time

The attending doctor, Dr. Lauren, is on he schedule for the next two weeks. I met him today and talked with him about Omegaven. He is the Neonatologist who for the last two years, has been the advocate for it. He told me that he doesn't think Summer will need it at all. I asked him why and he said it is because she will be able to eat. As I have said before, when the child can cycle their TPN (be off for any amount of time during the day) they can maintain good Bilirubin numbers and not damage the liver as quickly or as much. This is a different view point than we have heard before, but since he has experience with it, is very encouraging! For the next two weeks we will continue picking his brain for details...

More info. on Summer's recovery to come....

Surgery recovery update #1

Since Summer had surgery last Thurs, they have been watching her closely. She was looking fine for the first day, but still hadn't really woken up. The nurse told us that sometimes it can take up to 48 hours for a small baby to wake up. By Friday night at 10:30 PM she still hadn't made much progress. Over night she started struggling to breathe. They did an x-ray and found air in her belly and fluid on her lungs. She wasn't peeing much and the fluid remained on her lungs. As the night went on she needed a blood transfusion because her white blood cell count was really low. Her blood pressure lowered a little and she was very sleepy. The oxygen level was almost 100%. They determined she has an infection. I had not been feeling well this week after Morgan was sick Monday and was worried I may have taken a bug to her....I have stayed away since Thurs. just in case. They moved her from a traditional ventilator and onto an Oscillator. We got very nervous...this was the "last resort" vent that Brooke had been on. We got a call from the doctor around 7:30 AM to tell us what was happening.

I called the nurse around 2 PM and Summer had started improving. As the day went on, they were able to turn down her oxygen to about 85%. They had started a Morphine drip, given her blood pressure medication, a couple more antibiotics, given her a blood transfusion and other blood products, and an immune system booster. The nurse was very happy that she had been improving and by then she was getting stronger...her color was pink, she was warm and comfortable, and she was responsive...she tried opening her eyes when the nurse touched her and gripped her finger.

About an hour later, my parents visited her and my dad gave Summer a Priesthood blessing. I was happy they could do this for us....Tom and I really wanted to see her (though NOT on the Oscillator. Too many bad memories. Tom was also planning to give her a blessing, but was unable to make it there on time Thurs. I am grateful my dad can do this :)

I checked back in with Summer's nurse around 10:00 PM and was told she had improved even more. They were able to reduce the Oscillator by a point and had reduced the oxygen to 75%. She had improved in many areas since the night nurse had come on at 7:00 PM. They will do a lot of lab work at 4:00 AM...blood draw, blood gas, and an x-ray (to see if she still has air in her belly). They will have the results by 6:00 AM...

Summer's Hook-up Surgery

Thurs. Sept. 4, 2008, Summer was scheduled for surgery to re-attach her intestines at 5:00 PM. Tom and I planned to see her for a couple of hours before she went in and hold her. My parents would stay with our other kids at our house until we got home. Well, that is not how things happened after all.

I decided to call the hospital today and double check the time for surgery. the last two times she has been moved around and ended up being operated on at a totally different time than scheduled. The surgery fellow had talked to me a couple of days ago and said if she was to be moved, it would likely be a little earlier, but not by much. Well, I called and talked to Summer's nurse around 10:10 and she informed me the surgery would be at 10:30. YIKES! I almost started crying. I really enjoyed holding her before the last surgery and was looking forward to that this time around too. The nurse felt terrible and said she would see what she could do. After calling the OR, she told me they could wait a little while until I could get there. I called Tom and let him know. He headed to downtown Seattle (from work) to catch a hospital shuttle. I also called my parents and they jumped in the car and rushed out the door to come stay with Morgan. I then jumped in the shower and was ready in record time.

Morgan was still asleep, so I headed out to the van to wait for my parents. Just as soon as they pulled into the driveway, I pulled out. I checked with Tom to see if he found the shuttle stop and he was wandering around downtown trying to find where he was supposed to be. By the time I reached I-405 I could see that traffic was stop and go...argh, Seattle traffic! I was sorely tempted to hop in the carpool lane and risk a ticket, but just as soon as I thought that, the cars would start moving again. This happened several times until I finally reached 520...then I was on a quicker moving freeway. I checked with Tom again and he still had seen no sign of the hospital shuttle. He had called the hospital and gave the go ahead even if we were unable to get there. I ended up crying the rest of the way there.

When I finally arrived, I ran in and rushed up to the 4th floor. I was surprised when the lady at the desk told me she was still in her room. I breathed a sigh of relief and rushed back to see her. The nurse had moved her into an open bed so I had easy access. I got to kiss her and hold her hand. I received several appologies and told the attending doc about my temptation to hop in the carpool lane. He said I probably could have explained my way out of a ticket if I had been pulled over...I told him I would have probably just broken down in tears...he said I looked honest and tears would have definitely helped!

The surgery team came and picked Summer up just before noon. Tom still hadn't arrived so I called him to let him know she had been taken back. He ended up having to jump on a bus (he never found the shuttle, (apparently he was told it was on Pike St. but it is Pine, oops) so he didn't arrive until about 12:20...we decided to get lunch while we waited. She was done around 2:00 PM and the surgeon came out to talk to us. He said there was no excitement (insert sigh of relief here!) and all went about as well as it possible could have. He estimated Summer's intestines had grown a few more centimeters and she probable has about 23-24 cm with the growth and taking into consideration the small amounts they had to remove to have a clean, fresh piece at each end to hook together. This was great news! We still have about 5 weeks of gestational age to go, so even more time for more growth :) Tom and I both are constantly amazed at how much she has grown and how strong she has remained. We'll take it! As with anyone, she will now be at risk for intestinal blockage or leaking. In a couple of days they will try trickling a little food when she appears ready and see what happens. She will also be tried in an open crib and possibly be moved to a regular hospital room very soon.

We stayed around for a little while longer, then headed for home. We decided to take a detour and grab dinner at The old Spaghetti Factory...yum! We try to take every opportunity we can to do dinner together...taking advantage of the time without kids and before we are in charge of Summer's full time care. Please keep the prayers coming!