We're in the books....

So we finally have a date for Teagan's upcoming Glenn- although its NOT next week like we were hoping. By the time the scheduler got a hold of me, the OR for next week was already completely booked. Teagan will be having surgery on Tues. Sept. 9th but they want to admit her on friday the 5th.... 4 days before surgery! We're supposed to be there next friday at 9am and we'll have our pre-op appts. with the surgeon, anesthesia, the charge nurse, etc... then they'll admit her. I was hoping to be admitted the day before surgery but they want to monitor her sats and evaluate her feeding issues for a few days before the 'big day'.

I had everything lined up perfectly for a surgery date next week (care for Gav, Trents work schedule, housing for us, etc...) So now I'm in the process of re-working all of those things. I guess I should have assumed that it wouldn't go the way I wanted, right? But I know that there are babies that need surgery even sooner than Teagan and thats why the OR is so full, so we're praying for all of you out there!

Today is Trent's mom's birthday- Happy Birthday Nana! We can't thank you enough for all of your help these last few months! We love you!

Still waiting...

So I finally got a hold of someone from the heart center yesterday after not hearing anything for 2 days. The lady I spoke with told me that the cardiac surgery scheduler was actually out of the office this week until THURSDAY! She said that no one had told them that we were expecting a call and that Teagan needed to be put on the schedule! She assured me that either her or the scheduler would call thursday morning and get us a date.... I guess there's only one person at Children's who schedules heart surgeries? Anyway, she was actually very nice and I talked her into peeking at the O.R. calendar to see if there's any way we'd be headed over next week or if we were talking like 2-3 weeks from now. She looked and said the 'rumor' is that there are openings on Tues. and Wed. of next week. I guess we'll find out tommorrow!

I keep reading this same sweet poem on alot of other blogs and wanted to post it here on ours, its so perfect!

"A Beautiful Day"

It's a beautiful day up in heaven. Jesus is gathering his baby angels to send to earth and be born. One of the sweetest angels says to Jesus, "I don't want to leave. I love it here and I will miss you." He reassures the scared little angel that everything will be fine and that this is just a visit.

The tiny angel is still not swayed on this idea so Jesus kneels down and says, "How about if you leave half of your heart here with me and take the other half with you. Will that be okay?" The angel smiles and says, "I guess that will work." But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies, "Of course you will. I have other angels there that will help, and will love you so much."

Then Jesus gives the tiny angel more details about His plan. He says, "When you are born, your mommy will be scared so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. When its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

No date yet...

I know alot of you are as anxious as me to find out the date for Teagan's Glenn! I'm supposed to hear from scheduling today or tommorrow to set the date, and since I heard nothing today- then I'm assuming tommorrow. If I don't hear by mid-day though, I may call them! I'll update as soon as I know anything!

Weekend Update

Friday was such a nice day here, so we decided to take the kids out to the county fair. Gavin
loved looking at all the animals and picking out which rides 'looked scary.' All he wanted to do from the minute we got out of the car was ride the ferris wheel! So we made it over to the ride and had the tickets ready but it turned out that he wasn't tall enough! :( Maybe next year...


Here's Gavin playing around with my guitar. He definitely shares my love of music and I can't wait to see where it takes him!


Friday evening we got together with Maddie's family and all went out to dinner. Maddie is doing so great at a month post-Glenn and it makes me want the surgery even more for Teagan. The picture below really illustrates what a difference the surgery makes! Maddie is so happy, bright-eyed, and pink (for a heart baby)! She's gaining weight and just has that 'spark' that I long for Teagan to have. Seeing Maddie do so well is really uplifting. I can't wait to post a pictures of our two spunky girls playing together in a few months once Teagan is feeling better post-op!

5 months old!

Just a quick post to say happy 5 month birthday Teagan! We had a good day today, and she was pretty happy as you can see! She's almost rolling over from back to tummy and today she started grabbing her feet!

Back Home

We made it back home around 3 today and the drive back was much better than going over! Teagan is doing ok, she's a little irritable and not sleeping great though. She definitely wants to be held more and hates when I walk out of the room! Gavin came home today, and its so nice to have the family all back together again! I'm taking Teagan in to the cardiologist tommorrow for a quick checkup and then we'll wait to hear from surgery scheduling next week.

Update

Teagan in the final recovery room....

We received a page around 10:20 saying that they were finishing up and that Dr. Johnston would be out to speak with us. He said that the cath went well and they didn't have to make any 'adjustments' (no stenting/ballooning etc...) He took some pictures of her heart and measured her pressures. They also took her SAT readings from blood samples taken directly from her heart and her 'true SATs' are around 69. Her heart pressures were good enough to handle the Glenn and he said her pulmonary artery looks 'great' and is a nice size. Dr. Johnston would like to schedule her Glenn for sometime in the next 4 weeks, but doesn't think she is an emergency case at all. They are planning on presenting her with the cath lab pics next monday, and then someone is supposed to call me next week to schedule her surgery date. Trent and I were relieved to hear such good news! Dr. Johnston isn't the most enthusiastic guy but he seemed to be pleased with the way she looked. He did say though that he wants us to stop her Captopril until her Glenn surgery, to hopefully help her maintain her sat's. She normally takes 2ml-3x's per day so it will be nice getting rid of that for now!

We were told that Teagan needed to recover in the 'phase 1' room for about an hour before we saw her, but around 11:00 they paged us again and asked for me to go back there and bring her food. They don't normally let parents in there, but Teagan was really upset and they couldn't get her to calm down. When I started down the hallway I could hear her screaming and I started to panic! I grabbed her from the nurse and wrapped her up tight. Her heart rate was 200 when I got back there and her sat's were in the low 60's with oxygen. I was able to calm her down a bit and feed her some and she began to fall asleep. I ended up staying back there with her for another hour while we waited for her sat's to come back up. This was the deciding factor on whether to admit her overnight or let us go later today. So after an ekg and a quick chest x-ray, her numbers started going back to normal and we were sent to the final recovery area where we began before her surgery. (see the pic below) Poor Trent had been sitting in there alone for the last 2 hours not knowing what was going on! So right now we are still in the final recovery room and everything is going great. They want to keep us here for atleast 3 hours to make sure her incision site isn't bleeding and that she can maintain her sat's on her own. She's asleep in her little hospital bed and her heartrate is 121, sat's are 81- yay!! If everything stays this way, we'll be out of here later this afternoon! We're staying another night at the hotel to hopefully relax and let her rest before putting her back in the car for the long drive tommorrow. I have a few pics from her cath that I will put on here when I get a chance.

Overall, her cath was a success and apart from the little scare we had post op, she's doing great! Please keep her in your prayers that she will recover quickly and we can get out of here soon!

Cath Underway....

Here's Teagan in her hospital gown, just before we handed her over....

We arrived here at the hospital this morning around 7am and were taken back pretty quickly. Teagan was doing really well for not eating since midnight, she even gave us a few smiles. We met with Dr. Johnston, the anesthesiologists, and several nurses before handing her over around 8:30. My biggest concern was that she would be terrified and in pain while they were starting her iv, but they assured me that she would be given gas, and be in a deep sleep before they began. Its the weirdest feeling handing your baby over to the dr.'s and watching them walk away with her. I had a little 'moment' after they walked away, but I'm much better now and am just anxious to hear the results.

They told us the procedure should last anywhere from 1 1/2 hours to 3 hours depending on whether they have to stent anything open or make any other adjustments. We're not sure yet if we'll be staying overnight or leaving later today- it all depends on what they see when they get in there. We have a pager so they can let us know when we can see her. They also said that if they have to make any 'adjustments' while in there, they'll page us to let us know about that too. So right now Trent and I are upstairs in the family resource center trying to get my laptop connected to the internet. (I'm on the hospital computer now) If we get it connected, I'll post a pic of Teag from this morning right before we handed her over. She looked pretty cute in her little hospital gown!

Our trip over to Seattle yesterday didn't exactly go as planned, and I was once again reminded that we are definitely not in control! We left around 12 noon for what should have been around a 3 1/2 hour drive. We had planned to check in to the hotel, have a nice dinner, and just relax before our big day today. Little did we know that half of Seattle would be trying to get over the pass and get back to the city yesterday! We hit stand still traffic just after Ellensburg (about half way) and long story short we pulled into the hotel parking lot at 8:30pm!!!! Yes, 8 hours in the car! We were joking that we could have been in Calgary by then.... I was so angry and frustrated that things weren't going our way and that Teagan had to be in her carseat for 8 hours the day before her cath. But in the end we made it- not as planned, but still ok and it gave me a better mindset for today I think. I was once again reminded that no matter how many lists I make, or how much I plan- I am not in control, but HE is. Trent and I know that no matter what the dr.'s come back and tell us later today- god has a plan in place for Teagan and as hard as it is- we need to place our worries on HIM and not take them on ourselves.

I will update later with the latest, as soon as we know anything! Thank you all for checking in on us today, for your prayers and thoughts! We love you all!

Headed Out...

Teagan, on our way to dinner- too busy staring at daddy to look at the camera!

My happy girl

Trent, Teagan and I are headed over to Seattle in the morning to settle in before Monday's cath. Tonight we went out to a nice dinner and held Teagan all evening while we talked about the coming week. We're uncertain how long we'll be there and it will depend on the results of her cath. They're basically going in to 'investigate' and see how her heart looks from the inside. They'll look at her shunt and possibly open it up more if it is blocked at all. They will get a good idea of whether or not her heart is ready for the Glenn surgery and when she will need it.

I've definitely been through a rollercoaster of emotions this week thinking about everything Teagan has already overcome and the hurdles still in front of her. I'm glad we're going over when we are though. This week Teagan is definitely showing signs that she is struggling more and more each day. I'm feeding her via her NG tube probably 65% of her feeds because she just doesn't have the energy. When these babies are oxygen deprived, they give up some of the easiest things first- and with Teagan this has always been eating. She's not sleeping very well either, waking up several times throughout the night- even when she's full. Her coloring is pretty pale and she is getting sweaty sometimes just sitting in her bouncer seat. Its so hard to see our little 'Teagee' feeling so crummy, so for this I am excited that the dr.'s can hopefully bring her some relief!

Our plan tommorrow is to arrive in Seattle by early afternoon, check in to our hotel and spend a relaxing evening together. More updates to come!

Goin on a bear hunt...

Gavin down at the river

Gav & Trent in the Meadow
Here's where Trent shot the bear!
Gav, Trent & the BEAR!
Show me your teeth!

We had a fun weekend up in Twisp and made it home late last night. The kids and I hung around the house most of the weekend enjoying the river and the nice weather. Trent went bear hunting friday and saturday, and on saturday he shot his first bear! He didn't make it back home with the bear until around 10pm that night but we let Gav stay up so he could see it. You should have seen Gavin's face when Trent pulled it out of the truck! Its one thing to see a bear at the zoo or on tv, but when your dad brings one home- its pretty impressive! Trent showed him the paws and the big teeth, and Gav was so excited!

Teagan is leaning on her NG tube more and more lately. She's just too tired to finish her bottle (or sometimes even start one) and she usually gets really sweaty and out of breath when she's eating. I know these are signs that she needs the next surgery soon, its just so hard to think about handing her over. We are still scheduled to go over for her heart cath next monday around 7:30 am. I'm really anxious about what the cath will show because they can see alot more than on the echos that she's been getting at the cardiologist. From what they've told us, depending on what the cath shows they'll either do surgery the week after or a month after so we'll see. I'd prefer to wait a month so that she can keep packing on the pounds! -and so I don't have to hand her over so soon... I know that ultimately she needs the surgery to get better, there's no way around it. Its so hard to think of things in the 'medical sense' now that she's been home with us for 3 months and is such a part of our lives. I am praying for a sense of peace this week knowing that God is in control and will be holding her when we cannot!


Thank you to everyone who is still praying for Teagan and our whole family. It was so good to see so many of you this weekend and show Teagan off a little! Your thoughts and prayers mean more than you know and we wouldn't be doing as well as we are without them!

Heart Cath Scheduled....

So Teagan had an appt with the cardiologist on wed. Amazingly, her SATs were 78! But her echo showed that her heart is still swollen due to the increased workload, and her tricuspid valve is still leaking 'moderately'. Dr. Toews put in an order to have a heart cath as soon as possible and after that they should know more about a surgery date. He said if there's a blockage in her shunt, they might be able to open it up and buy her another month to gain weight. But if the cath shows that her heart just needs the surgery, then they'll be scheduling that in the weeks after the cath. So for now she goes in on Monday Aug. 18th and she's first case around 7:30am. If all goes well, we should be released later that evening. I'm excited that this could possibly buy Teagan another month or so and ultimately help her heart to function. But I'm a little nervous because this will be her first cath, and the thought of being back in the hospital gives me chills...

This weekend Trent and I got the ok to take Teagan with us up to his parents house for a visit. Its so nice to get away from our house for a few days, and Teagan seems to be handling the trip great so far! Gavin has been up here for 5 days now and is definitely 'earning his keep' helping out his 'Pacaw'. He told us that he had alot of work to do... feeding the horses, watering the plants, and picking up the hay in the harrowbed! ha... He's definitely a country boy!

Laying Low....

Its been awhile since I posted (sorry!) so I thought I'd give a quick update. Since last monday we've pretty much been laying low, staying close to home and trying to enjoy the rest of the summer! After only 4 days with Teagan's NG tube back in she weighed 11lbs 1/2 oz last Thursday! She gained 3 1/2 ounces in 4 days! A nurse from a group called "Heart Links" is coming to the house tommorrow to check her SATs and weight. I'm told that she can also help me with her NG tube placement, or any other health needs Teagan might have. If all goes well, I think she'll be able to come once a week! Teagan has an appt. with the cardiologist on wed. and I'm hoping for some information or a 'plan' for the upcoming cath/Glenn surgery.

Trent's mom came down Friday and took Gavin back home with her for the week. Its hard being away from him, but I'm loving the break and he's having a great time! I've been spending alot more quiet time with Teagan just holding her and napping together. She's becoming quite the talker, and her head control is getting much better too!