Saturday night at the ER!

We had an exciting weekend! After talking with the on call cardiologist on Sat. he decided that I should take Teagan to the ER to have an ekg done because she was really fussy and sweaty, and her heart rate had gone from the 120's to the 160's. She had been off of her propanolol for about three days by then and I was thinking that maybe her body still needed it. The cardiologist wasn't comfortable restarting her medicine again though until she had an EKG to make sure she was in a normal 'sinus' rhythm. So our friend Jason came over around 11pm and hung out while Gav was asleep and I headed to the hospital. (Trent was on night shift!) Everything turned out fine and when we got to the ER, Teagan's heart rate was back in the 120's and she was smiling at every nurse that looked at her! Her EKG looked normal and we got the ok to restart her propanolol if she needed it.


Sunday Katie and Maddie came down for a visit which is always so fun! The girls are both getting so big! Katie brought down Maddie's SAT monitor so I could check to see how Teagan was doing. I would love to have a monitor at home all the time too and I'm going to talk with the cardiologist about that tommorrow! We're really hoping that the girls have their next surgeries around the same time so we can keep each other company at the hospital!

Home health came out on Monday to weigh Teagan and check on everything. This is another service Teagan qualifies for through WIC! The home health nurse reports her weight back to our dietician so we don't have to go in every week for weight checks! Teagan weighed 9lbs 13oz on her scale- almost 10 pounds! Our goal is still to get to 12lbs or so before the next surgery which means Teag needs to gain around a pound per month for the next 2 months! The nurse also gave me info on connecting with local families that have cardiac kids too! She will also help me with Teagan's developmental evaluations in the future to make sure she stays on track!

Tommorrow Teagan has a quick appointment with the cardiologist at the Children's Hospital satellite clinic in Richland. I just want to make sure she's still doing ok and see if we do in fact need to go back on the propanolol long term. Hopefully we'll get a good report! If all goes well, we were thinking of taking a little car trip this weekend to get out of town. I'm keeping my fingers crossed!!

3 Months Old!!

Today is Teagan's 3 month birthday, and she has come so far! I haven't really let myself look back at the pictures of her in the hospital until now and its unbelievable that this is the same baby! If you would have told me 3 months ago that today I would be at home with a happy, smiling, very energetic baby I would never have believed it. God is truly amazing and has certainly answered all of our prayers in helping Teagan to heal! I know that there are more surgeries and hospital stays to come, but right now we're focusing on our beautiful baby who's now officially 3 months! We're looking forward to not only celebrating her 'monthly birthdays' but many, many years of birthdays to come!

Update

Sorry for the delay between posts, but no news is good news so far! This week has been a little busy around here! We had a great Father's Day with Trent and made it up to the Allred's house for dinner on Sunday! (Teagan's heart buddy Maddie's family) Monday Trent and I celebrated our wedding anniversary and this Saturday is Teagan's 3 month birthday!

Teagan is doing great this week! I finally got the vouchers for her formula and picked it up on Tuesday. Again, I am so grateful for the help from WIC with this. We get 8 cans a month of Teagan's formula and when I went to the store, the total for all 8 cans was $220.00!!! I can't imagine having to pay that every month! Eventually she will require more than 8 cans a month (crazy, I know!) and we'll have to buy the remaining ones but this probably won't happen for a while.

As of wed., Teagan is officially off of her propanolol. This was the medicine she was put on to control her SVT rhythms and lower her heart rate. So far she is doing well without it and I've been checking her heart rate every couple of hours to make sure! The dietician that we are working with gave me a few new nipples for Teagan's bottles to see if we can get her to eat more. These new ones allow her to eat more without working so hard because they're latex and much softer. We're also concentrating her formula to 26 cal./ounce up from the normal 20 cal./ounce so that should help her pack in on! She is gaining weight, just slowly! On wednesday she was 9lbs 10oz! We're trying to make it to atleast 12lbs before her next surgery this fall so we still have a ways to go. She's only in the 5th percentile for her weight/age right now and when Gavin was 3 months old he was in the 80th! ha... She always looks really chunky in the pictures (especially in her face!) but in person she's still pretty tiny!

I posted a picture of what one month of formula for her looks like, and a picture of her morning meds next to her 'medicine cabinet'!

Lazy Summer Day

We're having one of those lazy summer days today! The weather here is beautiful, Trent's off work and we're hanging out around the house as a family! We all hung out in the yard this afternoon and Teagan got to wear her first bikini! ha.. (Trent says its her first, and last! :) )

The cardiologist on wed. said that we can begin to wean Teagan off of her Propanolol. This is the heart medicine she's been on for the SVT runs she was having in the hospital. So by wed. of next week we should be off of it! We may end up going back on it if she needs it, but for now its one less medicine! She's still on several medications though, here's our current schedule:

8am= Captopril 1.3ml, Propranolol .25ml, lasix .4ml, zantac .4ml

2pm= Captopril 1.3ml, Propanolol .25ml

8pm=Captopril 1.3ml, 1/4 baby aspirin, lasix .4ml, zantac .4ml

10pm= Propanolol .25ml

The formula that Teagan needs due to her digestive issues is really expensive. It costs anywhere from $26-$30 per can depending on where we buy it! One can only lasts 4-5 days right now and as Teag eats more it won't even last that long! I found out on friday though that the local WIC office is going to help us cover most of the formula for whole year! They're giving us 8 cans per month!! Normally we wouldn't qualify for any assistance but Teagan has been classified as 'categorically needy' and we are so thankful for the help!

We're looking forward to a fun Father's Day tommorrow!

Great Dr.'s appt.!

We had our appointment with the cardiologist today, and I was nervous after our scare on Monday. They checked her SAT levels first and couldn't get them to read higher than 70 on her feet. But then they checked her hands and her SATs were around 85! They're chalking up her low SATs on her feet to poor circulation and cold feet! Then they did an echo and an ekg, both of which looked great! The dr. increased a few of her medications now that she has gained weight and he said we don't have to be seen for another month! We're still unsure why she looked a little 'greyish' on monday but everything checked out great today! As things are now, we're expecting Teagan's second surgery to happen sometime in Sept. or Oct. But for now, he gave us the ok to travel by car and get out of the house! Yay!

Little Scare...

We had our first official scare yesterday since we came home from the hospital. Teagan was sleeping with me in our bed and Trent woke me up to ask me if I thought she looked a little blue. I looked at her and her arms/hands were really pale and she was 'greyish' around her lips. This sort of coloring is an indication that Teagan may not be oxygenating as well as she should and her SAT levels (oxygen levels) may be decreasing. She was also sleepier than normal yesterday during the day and fussier off and on. So I took her in to the Children's Hospital satellite clinic here in the Tri Cities to check her SATS and the nurse couldn't get them to read higher than 76! (Normal adults should be around 100 and Teagan is normally mid-high 80's) So they sent us to our pediatrician's office to be looked at to make sure we didn't need to go to the hospital. (At this point I'm semi-panicking) At the dr.'s office they checked her SATS on both hands and feet and got readings between 76-83. The dr. looked at her and thought she looked well enough to send us home since we have an appt. with the cardiologist tommorrow anyway.

I've been watching Teagan like a hawk all day today, and she seems to be doing fine. She's just alot sleepier than normal.... As Teagan grows and gets closer to needing her next surgery her SAT levels will start to drop and she will probably be sleepier because she just won't have alot of energy- but I wasn't prepared for these signs just yet! I feel like we just got home from the hospital and I'm not ready to head back yet! (not that I will ever be ready, this is just sooner than I thought) So we have our appt. with the cardiologist tommorrow where she should have an echo to make sure her heart function is still good. We should know alot more after talking with the dr. about how she is doing. Please keep us in your prayers tommorrow that Teagan will check out ok and we will receive good news!

On a happy note Teagan is 9lbs 3oz now and still doing great on this special formula!

Heart Buddies!

Teagan had her first 'playdate' today with her heart buddy Maddie Grace! Maddie is a Hypoplastic Right Heart Syndrome baby and she's so adorable! Trent actually knows Maddie's mom Katie from highschool rodeo and we happened to run into them while we were all at Children's Hospital. The girls were born a week and 1 day apart and Maddie had her surgery exactly a week before Teagan. Both girls will have the same 2 upcoming heart surgeries before they're officially 'replumbed' and they'll both have their cute little 'zippers' to share!

Its so nice to have someone to talk to who knows exactly what we're going through! I don't think Katie and I stopped talking today for about 5 hours straight! God is so great and has blessed me with a wonderful friend so close by to share this crazy journey with! I'm so excited to watch our little girls grow and be able to share this special bond! There is a link to Maddie's blog on the left under Teagan's 'heart buddies'!

Teagan is still doing really well with this new formula. I'm not sure yet what this means as far as breastfeeding but I'm planning on discussing it with the dr. next week. We also see the cardiologist next thursday for the first time in a month!

Still no feeding tube!

So we ended up going to the dr. today for Teagan's weight check. I was really nervous about weighing her because the last few days have been our 'trial run' without the feeding tube. If Teagan had lost weight or was unable to gain any without it, we were going to have to consider putting it back in. On friday she weighed 8lbs 11oz and today she was 8lbs 13.5 oz!! Considering the fact that we didn't find a formula that works for her until Sunday, this was huge! The formula that we switched to on Sunday has been working so far- finally! She is eating more than ever and hasn't had any more blood in her stools since Sunday night! The dr. agreed that she seemed to be doing well enough on her own that we don't need the tube for now! YAY! I don't know who is more relieved, me or Teagan! We both HATED that thing!

It looks like we're finally figuring things out with her feeding, and she's happier than ever! The last few days have been pretty good and sometimes I look at her and forget that she's not a 'normal' baby! Its sooo nice to catch myself doing this! (something I didn't think I'd ever be able to do!) In the last week she has developed a 'clogged duct' in her right eye that requires prescription eye drops, but it doesn't seem to be bothering her and should clear up soon! Thank you to everyone who has been praying for us and Teagan's feeding issues lately!

Looking Up!

Things are starting to look up around here! We've been really frustrated lately trying to figure out why Teagan kept having blood in her diaper. The new plan was to put her on straight formula and see if if helped. This would tell us if it was something in my milk that was bothering her. Well as of tonight she has had 3 diapers in a row with no blood! She's also starting to eat more during the day! I think she's finally starting to feel better! I think she knows that she needs to eat alot so that we don't have to put her feeding tube back in! I know its only been one day of good diapers but I'm cautiously optimistic that it will continue!

My brother Brian flew in last night to stay with us for awhile and help around the house. Its so nice having him here to play with Gav and just hang out! We had a chance to go outside today and he took a few pictures for us. (above)

Teagan seemed so much happier today and just overall more content. Its so exciting to see her starting to finally heal! We have a dr.'s appt. on wed. to see if she's able to gain weight without the tube. I'm praying that she continues to progress and that we see some good numbers on the scale!!