Cardiology Appt.

 

Maddie Moo had an appointment back in November...and I'm a month late posting about it. We've just been relishing in the fact that she had no alarms or "wait and see's" on this visit! She had a fantastic visit! I think this was the best report she's ever been given.

Her sats were the highest we've ever seen in clinic, even with her fenestration still open, the pulse ox read 93%!!! Dr. C was pleased with her echo, blood pressure and ekg. He even talked about spreading her visits out to once a year but decided we should have 1 more good appointment like this before doing that so in 6 months she'll have another cardiology appointment. She continues to grow like a weed, shocking us all with being in the 94% for height and weight. If only her brothers took after her? I joke that the extra calories we fed her to get her to grow as a a baby have finally kicked in, causing some fast growth in this girl! It just reassures us that her heart likes it's plumbing and tall genetics have kicked in.

What I took away most from this appointment other than her awesome numbers, was witnessing how grown-up and mature Maddie has become at her dr. visits. She carried on a sweet conversation with Dr. C, answering his questions and visiting about her experiences in 1st grade. One question she had for him was if she could play basketball...she was recently told by a peer at school that she "can't play because of her heart" which has bothered her. When she came to me with this, I explained that I thought she could but the best person to ask would be her Doctor. Luckily, we had an appt. the following week, so it was a perfect time for her to talk to him about it. I absolutely loved his answer... "Maddie, you can play and participate in almost any sport  I can think of" then he winked at me and whispered, "lets not take up kick boxing or anything like that." She sure puffed up when he gave her the go-ahead. She's been wanting to play basketball, like her big brothers do, and she is so excited to be doing that on Saturday mornings now. I love that my HS coach and good friend are the coaches.

As we watch Maddie grow (oh how she's grown!) and become this dear little girl, we stand amazed. Amazed at His goodness and at His provision over her life. I know I've said this a million times but we never expected life to be this good. We are so very blessed. Thank you for following her journey and for your prayers on her behalf. They have been answered!

Fontanniversary & a heart re-check

waiting after her echo to see Dr. C

Today marks 3 years since this girlie's had heart surgery. We call this her "Fontanniversary" and try to recognize it in some way as it's a special day. May 24, 2011 was the day she completed the three-staged surgical repair on her heart, having her third open-heart surgery called the Fontan. Tonight we'll celebrate with chocolate cupcakes and her choice of movie, which I've been informed is "Beauty and the Beast" (the boys will be so thrilled!) 

In fitting fashion, we made a trip over to Seattle yesterday for a quick heart "re-check"...over the past couple weeks she's been extra tired, her sats have fluctuated between the upper 70's-mid 80's and we've noticed more blueness than we have in a long time. I'm glad she and I made the trip over. After an echo, Dr. C commented that she's developed more collateral vessels and when they can be seen on echo, they're usually quite significant (or we just got lucky) but they're also tricky to figure out where they're robbing blood flow from/or dumping it in. She's struggled with growing collateral's in the past, the question remains do we do something about them as he believes they'll just continue to grow. Some kids just grow them, Maddie is one of those kids. Her sats were 87-89% in his office, which is great & within her norm, so as of now, he'd like to wait. If she begins to trend down and stay down with her O2 saturation's, then she'll have to have it addressed in the cath lab and hopefully they'll plug her fenestration while in there. She still has some mixing of unoxygenated/oxygenated blood which causes her sats to be lower than if she didn't have a hole in her Fontan conduit. The best part of the day yesterday was just spending time one-on-one time with my girl-chatting during the drive, shopping at the outlets in North Bend, and having a nice lunch at one of our favorite places.

Subbing in Maddie's Kindergarten Class!

Little did I know that this girl would teach me so much...Having a child with a life-threatening condition has changed, stretched and strengthened me. It hasn't happened over night, accepting the unknowns of Maddie's future is difficult, but it has thankfully brought me closer to God than anything else I've experienced. I'm incredibly, eternally grateful. 

Happy Fontanniversary Maddie, you continue to amaze me each and every day! I love you so much!

Cardiology & the Zoo!

Maddie had her 6 month follow-up cardiology appt on Monday in Seattle so Nany joined us and we set out for an overnight, little spring break get-away. I'm still in shock a bit as this was the best "report" we've ever been given after an appointment!!! Dr. C didn't have any bombs to drop about her heart, he thought she's looking great and doing remarkable! I would agree and we feel so blessed by this great news. She was satting 88, still has her fenestration and there are no plans on closing it, her BP was 95/53, and she's still growing! Her pulmonary arteries look great and he mentioned that if you didn't know her history with PA stenosis/hypoplasia, you'd never guess they've been a sore subject these past 6 years on what to do with them. As for the jets that were seen on her Nov. echo, Dr. C couldn't see them this time so he's sure they had to be an imaging error. Huge relief. 

After her appt, I ran up to the new ICU wing (so fancy) and visited a heart mama friend, Devon. Her daughter, Karlee 5 yrs, had a transplant at 3 months old and recently had a whirlwind weekend, ended up having to have surgery on her intestines/bowel where a mass was found. Long story short, this tough little heart kiddo now has Stage 4 Lymphoma. It is completely heartbreaking. The strength Karlee and her family has is amazing. She's started chemo and is making improvements each day. We're praying for her recovery and healing. Please join us in praying for Karlee and her parents... 

At the beginning of this journey with Maddie, Bryan sweetly said when I was complaining/crying about all of the trips we'll have to make over here, "just think of all of the shopping trips you can make out of coming over for her appointments"...he was right. He probably regrets saying that now! We do really look forward to our Seattle appointment trips! We enjoyed eating out, a little shopping at U Village and outlets (Maddie loves shopping), swimming at the hotel pool and the zoo before heading back to the country... here's Miss Maddie posing with the zoo's "PeaHock" as she called it.

Nany was telling Maddie that Peacocks make a really loud, yelp sound so she imitated one and this guy wanted to impress...he yelped back at us and strutted his stuff. Too funny!

 Sam doesn't pose or smile much for pictures, he is pointing to lion tamer big sis though...

 And the carousel was probably her favorite. Smiling the entire way... 

Sammer and I, he was a little scared so we ended up riding double...

It's such a relief having this appointment behind us. Maddie starts soccer on Monday and we're getting busy with Jace's baseball games in Moses Lake each week as well as farming. The boys have been working this spring break with Bryan, putting in pipe, shoveling trenches, and putting in a sprinkler system. It's been a beautiful week, time to head outside!

Bry & Jace

Cardiology appt.

Kindergarten School Picture :)

Miss Maddie had a her cardiology appt. last week in Seattle. Bryan, our niece Savanna, Maddie and I made the quick trip over and back. Savanna and her youth group sewed blankets for the cardiac babies so she came along to deliver those and see what her cuz does at her appointments.

Maddie has become such a cardiac patient pro, laying quietly for 45 minutes during her echo so the tech can get pictures of her heart, being helpful putting on and taking off the EKG stickers and leads, and holding very still during her blood pressure and sat checks. It wasn't always this way, between ages 9mo-3, I felt like I was at a circus, trying to keep her attention, keeping her still and helping to keep her calm and distracted during these tests and procedures. Makes me tired and sweaty just thinking about the antics I'd do!

Our girl is still growing like a weed! Never in a million years would I have guessed she'd be in the 90th percentile for growth. She is a healthy girl, our prayers have been answered. Her sats were 92% and blood pressure 90/65...both great for her. Dr. Chun reviewed her past echos to compare a new finding, which we're still unsure whether this is a "fake-out" on the pictures or if its really there. Her echo pics were very clear which was a bonus. It appears that Maddie's developed a couple of "jets" at the base of the tube and her IVC. He reassured us that scar tissue is holding everything in place and is guessing that a couple of the sutures which connects the shunt could be loosened and blood is able to leak or shoot out in those areas instead of flowing up the tube to her lungs. I actually noticed it during the echo...alarming to see but more so to hear about.

Dr. C has always laid it all out there for us, never holding anything back. I appreciate his honesty and willingness to share the "not-so-good" stuff about her heart but it takes me a bit to process it and after an email to him with more questions and a week and a half has passed by, I'm ready to post about it. He also said the pressures are up in her Fontan side, doubling from her echo in May (went from a 3-4 to a 8-9). From the echo, her PA's look great, she's still dependent on her fenestration, so why the pressure increase? Who knows...my theory is her extremely fast growth has pulled them loose, but that's just my theory. We don't know why or the specifics of this, further testing is needed. I pray its just a false alarm on the echo. As of now, her Fontan continues to function well and we'll focus on that. He mentioned a cath or cardiac MRI in the future would be our best bet in investigating this. So we're still on a 6 month pass. Dr. C wants to keep watching this and reiterated that if we see any changes in her (lower sats, activity level, her color) to call right away and he'd work her in to be seen.

I continue to learn so much through this journey. Fear creeps in often and I find myself praying more lately for comfort and protection over Maddie's heart. I'm so thankful she's done so well, but there are days that I'm waiting for the other shoe to drop...and this is no way to live. I am not a good mother or wife when I'm in this mindset. I'm distracted, short-tempered and negative. So when I find myself in this mood and way of thinking, I choose to be grateful and to trust in Him. I try to focus on "right now" instead of borrowing trouble and worrying about something I have no control over. I do have control over how I handle this and what I consume my mind with. Most importantly, I want Maddie to have an example of strength and reliance on His promises. She lives with this and I pray she can live courageously and with trust in the One who made her this way. 

"Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand." - Isaiah 41:10

plans have changed...

Yesterday we took Maddie over to Seattle for a cardiology appt. with Dr.C and an echo. The plan was to have a check-up, exam and prepare ourselves for a 10:00 heart cath this morning. We had our hotel booked, boys' care figured out here at home and pretty much packed up the whole house preparing to be gone a couple of days. God worked some of His magic yesterday... Maddie's echo pictures were very clear (which is rare since her Fontan), showing Dr C those areas of concern that could only be helped through a heart cath. Her pulmonary arteries look as if they've grown, they are staying wide-open and her Fontan looked beautiful. She still has a little hole (the fenestration which he referred to as a pin-dot) in the conduit but after talking to Dr.J, her cath doc, they didn't feel Maddie would benefit from closing it...she's dependent on it and why mess with things if it's working for her? She has higher pressures and needs the pop-off for blood flow. Her aortic valve is still leaking but its mild so just something to watch but nothing to attend to. And, drum roll please, her O2 sats were 89%, which we haven't seen in a very long time! SO...Dr. C left it up to Bryan and I if we wanted to go ahead with the cath or not. It was an easy decision for us- NO. If all that Dr. J would be going after were the collateral vessels, we can wait. Dr. C did say it's inevitable that she'll need to go back in the cath lab in the next couple of years for some maintenance but we can wait until she shows us more signs, one being her sats staying in the low 80's. This would prove that those collaterals are really stealing blood flow. There really is no rhyme or reason to why her sats fluctuate in his opinion...it could be when she's run-down, trying to fight a bug or hers just will ebb and flow in the 80's. At home, she sats anywhere between 84-88%. Dr. C did say she is one of the lowest satters, possibly the lowest satting Fontan he sees in his practice. But she's doing well, and we'll take it. We will follow-up in 4-6 months with her unless something pops up, unexpected of course. I am amazed by Maddie. She is truly a little miracle and continues to bring so much joy and surprise to our lives! In this world of CHD, things can change, very quickly, so we'll take this! Hearing some good news is so good for our hearts right now. As we were leaving her appt., she was so funny. She tipped her head back, put her hand on her hips and told an audience of nurses (she's a little adored by the staff at Children's) "I don't have to have a cath anymore!" Spunky, yes. I believe this spunk has helped get her this far.

Getting this news yesterday really felt like an answer to prayer. Bryan's dad is barely hanging on. This past month (really, months) has been so difficult for our family...anticipating the inevitable, watching him die is very, very hard. Papa is one tough guy, he has willed himself to keeping on and his determination has been amazing to watch; a little frustrating, but really TOUGH sums him up. I'm so glad my kids have that in their genes. Having Maddie's heart cath on the horizon has been a struggle- wondering at times if God is really hearing our prayers, how are we going to do this with all that we have on our plates...well, I can say without a doubt that HE DOES listen. His timing is perfect and it isn't always our timing but knowing that He works all things for His good is such a blessing. The news yesterday brought some much needed light to a dark time we're experiencing. Restoring some faith, looking to him, THANKING HIM...this is what everyone needed.

But I can say, whether we were in the pre-op area waiting for her procedure or home getting the boys ready for school this morning, my hope and trust remains in Him. He has shown us a tender mercy in one of the most difficult seasons of our life, losing a parent, and we thank Him for this mercy. He is there, He willingly shines His grace upon us, always. I thank God for this time, as difficult as its been.

Romans 8:28

^"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Miss Maddie doing what she does best...loving on baby brother!

time for another cath...

Maddie had a cardiology check-up on Monday. It was a full work up which was bumped up a couple of months due to her sats declining over the summer. Back in May, she was satting 90-92 and on Monday, her O2 sats read 84%. Though she still has a fenestrated Fontan (hole created to help give blood flow an alternate route due to pressures, which creates some mixing of O2 rich/poor blood) her sats shouldn't be this low now with her physiology. So, Dr. Chun and Dr. Johnston discussed her crummy echo pics and decided she needs to go to the cath lab to figure this one out since nothing could be determined by echo. We have a few hunches: collateral vessels again, her Pulmonary Arteries may be narrowing back down again, or her conduit may have an issue where it's sewed to her own anatomy. To be entirely honest, I hadn't worried much or had that "feeling" going into this appointment. I've noticed her more winded, a tinge bluer and she comments frequently that her breath hurts but being passed the Fontan, I don't worry about it like I used to and overall, she's been about the same energy wise. I'm glad her doctor is pro-active and wants to get a handle on this. We're grateful for their wisdom and how much they care for our daughter and her well-being.

Our plates are very full right now and I wasn't expecting this. Bryan's dad is terminal with cancer, he's declined rapidly the last few weeks and going through this experience has consumed us. It's been a roller coaster and thank God for our family and friends who've helped along the way. Watching someone you love go through this process is agonizing.

But one thing I've learned over these past four years with Maddie is to rely on His strength, His timing and rest in the peace that God has this one covered. When life is heavy and we feel beat down from what we're going through, He is there. Always. What a comfort this brings in times like these.

Cardiology appointment, check!

This week is going to be a crazy one and to kick it off, we drove over the pass this morning for Maddie's Cardiology and Nephrology appointments at Children's. It was a looooong day but well worth it. Getting good news never gets old. Her check-up proved what we've been seeing from her, great results and a growing girl!

Maddie has officially 'graduated' from Nephrology...no need to see her as her kidneys have grown well and are finally similar in size! She doesn't appear to have the reflux as she has shown no symptoms and from her renal ultrasound, they don't see any signs/damage from this. She weighed 42 lbs. and is 42 inches tall (80th percentile).

As for her heart, she's finally hit the 90's with her O2 sats, working her way up from 84-88% since surgery. She actually satted 92% in the clinic today! Whoo-hoo! Her echo showed really nice heart function but also two collaterals...crazy enough, these collateral vessels Dr. Chun believes are helping her out this time around. One is off of her aorta (we knew this one was there from her cath last February) and the other lies on the backside of her heart. They don't seem to be bothering her too much, so we won't be intervening until they cause problems. To see them on echo does mean they are getting some substantial blood flow though, in the past, her collaterals weren't large enough to see on echo. Her pulmonary arteries (always have been on the small side) looked fantastic! They've grown!!! As far as her fenestration, (the small hole that is in the conduit) it's still open and she's still depending on it. I was crossing my fingers that it had closed on its own (higher sats) and she wasn't needing it anymore but Maddie just needs that extra "pop-off" to help relieve pressures in her heart. I'm glad shes's getting a bit of a break with having the fenestrated Fontan but we also talked that it would be nice to close it someday. Having it open poses a higher risk for stroke from a blood clot. She would also gain a few more points in her sats with it closed.

And guess who's Fontanniversary is this Thursday? It will be ONE YEAR on the 24th since our sweetheart's last, and hopefully final heart surgery. Wow. I feel beyond blessed and watching this girl thrive is a daily reminder of God's goodness and grace.

cardiology check-up

Maddie's 6 month Fontan follow-up was Monday in Seattle. She had a full work up at the hospital and everything looks great! Dr. Chun was very pleased with her echo, he was able to see her PA's and the Fontan site, thanks to clear pictures and a very cooperative little girl. It's usually difficult getting clear shots of her PA's, due to the scar tissue from past surgeries. Her fenestration (hole created in the conduit) is still there and she seems to be very dependent on that so no hurry on getting it closed anytime soon. Dr. Chun feels like we should address it though in the next year, in which she'll need to have another heart catheterization in order to close it. Her 02 sats were 85-88% which is where he believes they have leveled out at. We had hoped she'd end up more in the 90's but with her anatomy and likelihood of forming collateral vessels, her sats are on the low side for a post-Fontan kid. Fortunately, it doesn't seem to bother her a bit and since she's as high as she's ever been oxygen wise, her body is loving it! Maddie has had more activity, color and just overall better health since her surgery so we'll take the upper 80's and not complain :) She weighed 39 lbs. and was 40 inches in height--yes, she's grown a bunch since her surgery too. I can't believe she's in the 80th percentile for growth! Miss Maddie doesn't need to be seen again for 6 months, unless something comes up. When I stop and think of all she's been through this year, it's truly amazing and reminds me of how remarkable that little heart of hers is.

Friday's Cardiology Appointment

Bryan, Maddie and I took a quick trip over to Bellevue on Friday for her cardiology check-up. Clinic is now at the brand new, 75,000 sq. ft. Children's Bellevue Clinic, which was so incredibly fancy, clean and state of the art. She's making steady improvements with her appointments and this one had less tears and more self-control on her part. It was good progress for Moom's.

She had the full work-up: EKG, blood pressure, weight/height, sat check, and echo. Dr. Chun was so pleased with the pictures he got from the echo- a clear view of her SVC as well as pulmonary arteries (which is always our concern). They still look like they're staying opened and her sats reflect this at 77%, same as what she came home with post-cath in May. He's very excited about her weight, 13.4 kilos (29 1/2 lbs.) and with the curve she's on regarding her growth chart, she should hit that "magic number" by late spring and be ready for her Fontan surgery. Because she'll have a permanent gortex-tube placed in her heart this surgery, the size is critical. The magic number is 15 kilos or 33 lbs....to put in an 18 mm or 20 mm conduit, which is the goal for the size of conduit in the Extra-Cardiac Fontan Surgery.

The plan is to have a cath in February to determine if she's ready for it as well as a maintenance check before surgery. He said that she'll most likely have the Fontan 1-2 months after the cath, once she's presented to the cardiology team. If things continue to stay the same, we're looking at March or April for her third open-heart surgery at Seattle. She'll just be turning 3.

Upon leaving the appointment, Nurse Barb strapped on another Holter Monitor to our little princess for her pre-Fontan study of her heart's electrophysiology over a 24-hour period. She did really good with it this time and I'll Fed-Ex the leads and monitor back tomorrow. But this was just another reminder that our daughter does indeed have a very serious heart problem... the Holter results will help determine whether pacing wires will be put in during her Fontan surgery. Some kids (many single-ventricles at some point) will need a pacemaker and while the surgeon is already in there, it's a debate whether to just put wires in during the Fontan, just for future's sake. The least amount of times they have to do a sternotomy on patients, the better.

I left with a bittersweet feeling; relieved that she had such a wonderful checkup but the reality of her 3rd surgery really sunk in and my stomach has been in knots. She's closer than further away from her Fontan now and there's no getting out of it. I know I've said that I just want to get it over with but now that it's really creeping up on us, I take it back! It's sad realizing what she'll have to endure with this last operation and my heart breaks just putting her through this. Maddie has done so extremely well with her anatomy that it just doesn't seem right sometimes. We have been so lucky and blessed with her. So we are enjoying each moment...we have lots to look forward to with the holidays coming up and a fun family vacation. We know that God's timing is best and we put our faith and complete trust in Him.

Looks like she's needing a tune-up...

After a last minute cardiology appointment to Children's last week, it looks like Maddie needs another cath. We've been noticing her increased blueness, lack of energy and decreased appetite. I periodically check her sats and heart rate and last Monday, her sats were 74 (which is still in her range) but heart rate stayed in the 70's for a good 5 minutes. Her normal heart rate is in the 120's-130's at rest, so this was low and abnormal for her. I always try to do her sat checks the same (sitting in my lap & reading books), so when I saw this reading with a great tracing, I became concerned and called the nurses line at Children's. They advised that we go see her pediatrician and get another reading. So by at her peds office, she was back to her norm and it left us with nothing to really worry about.

We still followed through with cardiology since we were lucky enough to be squeezed in. Maddie's next appointment was supposed to be in June (6 months stretch from her last). So, my mom and I headed over the pass with her last Thursday for her cardiology appointment. Since Dr. Vernon is on maternity leave, we were able to see Dr. Chun again. He knows Maddie well so that was reassuring. She had the full workup...and the highlight of the day was she was an absolute ANGEL for her echo!!! I was not expecting this since her last dr's appointments included pokes and she's been pretty tearful the last few times we've been in a doctors office. But the memory of her past appointments kicked in when we arrived to the exam room for her EKG and exam. Thank goodness she was such a big girl during her echo because it showed us the possible reasons why she's declined in energy and looks more like a smurf lately. Her pulmonary arteries have not grown and measured much smaller than her last measurements. She has more stenosis in those areas. Dr. Chun also mentioned that collateral vessels may be stealing blood flow again and she could probably use some coils. Dr. Chun advised that we better get her to the cath lab soon for another look in there. So we're waiting to hear from scheduling on when. We should know by the end of this week, I hope.

I was actually relieved after this appointment, even though another procedure is looming in our near future. I always wonder about her heart, always worry about her puny pulmonary arteries and have often thought that her "symptoms" could be from those unwanted collaterals she creates. After her cath last year, where Dr. Jones put in 4 coils, he made the comment that she may continue to grow the collaterals which in turn, decrease the flow through her pulmonary arteries. This can result in the lack of growth for her PA's. They need to grow in order for her next major surgery to work. I'm just glad we're staying on top of this and if it takes a tune-up in the cath lab once in a while, we'll do what it takes.

We were stuck on the pass for about an hour on our way home due to the roads being closed. Here's Maddie enjoying her freedom from the carseat...thanks Nany for coming along too! You're always so much help :)

Maddie also had to wear a Holter Monitor for 24 hours to record her heart's activity. I kept a journal as well to tell what she was up to so it may explain what her heart is doing during certain activities. We should get this Holter study report back within a couple of weeks.

She looked like a little doctor with her pager...it counted down the seconds until her study was through. Then I fed-ex'd it back to Children's! It worked slick although she didn't enjoy it much. She kept repeating to us "doctor's hurt", "doctors off" and "owiees". So goes the life of a heart kid.

Cardiology appointment

Giving daddy kisses while waiting for Dr. Vernon

Last Wednesday, Maddie had a cardiology check-up in Bellevue. She had an echo done as well as a thorough exam and visit. Her sats were surprisingly high, 77% (she's been running in the low 70's at home) and she weighed 24 lbs. and 33 inches in height. It's impossible for the echo-tech to find her Glenn site (same story each visit, wiggly toddler and lots of scar tissue doesn't make it easy) but with the pulmonary blood flow they can see, it looks like the re-plumbing job is still working. Our burning question was when will she need her 3rd surgery...well, Dr. Vernon believes that Maddie will likely be 3 or 4 before her Fontan. That's really nice to hear but at the same time, I wish we could just get it over with. She needs to be around 15 kilos for it (30 lbs.) so we probably do have a ways to go since she hasn't gained any weight for almost 2 months and is just getting busier by the day.

I'm always nervous before her appointments and find myself mentally preparing in case we recieve bad news. Maddie was sick pretty much all of November so I was apprehensive that she'd have such a good report, especially since she's turning more smurf-like each day and the sat monitor at home enjoys 72-74%. Even with the increased blueness, her Card. believes she's doing well. And the best part of the visit was hearing we don't need to come back for 6 months!

She also recieved her first round of the Synagis vaccine today with Jana at our local clinic...2 pokes & 4 doses were given = a $5400.00 immunization! That's just crazy. She'll continue to have these throughout the winter and we're jumping for joy that this is the last season she'll be getting these costly shots!!!

H1N1 Vaccine

Yesterday Maddie was able to get her swine flu shot! Phew. Our family doc, Dr. Allred (uncle), called and only recieved 10 shots for his clinic...Maddie was lucky to recieve one being she's in the high-risk category and in 30 days will recieve the rest of the dose. The boys were also able to get the H1N1 flu-mist so a big SIGH of relief for us, hopefully we're covered now! We've had our Flu shots, H1N1, and Miss Maddie now waits for her VERY EXPENSIVE, monthly, super ouchie, 2 pokes each time Synagis shots regime to begin. Poor thing.

update on appointments with rash girl

Maddie is feeling so much better! At the moment, she's sitting on my lap eating a big spoonful of peanut butter. I hesitated to report on her status since it's been changing so frequently these days. The latest fever, which took us to the ER over the weekend, was the onset of Roseola. This Roseola rash (it's #4 and different from the previous 3 rashes) began Wed. afternoon on her tummy and back. That explains the 4 days of high, unexplainable fevers! I've been singing "rash girl, na-na-na-na-na-na-na-na" (the Batman tune), she loves her new theme song :)

As for her appointments this week at Children's...
Nephrology went fine. She was ultra crabby and did not enjoy her renal ultrasound one bit. Her kidney's have grown, measuring 5.6 and 6.5, they are functioning and now she just needs to have a repeat VCUG at 2 yrs. old to determine if she's grown out of the vesicoureteral reflux since you can't tell this with ultrasound. Her
Bacterim has been changed to 2 mls of Furadantin which is a little spendy!

She was also squeezed into Dermatology while we were there and Dr. Sidbury was able to check out the weird rashes she's had. I had pictures of the past ones. His census is that it's viral related, and when she's come down with these bugs (Metapneumovirus, Stomach flu and the onset of Roseola) she's broke out in a rash. She is a skin sensitive kid and it may be her "warning" to us that she's getting sick, I guess that's nice to know. He does think it's something she'll grow out of. We ended up cancelling ophtamology since she was so tired and we wanted to save her for her card. appt.

As for Cardiology, she was a superstar! I was amazed at how big she was during her echo, such a good girl as long as she had books, bubbles and a Baby Einstein movie to distract her! Her echo looked great, although she does have some veno-venous collaterals and a trivial amount of aortic valve regurgitation but it's nothing to stress about. The systemic, working side of her heart (her left) is doing it's job and that's awesome. Her O2 sats were 77% and EKG was normal for her. Dr. Vernon was impressed with how big she is, 21 lbs. 15 oz. and 31 inches in length, measuring in the 25th percentile! She is happy with Maddie's status, gave her an A+ and also a 6 month pass!!! We won't be back for another heart appointment until next year! Wow, what a blessing and huge relief. Our baby girl has come a long way.

Nany is the hero at the doctor's appointments (both of ours!) She's so much help to me, and Maddie just adores her since she always "saves" her after a procedure or test. I'm always the bad guy, holding her down. That's my job, right? I'm glad "NANEEEE", as Maddie likes to yell, is the hero. She deserves it. We also got in a short chat with Mimi and Mia! She is such an amazing little thing, super cute and smiley just like her sweet momma. We always love seeing them and lucked out having our cardiology appointments the same day. Maddie's not-so-favorite part, the EKG. It is not painful, just annoying.
Here's the big girl during her 40 minute echo

the latest with little miss

Lots of standing, preferably in the middle of the room without anything to pull up on and from a crawling position! It's amazing to see and something the boys never did. She did take her first steps Tuesday night...it was very exciting, involved lots of clapping but nothing since! Cousin Savanna and Auntie Lesa were able to coax her into taking those few steps...it was fun to sit back and watch :) She's surely exceeded my expectations for what she'd be doing at 14 months! Climbing up and down stairs...she backs up at least 6 feet before hitting that first step down, overly cautious?!?
We often find her sitting in boxes, laundry baskets, plastic totes, whatever she can fit/squeeze into and play in. A shoe box has been the smallest box I've witnessed so far.
And she loves to play with trucks...this red monster truck is her favorite. The big brothers really enjoy this and have taught her well. She makes some obnoxious truck sounds (aka: a loud, spitting noise) to go with her truck pushing.
Life is sweet...

Branding

I was raised on a cow ranch, just 12 miles from where Bryan and I live now with our little brood. We are so fortunate to have both of our families share the same zip code. Spring is busy on our farm and also on my folk's ranch, and the kids and I try to share in this whenever we can. I had a wonderful childhood and want the kids to experience much of what I did growing up. Riding horses, gathering and working cattle, and competing in rodeos was how I spent much of my time and this way of life was "branded" into me. It was such a fun way to grow up. Although there are fences all over the ranch, we kids were not fenced in and gained an early independence this way. So many memories and adventures... I hope my kids will experience this type of freedom as well.

Here's a picture of the Saddle Mountains that the ranch sits at the base of. This valley where I grew up is called Symrna and I always feel so peaceful when I'm down there. Life just seems to slow down a bit. Here's my cowboys...Cade's hat looks a little pilgrimish! Climbing fences at the branding with cousin Jett Henry. These three have so much WILD fun together...dirty faces, skinned up knees & elbows, and asleep at the dinner table. This sums up a busy day at the ranch for these boys.
Mooms and Nany relaxing in the sweet sunshine at the branding. Maddie "mmmmm's" (her moo sound) everytime she sees a cow or calf. She was konked out after her "mmmming" all morning.
Uncle Ryan and the boys getting ready to go mark the calves' heads. This is the little kid job. They really get off easy since my job at the brandings at their age was the "ball bucket"...yes, I had to collect the rocky mountain oysters with my bare hands after they cut the bull calves to save in the bucket for the crew who liked to eat them- and NO, I've NEVER tried them!!! Disgusting and I gag at the thought of it...heard they taste like chicken though!My older brother had his saddle made with the ranch brand on it, Circle 11. The ranch has been in my dad's family for 4 generations now. Between my dad and my 2 brothers, there are 4 brands that are used to distinguish who's herd they belong to. Bry and I also have a brand, as well as his parents and grandparents. We have a feedlot full of fat cattle, many of them were my dad's/brother's last calf crop. With the growth of our families, we may just have to start branding the kids in order to tell who belongs to who!
Here's the branding crew minus my mom, Grandma Shirley, and I (we were just the cooks...) Even Miss Maddie made the picture with Ba! Branding usually takes the month of April to get through all of the calves. It's a fun time!
Uncle Ryan got the boys their first ropes. He also dug out his old roping dummy so they could practice... I'm going to have to get back in the saddle soon so I can prove to them that I can rope! They don't quite believe me...mom's aren't supposed to do this, I guess. It's a great skill though and I may just need to break out my old ropes to get my kids in line... My dad filling a syringe of vaccine. All of the calves get shots, branded, and ear marked before they get turned out on the range with their mama's for the summer months.

Jason on a colt, coiling up his rope after "holding one" on horseback. We still brand the old-fashioned way, all on horseback and "rodeo" style-healing the calf and dragging it to the fire for branding. Sometimes it's good watching with all of the crazy wrecks than can happen!
Ryan branding a calf...this smell brings back so many memories for me. I know, I'm weird.
Nany, Maddie, Aunt J and Kylie Rose enjoying the branding from the side-lines. Maddie liked teething on the rusty fence...
They make pretty handsome cowboys...normally they're in "farm boy" mode until they get on the ranch. We'll see if any of our kids want to rope/rodeo like their mama did. Yes people, I was a cowgirl...still am deep down.
Here's the proof...

wordless wednesday

Heart Cath yesterday

The famous Dr. Tom Jones...he's very renowned for cath intervention and so kind too. This was Maddie's third cath procedure and Jones has performed them all. The photo was taken right before we left last night. She was quite puffy around the eyes from all the IV fluids, today she's looking back to normal...many wet diapers later :)

We arrived at the hospital bright and early to check-in, she was scheduled to go into the cath lab by 8:00 and 2 hours later, she finally went back! There were camera difficulties in the lab and the technician that was supposed to be there to fix it was stuck in traffic, so this held up the show. Maddie did great waiting in the pre-op area by taking a little snooze, played with my phone and enjoyed lots of cuddling before her procedure (we did too).
I was able to go back with her into the cath lab (all scrubbed up but didn't get a picture) and help ease her into getting put under...nothing about putting a 1 year old out is easy! She fought the gas mask and when I left, she was in a light sleep with her legs still kicking around! It was neat to see the cath lab and watch the nurses and anesthesiologists do their thing, but a little hard for mommy to hold down her girl against her will. I always wonder what she's thinking as I'm holding her down and saying to her, "it's ok...I know...shhh-shhh...be a good girl...mommy loves you...honey, I'm sorry..." But I do hope there's some comfort when the last face she sees is mine as she drifts off into la-la land.

The cath took 3 hours and Dr. Jones ended up doing a cardiac collaterization with embolization of collateral veins with coils. Whoo, that's a mouthful! In other words, he put in 4 metal coils to clot off some unwanted veins she's created. She had developed some large collaterals off of her innominate vein that were robbing blood and causing her sats to go down. These collaterals that she formed are useless. With her heart's anatomy, her body formed them to get more oxygenated blood to her extremities/lower half of her body since it's oxygen deprived. Her body is trying to "fix" her heart problems yet only causes trouble by doing this. Her sats in the cath lab were 74-76 and when she was finished with the procedure, veins all coiled up in tiny metal springs, her sats were up to 81-84! So coiling off these unwanted vessels helped out!

Here's a picture of one of the collaterals off to the right of the innominate vein...it swirls around, looping and stealing that precious oxygenated blood just received from the lungs. Here's a picture of the coils on x-ray, they'll stay in her forever. The long, skinny 1-inch looking lines are the wires holding her sternum together from her two surgeries.

Dr. Jones was also able to get a good look around her heart (he made 3 entry points/puncture sites: neck, arm/shoulder area, and her groin) and he gave us a wonderful report! Her pulmonary arteries have grown, heart function and pressures looked great, and her Glenn site is fine too! Her heart likes the Glenn flow :) There was a little narrowing at the site of the SVC and the PA but with her future Fontan surgery, the IVC conduit will be sewn into that spot and should take care of the problem. He said that she really looks wonderful and this procedure should buy us some time. In his "seasoned opinion" (his words not mine) Dr. Jones feels that completing the Fontan is better the bigger she is. He feels like the Glenn should be sufficient enough until she's 40+ pounds! We've been thinking her last surgery will be when she hits 30 lbs, so it looks like we may have a longer wait! It's actually a bit of a relief. Miss Maddie is 9.2 kilos, which is just 20.24 lbs...she's gonna have to double in size before that surgery so she may be 4 or 5 when she has her Fontan. It's all on a "need" basis...when she gets bluer, sats stay down, more winded with activity, and overall tired, these will be the indicators that it's time for her Fontan surgery. Dr. Jones' report of Maddie was so nice for my mommy heart to hear. I always wonder what's going on in that little heart of hers and after yesterday's cath, a lot of my anxieties are put to ease. If she looks and acts great, she's probably doing great. Thank you Lord.

This picture shows where the IVC conduit (artificial tube) will be sewn in at Fontan time. The SVC (Superior Vena Cava) is what was sewn to her pulmonary artery from the Glenn, it's her own tissue, not a tube. The branches off of the RPA and LPA go out to the lungs.

Luckily, I was able to go back with her in the first phase recovery room too and she was the feistiest kiddo in there! Her LOUD cry was hoarse (breathing tube causes that) and there was no making that girl happy. I do love this side of her though and feel that it's one factor of why she's done so well with her half-heart. She kept her swollen, puffy eyes on the nurse at all times and screamed when she came near. Poor baby... and yes, we did come home last night! Dr. Jones felt like she looked great after her 4 hours in recovery and didn't see a need for her to stay overnight in the hospital. Yay!!!

Our baby heart friend, Mia, had clinic yesterday so she and Mimi came and sat with us in our recovery room after their appointments. Man, I just love them!!! Mia looks so great and is the smiliest baby I've ever been around. Mimi is hilarious and like her daughter, can brighten anyones day. Time really flew by for us once they arrived.

Since we were starving and Maddie was geared up for her fav mac & cheese, we went out to dinner before our 3 hour drive back home. Mimi and Mia joined us as well and Susie and Teagan too(they were in town for an appt. today). It was a fabulous way to end a long but very happy day :)

Thanks for all of your prayers and kind words. Maddie is sure a blessed little girl!

Here's a short video that explains what a heart catheterization is: Click here to watch.

We're home :) More on Maddie's cath report tomorrow...she's doing great and her sats are up already. She's a trooper!!!

Cath tomorrow

Maddie's cath is scheduled for first case tomorrow morning. We're to report to surgery by 7:15 am, feeds will be cut off at midnight and luckily, she can have clear fluids until 4 am so we're crossing our fingers this goes smoothly!!! It's planned as just a "maintenance" sort of thing to check her pulmonary arteries, Glenn site, etc... and to see why she prefers satting in the 70's. She's doing great, is healthy and should get through this with ease. Please say an extra prayer for little miss tonight...

trece meses!

13 months!

Our bathing beauty in her second bath of the day. She absolutely loves being outside and in the dirt pile with her brothers...it's a good thing she lives on a farm. As with all of my babes, the lawn mower has been a big hit and Maddie is no exception to this. She's picking up new words everyday and uses much intonation when she speaks. It's so cute. Her latest words are: "giocle, giocle" (tickle, tickle), "otie" (doggy), she moo's which is "mmmm", she quickly says "huh" (uh-huh) even when the question being asked isn't finished, and she's now starting to use yes and no head shakes in context (especially when she's finished eating...that one is definitely a NO head shake 100% of the time). She's not a great performer "on-demand", it's all on Maddie's terms. She's a really cute bobble head when she hears music and loves to imitate our actions and noises. The best is her Purell hand sanitizing impression...it's very vigorous and serious business! Her last Synagis shot was this month (yippee!) and she hit 19 lbs. 13 oz. on the scale that day! Pretty impressive when exactly a year ago, she weighed 6 lbs. 13 oz.! And for my current favorite expression of hers: the scrunchy face/snorty nose sound...pretty cute, huh!?!