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!

cancelled cath

Maddie's heart cath was scheduled for this Friday but unfortunately, we've had to cancel it due to her having a little head cold. I know...sounds crazy. Our life has become so normal with her but in preparing for her 7th heart cath, we knew keeping her healthy was a priority. Easy to say, hard to do. I teach preschool, I have lectured those mother's enough and they are all very respectful of the "well-child policy" so we tried there. We tried limiting her going into grocery stores, public places, etc. but she still came down with a stinking cold. It's frustrating and times like these remind me that I am raising a child with a chronic illness. Her heart will never be fixed. Catching a simple cold then having a heart cath is not good- her risk for infection increases and the policy is to cancel. I'm grateful they always have Maddie in mind, her medical team is amazing.

As of now, her cath is rescheduled for Dec. 11th. Dr. Johnston is calling it an interventional cath as he's hoping to close her fenestration (hole created in her heart used as a pop-off for blood flow), as well as looking for & taking care of any collateral vessels as well as making sure her pulmonary arteries are wide-opened and growing well. After her Fontan, we knew she'd need to go back to the cath lab...just the timing was the question. After three open-heart surgeries and six heart catheterizations, we should be pros at this but it doesn't get easier. She knows she has to go back and when we've talked about it, she's anxious and tears up. I swear the older she gets, the harder this is.

She needs to have a good 2-3 week window of health- being clear of any illness. It feels impossible. We have four children, two of which attend public school. I teach 11 other children two days of week, preschool in our home. She takes ballet once a week. We spend lots of time with family and cousins. Can we just put her in a bubble and carry on with life? Bryan and I differ on how much we want to expose her...wished this was easier at times. What a balance it is between having her experience a normal life but compromising her health in achieving that goal. Prayers for keeping Miss Maddie healthy are always appreciated. Just want to get this cath over with. 28 days to go.

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.

Build-A-Bear Workshop supports CHD!

Today kicks off CHD Awareness Week Feb. 7-14th! I'm hoping to post something relevant to CHD (Congenital Heart Defects) each day this week like I have in the past. Click here or here read those posts.

The night before Maddie's cath, we went to Build-A-Bear Workshop, thinking this would be a fun activity for her and creating something she could hold and cuddle in pre-op and during recovery would help ease the whole cath experience. I felt compelled, because this month only, Build-A-Bear is asking for a $1.00 donation at check-out to support Children's Heart Foundation! This is the largest foundation raising money towards CHD research. Maddie hadn't had a build-a-bear experience and we couldn't pass it up.

It seems that we are always being asked "would you like to donate towards_______?" at checkout lines, having to press Yes or No on the keypad. I've never been asked to support research for CHD...usually it's cancer or premature babies. But CHD is getting some awareness now and at a place created for children no less! $1.00 may not seem like much, but it's something and when your child's future depends on critical, life-saving research, every penny counts. I was thrilled to see CHD getting some attention...afterall, Congenital heart defects are the #1 birth defect. Nearly 1 in 100 babies is born with a CHD in the US.

So in "true Maddie fashion", she created a very cute teddy bear covered in hearts, with an added thumping heartbeat and pink, glittery, frilly dress. She named it "Tee-Dee" and was in heaven during her bear building experience! I highly recommend it :)
making a wish for her bear getting Tee-Dee all washed up!
helping create Tee-Dee's birth certificate
hugging Tee-Dee in pre-op before her cath last Friday

Go here to check it out! Thank you Build-A-Bear for helping spread awareness of little broken hearts!

a great pre-fontan cath!

Waiting in pre-op for a 1:45 minutes...she was a very good girl. Once in a while, her tummy would growl and she'd ask, "what's that?" She's never remembered being hungry since I'm always trying to get calories in her!
Maddie sporting the hospital gown, she liked Tweety Bird she told me but not the gown. Her first tears came when we told her she had to wear it. I think she realized what was happening at this point but was happy and cheerful prior to this and through all of the exam, measurements and nurses/docs questions & consent forms! And once she had the versed, our babe relaxed and smiles just covered this sweet face.

Munching away on snacks in post-op. Dora the Explorer saved us here. She enjoyed watching Dora while having her post-op echo, eating jello, graham crackers, a popcicle and fishy crackers as well as two cups of apple juice. She was starving! Not eating after dessert the night before and no drinks after 6 am poses a bit of a challenge for a 2 year old! And for you heart mom's...watered down Country Time Lemonade can pose a problem as a "clear" fluid. Note to self: stick to the list of drinks your child can have pre-op!

We're waiting in recovery right now, one more hour to go before they'll let us drive home. Maddie's cath went really well: no tune-ups necessary, low pressures (which is what we wanted to learn) and it looks like she's ready for the Fontan. We'll know for sure after Dr.Chun presents her and discusses this with her surgeon.

We were pleased with Dr. Johnston's report--her PA's have remained opened and look good! She has a collateral that could have used a coil but because of its location, he decided not to risk putting one in. (It's from her SVC to her IVC, called an AVM vessel?) With the change in circulation after her Fontan, it shouldn't receive blood flow and won't pose a problem down the road without getting blood flow to it. He was able to access the catheter through her right groin and her neck. Two more teeny scars to add to her existing ones.

We had a good day- she was able to get Versed before going back (although I spilt half of it giving it to her) and I was able to go back with her when she was put under. She chose "strawberry" gas and kept giggling as the nurse was covering her mouth with the mask. After the cath, she was a bit unruly in recovery so I was paged to go back with her. The entire procedure took just under 2 hours. We had our favorite anesthesiologist, Dr. Eisses, and we got to see our favorite echo sonographer, Ray!- we had a great visit with her and she was able to get wonderful pictures of Maddie's heart. Plus Dr. Chun came by to see us and discuss the results. He mentioned that her PA's look great--almost as if they've been untouched! Seems like we're all at ease and on the same page of when the timing is best for her Fontan. We do feel fortunate to have such a great team here at Children's and so many love our Maddie in this place. Thank you for your prayers today and checking in on Miss Mooms!

upcoming cath

In two weeks, we'll be heading back over to Seattle for Maddie's 'pre-fontan' heart catheterization. This will be the 6th time she's had to undergo this type of procedure, hopefully this cath's purpose will be more investigative rather than interventional. Doctors will be checking her heart's pressures, the valves, chambers, and getting an overall look at her heart's function to determine whether she's ready for the last surgery, the Fontan. If she needs a tune-up while they're in there, they'll intervene. She's currently weighing in at 31 lbs. which is around 14 kilos...the goal for surgery is 15 kilos, so we're getting close. When I talked to the nurse the other day after Maddie got into her baby asprin bottle (all was ok though) she mentioned that the team of cardiologists & surgeons will meet on her case the following Monday after the cath. Together, these 26 doctors will come up with a plan on Maddie's surgery and then we'll get the call to schedule it. We're told that we'll get a say in this one, which is much different than her past two surgeries, they were both rushed and necessary right then. This makes going into the Fontan much different for us. We've never really had a choice on when is the best time for Maddie and for our family.

Are we ready? In some ways, yes--getting passed this last big hurdle will be nice. It will feel like we can get on with life. Our daughter won't be so blue and out of breath all of the time. Her oxygen saturations will hopefully be in the 90's versus the 70's that they're in now. I'm anxious to see the "new Maddie" after her Fontan. She will be healthy going into surgery, which is a big plus. But in other ways, how do you prepare to have your child cut on again? It's open heart surgery, she'll be on heart-lung bypass, she'll have a stay in the CICU (Cardiac Intensive Care Unit), she'll be on a ventilator, she'll have many life-saving drugs pumped into her little body, and there will be several tubes and wires. It's simply...scary.

But I do believe that the good this surgery can bring far out-weighs the risks and fears it brings. If all goes as we plan, Maddie will have the chance to grow up feeling well, not huffing, puffing and coughing like she does now. Not having to climb into my lap several times a day, remarking "I tidered, hode me". She will run more, play more, jump more, climb the stairs more throughout the day, instead of wanting to be carried around and held. She will gain more independence and growth after this final surgery. Hopefully, she's young enough that she won't remember it later. This is what I will focus on. And that the Fontan will finally be behind us.

Somebody's happy to be home!

We got home yesterday afternoon and little miss couldn't be more chipper! I'm amazed at what a balloon dialation can do for those pulmonaries! On the drive home, she sang from Cle Elum until we pulled into our driveway. I'd say she's recovering quite well from her catheterization since she's climbing on everything, playing with her baby, and staying busy emptying drawers. She must be feeling a little behind from being gone :) And so does her mom! Gotta get to packing...we're hoping to move into our new home the end of the month!!!

cath lab pictures

narrowing of left and right pulmonary arteries

this shows the balloon being inflated in one of the pa's...the tissue is stubborn in the middle of the artery, still wanting to clamp down

this shows the 4 metal coils that were put in her last year's cath to coil off the collateral vessels, they'll stay in there forever

after the balloon valvuoplasty...improved width of the pulmonary arteries.

cath result news

Maddie's cath went really well and it's always refreshing to hear that the docs were PLEASED with how it went. Not only did she have Dr. Johnston's expertise, Dr. Chun, Dr. Jones (who came by later) and Dr. McMullan were all in on the effort. She was out and into recovery by 5:30 and we were finally able to see her an hour later. Dr. Johnston was able to insert and dilate a balloon thru the cath at the narrowed sites on both her right and left pulmonary arteries. The bottle necked areas with the stenosis (result from scar tissue) were 1/3 of the size compared to the rest of her pulmonary artery (4 mm at the narrowing and 12 mm throughout the rest of the PA). He didn't see the need to place stents since the ballooning seemed sufficient for now and she responded to it. She's currently satting 78% which is high for our girl. Sure beats the low 70's she's been favoring lately :) The area that is narrowed is on both sides of her SVC where the pulmonaries go out to the left and right lung so placing stents in there would only complicate her next surgery. The left PA was worse because her aorta lies right at that spot so we'll see how long it stays widened. As far as the collaterals go, she didn't have any large/damaging enough to coil off. Dr. Johnston's thought was her increased cynosis is a result of the narrowed PA's and a pressure build up into the SVC...not so much from the collateral vessels. The four coils that Dr. Jones put in at last year's cath seem to have stopped any further growth of those vessels. He also measured pressures while in there and was happy with those numbers. We're on the 4th floor now and she's being monitored. If she keeps this smooth recovery up, we should be on our way home tomorrow.

Our little trooper devoured the apple juice, chocolate pudding and bites of my dinner and handled it fine. Yay for no pukes. She was hoarse from the breathing tube, a bit cranky and irritable this evening...totally understandable. Her puncture site at her neck bled quite a bit but other than that, she's been pretty good. She is now sleeping and content in her hospital crib...but will be interrupted soon for a chest x-ray and labs. It's true that you never get any rest in a hospital.

Thanks for your love and prayers today! Here's a couple of pics from our day...

Miss Mooms before being called back to the surgery center...she was trying to find something to eat in her backpack. She was s-t-a-r-v-i-n-g and kept reminding us she wanted to EAT. She hadn't had anything to drink since 8 am and nothing to eat since dinner the night before. Poor thing...so much for her maintaining 12.2 kilos (that's 27 lbs) Smiley girl after Versed and before surgery. This is McDreamy, oh, I mean her daddy and my McDreamy...hey, the real McDreamy (Patrick Dempsey aka Dr. Shephard) was here at Children's yesterday!
Recovering in our room on Giraffe 4th Floor

update on cath

I finally had a moment to run to the family resource center to update on one of their computers! We had a long afternoon of waiting...arrived at the hospital at 11:30 and Maddie was finally taken back to the cath lab at 2:30. She had some "silly juice" (Versed) about 20 minutes before going back and she was a silly, happy girl. Everything we said or did made her giggle. We had lots of smiles and lovin' before she went back and boy did this ease the stress of it all! She'll have amnesia as well :) I love Versed. Bryan went back with her with the nurses and said she did great before he had to leave.

Jesse and Luke came to visit us and it was so great seeing them. Sorry you had to wait on us Jesse! Luke is one of Maddie's heart buddies and is such a little cutie. Sharp as a tack too! Dr. McMullan also stopped by while we were waiting in the surgery center pre-op area and visited for a while. He's always fun to chat with and it's interesting for us to pick his brain on Maddie's heart.

Dr. Johnston is performing her cath, we thought it was going to be Dr. Jones, but he's on his day off. Johnston's done a procedure in the cath lab with her before (post surgery when she was a week old) and I was feeling better about it after getting to visit with him prior to her procedure. Anyway, the "plan" is to take a look around in her heart, measure pressures, possibly coil off any collaterals that he can get to, as well as a possible ballooning or stenting in her pulmonary arteries. This is all done through a catheter (wire like instrument) that is inserted through sites at her groin and neck. He won't know for sure until he's in there on what will be done. It should take 2-3 hours and will be paged when she's coming out. We've been told to be prepared to stay tonight and hopefully if all goes well, we should get to come home tomorrow. Thanks for your prayers and concerns. Maddie is one loved little girl. I'll try to update later on how it all goes.

cath tomorrow

I always find it difficult to focus the night before a trip to Children's. I never know how much to pack, how long we'll be gone, if everything is left in order and whether I've covered everything. Along with these thoughts are the "what if's" and worries about how it will go. This is Maddie's 4th cardiac catheterization, which should make her a pro at it by now. But I still feel like a rookie.

After dinner tonight, we enjoyed a fun family game of baseball, swinging on the swingset, dessert, and some snuggle time. It made me sad that our little girl has no idea about her surgery tomorrow, she was so playful and happy. It's kind of cruel. She won't be feeling so hot after her procedure but I have faith she'll do just fine...please say a little prayer for Maddie and for her medical team tomorrow. Thank you!!!

My fingers run along the line...
Upon my child's chest...
I ask her then..."Who loves you"?
Why mommy...loves you best.
"Do you know you're brave and strong?
And hope shines in your eyes"..
Do you know each day with you...
Is like a new sunrise?
I wonder if you understand...
Just how you've changed my heart..
My prayer to God will always be...
"Don't ever let us ever part".
Do you know...sweet girl of mine...
How very loved you are?
I could search for all my life...
But I need not look far.
For beauty rests within my midst...
In the heart of one small girl...
You've overcome so very much...
And live each day with joy.
Who loves you most I ask again...
A whisper in her ear....
Life has few sweet moments when things seem so very clear.
Why mommy loves you silly girl... She thinks you are the best...
You laugh at me in answer... I know that I am blessed.

~Stephanie Husted, Heart mom to Braeden

visiting friends & bump up on cath

Because Lil' Miss is looking this purply-blue all of the time now, and her sats are a stinkin' 68-70, her heart catheterization is being bumped up. It is just 2 weeks away now instead of waiting another month. I am sooo glad...she really is needing the help. Her days consist of 2-3 naps now, laying on the floor to rest more than playing and constant chilly hands and feet. Even on warm days. It's not fun watching her go down this road and I'll look forward to seeing more of a pink girl after this cath. Her heart just needs the help. The only perk of her being like this is she loves to be in my lap. She climbs up, catches her breath & rests, then off to play until she quickly tires out again and lays on the floor or climbs back into my lap. I love all of the cuddle time we're getting but it's also a reminder that she's not a "typical, on-the-go" 2 year old.

In other news, the kids and I drove down to Tri-Cities yesterday for house errands. Yes, we're getting closer...hopefully we'll be moving into our new home the end of May/first part of June. We'll see though :) We can't go down to the Tri-Cities without stopping and seeing our good friends, the Maxwells. It was so fun seeing them and meeting their latest addition, Bode. He's a cutie. Maddie and Teagan were very cute together but getting a good picture of the two of them was tough. They were too busy for a photo op and Susie and I were too busy chatting to get a good picture.

Cath date

Got the call from scheduling today...looks like we're waiting until June 3rd for her cath procedure. Dr. Jones is one busy guy and we're willing to wait for him :) Just hope Maddie picks up some energy and an appetite before then. She's just not herself. We'll see what comes of it.

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...

Daniel

I got a very sad phone call that Daniel, a heart buddy, will be withdrawn from life-support this evening. I've mentioned Daniel in a few other posts...he's 2 days older than Maddie, has HLHS and they shared an ICU room their first week of life as well as after their first surgeries. They don't have a blog or carepage so we've kept in touch a little through email and when we've been over in Seattle for appointments. He had a heart transplant about a month ago and had a difficult time, he'd been on ECMO, came off of it, and he was just starting to rally. I visited with Leah (Joshua's mom) this afternoon and she said that Daniel and his parents had a great day together yesterday. Unfortunately, he coded this morning and too much damage was done, so he is on ECMO again until all of the family arrives to say their goodbyes. Please pray for his parents, Heather and Mark. Daniel never left the hospital due to his broken heart, but he will finally be HOME now... God bless you sweet boy, we won't ever forget you.

HEART CATH CANCELLED
Also, Maddie's cath has been cancelled...it was supposed to be tomorrow morning at 7:15 but she was warm and cranky after lunch time so I took her temp and low and behold, she's funning a fever of 102! Came on quick. So, it's now rescheduled for April 22nd. Her fever has come down with Tylenol but she's just not herself. It's best to wait and get everyone healthy before her procedure...we're sick of being sick around here! But it's nothing in comparison to what others are going through- our hearts go out to those families.

doctor's appointments=tears

Maddie with our nurse Amanda from Dr. Allred's office. She's always in tears around Amanda which about puts poor Amanda in tears too! She's been our nurse for all 3 kids since birth; every shot, temperature, and measurement has been taken by her. She's the sweetest!

We've spent a lot of time in doctors offices this week with a fussy girl. It's Maddie's least favorite place to be. Tuesday was Maddie's nephrology appointment in Seattle to follow-up on her kidney issues. She had a renal ultrasound and visit with Dr. Jackson and Dr. Hingorani, and thanks to a glitch in scheduling our "big plans" to shop didn't work out due to spending most of our day at Children's. Kidney wise, her left one showed some growth and is now in the range of being "somewhat" normal, which was great news. On ultrasound, they can't really tell the function but due to that it grew, they think it must be working. She is still being treated for reflux with the Bacterim and they don't have any plans of taking her off of that until she's at least 2 years old due to the risk of infection from UTI's and being a cardiac kid. It was a big relief to know that her kidney's look good and the ureters have improved on ultrasound. Yeah!!! She was in tears throughout the entire ultrasound but flirted with Dr. Jackson at the end of the appointment, after she realized there was no "hurt" involved, it was cute.

For the past month, her cardiologist and I have been in touch regarding Maddie's sats. They have been on the low end, consistently hanging anywhere between 76-82. Her sats have never been very high, even after her Glenn, so Maddie has a maintenance heart catheterization coming up in 2 weeks. If you're not familiar with what a cath is, you can read about it here. Dr. Vernon wants to rule out whether she needs a little "tune-up" with ballooning or a possible stent if there is narrowing or scarring from her surgeries. Maddie's pulmonary arteries have always been small and narrow, so they may need tweeking to get those sats up and more blood flow through them. We need them to grow! Of course I don't want to have her go through this, there is always risk with a cath and she'll have to be put under and intubated. She's doing so well and I don't want anything to jeopardize this! But it will be nice to see what's going on in that heart of hers since this is the most accurate way of diagnosis. We may learn that everything is just fine and her sats are just going to hang on the lower end. So, that's where we're at with her heart.

Last but not least, Maddie ran a fever all day yesterday. She also had to go in for her Synagis shots to Dr. Allred's. To rule out whether this was a UTI or not, she also ended up having her bladder cathed to get a good urine sample. It went smooth, came back fine, and she received her 2 shots, which btw, totals $3984.30 a month on our insurance EOB's!!! We get to pay $864.48 of that...yikes, we'll meet our deductible early this year due to those costly shots! (Had to share the real price since back in a December post I estimated the cost). It has kept her healthy from RSV though...especially since so many little ones in our town have had it this winter! The boys were with us as well and Cade also got some attention from Dr. Allred since he's had such a bad cough and refuses to eat lately. Of course, it's a viral thing so we're riding out all of the bugs we've acquired lately and hoping Maddie can beat this too before her heart cath procedure in 2 weeks. So two days in the doctor's offices at 3 hours each was enough for Miss Maddie and the rest of us! She knows what is up now and just cries from the minute we get there... she's still running a fever, is not herself and only wants held, so I had time to post, and one-handed at that!

Cath=Glenn surgery time

Maddie's cath went REALLY WELL this morning. I did a lot of worrying and borrowing trouble for nothing! We gave her to the surgical nurses at 7:45 and were paged at 9:00, so it didn't last long. Dr. Jones came in to talk to us shortly after and was smiling as he came through our door (always a good sign.) His first words were "Well, she did just fine," what a relief. From her cath, it was concluded that she needs surgery, the Glenn, which is the next phase in the 3-stage surgeries. Her pulmonary artery looks small in one part, the middle where it's attached to the shunt but the ends that go out to the body look normal. That was such good news to hear. Her shunt also looked very good so no ballooning was needed there either. Basically it was just an "investigative" cath, taking pictures in order to make preparations for her Glenn surgery. Now we're waiting to hear when she'll be scheduled. We're told it could be this week or in a couple weeks...she's not urgent, and Dr. Jones did say waiting a month or more isn't going to present any new changes or help. She's not going to gain that much more weight in that amount of time, so she's ready for the Glenn anytime. His last words to us were the best..."this is what I'd hoped for in Madison's case." What a beautiful phrase to hear, brought us much HOPE. God is good. Again, He's shown us His love, mercy and grace with our little Maddie. Here's the pictures we were given of Maddie's cath this morning:

This is the pulmonary artery (long tube running horizontal) and the narrowing is just in the middle where it connects with her shunt (skinny tube running vertical.) The sides of the pulmonary artery are larger (kind of looks like an ant) which are good and of normal range. The skinny loopy things are the catheter wires strung up through her heart.

A quick sketch of the Bi-Directional Glenn that Maddie will have next, hooking the superior vena cava to the pulmonary artery.

Maddie's right ventricle. It's very small in comparison to the left. In a normal heart, these are relatively the same size or are in proportion to each other.

Her left ventricle- enlarged since it has to compensate for her right side not functioning.


Since starting this post, Maddie arrived. She looks great and is ready to eat since she was cut off of feeds since midnight. Her little voice is hoarse from being intubated and she's coughing some but other than that, she looks beautiful! Back to her cute self I'd say!!!

Pre-Cath Day

Maddie loved the balloon and giraffe stuffed toy she received today from her heart buddy Teagan and her sweet family...very fitting since we're on the giraffe floor!

Sucking her thumb...a new favorite!

Feet are so fun to kick!

Cords keep me preoccupied too!

Maddie had an echo this morning and consent forms have been signed for tomorrow's cath procedure. She's the first case, 7:30 am with our fave, Dr. Jones. Anesthesia team will be in to take her around 7 am. She's had a pretty good day, just not too energetic about feeding orally. I've been having to gavage more through her NG tube than she can take orally, which is a disappointment after having months of good feeding. This has slowly been coming on, just proves that she needs some "fixing" in order to eat well again. Apparently with oxygen deprived babies, they give up some of the easiest things first, for Maddie, this is her feeding. Also, when you lack oxygen, you feel really crummy, so eating is the last thing you feel like doing. She's also been working a lot harder (her breathing)and I see more signs of her being uncomfortable and irritable, but do you blame her? Being in a hospital with a nose tube, cannula, 3 chest leads and a pulse oximeter attached is not so fun. I'm relieved we're here in the hospital though and just hope that we timed this about right...staying at home any longer may have presented a very scary experience. She's been weaned down to .5 liters of oxygen and they just want to leave her at that to keep her comfortable. She's been a real trooper, still smiling now and then and she's been kicking up a storm, which is so cute.

The plan for tomorrow's cath is to see whether they can buy her some more time before the Glenn by ballooning or stenting her shunt or pulmonary artery open. From the echo, it appears that the pulmonary artery they attach for the Glenn looks like it's on the small side. The doctors' words were "we're disappointed it didn't grow more". Since arriving at Children's on Saturday night, we've also learned that she has collateral arteries which could have attributed to this problem. The problem with collaterals as I understand it, is they steal the blood supply that should go to the pulmonary artery. It was Maddie's natural way in utero to help compensate for her closed pulmonary valve: the blood created its own way to try to get to the lungs. Complicated to understand, but to sum it up, the ones Maddie has are not good to have. So if her pulmonary artery looks like it's adequate size for the Glenn, I believe they'll just go ahead and do the surgery soon. So in the cath, they'll be able to get a close look at what her shunt looks like, get better pictures of her pulmonary artery as well as measure the pressures in the heart. We'll know after her cath what the plan is. So they'll have to make a "game time decision" tomorrow during the cath. On a lighter note, she had a good weight gain since being admitted...up to 5.41 kilos (12 lbs.) so she's hit the minimum although I've been told the bigger, the better for the surgery. We spent lots of time playing today...she loves grabbing anything now and tries to mouth it.

After hearing today's news from her echo, I'm stressed. Hearing that her pulmonary artery may be too small is scary. When I look at Maddie and reflect on what a great 4months she's had, I'm in disbelief of her complex heart. But when the doctors talk to us about it, reality hits. Of course they LOVE talking about the complexity of these babies hearts, it intrigues them, drives them, it's their passion. But it's my baby that has this problem. I've learned that her journey is only getting more difficult for me as she gets older. She is such a beautiful little soul and I can't imagine life without her in it. When they have you sign consent forms, they rattle off all of the risks: stroke, bleeding, blood clots, death, after that word, I just hear "blah, blah, blah." It's tough to hear when we don't have any options for our daughter. Again, I find myself in a dichotomy: I want my daughter to live yet in order for her to do that, she has to endure pain and suffering which I don't want to inflict on her. So I pray tonight that I will feel His presence more and I'll be able to renew my faith in the Lord's plan for Maddie. Again, I have to hand her over.

Please pray for a safe and successful cath for her tomorrow and that the doctors will be able to make the best decisions for our daughter's heart's future. Pray that Maddie will do wonderful through her cath procedure and will be able to come off of the ventilator right away. And please pray that we will have the strength to endure the day and what it will bring.