Trial Run

At our dr.'s appointment yesterday we talked about leaving Teagan's feeding tube out for a 'trial' run to see if she can do it. Dr. Lawrence agreed to give it until wed. and we'll see if she gains any weight and can handle her feeds. So for now, no feeding tube! We are still trying to figure out what is causing the bloody diapers. The new plan is to feed her straight formula (no breastmilk at all) until wed. and see if it clears up. (the formula is hypo-allergenic) If it does, then we know its something in my milk. If she is still having blood in her diaper then we'll talk about doing more invasive testing. She hasn't been eating as much as she should today so I'm preparing myself to possibly put the tube back in. We'll see how tonight goes!

Gav has been really sweet today. I found him in the living room wiping the coffee table with a baby wipe. When he saw me watching he said,"look mom I cleaned the house for you!" So sweet! (if only it were that easy!)

Fed up!

Notice anything different? No feeding tube! Teagan finally decided she had had enough! I've been replacing her tape daily lately because she pulls on it so much trying to get it out, and yesterday she succeeded! Poor girl has a nice rash on her cheek from ripping the tape off! It was so cute, as soon as she stopped gagging from the tube coming out she looked at me and grinned from ear to ear! It was this happy look of relief! I didn't have the heart to put it back in again and she's been doing better with her feeds lately, so I decided to let her try and do without it until today. We have a dr.'s appointment this afternoon and I'm going to talk to him about leaving it out for a week as a 'trial' to see if she can do it. I think as long as she is gaining weight and eating most of her feeds we should be ok. I know that there is a possibility that we may be putting it back in today, but I'm going to enjoy her sweet little tubeless face as long as I can! Teagan is already less fussy and slept like a rock last night! Please pray that she has the strength to continue to eat on her own so we won't need that yucky tube!

She is still having blood in her stools, and this morning was actually worse than its been in a week. I'm driving myself crazy trying to figure out if its something I'm eating thats doing it to her since it comes and goes. I've added eggs to my 'can't eat' list to see if that helps- we'll see! I'll update on here when I find out whats happening with her feeding tube! Wish us luck!

2 Months Old!

As of wed. May 21st, Teagan is 2 months old! Trent and I are amazed and truly feel blessed that Teagan is doing so well just a short time after her heart surgery. Its really amazing how far she has come!

Her dr.'s appointment on wed. went pretty well. All of the tests they've done to determine what the blood in her stools is caused by have come back normal. So for now, we're assuming its an allergy to something in her previous formulas or my breastmilk. I'm still off all dairy and also soy products and any nuts (peanut butter, etc...) So my diet isn't very exciting, but if it helps Teagan then I can handle it! Teagan is also finally gaining weight! On wed. she weighed 8lbs 5 oz!!! Which means that in the last 2 weeks she gained almost a whole pound! The dr. felt she was healthy enough to have a few immunizations so she received 2 of the 4 shots due at 2 months. She has been really sore and fussy the last 2 days but as of today (friday) is doing much better! Her immunization schedule is a little tricky because she's not allowed to have any 'live' vaccinations for 4 months because of the blood transfusion she received during her surgery. Also, she's not allowed to have any shots 1 month prior to her next surgery so we have to try and fit as many in as we can between now and then!

We still haven't received any word yet on the results of her holter monitor study from last wed. Someone from children's hospital is supposed to call us after they've reviewed her rhythms. If she's doing well enough, they'll start to wein her propranolol!

Thank you so much for all your prayers and support. Trent and I could not have gotten through the last 2 months without it! Thank you also for all of your comments on here- its so encouraging and we love reading them!

Bath time!

Teagan is beginning to enjoy bathtime! She just sat there and stared at me the whole time she was in the tub! I'm working on posting a video of her 'talking' after I got her out of the bath, she was pretty excited!

We're headed back to the dr. AGAIN tommorrow to check her weight and see what the latest test results show. Her rash is almost gone now but she's still having some issues with her poo...

Teagan is 2 months old tommorrow!! I'm hoping to put her in a fun outfit for her 2 month 'birthday', maybe her first dress? If I do, I'll definitely post a picture!

Things have started to calm down a little around here, but its still really busy! Teagan is still needing her feeding tube because she can't finish her feeds orally yet. She eats every 3 hours around the clock and needs to eat atleast 55ml (almost 2 ounces). During the day I start her off with a bottle and whatever she doesn't finish (usually half) I then put into her feeding tube via the kangaroo pump. (There's a pic a few posts back). At night if she's sleeping really well I usually don't wake her, and just hook the pump up. Sometimes she sleeps right through it! Once she starts finishing all her day feeds, then I'll start waking her at night too. She receives meds at 8am, 2pm, 8 pm and 10pm and she takes 6 different medications. The ONLY nice part about the ng tube is that I can put her meds right into her without having to fight her to swallow them!

The last pic up there is of Gav with Trent the other night. I caught Trent giving Gav his first 'riding lesson'!

Here is a link to the video of Teagan from tonight! http://www.youtube.com/watch?v=qhp39SLxsGc

Still a mystery!

I went back to the dr. with Teagan on Friday to try and figure out what is happening! They did an x-ray of her abdomen, and blood work. I'm also supposed to turn in a diaper 'sample' on monday for some tests. Her results from the bloodwork and x-ray all came back normal so far, which is a good thing. But we still don't know why she's having these yucky diapers and rash! The dr. also switched her formula again to a hypo-allergenic one thats non-dairy, non-soy, non-everything! It smells really bad but Teagan doesn't seem to notice so far! Hopefully next week will bring more answers!

On a positive note, her rash is getting better finally! The dr. prescribed this special ointment that the pharmacist had to make, and it seems to be helping. Also, Teag finished her 9am feeding today from her bottle and we didn't need the tube! Once she does this 2 or 3 times in a row we're going to pull the tube out and see if she can do without it!

Trent was brave enough to watch both kids yesterday afternoon so I could go and get my hair done. (what a guy!) It was so nice to get out of the house! He also cooked dinner for everyone when I got home! Today we're both going to try and take a nap sometime (we'll see how it goes!) We're both pretty exhausted!

Ups and Downs

Here are a few pictures of the monitor that Teagan had to wear to record her heart rhythms. As you might imagine, it was not very comfortable for her and she was glad to get it off this afternoon! (I was also glad, its really hard to hold her and not hurt her with all the junk hooked to her!) She had to wear 7 sensors with wires attached to them which went to the little hard drive that stores all the data. Then they put on what they called a 'tank top' to hold everything in place. I just hope it recorded what it was supposed to, so we don't have to do that again anytime soon! Her appt. with the cardiologist went great! They checked all the normal vitals and did an echo, all of which looked good! We don't have an another appt. for a month!

On the downside, Teagan is still having bloody stools and her rash hasn't really improved. We've both been 'dairy free' since monday and I'm not sure its helping! She was doing a little better with her bottle today, but she threw up a whole feeding this morning! I keep telling her there is no way she's gonna grow those cute little rolls if she keeps doing that! She really wants to eat when I give her the bottle or nurse her, but she usually winces in pain after she starts eating and just cries! I'm planning on taking her back to the dr. tommorrow again to explore a few other reasons she might be having these issues!

Encouraging Video!

A friend of mine who also has a little 'heart baby' sent me this link earlier today:

A 31-year-old with HLHS!! Here's a video clip of a young man, Bryan Rothlein of Safety Harbor, Florida, who was born 31 years ago with HLHS who is a successful veterinarian today! This is the oldest HLHS survivor I've heard of so far! Scroll to 19:42 to watch the HLHS portion. (copy and paste the link)
http://www.wedu.org/Content/VideoPop/SH_March_2008.aspx

We've had a few bumpy days lately with Teagan... She's developed a really bad diaper rash over the last week and we've been noticing blood in her stools on and off for a few days. We went to the dr. yesterday and he thinks she might be allergic to dairy. Sooo we switched to an all soy formula (to fortify my breastmilk) and I am officially off dairy! I'm beginning to realize that this is not an easy thing to do! I didn't realize how many foods we eat all the time have dairy in them! The dr. said that if she is allergic, it will take about a week of being off dairy to see an improvement. On a happy note, she was weighed yesterday and since thursday has gained 3 1/2 ounces!!! She is now officially 7lbs 9 1/2 ounces!

We have an appt. with the cardiologist tommorrow to check on her little heart. They are also planning on sending us home with a holter monitor that she will wear for 24 hours to record her heart rhythms. It gets sent to Children's to be evaluated by our cardiac surgeon to make sure that Teagan's heart is functioning like it should!

I've been off dairy since monday afternoon and as of this evening (tues) Teagan hasn't had any more blood in her diaper! Also, she finished her 6pm feeding from her bottle and didn't need the feeding pump! Small victories that get us so excited!

Picture post!

Here are a few recent pictures. There is one of the pump that we use to feed Teagan. She can't take her feeds by gravity yet (too fast for her tummy). So we hook her to the pump and set it to feed her at a certain rate/hr. Its pretty cumbersome and hard to carry her around when she's hooked up... just another reason why I'm so anxious to get rid of the feeding tube! Gavin climbed in the crib with her after naptime today and let her 'hold' his firetruck. (What a sweet brother!)

Quick Update

Teagan had an appointment with the pediatrician on Thursday and overall she's still doing great, but I left a little dissapointed. We're monitoring her weight gain closely and measuring every drop of milk she eats hoping to pack on the pounds. I thought that she would for sure have gained a good amount of weight based on how much she was eating and her newly formed double chin, but she only gained 2oz for the whole week! (I was thinking she would be up 5-7oz). So we left with a new feeding plan for the week and we check back in again next thursday. Her heartrate and her SAT levels were great, and she's smiling and interacting with us all the time now though!

Friday morning was more exciting than I would have liked. Teagan's feeding tube came out for the first time since we've been home, and she pulled it out during a feed! I was so worried that she had gotten milk in her lungs and also terrified at the thought of having to re-insert the tube by myself! (Trent was working) Anyway, after some tears from both of us (and a little 'help' from Gavin) we all got through it and the new tube went in fine!

Another funny Gavin story: Last week we were running late for Teagan's dr. appointment and had been having a very stressful day. Gavin must have sensed this because as we walked in the door to the dr.'s office he looked at the nurses, held up his hand and said,"Sorry guys, we kinda had a busy day!" ha.. He was totally apologizing for us!

This weekend Trent's mom is down here with us again helping me maintain some level of sanity! Each day gets a little better and we're all starting to settle into a routine. Teagan will be 8 weeks old on friday and 2 months old on the 21st!

Big brother Gavin

I wanted to share a little bit about Gavin who has been such a good big brother to Teagan since we came home 2 weeks ago. Its hard enough adjusting to a new baby in the house, but having to be separated from mom and dad on and off for over a month takes the adjusting to a whole new level! Gav is so cute and amazingly gentle around Teagan. He loves to come 'say hi' to her and stroke her head so softly. He says things like "Hi baby Teagee" "Hi sweetheart!" and "Aaww, she's so cute! She's so tiny!" The other day after trying to talk to her several times, he looked at me semi-panicked and said "Mom! Teagan doesn't know how to talk! We're gonna have to teach her!" When I asked him what words we should teach her he said,"All of them! And we're gonna have to teach her reeaal slow!" He's definitely needed extra attention since we've been home and today while I was getting ready he said,"Mom! Can you quit sprayin and combin' and come play with me please?!"

Trent has also really been helping out with pretty much everything since we've been home, which has made things much easier to handle. I definitely feel blessed to have such great men in my life! I can't wait for Teagan to grow and to watch the relationship she develops with 'our guys'.

Teagan is still doing well. Feeding is definitely a challenge and we have an appointment tommorrow with the pediatrician to see how she's progressing. I'm anxious to see what she weighs! She's still smiling and interacting with us more, and she's even starting to 'talk' a little. She lets out a little gurgle, or a goo occasionally and its so cute!

I love my Sister!

Doing Great!

Teagan had her first appointment with the cardiologist yesterday and so far everything looks great! She had an EKG and an echo (ultrasound of her heart) and the dr. said that her heart is doing everything they want it to do! We've been working with her on oral feeds so that we can take out the feeding tube soon. Yesterday she finished her first full bottle feed! She's nursing alot in between her tube feedings too, so eventually we will switch to all bottle and nursing when she can do it 24/7. She weighed 7lbs 3 oz yesterday and today at her pediatric checkup she was 7lbs 4 oz! Hopefully she can keep adding an ounce a day and put a few more rolls on her little body! She is smiling more when she is awake now and its so fun to watch. We managed to catch one with the camera! Its amazing with all that she has been through that she smiles and is happy!