We heard from Kahlia's Cardiologist today. The Cardiac team met yesterday and discussed her diagnosis and treatment at length. They decided that it was not in her best interest to do her entire surgery right now in the condition she is in. They are going to put in a shunt between the aorta and the pulmonary artery - to allow more blood flow to her lungs. It is still a major surgery, just not the full repair that she will eventually need. She needs to get stronger, begin to grow, continue with good nutrition, and get her oxygen saturation levels up before they feel she can handle the even greater surgery. She said that if they did the entire repair now, her lungs would have a hard time handling the amount of blood flow that is "normal" to us, but certainly not to her... her recovery would be intense and long, and all the ground we've covered with growth and nutrition would be compromised with the amount of stress put on her system. I'm bummed that we have two surgeries coming up instead of one, but I trust the doctors and what they think is best for Kahlia. It doesn't look like the surgery will be until the week after next. Bummer for her, but good for me so I don't have to miss Brendon's State swim meet! We will find out in the next couple of days the exact date of her surgery. Since her hospital stay last week, she seems to be even more tired, and her breathing is faster. It could be that they increased the dose of her heart medicine, and that makes her more drowsy. Anyway, the bigger surgery will probably be 6 months to a year down the road. Our journey continues as we continue to trust the Lord.
We are gearing up for a fun weekend with a childhood friend of mine and her family that are coming down for a visit from the Portand area. Looking forward to some good family time out at the lake, and making memories with our kids. Happy 4th of July everyone! :-)

So here are a few pictures from Kahlia's hospital stay the last couple of days...one with Scott, me, and Aunt "Christi". She is the cutest littlest thing - I can hardly stand it... :-) A mother's biased heart...just sayin'

We are home again. Nice to be in my own bed tonight. Note to self... next time bring your own pillow and towels because they do not provide them for the parents!!! It was a long night of lots of "beeping". The machines Kahlia was hooked up to are set up to beep when her oxygen saturation level goes below a certain level. Because hers is ALWAYS going below their "red zone" level, it was beeping constantly...all...night...long...I woke up at 6:30 this morning and saw among all the other wires hooked to her an oxygen mask next to her face - not on her just beside her - I guess they were hoping that she would get more oxygen just having it next to her? Seemed odd, but oh well. Dr. Carlson (her Cardiologist) seemed more concerned today then previous appts. In looking at the results of the Cath, she was amazed that she has not had tet spells with us. I guess kids who have those start crying, getting more and more worked up, to the point of turning blue and even passing out. With her pulmonary artery almost nonexistent, she assumed there were other smaller veins that she "grew" to help bring blood to the heart. That ended up not being the case, so she is frankly amazed at how well she is doing...We were sent home with oxygen tanks "just in case" we encounter one of those spells between now and her surgery. (Someone is coming out tomorrow morning to show us how to use the oxygen tanks!) The biggest thing is to keep her calm and not allow her to get to worked up. Thankfully we haven't really had to deal with "fits" with her - she seems very good natured. That could be one of two reasons. One, she is just easy going (I can always hope, right? :-) ), or two, she has had previous tet spells, knows what they feel like, and chooses to not go there again. It's really hard to say. We find out Tuesday when her surgery will be. Though it is not an immediate emergency - they are treating her as a very urgent case, and want to get her in as soon as possible. I just want her to keep her ears infection free, and we will most likely go in the week after 4th of July. My love for Kahlia grows with each passing day. She has an amazing spirit about her - she has gone through so much - I KNOW God has amazing plans for this little girl...Our other kids are doing great with her. They all love her so much, still fight about who gets to hold her or play with her - frustrating, but glad to see that they love her, and all think she's the best little girl in the whole world.
David is a ring bearer in Tori Seviers wedding tomorrow - she's been one of our babysitters since Brendon was itty bitty! He is going to be SO CUTE in his little tux. Busy times, busy times, but God is faithful, I know that full well. Again...tired...so tired...zzzzzzzzzzzzzzzzzzzz ;-)

So here I sit watching Kahlia sleep at night in the hospital. Her cath went well today, and they have a better idea of how her heart is working. Good news, the surgery will be done here at OHSU - there was a chance we were going to have to go to Stanford - so glad we don't have to do that!!! Because she is a year older then most kids with her congenital heart defect (Tetrology of Fallot), her recovery time will most likely be longer. They told us today that we should expect to be here 10-14 days - ouch!! That is going to be a VERY LONG 2 weeks!
Her oxygen stats have been on the lower side all day today - averaging only in the mid 60's. One of the Cardiologists told me that if her stats continue like that through the night, we may leave here tomorrow with her attached to an oxygen tank until her surgery - that doesn't sound like fun - I'm sensing a pattern here - I'm not looking forward to the next 3-4 weeks!! But then again - what do I have to complain about - it's poor Kahlia that has to go through all of this - I can't even imagine what she will go through. We will find out Monday or Tuesday when her surgery will be.
At one point tonight the nurses could not find a pulse in her right foot. That was the side her cath went in so they were a little concerned. Her foot was warm so they knew blood was going through there, but they have to be really careful to check for blood clots. Luckily - with the help of a doppler machine - they heard the pulse - a little unnerving to say the least!
Eventually I will post some pictures of her here in the hospital - she had some cute moments, and some not so cute moments. I choose to remember the cute moments BEFORE the cath! :-) It's amazing how many wires are hooked up to her right now!
I am SO tired! As I type, I can hardly keep my eyes open. So tired - it's been a long couple of day. Ready for some rest!:-)

The weekend went well. Kahlia survived her first swim meet - an outdoor one at that! :-) She was so good, and there was hardly a moment when some kid didn't want to play with her! :-) We are all set for tomorrows aquathon for the three older kids from 4:00-5:30 - then we are off to my parents house. Kahlia needs to check into OHSU at 6:30am for her Cardiac Cath on Thursday morning. I am really praying all goes well. I am a little nervous - this is the moment of truth - when the doctors can really see what's going on with Kahlia's heart, and what and when they can surgically repair it. Last week Dr. Carlson (Kahlia's Cardiologist) told me there was a chance that after the surgeon looks at the results, he may refer her to another hospital. I said refer us out of OHSU? Where would she go? She said probably Stanford. I am REALLY hoping we don't have to do that. Not only would that be VERY inconvenient for all of us since my family is in the Portland area for easy access to OHSU, but that would also mean that her heart is in very bad shape, and they don't feel comfortable operating on her. My anxiety level is going up as the day approaches - please pray for wisdom for the doctors as they make very important decisions over this next week. Her future is literally in their hands...I will post again after her procedure on Thursday if I have access to a computer. Most likely she will be spending the night Thursday, and we will be coming home on Friday. David is the ring bearer in a wedding this Saturday - can't wait to see him in his cute little Tux! :-)

We made an unexpected trip to Doernbecher this morning...with Kahlia's oxygen stats in the 50%'s - her Cardiologist wanted to check on her. Her stats were a little higher today - high 60's - not good, but better then yesterday (either that or the machine in her Pediatrician's office isn't as accurate as theirs at OHSU). She also saw the ENT, and they confirmed that her ears are no longer infected - though her left side is still inflamed, and the tube already came out after just 3 weeks. GRRR!!! She was so good for them. They started poking around in her ears, and she just laid motionless looking at them - and they commented how good she was being. Before we knew it, she completely fell asleep on the chair with instruments prodding around in her ear!! It was hilarious - they said they had never had that happen before! But, we had woken her up an hour earlier then she usually does, didn't sleep a minute the entire 4 hour drive up - and it was an hour past her nap time. The poor thing is such a little trooper. So the plan is still to come back up next Wednesday night for her cath on Thursday morning...we're going to be logging a lot of miles up here this summer I think!!

Looking forward to a fun weekend in Eugene this weekend. Spending time tomorrow with my college friend Kristin in Eugene, then the kids have a swim meet Friday, Saturday, and Sunday. Meets always make the kids' hard work worth it! :-)

Today was Kahlia's appt. to see if the 14 days of IV antibiotics had done it's job. Dr. LaGesse (Dr. McKelvey is on vacation) checked her ears, and didn't see any infection just said "it's just weird in there". I guess her ears aren't exactly "normal". Who's would be if their's had been infected for probably over a year! He didn't take the pic line out though. He called her doctor at Doernbecher, and they opted to keep it in for another week just in case we started seeing drainage or the infection came back. Next monday she'll get it out, and Thursday will be her Cardiac Catheterization (sp?). I'm praying for clear ears between now and then!!! :-)
Yesterday she said her first word that we knew she was really saying..."hi" along with a smile and cute wave. Precious... she's very proud of her new word, and says it often. :-) What a joy it has been to watch her begin to blossom. She weighed 17 lb. 3 oz. today at her appt. She has gained 1 lb 2oz. since she has been back to the states. Today marks her one month anniversary of being in the United States. She has been such a joy to our entire family. We love her more with each day - and she is bonding really well with our family. The kids still fight about who gets to hold her, play with her, push her in the stroller. The newness hasn't worn off yet - what a blessing! She is starting to not go to other people as much any more - she wants to stay with me. That means she feels safe with me - so I must be doing my "mommy" job well!! :-)

Found out today that Kahlia tested positive for both Giardia Lamblia and Ova & Parasite. Great- Just another thing to add to her list. Apparently not a single pharmacy in our area would fill the prescription for what she needed, so we had to go to the inhouse pharmacy at Bay Area Hospital. Not the "normal" pharmacy - the one that is for actual patients at the hospital. I guess they made an "exception" - crazy! So now she is on 3 medications - crazy x2!!
Today I asked Kahlia where my eye was, and she pointed to my eye. I thought, well maybe it was just a coincidence - so I asked her, "Kahlia, where's mommy's nose? She pointed to my nose!! I've been working on that with her - so MAYBE she knows them. I tried later, and she wouldn't do it - I don't know - it's a small step though - encouraging! She's learning to "high five" us, and laughs SO cute when I blow on her tummy. She is a joy to all of us - Brendon spent a good half hour with her on the couch - just talking and loving on her - what a blessing that is to a mommy's heart! :-)

Last night was the first night that Kahlia woke up screaming. She woke up 3 times before midnight - and I have no idea why. :-( I couldn't tell if it was a painful cry or an upset cry. I'm still learning those things!! I felt so helpless, but each time she calmed down pretty quickly when I came in, so I wonder if she was having bad dreams or something. Anyway, I feel so fortunate that that is not the "norm", and usually she is a GREAT little sleeper.

Her IV antibiotic seems to be going really well. Finally - a job that ONLY Scott can do. All those sleepless nights with my newborns was always my responsibility - it's kind of nice to have Scott set the alarm and have to get up at 6:00 to take the antibiotic out of the refrigerator, 6:30 to put it in, and 7:00 to take it out. Secretly it feels good to stay in bed! :-) Every day, 6:30, 2:30, and 10:30 - a pain? Yes - but we think it's working!! Friday will be our last day for her - and we take her in on Monday here in town to see if her ears are cleared up. If they are, then we can have her pick line removed - and plan on her Cardiac Catheterization Thursday, June 24. That gives her body a couple of weeks to make sure she is infection free.

Yesterday we spent 9 hours outside watching and playing baseball. Both boys had two games each, plus an end of the year BBQ for David, and parent/kid baseball game with Brendon's team, and an end of the year pizza party for Brendons team and families. Fun day for everyone! Kahlia took her nap in her playpen right outside while we watched Brendon's second game. She was a little trooper. :-) The boys had great days of baseball - we are VERY proud of them! :-) We are very proud of daddy (Scott) too...he played baseball - and he can barely walk today - I think it's been a few years since he used those muscles!!!! They made the parents bat their opposite hand, and we couldn't use a mit in the outfield. We all had a great time.

Today we took Kahlia to church for the first time. Makenna was SO EXCITED to have the same dress on as her. They were very cute - couldn't resist a quick picture before walking out the door of our two beautiful girls.

She went to church for the first time this morning - her and Makenna matched dresses - Makenna was SO excited! I bought Kahlia's before we got her, so I bought it a little big - but she was still cute just the same.

Well, we found out some discouraging news today. We were prepared for it because we knew the tests were in process and had read up on them, but it's still hard to hear when it is confirmed....We got the results of Kahlia's genetic tests today, and she has been diagnosed with DiGeorge Syndrome. With that comes A LOT of things - all of which we do not know if she will have or not. It is very common with kids who have both a congenital heart defect and cleft palate. There are certain facial features ( her ears being one of them) that are "distinct", there are usually developmental and speech delays, small stature, immunity deficient and thymus gland problems, and possible psychiatric issues as she grows older. We are just lifting her before the Lord - praying for the little miracles along the way. She has lots of "teachers" (3 siblings who can't wait to teach her something new!) - I hope that helps as she learns to talk and communicate. Makenna taught her to put her hand to her mouth back and forth while making a sound - so she sounds like a little (Native American) Indian. Her new favorite thing to do!! She is so very proud of herself. If she keeps up with her beautiful spirit, and gentle demeanor, it will be so much easier to get through these hard days!
I'm having my own issues. I've had a head "something" since we came back from India. I thought it was just a head cold, but it's just not getting better. I've been on antibiotics for over a week thinking I had a sinus infection, but it hasn't seemed to help. I feel like I can barely function. Ugghhh... :-(