Friday, September 26, 2008

Enjoying Home

We've been home for 3 days now, and it feels so good! There's something almost theraputic about walking into your home again after a few weeks away. Even though we're all still exhausted, its so much easier to handle now that we're back. I'm loving my bed (even though we're not sleeping much) after sleeping at the hospital for the last few weeks!

Teagan had a great day today. Her nights and days are still all mixed up from being at the hospital (I feel like I took home a newborn!) but other than that she's good. She's happy most of the day but tires pretty quickly. Usually after about 1 1/2- 2 hours she's ready for a nap! I started some baby food with her and so far she seems to like it ok. Nothing that pertains to food excites her too much, but she swallowed what I gave her so I'm counting it as a success! She is still relying pretty much solely on the NG tube. She's less interested now in the bottle then she was post norwood! (If anyone has any suggestions that has been there, I'm open!) Ususally she eats 1/2 oz or so and decides to chew on the bottle after that. Sometimes she won't swallow any but she lets her mouth fill up then blows spit/milk bubbles letting it run down her chin... But even if she has to use the NG until her teeth come in and she's eating regular food, I don't care! Thats the least of my worries now, I'm just glad we're home and she's smiling!

Its so great to spend some real time with Gav again. He always seems to get so big while I'm gone! He's been up to his usual antics and keeping me pretty entertained. His uncle Cayle and aunt Loren got him a Lightening McQueen race car driver suit that he's been wearing all the time. He wears it out to dinner and wants to sleep in it! Here's Gav in his race car suit....

He loves to play 'baby' and get in Teag's walker..... I can't believe he fits!

Wednesday, September 24, 2008


We are home....again! Teag was discharged from Children's Tues. afternoon and we made it home around 6. She is already acting like she feels better and is slowly getting back to her normal self. She's still in some pain from the surgery,cath and chest wound but hopefully she won't need her pain meds for much longer. We had our first cardio appt. today already with Dr. Sesslar. Everything looked good (sats,hr, etc...) so we don't go back for a month! Now we're just focusing on getting rid of the NG tube again and letting her enjoy life outside the hospital! Thank you all for checking in on us and for all of your continued prayers!

Monday, September 22, 2008

Still Smiling

Here's Teagee looking better today, and still smiling!
Today went pretty well for Teag. She's been fussy off and on but its so hard to say whats bothering her- she's got alot going on! She had an echo this morning and her stent looks great! We're just going to be hanging around here for a few days until her swelling goes down and she's breathing a little slower. The docs are being a little more cautious about discharging us after what happened....Teag also had a chest x-ray done to make sure there's no fluid on her lungs. I haven't heard the results yet, but I'm guessing that she's ok since no one has discussed it!

We had a fun visit from Katie and Maddie today that made our day! Maddie had an appt. here at the hospital and then they came up to our room for a bit! Katie is so sweet and brought me a bag of 'hospital survival' goodies! I had so much fun going through everything and enjoying the yummy treats! She also brought some freshly picked apples from their orchard and homemade cookies! I'm so lucky to have such a wonderful friend and heart mom to lean on! Thanks so much Katie- you and Maddie were the bright spot of our day!
Here's Teag chillin in her cute new socks from our goodie bag!

Look at this huge grin I caught this evening, such a silly girl!

Here's a pic of me with Maddie and Katie. I definitely have my 'hospital face' goin on (tired, pale...) but how cute do they look?!

Here's Maddie hangin out in the bed with Teag. I don't think T meant to punch Maddie in the face, ha... they love each other! Or atleast they will when they can finally play together outside of the hospital in a few weeks!

Sunday, September 21, 2008

6 months old! What a journey....

Our little miss is officially 6 months old today!!! What a journey it has been so far... I am amazed every day by Teag's courage, strength, and ability to smile after all that she's endured. I'm planning on turning this blog into a book someday for Teagan, so this next part is for you little bug:

Happy 1/2 year birthday sweetheart, you're mommy's little miracle. You are AMAZING! You've given me more joy in these last 6 months than I could have ever imagined. I have grown and learned so much from you. You teach me about patience, love, courage, strength, endurance, gratitude and so much more every day. Mommy loves you so much and I'm so proud of you- you're my angel. Look how much you've fought through and overcome in your first 6 months! Your big brother and your daddy both ADORE you! You've stolen all of our hearts, and many more.

Teagan has had quite an exciting first 6 months of life. Here's a little recap and a few milestones:

-Surprise diagnosis at 12hrs. old

-Two life flights over to Seattle Children's (she likes to ride in style!)

-2 heart catheterizations, one stent placed

-2 open heart surgeries

-54 days lived at Children's hospital

-2 ER visits

-4 ambulance rides

-Way too many trips to the dr./cardiologist (atleast 30)

-doubled her size since birth (she's now almost 13lbs)

-Wears 3-6 months clothes and size 2 diapers

-Likes to suck her middle and ring finger together with her others pointing outward "rock star style"

-Smiles, jabbers, DROOLS, spits, blows bubbles, and coughs to get my attention

-Rolls side to side but not quite over yet

-Favorite toy is her 'bunny boo' which she thrashes back and forth to make it rattle

-She's in love with her brother and daddy, she lights up and tries to grab their noses when they get near herAs you can see, tonight Teag is still very swollen. We had a pretty good day today overall, just not alot of fluid loss. Her sats are better- even in the 80's at times and her heart rate is good. She's breathing faster than normal but the dr.'s are saying that its because of all of the excess fluid. The plan for tommorrow is to have an echo done to check on the flow through her newly stented svc. She'll also have labs done and get a visit from the plastics dept. to look at her chest wound. They're telling us that as soon as she starts to look more like herself we should be out of here- maybe tues or wed...

Saturday, September 20, 2008

Cath Update

I was able to go back and see Teagan around 11:30 this morning in the recovery room. Dr. Jones talked to us and said everything went well and that there was a definite narrowing right where the superior vena cava (svc) was connected to the pulmonary. There was no evidence of any clotting, just some scar tissue that had already started to form and close off the opening. He explained it sort of like squeezing a drain shut- the blood was flowing up to her head and then when it went to 'drain' down into her pulmonary, the opening was too small to accomodate the flow. Here are a few pictures from her cath:

The picture above is what they saw when they went in.
Here above is an explanation of what you're looking at. The blue arrows are pointing to the area where she had the blockage. The opening should be much bigger here to allow for better blood flow. You can also see the small tube of the catheter at the top left, and her feeding tube that curves down through the whole pic. I also pointed out a small narrowing she has on the right side of her pulmonary where her Sano shunt was taken down during her Glenn.

Here's a pic of the mesh shunt that was placed at the site of her narrowing. You can see that they were able to double the size of her svc opening. Also if you look to the right where she had some other narrowing from the shunt takedown, it has popped back open due to the increased flow! Its so amazing what they are able to do with the catheters instead of having to open her back up again. Here's a pic of our sleeping beauty this afternoon. Teagan's swelling is slowly starting to go down but she is still really puffy in her face and completely exhausted. They're giving her iv fluids for now until she feels like eating.

Back at the hospital.....

Teagan woke up friday morning with extreme swelling in her face and neck. We took her in to our local pediatrician and then to the hospital for an echo. They're thinking that she might have some blockage at her Glenn sight where they just did the repair. This would cause a restriction of blood flow from her head to her lungs and thus the swelling. We were airlifted back to Children's hospital here in Seattle last night and scheduled for a cath this morning. We handed Teag over around 9:30am to Dr. Jones and his team who will go in and try to figure out whats causing the blockage. We're hopefull that it can be fixed via cath with a balloon or stent and that will fix the swelling. I'll update later when we know more. Please say a prayer for our little bug this morning!

Thursday, September 18, 2008

Discharged and HOME!!!

We were discharged today around 11am and made it home about 5pm! I'll write more tommorrow as I am exhausted from the day but I am so thankful to be writing this post from HOME! God is good!

Wednesday, September 17, 2008

Post-Op Day 8

Whew... After all of the craziness over the past few days, I think things are starting to go in the right direction. Teagan has been able to rest and keep most of her feeds down the last 2 days and her sats are improving without oxygen! The surgeons have agreed to call off the idea of doing a heart cath tommorrow and if everything continues to go well today- we get to go home tommorrow!!!!!!

As I looked back over the last few posts I can't help but feel bad about how negative they sound. Things have been so stressful and not going the way we wanted and its easy to get stuck in that mode. I thought it might be nice to write about some of the things I'm thankful for in the midst of all of our frustrations.

I am thankful for a heavenly father who continues to be faithful in healing Teagan and giving Trent and I the strength to get through each day.

I am thankful for the wonderful 'heart moms' like Katie, Angie, Mimi and many others who have given me so much encouragement and been willing to listen to me complain and vent about all that is happening.

I am thankful for the strong, brave and beautiful little girl that Trent & I have been given and couldn't imagine life without.

I am thankful for an amazing son who makes me laugh, cry & beam with pride when he shows me his new 'tricks' or kisses his 'ligglely' on the head and 'keeps her safe.'

I am thankful for a wonderful husband who has done nothing but make me laugh (outloud at times) and been so strong through this whole thing.

I am thankful for our wonderful families who have prayed, encouraged, and held us up when we were about to fall apart.

I am thankful for our wonderful moms who take care of our sweet 'Doogie' while we're away and make him feel happy, safe, and worry free!

I am thankful that even if Teagan's chest wound does leave a scar atleast the shape is appropriate- a heart!

I am thankful for the Dr.'s and nurses here at Children's who have done so much for Teagan and for us. We couldn't imagine life without her, and they help make that possible!

Tuesday, September 16, 2008

Post-Op Day 7 (tuesday)

I'm sitting here trying to think of how to paraphrase all that has happened in the last two days... Trent ended up coming back yesterday to help me when he heard all that was going on.

Teagan had been doing really well up until saturday afternoon and everyone has been trying to figure out whats causing her to decline. They did an echo yesterday and after initially thinking that everything looked good, the surgeons came back and said that Teag might have some pulmonary narrowing at the Glenn sight. (where they attached the svc to the pul.) They're not sure if its an issue or not because the echo never really gives a clear picture of the pulmonary anyway. Also, if it was a true narrowing then Teag's sats would be low and stay low and she wouldn't be responding to oxygen. (Teag's sats are all over the place high & low, and she definitely responds to oxygen)

Also, T is definitely having some 'digestive issues' meaning- nothing is happening! She eats and eats but nothing comes out due to the thick 30 cal formula plus the oxycodone. She also has no urge to use any of her muscles down there as she is still very sore from surgery. So yesterday she began throwing up and I'm positive its due to us just packing her full. We're now giving her some meds to help move things along and she seems to be doing better.

All of this on top of T being absolutely exhausted is (in my opinion) why she isn't doing too hot with her sats, feeds, fussiness ect... The docs left last night wanting to do a cath to 'take a look' at her pulmonary and possibly balloon it if necessary. They also wanted to start an iv last night 'just in case' she needed fluids in the night if she continued to get sick. I wasn't having any of it! By that time I was so tired of Teag being but through any more pain or discomfort to 'take a look' or 'just in case' when I knew that this girl just needs to poo and sleep! So the plan was to watch for 24 and schedule her cath for later in the week- which could be cancelled.

We started feeding Teag through her ng tube (and meds) at 90mls/hr. every 3 hours. Last night she took every feed without throwing up and she's also been off of oxygen since 5pm last night and for the most part is doing ok. Her sats dip into the upper 60's and low 70's when she's in a deep sleep and when she's awake they're in the upper 70's and even low 80's. The docs did rounds a few hours ago and saw how well she was doing. (even though she was screaming while they were in here) So now the plan is to watch for another 24 and if she's not throwing up and is able to maintain her sats then we might get to leave on thursday and possible come back in a few weeks for a cath if needed! Otherwise, the cath is on for thurs. and we'll go from there.

Today we are praying that Teag is able to 'go' and also keep her feeds down. We're praying that she can keep her sats up on her own without oxygen and that she can be as comfortable as possible. Please keep her in your prayers today and this week!!!

-oh, one more thing. I sat down yesterday with the head of patient/family relations here at the hospital to discuss all of Teagan's 'hospital wounds' and express my frustrations about everything that has happened. It was so nice to finally feel like I was talking to the right person! I emailed him pictures of all of her injuries and wrote up a report. He is going to get back with us this week, and is also going to present all of the info to the head dr.'s and nurses here so that there is an awareness about everything. He was very understanding and compassionate and at the end even offered to buy us dinner! I told him how concerned I was with Teagan's sleep and how we were frustrated about getting another roomate yesterday when there were open rooms down the hall. So last night they made it possible for us to move to a single room where we can't get a roomate!

Things are definitely much better today here in our cozy quiet single room!
Here's how I left Trent & Teagee last night. All tucked in together ready for bed! She loooves her daddy and was so happy that he came back yesterday! I went across the street to the RMD house to sleep for a few hours and for a much needed shower!

Monday, September 15, 2008

Post-Op Day 5 (sunday)

Sorry there's no update for yesterday (post-op day 5) but I was exhausted after a long day and don't know if I could have put my frustration into words. These last 2 days here have been horrible. Teagan has been put back on oxygen because she couldn't maintain her sats and today is inconsolable. The hardest part about being in the hospital is the constant disruption of sleep and I've never seen Teagan more sleep deprived. I think that everyone was a little too eager to have her take all of her feeds and meds by mouth (she hasn't done this at home for over a month) and it completely exhausted her. Her wound on her chest is painful for her and now she has a large blister that wraps around her foot from the tape/sensor they use for the sat monitor. These things combined with the iv infultrate wrist ordeal last time have basically pushed me to the limit in my patience with the different staff and personnel around here. I loved our care in the ICU but it always seems like these 'fluke' things happen to Teag the longer we're here and I'm so tempted to unhook her from everything and run!

I definitely expressed my opinion yesterday, (hopefully to the right people) and we now have a new plan of action. We're going to leave Teag off of oxygen for 24 hours and if she does ok then we'll get to leave. This morning they did an echo around her chest wound and were able to see enough to know that her heart function is good. They also did a chest x ray that showed a little fluid but nothing major. I know that once we get her home Teag can rest and heal the way she should be so I'm praying that we're out of here tommorrow. I've been doing all of her care here in the room (feeds, meds, dressing changes, etc...) just like we'd be doing at home.

Sorry this post is so horrible. I'm just plain exhausted and ready to be out of here. After missing Gav's birthday yesterday and being away from him for almost 2 weeks I can't wait to get him back in my arms! Please pray that Teag will be able to stay off of oxygen so we can get out of here and for patience for Trent and I as we work together with the staff here to care for our little bug!

One good thing that happened last night after no sleep at all. The nurse brought in a real hospital bed and made Teag a little spot next to me so we can sleep together and I can comfort her better. Here are a few pics from yesterday: (again of her wound- just a warning!)

Saturday, September 13, 2008

Post-Op Day 4

Teag is getting better every day! I'm so proud of our little hero, she's such a fighter and refuses to just lay around and act sick. She did well enough last night to come off of her oxygen today! No more nasal cannula on her face to pull on! I left the stickers on her face though, those things are stuck pretty good! I'm waiting until she's in a really good mood before I have to peel them off...

All of her numbers look great today and I even got a little smile out of her! Our nurses were great and brought a really cool mobile to hang on her crib. She also had fun with her new toys and balloon.

The only thing thats keeping us from being discharged is the raw patch on her chest where they ripped off her skin after surgery. I still haven't heard exactly what they had stuck to her that was able to do this much damage but I plan on finding out. They're treating it similiar to a burn and it actually looks like one. The plan is to keep the area wet so it can heal more efficiently. It looks so bad and painful, and I'm so frustrated that these things keep happening to her! It has absolutely nothing to do with her heart and without this issue, we'd be going home today!

Tommorrow is Gavin's 3rd birthday and I'm soooo heartbroken that we won't be home to celebrate. The good news is that he doesn't know that tommorrow is the 'big day' so we're going to have a big party for him when we get home....

My friend Bek came down to the hospital today and sat with Teagan while I went to shower and grab a bite to eat. She's scheduled to have her first baby on wed. and she's going to be such a great mommy! Teagee loved her and you can tell Bek is totally in 'baby mode'! Thanks Bek for loving on our little bug for me today!

Below are some pictures from today... I'll post a pic of Teag's wound at the bottom, so don't look if you have a weak stomach. Just a warning- its gross!

Here's Bek with Teagee:

Nap time!

-and here's what is keeping us at the hospital....yucky and so frustrating!!!!

Friday, September 12, 2008

Post-Op Day 3

A little more bright-eyed today!

We're still here in our cozy little room on G-4 doing pretty well. Last night was definitely our roughest yet with neither Teag or I getting much sleep. She's pretty much just miserable until her swelling goes down and her chest heals more. She's still on oral feeds and all oral meds but its hard to get her to eat when she's so tired. Her one iv that was left in her foot ended up coming out today. The nurse went to flush it and thought it was blocked, but after messing with it saw that it was ok. She decided to re-tape it though and in the process ended up pulling the whole iv out of Teag's foot. The good news is that now she has no more lines in, bad news is that they may have to start a new one if any iv lasix is needed in the next few days. We're hoping not! Today Teag was a little more like herself and not so 'googley eyed'! She almost smiled a little and it made me feel good to see a glimmer of our fiesty girl coming back.

Theres no plans in place for us to leave this weekend but we'll see. Teag is still really needing the oxygen to keep her sat's up and she's still pretty swollen. The dr.'s mentioned maybe monday we'd be headed out of here if those two issues get better over the weekend!

I went out to the car today to grab a quick bite to eat and it wouldn't start! I had to laugh because it always seems like these things happen when we're here at the hospital. A nice family jump started my car and I was able to go get a new battery so all is well. Just a little added excitement!

We received a few gifts today so I took some pics of Teag with her new toys! Thank you so much to Maddie and her sweet family for the gifts and balloon! The Giraffe is so cute and fitting for our stay on the 'giraffe' floor and Teag loves watching the balloon and playing with/eating the strings...ha. Also thank you to Mia's mom Mimi for the adorable elephant! I caught Teag sucking on the trunk today!

Thursday, September 11, 2008

Post-Op Day 2 Update....

All set up in our new room on the floor!
We're on the floor! Its sad but exciting at the same time! I hated leaving the CICU staff and our friends over there- but this is one step closer to being sent home! We're back on G-4 again but we still have a nice window view. We're in a shared room but as of tonight we don't have a roomate yet! I'm going to sleep here with Teag and hope to get a few hours in.... we'll see. Teag is doing well, just really miserable still. The meds and all the bottle feeding is making her really gaggy and she has a killer headache. Poor girl!

Post-Op Day 2

Here's a view of our 'corner suite'!

So I know I just posted, but I'm bored so I thought I give a mid-morning day 2 update! Teag had a pretty good night last night, she got sick during a feed around 1am but the nurse thinks she gagged on her meds...She's still pretty sleepy and really swollen and sore, although she's much less 'out of it' than yesterday. This morning she's had her eyes open a little and she just stares at me like 'what is happening right now?'. They just took out her central line in her left groin and her arterial line in her right groin and she's much happier. Since both of those go into the arteries, they're stitched in to her skin and super taped up. So once those were out she's been sleeping better. The only line she has now is one iv in her left foot. Thats it! She's still on O's, her leads are stuck everywhere and she has her sat probe, and a temp. probe on her. Her incision looks awesome, and the 'skin burn' patch looks the worst of anything. Trent and I were joking that she always has to deal with some 'extra issue' and we're hoping that this time the whole skin burn patch is all. They did rounds this morning and said they want to move her to the floor later today! I'm excited, but also so sad... It means leaving Mimi up here alone again and the other sweet families. Plus like I said before, we loooove our nurses! I asked to stay here another day and they all laughed at me...

Teag's blood pressure is still really high, but they said thats expected after the Glenn. She's off of the morphine and switched over to oxycodone, she's also off of milrenone and on the captopril instead. They just got that big 'tree' of med pumps out of here because she's on all oral meds now!! She's also been eating really well so far and we haven't put in the NG tube yet. Every feed we've offered her she's drank in about 2 minutes, but this is mostly because she's starving! Last night around 9pm she drank 120ml!!!! She's never eaten that much at one time, let alone by bottle only so I was so happy! We offer her 90ml every 3-4 hours now and they seem happy with what she's eating so far.

Thank you for all of the prayers, thoughts and messages these last few days they are definitely being felt! Teagan is doing so well, and we couldn't be happier with her progress. We are blessed to have such great friends and family helping us on our journey here and at home!

Here's Teagee this morning- sad, grumpy, but still beautiful!

Loving the CICU....

I tried to post a few pics last night and update about the rest of the day but was unable to get connected to the internet! Anyway, the rest of yesterday went pretty well. They took out all 3 of Teag's chest tubes around 6pm last night and her pacer wires! She also had her catheter taken out yesterday and lost her 'brain sticker'. So at the end of the day she had her lines in both groins, and one in her foot- but thats all. She is still on 1/2-1 liter of O's, her morphine drip, and milrenone drip. Here are a few pics of our sweet girl yesterday afternoon...

We are absolutely loving being here in our 'corner office suite' in the CICU. We ended up getting the coveted corner room with windows all around! (cicu stands for cardiac ICU unit for anyone wondering) Our experience here at the hospital this time has been so much more enjoyable. Not only because Teag is doing so amazing, but just seeing the familiar faces of the dr.'s/nurses and also knowing what all the numbers and 'hospital talk' means makes it so much easier to handle. I had the best day yesterday chatting with all the nurses and meeting so many wonderful families here with their little heart babies. I am continually amazed at the stories some of these families have and how strong and caring the parents are. We've had great nurses both days and nights including our fav. NICU nurse Jenn who had Teagan the first week after she was born- right before her first operation. I was thrilled yesterday when she told me that she was training on the cardiac side, which means we might get her for the next surgery! We also love Mari, Ingrid, Betsy,Katie and so many others... The way that they talk to these babies and love on them just as much as the moms do is so awesome! I've been staying at night until around 11pm and then sleeping at the RMD house and coming back around 7am. I figure I might as well sleep now while Teagan is so well cared for because I don't like to leave her once we're moved to the floor...

I had the chance to chat with Mia's mom Mimi yesterday and it was so fun! Her baby Mia is adorable and currently waiting for a heart here in the CICU. I had read Mimi's blog and knew that they were here somewhere so I walked around the ICU yesterday until I found their last name on the door! Mimi is so sweet and we had the best time popping into eachothers rooms to chat during the day yesterday. (they're just a few steps down the hall) Its so fun to talk to other moms who know exactly what you're going through. (and who are just as sleep deprived as me!) Its like a club that we all belong to and sometimes being here at the hospital feels like living in the college dorms again. You can walk down the hall and see all the moms in their pj's hanging out in their little rooms sustaining themselves on cafeteria food and lots of coffee!

I also talked to a sweet family from Montana who's little boy 'Drew' is in having his norwood right now. They have 2 other little girls with them and they are all staying together in one room over at the RMD house. On their drive out here from Montana their car broke down in Idaho and a guy from the dealer where their car was towed drove their whole family all the way to Seattle in his own car! Once their car is fixed in Idaho, the same man said he could drive their car back here to Seattle for them and then fly back to Idaho! Pretty awesome huh? Its wonderful people like that man who make these horrible times so much better! Please say a prayer for Drew today and for all the babies here in the CICU!

Wednesday, September 10, 2008

Post-Op Day 1

Our sleeping beauty...
Extubated and feeling much better!Teagan had a great night last night resting comfortably and pretty sedated. This morning however, they held off on some of the sedatives so she could wake up more and be extubated. When I arrived around 7am she was thrashing back and forth and very mad! They said its the worst right before extubation because they're pretty awake and not appreciating the huge tube down their throat. Once the Dr. gave the ok, they extubated her around 8am and also took out her NG suction. Right now she's on just under a liter of oxygen to help keep her sats up while she adjusts to breathing on her own and she's satting in the low to mid 80s.

The plan for today is to offer her a bottle in a few hours which should make her happy. They will also probably take out atleast 1 or 2 of the 3 chest tubes this afternoon along with her pacer wires. She had some moderate draining out of her center chest tube so they might leave it in for one more day. They also plan on taking out her catheter and her 'brain sticker' when she wakes up. Right now she is resting and sucking like mad on her binky so they don't want to mess with her! There's talk of possibly moving to the floor tommorrow if they can wean her off the milrenone and onto some captopril. They'll also want to wean her off morphine and onto the oxycodone. Everything is definitely moving in the right direction and Teag is much much happier now that she's extubated!

Trent is at the local Urgent Care right now because he's having some serious back pain. He could hardly get up out of bed this morning! Please say a prayer for him also as he is supposed to return to work on friday and right now can hardly walk.

Tuesday, September 9, 2008

Post-Op pic...

Here's a pic of our little beauty as we were leaving tonight. She was comfortable and dreaming away!

Update 2

I called the ICU around 4:45 after not receiving a page for awhile and they told us that Teag was off bypass and being 'packaged up' to move to the ICU. There was some confusion with the whole paging system and we thought that her surgery was taking much longer than expected. As it turns out, once she was on bypass her actual repair only took around 45 min. Surgery was started at 1:30, she was on bypass at 3:15 and off by 4:00. Her chest was closed and they moved her to the ICU by 5:30.
The anesthesia team had a really hard time getting her lines in and it took almost 3 hours to get her prepped and ready and this is what delayed the whole operation. Teag has always been a 'bad stick' when they're trying to get blood draws, etc... and when she was hospitalized for the last surgery they had a hard time as well. They were unable to get an IJ line in (central line in her neck) but they tried several times so she has a nice mark there. They were also unable to get any lines in her hands/wrists so she has several marks there as well. She ended up with a line in each groin (one is her arterial line, the other is her central line) she also has a peripheral iv in her left foot. The good news I guess is that her hands are free to suck her fingers when she's able to.

Dr. Permut met with us before we went back to see her and he said that her surgery went really well. There was a fair amount of scar tissue to get through but once he was able to get to the heart, things went quickly. Dr. Cohen (the lead cardiac surgeon here) also scrubbed in on her surgery once things were started and he said that Dr. Permut did the cleanest Glenn disection he'd ever seen! The only negative aspect that happened was when they were closing her up. When they have the chest open during surgery, they cover the surrounding skin with a sticky protective sheath. Well when they went to take the sheath off, it ended up taking part of her top skin layer with it leaving her with a nice patch of raw skin that looks like a bad sunburn. Poor girl! So they have a wet looking bandage just laying over the area right now to help it heal.

I tried to prepare myself for what Teag would look like post op but I don't think that ever gets easy. We were allowed in to see her around 6:30 and it was heartbreaking. She looks good for what she's been through today, but still tough for mommy to take. She is still intubated (through the nose) with an NG tube in the other nostril for suction to keep her tummy empty. Her chest is closed with no outer stitches and her incision looks really good. (way better than last time) She has the wet bandage with gauze over it where the 'sunburn' rash is. This time she has 3 chest tubes in- left, center and right. (last surgery she only had 1 in the center) She has her art. line and central line in her groin area, and then the one iv in the left foot. They also left in her catheter for now to measure her urine output. She is pretty swollen from the mid-chest up and also her left leg is really swollen. They said that because the central line is in the main leg artery that its blocking some of the blood flow and thus causes some swelling.

She's asleep now, but she has been in and out of 'awakeness' and in some visible pain. Since she got out of surgery so late in the day the plan is to try and extubate in the morning. They're weary of doing it tonight mainly because there's just not that many people around if something were to go downhill. Since she will be intubated overnight though, they're able to give her more pain meds and keep her as comfortable as they can. I told the nurse that Teag is fiesty and she said that it was obvious with the way that she was trying to wake up. Its a good sign though that even with everything going on she's still our little sassy girl! When I rub her head and talk to her she opens her eyes but you can tell that she's uncomfortable. So Trent and I have been taking turns holding her little hand, and she's been squeezing it really tight! All of her numbers are really good right now and everyone is pleased with how she's looking. We'll know alot more once she's extubated and breathing on her own again.

Thank you to everyone who has checked in on us today and kept Teagan in your prayers. Her surgery went as well as expected and so far she is doing great! I'm not quite ready to post a pic of her yet, even though she's looking beautiful to us! Hopefully my post tommorrow will be of her sweet face with no tube! Here's a pic of her and I this morning before we headed to the hospital. Thanks again to Nana for the 'Team Teagan' gear!


Teag went on bypass around 3:15 and the real repairs were beginning...Everything is going fine, they said it just takes awhile to get going...

Surgery is underway....

We checked in here at the hospital around 10am and handed Teag over at 10:40. They were scheduled to start putting her lines in around 11:15. We received a page around 1:15 that she was all prepped and they were starting. We were told that it takes a long time the 2nd time around to get through the scar tissue and get her on bypass... I called the ICU around 2:45 and they were still getting her prepped for bypass but they were almost there. Once she's on bypass we'll get another page that they're actually doing the 'work'. (connecting her svc, etc) Then another page when she's off bypass, and finally the 4th page when she's being moved to the ICU. Right now they still haven't confirmed that she's officially on bypass, and its taking longer than Trent or I thought. I had the ICU desk call the OR and they said everything is going fine and that sometimes it just takes awhile to get everything hooked up. They said once the actual 'work' starts that the rest should go pretty quickly. Please keep those prayers coming! I'll update again when we know more.

Monday, September 8, 2008

Tommorrow's Details...

We received a call this morning with the details on when to arrive for tommorrow's surgery. I wasn't sure if we were going to be admitted today or not, so when we got the call about tommorrow I was so excited to be able to keep her with us one more night! We got bumped to second case so now instead of reporting at 7am, we're supposed to check-in at 10am and they will take her around 11:30. Surgery is scheduled to start around 12 or 12:30 and is going to last around 3 1/2 hours. Most of this time is getting Teag prepped (lines in, anesthesia, bypass, etc...) the actual surgery shouldn't take very long. Dr. Permut said the longest part of the operation is getting through the scar tissue, etc.. left over from the 1st surgery.

The Dr. said that her surgery is a pretty typical 'Glenn' with no additional work needed. He'll take down her Sano shunt and connect her superior vena cava to her pulmonary artery. This will connect her upper body blood flow directly into her lungs. He said to expect Teagan to be swollen from the mid-chest up and for her to look a little blue right after. But once her body adjusts to the new blood flow, she should look alot pinker! Depending on how the surgery goes, they may extubate her a few hours after, or they may decide to wait until wed. morning.

Trent and I are actually feeling really good about everything this evening. I'll probably be emotional tommorrow handing her over- I don't think that ever gets easy. But we know that Teagan is strong and our little fighter! We are comforted knowing that she'll be in God's hands tommorrow when she's not in ours. He's seen her through so much already and we know that he has great things in store for her! Please keep her and us in your prayers tommorrow! Teag's uncle Shaughn and aunt Deni are going to join us here at the hospital as a part of "Team Teagan" and I'll update as often as I can! Thank you to all who have been checking in on us and leaving such wonderful comments. We read all of them and are truly comforted knowing how much love and prayer is being sent our way! We love you all!

Sunday, September 7, 2008

Great Day!

What a great day! The weather here in Seattle today was awesome, so we decided to take Teagan out for some fresh air. We headed over to Discovery Park to walk the trail and see the water. Teagan has gotten more one on one time with Trent and I this weekend than ever. I love that we can give her so much attention right now before her surgery. Here's us overlooking the sound:
Teagan's first view of the beach- a little windy!

The next pic might need some explaining: Regardless of how we plan our day, it always seems that we need to start a feed while we're out. So we found a beautiful bench overlooking the water and fed Teagan in the shade. Trent found a great spot in the tree to hang the bottle! (look close!)
All fed and so happy to be outside!
The trail that we walked was lined with blackberry bushes and everyone was stopping to pick and eat them. So yummy!As requested, here is a picture of our room here at the RMD house. We feel so lucky to have so much space this time in the newer building!
Here's a small pic of Teagan in the lobby of the RMD house.