Kahlia has had another rough 24 hours. Last night, she began retaining A LOT of water - her kidneys were not functioning, and all the fluid from the IV was going to her lungs, stomach, and everywhere else except where it was supposed to go. Her blood pressure was DANGEROUSLY low, and because of that - her body decides that the most important organs to deliver blood to is the heart, brain, and lungs - not the kidneys. It was really scary last night seeing her numbers so low and knowing that her kidneys were not working. Also, I woke up at one point to her crying, and one of the nurses was pounding a mask all over her back, trying to break up the fluid that was building up in her lungs. Not a fun place to be for her or me! This morning, we had a an outflow of prayer chains from many many people, and immediately after those prayers began, she had her first wet diaper. In a matter of 6 hours, she had more urine outflow then the previous 2 days. Praise the Lord! I don't believe that was a coincidence. She has been more stable today with her over all numbers, but she has been waking up constantly crying, and flailing her arms and legs. She has been administered morphine almost every hour - along with an entire list of other pain meds - she is completely drugged at this point trying to manage her pain. They have concluded that somehow she has been exposed to these drugs before because her resistence to them has been so high. What she was given last night would have made ME flat on my back - amazing. She requires WAY more then any of the doctors or nurses would have ever anticipated. One Respiratory Therapist said she had never seen a child react so constant and fiesty as Kahlia. It's good to see her fighting, it makes her stronger, but she's a little over the top for their liking.

Mid day they decided to take off her respirator mask and tube in her mouth that went to her stomach. She was so irritated by it, they took it out probably sooner then they normally would. The Cardiologist was very surprised, but she's holding her own - like I keep saying - she's a fighter !!! :-) We gave her a few sips from a sippy cup, and she grabbed and drank like there was no tomorrow.

This evening has gone better then it was through the day. She is sleeping a little more soundly, though even now she wakes up briefly every 10-15 min. to let out a scream and let us all know she doesn't like her current situation, then she goes right back to sleep. The poor girl - they say this is the hardest age to do the heart surgery - babies are babies and they don't do much. Older children are old enough to be told what is going on and actually understand. She has no idea what is happening to her and why. Over all - she has improved. For that I am very grateful.

Today has been a rough day for our little Kahlia. It started out very uneventful this morning as the doctors and crew came by for their rounds and talked about Kahlia. She seemed to have done very well - as they would have expected - through the night. She seems to be out of the "danger" zone, though as the day progressed, she became more and more agitated every time she woke up. They were not able to keep her comfortable, and she cried and squirmed and signed for drink all day. She was absolutely miserable. They said all kids respond differently, but she is on the more difficult end of the spectrum. She did not respond with the amount of drug dosage they normally give her size little girl, they had to give well above what they thought they would have needed. It has been exhausting for all of us. We feel so bad, so helpless as we hold her hand, try to comfort her, but really there is nothing we can do for her. They did take the breathing tube out of her today, so that is good - she is breathing normally on her own. Her heart went in and out of a normal pattern, but as the day has gone on, she has been fairly consistent on her own. We are praying for comfort, that she can stay asleep as that is the only time she is comfortable, and that her body will continue to heal quickly. I was able to hold her for a little while this afternoon, but with all the wires, tubes, IV's, etc. it was really hard to keep her relaxed enough and not get all tangled up in my arms. I got to hold her for probably 45 minutes or so. A blessing, but even then it was hard to have her look in my eyes and plead for a drink that I couldn't give her. :-( She tries to cry, but hardly anything is able to come out. She is probably in horrible pain. The poor thing. She is a fighter that's for sure - they are all saying that here. I think this may be a long night for her - she was fairly quiet last night. The only thing that kept me up last night was her her monitor that beeped every time her heart pumped. It was beeping around 110 times a minute which translated into 6600 beeps an hour which translated to us hearing approximately 59,000 beeps while trying to sleep - needless to say we didn't sleep much on a small single bed for both of us. Scott is going to stay at the Ronald McDonald house tonight so he can get a good night sleep before driving home tomorrow. I will stay here one more night with her before staying at the Ronald McDonald house starting tomorrow. I am looking forward to getting a quiet night sleep.

The picture of Scott is in the room we are staying at the Ronald McDonald House. The picture of Kahlia in bed is how she looked much of the day - struggle, struggle, struggle. The other 2 are of me holding her for a short time. Hang in there Kahlia!!!

It's 8:45pm and Kahlia has woken up twice. She can't speak because of the breathing tube going down her throat, but her eyes tell it all. She is in a lot of pain, and she even asked for a drink with her "sign". It was horrible to see the pain in her eyes...the nurse would then give her some medication, and she would immediately fall back asleep. Heart wrenching for sure, but they tell us that she is responding normally. Her heart rhythm has changed a couple of times which is normal for a post op patient, but not normal for what they want to see in the next couple of days. Pray that her heart stabilizes to a normal rhythm permanently so there will be no need for a pacemaker. God is good, my body is fatigued from the stress of the day, but very grateful one day is behind us.

Praise the Lord. Kahlia is out of surgery and is now in the PICU. She is not out of the woods yet by any means, but she is doing well according to all the doctors. She has woken up briefly several times, and looks like she is in a lot of pain, but then they give her more medicine, and she relaxes and goes back to sleep. No sound comes out because of her breathing tube, but she looked like she wanted to cry a couple of minutes ago, and she looked like she was hurting really bad. So hard to see her this way as her little eyes look up at you and probably wonder what is going on. She did her drink sign with her hand - she's thirsty - I'm sure the breathing tube down her throat is not much fun for her. :-( It was hard to see her for the first time after surgery - we knew what to expect and were well prepared by the doctors, but it still doesn't completely prepare you for what you see and feel. It was over whelming, the tears came once again as we looked at our precious little girl hooked up to so many machines, tubes, gadgets, etc. She's a little fighter though, and we are so very proud of her. This will probably be a long night for us as she learns to adjust to her newly functioning heart, but what a blessing that she is doing well right now. There was a risk of needing a pace maker long term, and that will not be the case - praise the Lord. We felt everyone's prayers today - it was a long and stressful day, but we are amazed at the out pouring of love and encouragement we have received by those we know and even those we don't. I will probably post more later, we are tired and ready to go eat dinner.

Our pre-op appointment went well this morning. We met with Kahlia's surgeon - Dr. Langley, the Physicians asst., and the nurse practitioner. We went over the risks and exactly what will take place before, during, and after the surgery. They took some blood for lab tests, and we got a tour of the PICU. While in there - we ran into Dr. Armsby who did two of Kahlia's Cardiac Caths. She was so friendly and nice - we also saw another Cardiologist that I have seen on several occasions while here - everyone jut loves on Kahlia, I know she is in the best care possible. Though scared, I feel a peace. Kahlia's ear swabs came back clear, so she no longer has to be in "isolation" every time we come to the hospital. I am also able to stay in the Ronald McDonald house after I spend the first few nights with Kahlia in the ICU. I was at first denied since she was not cleared with her ear "bugs" - but now that it has been over 3 months since her infection, and the lab came back "normal" all is well. :-)
It's been easy to break down these last couple of days. I feel strong most of the time, but sometimes it's hard not to think about the "what if's".
We will be at Doernbecher Children's Hospital at 6:30am. They plan to take her back to the operating room at 7:30. It usually takes them a couple of hours of preparation before the surgeon actually begins. He expects the surgery to last 4-5 hours. We should know how she is doing post -op by mid to late afternoon.
Again - thank you to all who are praying for our family - we really feel God's covering during this stressful time. God is in control - we know that. I will post updates through out the day tomorrow.

Happy Birthday to our beautiful Kahlia! :-) She is 2 years old today, and we are so grateful we were able to celebrate her birthday at home before her surgery in 3 days. It was a HUGE blessing, and so fun to watch her try and open all her presents. She had a little princess party since she is our little princess. Tomorrow we leave for Portland with Kahlia's pre-op appts. on Monday first thing starting at 8am. She will have about 4hrs of appts. - sigh... Not looking forward to leaving my other kiddos tomorrow. Really quite sad. Makenna is taking it VERY hard - acting out, crying, I don't think she knows how to handle the emotions that are inside of her right now. So tough for a little one. :-( Now that her little birthday party is behind me, I am beginning to really think about what is to come in the days to follow. We had a special prayer time for Kahlia tonight - I'm so grateful for so many family and friends who are praying hard for her - I'm scared - really scared. We ALL could use a few extra prayers these next few days...

When it rains, it pours... :-( One of our dogs - Buddy - hasn't eaten in days. We thought he would get over what ever he has, but he was eating NOTHING. Because Kahlia's surgery is next week, we HAD to take him to the vet today to see what was going on. He had a "blockage" in his colon/small intestine area - they had to do emergency surgery tonight - just what we needed right now...they found a wierd food substance, dog hair, rocks, pine needles, you name it!! If only the dog would just stick with his tried and true dog food! He will hopefully be discharged tomorrow - if he eats and poops....FRUSTRATING, but I'm glad we took him in...

I just got back from reviewing the results of Kahlia's ESD evaluation that was done last month. Signed all the paperwork, and we're ready to go as soon as I call them after coming home from the hospital. She is VERY behind for her age - even more so then I suspected. At the time of the evaluation, the test results indicated that she is anywhere from 8-13 months in her level of skill. She has A LOT of catching up to do, but they noticed even today a big improvement from where she was a month ago - so I am hoping she'll start catching up as soon as she starts therapy. Sadly, this month in the hospital will actually put her back even more, but the "catch up" should happen pretty quickly with a repaired heart that is functioning correctly and having ALL the oxygen that she needs - she's not going to know what to do with all of her new found energy! She's a mover and a shaker now! That's why I believe our little Kahlia is such a little fighter. Here is a beautiful picture of Kahlia taking a bath - she LOVES baths - splashing and playing in the water. I specifically wanted to take this picture showing her chest before there will always be a scar. The scar, however, will always be a reminder that it gave her LIFE.

During our family devotions tonight, Makenna broke down crying because she didn't want me to be gone for so long...I have been so focused on Kahlia, and me missing my kids, I forgot that they might actually miss me too!!! It broke my heart to see her big tears. Afterward, I crawled into bed with her and had a good heart to heart. The tears went from tears for me to tears for Kahlia. She is getting really worked up about the upcoming surgery - she is really scared Kahlia's going to die. I tried to tell her not to focus on that and be sad for something that hasn't happened, but that's easier said then done -even for an adult. I told her to focus on the fact that this is actually a good thing - the surgery is making her BETTER - with out it she will die eventually - 100%. We (the doctors) are doing everything they can to get her through this thing - and she has already proven that she is a little fighter. I think next Tuesday will be a tough day for the kids at school - I hope their teachers understand. :-( I wish I could take the kids' fear away, their anxiety, their anxiousness. I wish I didn't have to be gone so long - I've never come close to being away from my kids this long before. Lord, grant me the peace I need to get me through these coming weeks.

An explanation of the photos...first picture is Kahlia with a play football helmet David got for his birthday from his Aunt Trisha and cousins. :-) Second, I accidentally uploaded the same picture twice, and I can't seem to delete it - I so cannot problem solve on a computer!! Anyway, the next photo is Scott and the kids playing "doctor" with our dog Symphony. She really did need a doctor - but Scott not wanting to pay a Vet bill, he decided to take matters into his own hands, we'll see how that goes...He brought gowns for the kids - mom stayed as far away as possible - she has a pretty severe wound that really needs attention - sigh...the next pictures are David with his Toy Story/Buzz Lightyear birthday cake, and David with all the friends at his party. There were seven friends plus David and 8 "others" - siblings and cousins. The last picture was taken the first day of school on September 7. Cute kids if you ask me! :-)

It's all about the little milestones along the way. I couldn't find Kahlia yesterday, and when I finally found her crawling out of Makenna's room (soon to be hers too), she had put on one of her little black church shoes all by herself - and even velcroed (sp?) it together - I was SO proud of her!! It took her a while to do it, because I saw her first reaching for her shoe 10-15 min. before, but she did it!! :-) Then, this morning, I heard her in the monitor, but since Scott was still in bed, I was hoping the "daddy duty" would kick in and he would get up and get her. Well - the "daddy duty" never happened, and the next thing I know Kahlia comes crawling into the kitchen!!!!!!!!!!!!!!!! She had escaped from her bed, somehow got off the couch, crawled across her dark room, opened her door (it was cracked open - she's not THAT good yet!), crawled through the utility room and into the kitchen - I was completely amazed. I love my little girl! :-)
Brendon ran the kids race today sponsored by the Boys and Girls Club as part of the Fun Festival. It was a 3 mile run - he got first place for his grade - ran it in 23:25 - proud of him too - actually - I have to say - I'm pretty proud of all my kids - I think they're all keepers! :-) Wish dinner could be instantly made - off to start thinking of what to feed the fam this dark and dreary afternoon. Ugghhh....

UPDATE!!! They have moved Kahlia's surgery up one day - she is now scheduled for surgery on TUESDAY, Sept. 28 - a week from Tuesday. Her surgeon is going out of town the following week, and he wanted to have an extra day to "watch" and be available for Kahlia. That means we will have 4 hours of pre-op appts. the day before - including a tour of the PICU. I'm very grateful for a great team of Cardiologists up at OHSU. A young mom that we know in our area went through open heart surgery with her 2 year old son this past Wednesday, and they were discharged today. As the different Cardiologists were making their rounds, she told every one of them to take good care of Kahlia next week when she comes in. Every one of the doctors knew of Kahlia, and they all assured her that they would take good care of her - that is so cool! :-) Reality is beginning to set in though. I had a dream about her surgery last night - don't remember details, just remember waking up "unsettled". I'm praying for peace that passes all understanding - that's all I can ask for. Our kids are also showing signs of "stress" as we talk about her surgery. They feel so bad for her - this is tough for Scott and I to really process and take in, I can't imagine being a little one trying to process all of this - I feel so bad for Brendon, Makenna, and David! It's definitely a life changing experience for them - I did not have to deal with anything close to this at their age - but it's reality, and it can happen to any of us at any time. As long as they know they have a loving God wrapping His love around them through this time, and that He is in complete control of Kahlia's future, then they are as equipped as they can be for the upcoming days....
We finally had David's 6th birthday party yesterday after school. We waited until school started so he could invite his school friends. Not sure that was the best "mom decision" I ever made - but I am very grateful that it is now behind me!! It was COMPLETE chaos - 8 little boys plus 8 extra siblings/cousins - it made for a very LOUD house for 2 hours with 16 kids! It was raining for most of the party, so we had to be in the house the entire time. Let's just say, I'm glad David had a good time, but I sadly found myself looking at my watch willing the time to go by quickly!! But, it was all worth it to see David glow as he anticipated his party, as his friends began to arrive, as he opened his presents, and as he blew out the candles on his cake - absolutely precious and completely worth it! Kahlia didn't respond well to the noise and activity. She became completely inconsolable - to the point where we had to take her to the other end of the house where it's quiet, and we actually ended up putting her down for a second nap and she really slept! I think the stress level it was causing in her body fatigued her, and she fell asleep instantly when we put her in her bed. The poor thing! We are celebrating her birthday next Saturday evening - hopefully she won't respond the same way at her own party! We will not have very many loud squirrely boys, so all should be ok.
I got to watch Brendon's first football game today - and they won!! :-) He's a good little football player if I do say so myself! He had some good tackles, and even ran with the ball once or twice! :-) I get to watch one more game on Saturday, then it looks like I will be missing the rest of the season - I'm totally bummed. :-( I wanted to post some pictures from David's party and Brendon's game, but I have been using a different camera these past few weeks, and I can't figure out how to transfer the pictures onto the computer - if I did get them on, then I can't find them on my computer!!! Oh goodness -computers can be so wonderful, but they can be so frustrating if you don't know what you're doing!! Sadly, I fall into the second category more then I care to admit...oh well!

Dr. Carlson (Kahlia's Cardiologist) called this morning with the date of Kahlia's surgery. If all goes as planned, she will have her open heart surgery on Wednesday, September 29 - just 4 days after her 2nd birthday. So grateful the surgery is AFTER her birthday so she can celebrate her birthday at home before going to the hospital. I'm hoping to get her 2 year pictures taken tomorrow - her first "professional" pictures since we've gotten her. Hope she cooperates, and gives us lots of smiles! :-)

I meant to write last night, and completely forgot! Yesterday was Scott and my 11th anniversary! We went from thinking we wouldn't be able to see each other yesterday, to me coming home to a wonderful home cooked meal by my husband - he even did the dishes!! :-)
Kahlia went from almost being put in the ICU, to having oxygen sats in the 90's over night. WOW!! Her body took a turn for the worst before it got better - but now it's doing what it's supposed to be doing with arteries "stretched" once again to allow more oxygen to the body and lungs. What worries me now is though her body eventually "kicked in", will that happen at a more elevated level after surgery? That is the big question.
The Bible says "Pray with out ceasing". God wants us to have prayer and communication with him THROUGH OUT the day, always, having Him in our thoughts and mind. Seeing how I believe God really did answer our prayers Friday night - it is reassuring to know that YES, there is power in prayer. Thank you to ALL who have lifted Kahlia's little life up in prayer. She is preparing for the biggest fight of her life, and I am preparing to "pray with out ceasing". Though I am afraid - God is with me. He will never leave me nor forsake me. THAT I can hold on to as we venture into the unknown.

Today has been a VERY long day. We checked in OHSU at 11:00am. Kahlia had nothing to eat since the night before, and couldn't drink past 10:00. They told me her Cardiac Cath would be at 1:00, but they didn't take her to surgery until 2:40 - grr... she was SO SO fussy for hours - I'm sure hungry and thirsty!! They gave her something to calm her so they could put the IV in, but by time the IV person came, it had worn off - she screamed through out the whole ordeal. I was SO frustrated that they didn't give her more "happy meds" to calm her down. Her nurse was at lunch, and the others didn't think about it. The actual procedure took 3 hours - and another hour passed before Dr. Armsby came to talk with me about her findings. She was reviewing the results the whole time. They were disturbing to her. Her pulmonary artery watching the actual footage of her heart beating completely closes off at one point. SCARY! It opens back up, but not near the size it should. She did see more small vessels in her left lung - something that she couldn't see last time. The right side they are much bigger. Don't ask me to explain why because I just don't know! Her O2 sats were very low afterward which also concerned Dr. Armsby. They were only in the mid 60's - last cardiac cath she was in the low 90's and even hit 100% once - what a difference between the two caths! They were ready to put her in ICU over night if she didn't come up. Finally - after she calmed down ( she cried for a very long time after whe woke up), and fell asleep again, her numbers began to go up to the mid 70's - praise the Lord!!! So, she didn't have to go to ICU, and she is being watched over night in the regular children's ward. I also got to meet Dr. Langley - which will be here surgeon for her open heart surgery. They were concerned, and said her surgery would possibly be early next week with out her being discharged from the hospital. However, if her numbers stay up in the 70's, then they may discharge her, and schedule her in the next couple of weeks - I will know more tomorrow morning. I really would like to be discharged tomorrow so I can go home and prepare for our month long stay here at the hospital. Also, Scott and I celebrate our 11th anniversary tomorrow on September 11. Also, we just sent out invitations to David's birthday party that is supposed to be next Friday evening - would hate to have to cancel that. Also, I was hoping to get her 2 year pictures taken before her surgery. We will see - Kahlia's health is most important at this point. I am SO SO tired - bed, here I am - take me away! :-)

After picking David up from his first day of Kindergarten (sniff, sniff) - Kahlia, David and I headed off for Eugene to see her Cardiologist that goes to U of O once a month. Her O2 sats were still low 70's at the highest. The plan now is for her to have her Cardiac Cath on Friday. The surgeon will measure her arteries to see if they are any bigger still from the ballooning of the arteries last month. If they are, then she will put in a stint to help keep the arteries stretched out longer to prolong her surgery to allow her to continue to get healthier and stronger. However, if there is no difference then before her cath last time, then she will most likely not put in the stint, and will still balloon open the arteries, and we will schedule her for her open heart surgery sometime in the next few weeks. Now I'm starting to get a little nervous, and scared. I know it is completely out of my hands, but I feel helpless and afraid. On one hand, I want to get it over with so she can start recovering and living with what we know as "normal" oxygen levels. The other part of me wonders if she is healthy enough - strong enough. Dr. Carlson said that she will be very sick afterward, and will probably be on a breathing tube for at least a week. With the combination of the breathing tube and also pain management, they will probably have her sedated for at least the first week after the surgery. She will most likely be in at least a month. The first 48 hours are critical to gage how the rest of her recovery will go. If she struggles and things are rocky -her recovery will most likely be slow. If she sails through nicely those first few days, then that is a good indication that she may have a quick recovery. I know what I will be praying for!!! Quick recovery, and a little girl who is going to fight like crazy. Looking forward to getting this part of our journey behind us. It's easy to grow weary, but there's no time for that!! Please pray for wisdom for the doctors this Friday as they make decisions on Kahlia's health and heart. Pray for peace for our family as I know this will be a stressful time wondering about how Kahlia's body will respond to the stress - in addition to Scott's campaign gearing up for election day Nov. 2...overwhelming...

This past Friday, we found out that Kahlia is scheduled for her Cardiac Cath THIS Friday - Sept. 10. I'm bummed because I will miss Brendon's first ever tackle football game, but we also don't want to prolong any procedure that will help her get closer to our final goal - her actual heart surgery. Tomorrow - David, Kahlia and I drive to Eugene to meet with her Cardiologist who often comes to a clinic there. It's a busy week as tomorrow is the kids' first day of school, and we just came home from Family Camp an hour in a half ago. What a wonderful time we had. :-) A family tradition we hope never to miss. Kahlia had a blast playing in the sand at the beach and lake, and I sat her down in grass for the first time. It was very interesting to watch her try to crawl, then FEEL the grass and look at her hands as pieces stuck to them. She was fascinated by the texture of grass. Since she was only scooting before, grass was never an option. Now that she is on her hands and knees almost exclusively, it is easier to put her down places - though still not as easy as if she were walking! We saw a cute little girl at the camp that turns 2 in October - it really put into perspective how very far behind Kahlia is, and yet she is making HUGE leaps and bounds - soaking in and learning every day.
We put her in the nursery at Family Camp - her first nursery experience ever. She did absolutely wonderful. When I went to leave - I said good bye to Kahlia, and she just looked up at me with a big smile and waved goodbye. Couldn't have been easier. However, she is beginning to show more assertiveness in what she wants or doesn't want. Good to see - though now the "real" parenting begins! :-) Though not big fits yet, the beginning of them for sure.
We are really hoping that the surgeon puts in a stint this time which is what they were going to do last time. It should help keep her O2 level higher longer. More details to follow as I know more. Please keep Kahlia in your prayers this Friday. We can't even check in until 11:00 - and she can have absolutely nothing to eat since the night before. Her actual procedure is at 1:00.

What a beautiful day it was! :-) Our family (minus Scott) enjoyed our day out at Honeyman State Park with Scott's mom, sister, and her 3 kids. It was the most beautiful day of the summer!!!!! The kids played in the sand, and in the lake for hours - with out getting cold!! Kahlia has been going through a learning curve with sand - I think she finally realizes that sand doesn't taste too good, and it is definitely hard to chew! She ate lunch, took a nap in her playpen right on the sand, then played in the sand the rest of the afternoon - we were all sand covered from head to toe - but so worth it for such a gorgeous day. This picture in her play pen is SO cool! It's hard to tell, but she actually pulled herself up all by herself! No more putting the blanket over the play pen and her going straight to sleep - it took her about 45 minutes to go to sleep because she was DETERMINED to get herself pulled up! It took her 5-10 minutes to figure out how to even reach her hands high enough to grab the top. Then, after she mastered that task - she proceeded to pull and pull until she was almost in a complete standing position. I could hardly believe it! She barely puts weight on her little feet - so what this picture shows is mostly her incredible arm strength. We are in the process of trying to find a really good pair of supportive shoes in a size 1 - could be difficult -we'll see.

We are off to Family Camp tomorrow at Twin Rocks Friends Camp - our favorite family tradition. Can't wait to make some more memories - Kahlia's first Family Camp - yea!! :-)