Monday, July 28, 2008

Back to the NG

Happy to have a full tummy again!


So as you can see, I ended up putting the feeding tube back in today. Teagan has just been working way too hard lately to eat, and hasn't been finishing her feeds. Its so stressful to watch her work so hard, and not be able to help her! We went to the dr. today and she'd only gained 1/2 oz since friday and I just knew it was time. My mom intuition was telling me,"just do it!" I feel like I've been putting it off for a week or two now, not wanting to put Teagan through that but ultimately I was forcing her to work harder to eat! It was pretty awful putting it in again now that she's so big and aware of everything going on. But once it was in and we both stopped crying she looked at me and smiled.... I was afraid she would hate me forever! I already feel a little less stressed about her feeds, because there's no pressure anymore. She can eat half of her bottle now and I can finish it for her. I'm just hoping that now we can start really packing on the pounds before her next surgery! She's 4 months and 1 week old today and she weighs 10lbs 14oz. This evening after 3 full feeds in a row (something that hasn't happened in over a month) she was back to her happy, spunky self!

Teagan is supposed to be 'presented' this week during the cardiac surgical conference over at Children's. This means that the team will discuss her case and share their opinions on when her next surgery should be, etc... Our next cardio appt. is a week from wed. and I'm hoping that we'll have a tenative date so we can start planning.

Thursday, July 24, 2008

Few more pics, and update...



We had another cardio appt. yesterday and everything went pretty well. Teagan's liver is less congested and her coloring is better overall. The dr. thinks that the higher doses of captopril and lasix are definitely what she needed. But her SATS yesterday were only 70, on her hand and her foot... Usually she's in the upper 70's even as recently as last week, so I was a little concerned. Dr. Toews said that because she's on so much captopril, it could be affecting her SATS or her shunt could have a small obstruction. We go back in 2 weeks for a checkup and if her SATS are still low 70's then we'll schedule her cath. I also took Gavin in with us so Dr. Toews could listen to him and see if he had any issues. (we were previously told that Teagan's defect was most likely genetic and that Gavin could very well have some sort of minor defect) He listened to Gavin for a few minutes without saying anything (which had me sweating) but then he sat up and said,"well, he's totally healthy!" What a relief! Its so nice to not have to worry about Gavin too! I've been praying and praying that Gavin would check out fine, and this was definitely an answer to those prayers!

Teagan is still not eating very well and weighed in yesterday at 10lbs 15oz. She's 4months and 3 days old today! No one wants to put her NG tube back in as long as she continues to gain 1/2 and ounce per day, so we'll see how this week goes! But for now- no tube!

My brother Brian is still here for a few more days and took a few more pictures for us. This time of the whole family! I know some of you (family) wanted a few more so here you go. If you click on the small pics, they'll get bigger and you can save them to your computer!

Our heart buddy Maddie is sailing through her Glenn recovery like the superstar that she is! Her surgery was on Tuesday and they're already talking about moving her to the floor as soon as today! Its so encouraging to watch her do so well! We're praying that Teagan will be able to cruise through the next surgery like Maddie!

Monday, July 21, 2008

Picture Post!






Here are some pictures that my brother Brian took while out here visiting! We're headed in for a weight check today to see if Teagan needs the NG tube. If we do end up putting it back in, atleast her medicine will go down a little easier! Teagan has been pretty happy the last few days and eating ok so hopefully our appointment goes well!

Saturday, July 19, 2008

More talking!

video

Update part 2





This last week was pretty busy with Teagan's appt.'s, bloodwork, and weight checks. She had bloodwork done that showed some 'bad numbers' on monday, but the cardiologist reviewed the results wed. and said that they looked ok to her! I guess Teagan's hematocrit and some others were a little off from what a normal baby's would be, but they were ok for a 'heart baby.' I was relieved to hear that and also to hear that by wed. Teagan's liver was starting to feel a little less congested.
We went up to 30 cal/oz on her formula and now her goal for each day is to eat 18oz. We have another weight check on monday and if she isn't gaining 1/2 ounce or more per day then we'll probably be reinserting the NG tube to help her finish her feeds. One of our biggest concerns right now is getting her to gain as much weight as possible before her next surgery. Right now she weighs around 10lbs 11oz and she'll be 4 months old on monday! Teagan has been more fussy lately when she's trying to eat and the pediatrician thinks she's either teething or may have a touch of thrush. We're on another med for that to see if it helps!

We have an appt. with the cardiologist on wed. and they should do an echo on her heart to see if her tricuspid valve regurgitation has gotten any better. If it isn't improving or has gotten worse, then Dr. Toews said that we'll think about doing her surgery as soon as possible to help take some of the workload off of her heart.

Today has gone pretty well with Teagan's feeds and she seems happy too! I'll update more next week on her weight check and how her echo goes! Also, our best 'heart buddy' Maddie had her cath last week and it went great! She's scheduled for her 2nd surgery the 'Glenn' on Tuesday so keep her in your prayers! We know she'll do awesome!




Monday, July 14, 2008

Update


Over the weekend Teagan began tapering off on her feeds and by Sunday had only eaten 360ml for the day. (Our goal is 560ml/day) I took her in today for the bloodwork that the cardiologist had requested and she didn't appreciate that one bit! While I was there I decided to pop in to the pediatrician's office to have her SAT's checked and see if Dr. Lawrence had a minute to see us. Surprisingly, Teagan's SAT's were around 80 on her foot, which is really good for her. Dr. Lawrence thinks that it might be the increased dose of captopril helping her heart to work a little more efficiently. They also weighed her and she had dropped down to 10lbs 9oz. (Last wed. she weighed in at 10lbs 12oz) I was totally ready for him to suggest reinserting the NG tube, but he said they were expecting her to lose some weight now that they had increased her lasix. I guess some of the weight she had gained lately was water weight and now that she's on a higher dose of her diuretic her body is flushing alot of that out. (which is a good thing) A nurse from the office called this evening and said that her bloodwork results didn't look very good. One thing they were checking was whether or not her liver is being damaged by whats going on and I guess those numbers came back elevated. We are going back in for more bloodwork on wed. or thurs. to see if she is improving in that area. We are also going to see the cardiologist this wed. instead of waiting another week and a half just to make sure everything is ok. I don't want anyone to miss anything going on with her, and I want to be sure that we're doing everything we can to help her!


These last few days since my mom has left have been really hard. It was so nice having someone here for a solid week and a half helping out with everything. Also, I think my level of sleep deprivation is finally taking its toll on me. I guess a person can only go so long on 4-5 hours of broken sleep a night! Some days I feel like its almost impossible to give Gavin even a minute of my time when Teagan needs so much right now. Sometimes I wish we had another little one for him to play with all the time when I'm tied up doing other things! On a happy note, my brother Brian is coming out for another visit this Thurs. to help with things around here! He'll be able to stay for atleast a week or two and I can't wait for my 'backup' to arrive.


Please say a prayer for our best heart buddy Maddie. She was admitted to Children's hospital on Saturday and is planning to have her cath this Thursday in preparation for her upcoming Glenn. She's such a little fighter and we know she'll do great! Go Maddie go!

Thursday, July 10, 2008

10th percentile!

Wednesday Teagan had an appointment with the dietician and then with the cardiologist. The good news from the dietician is that she now weighs 10lbs 12oz! -and is in the 10th percentile for her age!! I finally feel like we might actually make it to 12lbs before her upcoming surgery! The dietician agreed that we don't need to make any changes right now as long as she keeps gaining which is nice to hear! It always seems like when we mess with her calories/oz Teagan gets upset!

The cardiology appt. didn't go quite as well as I had expected. I know that as Teagan gains weight and gets older she will start to show signs that she needs the next surgery, but its never something you want to see in your baby! The cardiologist we saw was Dr. Toews (pronounced 'Taves') This was our first visit with him and the 3rd cardiologist we've seen at the Tri-Cities clinic since they're on a rotating schedule. They performed an echo and he examined/listened to Teagan. She has been looking pale more lately and sweating more when she eats so I was concerned about how her echo would look. Dr. Toews said that her tri-cuspid valve is leaking now and it looks like her heart is working a little harder than they would like. He thinks that she has outgrown her dose of Captopril and so he upped it to 2mls 3x/day. He also felt like her liver might be a little congested possibly because she has outgrown her dose of lasix. So he upped that to .6ml 2x/day. The dr. said that these are signs of 'failure' (meaning heart failure, something they never seem to fully explain!) and hopefully these new med doses will help with those issues. I'm supposed to take Teagan in for blood work and then go back to see him in 2 weeks to check on everything. I'm assuming that we'll talk about a cath date at the next appt. I want to know dates to badly so I can begin to plan for the next few months! But I don't think that they really know much more than a few weeks in advance!

One other thing that I discussed with Dr. Toews was my concern about having Gavin checked for any heart defects. He'll be 3 in Sept. and hasn't shown any signs of problems but sometimes I notice that he tires quickly and seems pale. The dr. told me that he was 100% sure that defects like Teagans aren't just a fluke but are genetic and he wouldn't be surprised if Gavin did have some sort of very minor defect! No one has ever said this to us before, and I was completely shocked to hear that! Everyone at Children's hospital always told us that it could be genetic but that it was probably just a fluke. Especially since our family doesn't have a history of CHD. Anway, at Teagan's appointment in 2 weeks I'm supposed to bring Gavin in so that the dr. can listen to him. If he hears anything unusual then they will do an echo. I was watching Gav a little more closely today but of course he seems totally fine like usual. I even got out the stethoscope and listened to him (not like I would hear anything anyway!) but he sounded normal and it made me feel a little better! I'm just praying that its just me being paranoid and that everything checks out ok with him!

I had her pediatrician prescribe a more appropriate dose of her ranitadine yesterday (zantac for reflux) now that she's gained weight and it seems to be helping with her eating. She's had a better eating day today than she has in a long time! She's also seemed happier this evening!

My mom left today after a week and a half visit and I had sort of a crazy evening readjusting to no help! I'm looking forward to a (hopefully) quiet weekend at home!

Monday, July 7, 2008

So much to say!

video

Here's a video of Teagan 'talking' on her playmat. She definitely has more to say lately!

Sunday, July 6, 2008

Quiet 4th

Our 4th of July weekend was pretty quiet around here. Its been really warm lately, so I didn't think it would be good to take Teagan down to the fireworks by the river. She seems to get overheated really quickly, even in the house! So we got take out and watched a movie! Next year we'll really have to celebrate, and Teagan should be walking by then!

Gavin is sure having fun playing with my mom! Today I found them in his bedroom both inside his Teepee!

This week Teagan has an appointment with the dietician, and a checkup with the cardiologist. They told me that we will probably think about scheduling her cath after our August checkup and then think about a surgery date after that. After seeing our heart buddy Natalie's improvements and quick recovery after her Glenn procedure, I'm almost excited about Teagan having hers! Natalie's mom said she is breathing slower and eating better already, just one week after surgery! Teagan has to work so hard to finish every bottle because she breathes so fast and just gets exhausted. Hopefully the surgery will help her body just be able to relax a little!




Wednesday, July 2, 2008

Weight Check & Update



Home Health came out to the house today for Teagan's weight check. I was a little nervous about how much she had gained because the last week or so she's been throwing up a little more and not eating quite as much as she should. But somehow she pulled through and gained 8 oz in the last 9 days!!!! She now weighs 10lbs 5oz!!! I was so excited to see those numbers on the scale! My daily mission is to get her to eat as much as possible and keep her growing so she can be strong for her next surgery, so after this last week I was amazed at her progress! She is 22 inches in length now too which puts her right around the 5th percentile. Her next weight check is a week from today when we meet with the WIC dietician for our monthly check up.


It has been so nice having my mom here this week to help with everything! Sometimes feeding Teagan can take up to 45 min. all together and my mom has been really great at feeding her for me- and getting her to eat! Gavin is making great progress with his 'potty skills' and is all but night trained! He is so cute in his little 'underoos'! He is pretty proud of his 'accomplishments' and announces it to everyone everytime he goes. Yesterday I took him to Walmart with me (my first experience at a store with him in underwear) and of course he had to use the potty twice while we were there. I'm a pretty germ conscious person (even more so now with Teagan) so there was no way I was going to let him touch the public toilet. So I decided to take his pants off and let him stand on the seat, thinking it would go straight down into the potty. Well, lets just say it went everywhere but the toilet! We came out of the bathroom to meet my mom and he proudly announced,"Hey grandma, I went potty all over the place! Did you hear me? I went potty all over the place!" My mom started laughing so hard I thought she was going to do the same! ha...

Tuesday, July 1, 2008

Road Trippin!

Gavin & Nana
Gavin 'watering' the lawn
Gav & cousin Garrett
Trent & Gavin
Me & my two little loves!
Teagee
Trent's dad 'Pacaw' holding Teagan.
Gavin and cousin Garrett.
Gav hiking with Pacaw

After a good report from the cardiologist last week we decided to take a little road trip up to Trent's parents' place for the weekend! The cardiologist decided that Teagan is still ok without the propanolol and thinks that her little ER 'episode' was probably due to weaning the medicine too quickly. He also said that he's guessing her surgery will be sometime in Sept. with her cath procedure in August to make sure that she's ready. Usually kids are in the hospital for a much shorter duration for the Glenn and we are hoping for a quicker recovery than the first surgery. The cardiologist said that when kids are a surprise diagnosis like Teagan (not known before birth) 9 times out of 10 they are hospitalized atleast twice as long as the pre-diagnosed. One of our heart buddies Natalie had her Glenn last friday and was moved to the floor by monday- 3 days later! She's doing awesome and we're so happy for her and her family!

Our 'road trip' over the weekend was both fun and stressful. We couldn't wait to get out of town after hanging out at home for almost 3 months but coordinating and packing everything we needed was alot! It was great to visit with family and finally have a change of scenery though! Trent and Gavin went on a hike with Trent's dad and brothers' family and had a great time. Trent and I even went out for about 2 hours and left both kids with Nana & Pacaw! This was the first time since we've been home from the hospital that Trent and I had been alone without the kids! I was so happy that Gavin was able to get some fresh air and be a little country boy for the weekend. He got to play with cousin Garrett, run through the sprinklers with Nana, play in the haystack, and get really dirty! We are in the midst of potty training with him and this weekend he had his first experience 'watering' Nana & Pacaw's lawn....(see above picture!)

My mom flew in last night to stay with us for a while and help me with the kids! This is the first time she'd seen Teagan since a few days after her surgery so she was pretty impressed by how great she looked! Gavin is really enjoying someone else to play with and I'm loving the break!

Tommorrow home health is coming out again to weigh Teagan and see how she is doing. Last monday she weighed 9lbs 13.5 ounces so I'm hoping that by tommorrow she is atleast 10lbs... we'll see! She's thrown up a couple times in the last few days which doesn't help, but I'm still hopeful!