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!

Yet another surgery for Summer

Summer has surgery tomorrow at 5:00 PM to get her intestines reconnected. Usually surgery is 6-8 weeks after the initial one, but since she has such a small amount left, they feel she would be much better off doing it sooner...the first one she had was July 30th, almost 5 weeks ago. Once she is reconnected, the extra fluid she had been losing will be able to be absorbed and processed by her colon. She will still have to be hooked up to TPN 24/7 for about the first 2 months until the GI team can figure out how to balance her nutrition needs based on how well her intestines recover. She has still been taking in Ellocare, which is a partially digested formula with only 15 calories (breast milk has 20). The lower fat content makes it much easier on her system for both absorption and processing. I am hoping once she is reconnected they can try her on breast milk again. I have filled up half of an upright freezer with breast milk from pumping since the twins were born. Maybe I will have to donate it to a breast milk bank that's in California.....sigh. We will hope for the best though, that is all we can do! Summer is also ready to be moved to a regular hospital room. She no longer needs the extra ICU care...so she will recover in the NICU and then get moved shortly after. This is great news for our family...in the NICU no one under 12 can visit unless a sibling, and the room is not very kid friendly anyway. In a regular room we can have our kids entertained by a TV on a couch with our own private bathroom. OOOOH, living the high life! When Summer was still at Evergreen she had a room like that and it was really nice :)

Summer's foot is finally a little longer than my pinkySTREEETCHCheck out the shoulders, getting chubbier all the timeSummer prefers her binky on her nose...not listening to you, mom!Maybe if she covers her eyes, I will stop flashing her...I doubt it :)

So, we are taking another deeeeep breath and going forward. We are just that much closer to bringing her home!

First day of school...Tom 4th grade, Andrew 1st

Well, summer has once again come to an end. It seemed very quick...okay, that could have alot to do with me only having about 2 weeks of it! We wanted to to the local water park yesterday for one last fling, but it seemed like we had at least 10 things going against our grand plan. Morgan woke up Sunday night screaming frantically. After about 20 minutes of being unable to console her, Tom woke up and picked her up. She calmed down a little only to start throwing up on him. :) Ok, it is kind of funny (only to me of course) that she picked him! She had a fever the next morning and I started feeling a little crummy too. To seal the deal, the temperature dropped to the low 60's with a chance of rain. Seattle is beautiful and green, but all good things come with a price! WE ended up staying home all day, most of it in our PJ's. I finally had a small bit of motivation that moved me to take a shower and take the boys to my friends' house for a BBQ. We ended up staying out too late so the boys went to bed at 10:00 PM...the kids were definitely NOT ready to get up this morning....neither was I.

After we convinced the boys that they WOULD go to school, Tom and I drove them. My parents came over to watch after Morgan, who slept until after 11:00 AM, but woke up fever free :) Since Tom was going to be late for work, we drove into Seattle, then I continued on to see Summer. The boys had a good day...Morgan and I picked them up at the school and we all stayed to play on the playground. While I was talking with some moms, Andrew came up to me and stated (in a way only Andrew can do....Deep thoughts by Andrew) "I really liked her mom! " then ran back to play. He had protested that morning about school until I told him Justin's brother had Ms. Drury the year before and loved her....his attitude took a complete turn around...again only the way Andrew can. Tom has Ms. Aulava, who was his Kindergarten teacher too, so was really looking forward to class this year...no arguments from him :)

Little Tom with Ms. Aulava at the Kindergarten field trip 6-2005

Tom and Andrew in front of the school

Andrew lined up to go in

Tom in Ms. Aulava's class this year

Andrew and his buddy, Jaeger in Ms. Drury's class

Andrew made himself right at home

Tom and his friend, Tyler (behind him)

I only had to explain how many kids I have/Brooke's passing 2 times and made it through without crying, this time. I have been dreading having to see parents and teachers that might not be aware of how things have turned out, but thanks to some good friends who hang out at the school a lot, the principal, PTA board, and teachers were told. I guess there is no way around talking about it anyway....sigh

Now that the school year has begun, it will be easier to go see Summer too :) We have to be thankful for those little perks!