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.

Cardiology Appt.

Today Maddie and I drove over to Seattle for her cardiology appointment with Dr. Chun. After a chest x-ray, heel poke for labs, an EKG and visit with Dr. Chun, the consensus for her appointment was GREAT! After a little OD on Captropril last week (yes, the pharmacy had changed its recipe and was mixing it at a 5x higher suspension rate) I was a bit worried about my girl. As her mother, I felt HORRIBLE for giving her the wrong dosage but was totally unaware of it until the bottle ran out quicker than expected. I beat up on myself pretty hard and was so pissed about the pharmacy's part in this mistake!!! I had not been "prepped" by them prior to giving her the medicine and had no idea how they compounded it! Note to self: always ask them to give you a rundown on the perscription before giving it! Anyways, to put it simply, Maddie tolerates a lot. The only "signs" she had was little interest in eating (which is her norm more and more these days), funny looking poop, and she was sleepier than usual. Duh...her blood vessels were extremely dilated and lazy from too much Captropril! So she's now off of the Captropril, she's satting at 85% and seems to be feeling much more like herself. Her labs came back a bit high in potassium but Chun wasn't too concerned about those numbers. Everything else checked out great...she weighed in at 14 lbs 3 oz and is 25.7 inches in length. We also aren't due back for another cardiology appointment until the end of November! AHHH!?! I don't think I can make it that long but this is awesome news Maddie doesn't have to be seen until then. Dr. Chun has confidence in how she looks and overall, how she's doing. Even though I'm nervous not having a monthly checkup, it is a big sigh of relief and reassures that everything is going great in that little heart of hers!

Maddie with Dr. Chun, he's the best to visit with...he always answers all of my questions and I have learned so much through his explanations, he's a great teacher and is the nicest doctor!

The highlight of the day was going to see Teagan and Susie. Teags has had a rough couple of weeks after her Glenn surgery. Teagan is truly her "heart sister". Like I've said before, their hearts complete each other to make 1 healthy one. Although these two 1/2 hearts are pretty tough and hold their own quite well!!! Teagan is just a doll, and it was so nice to see them again. We check on her daily through their blog and Susie and I visit on the phone just about as much. We had a fun time as "visitors" on the floor this time. Different being on the other side, even had to get a visitors pass! We're looking forward to when they are home and rested so we can get together for a nice day with our "bestest" (as Jace and Cade would say) heart friends!!!



We couldn't help but stop by the CICU on our way out. We delivered some freshly picked apples (after many offers and promises made from our prior stays) and we got to see Joanna, one of our favorite nurses! We hadn't seen her since March so she was so excited to see Maddie "all grown up" now! We also picked up the empty "Maddie blankets" basket so we can make up another round of blankets and burp cloths for the ICU. Dr. Baden strolled by just in time and was able to take the box of apples...he's given us such a bad time about being farmers that I wanted him to have the "fruits of our labor" (literally)!!! I think he's now impressed about what "farmers" actually do. He's a good guy and is always fun to joke around with. So all in all, it was a super day for just Maddie and mommy!

Appointment Update

Maddie's cardiology appointment was awesome yesterday! Her echo looked good (she was "too busy" to lay still but Ray has some skills getting those pictures she needs!) and her sats were 81, which means they're coming up! As Dr. Chun put it, the Glenn is doing what it's supposed to!!! He was very pleased with how pink Maddie looked as well as how big she's getting, up to 13 lbs. 9 oz. and 25 inches in length. What was new "news" for me yesterday was she no longer has a murmur...I never realized this but after the Glenn and Fontan repairs, she shouldn't have a murmur. Her murmur after birth and after her B-T shunt was so loud from all of the turbulence of blood flow, it was hard telling what was going on in that little heart of hers! Maddie's Lasix med was dropped altogether, so one last med to give! So now she's down to Captopril 3x a day, Bactrim 1x a day, Prevacid 1x a day and Asprin 1x a day. Not too bad! We'll go back in a month for a follow-up.

After her cardiology appt. in Bellevue, my mom, Maddie, and I rushed over to the main campus in Seattle for her VCUG, an x-ray of her bladder and urethra. (Bryan was unable to go since he's getting ready for apple harvest to start.) This test was ordered to rule out whether Maddie has reflux of her kidneys or not since in all of her renal ultrasounds, bright spots have been detected in one of her kidneys. It wasn't a very pleasant test so we were using lots of "tactics" to get her to be calm. While she was lying on the x-ray table, I was standing over her and made a motor noise then my mom did as well. Maddie quit fussing, studied our faces then started making the "bbbbbbbrrrr" noise herself! It was the cutest thing...and she hasn't stopped since! She loves her new trick. So the test concluded that she does have reflux, "mild-moderate". They rate it from 1-5, 5 being severe and Maddie's is a 3. Only her right kidney showed the reflux, immediately after the dye filled her bladder. She's on the Bactrim for this (a prophylactic antibiotic) to help prevent any UTI or kidney infections...so far it's worked, she hasn't had any yet. I'm waiting to hear what the official report says but I'm sure she'll stay on that antibiotic until a further study shows whether it has "fixed" itself. Most of the time it goes away on its own and settles itself I've been told. We're hoping this is the case for Maddie.

The delivery to the ICU went great! It was so fun to drop off the basket of blankets. Maree came out to get them and was very appreciative...they'll be used to make the babies' beds then the mama's can have the blankets after. I'm so excited about it and know it will bring a little happiness to some hard times for families. While there, I got to see Dr. Baden as well. It's always fun to chat with him. Of course they're super excited about Maddie and her great recovery...our cute little rockstar!

Maddie with Ray (our favorite sonographer)after her Glenn in July.

She's off sternal percautions so it's time for the Bumbo chair & tummy time!

Hanging out with me in the kitchen this morning and having lots of fun in her pink, princess walker! Her feet just dangle but she does play with the little toys at least. Boy do her brothers love to "gently" push her around!

5 months old!

Happy 5 Months Maddie! Poor girl, for her birthday today, she had her 4 month immunizations, 5 of them in 3 pokes. Piece of cake for her...compared to what she's been through. She handled it like a champ, just crying a little. Her weight...get ready, she's 13 lbs 1 1/2 oz!!! She hasn't had much of an appetite lately and I've been trying new strategies with her feeds, so I was so nervous if she'd gained at all. She's now up to the 25th percentile for her height and weight! She's come a long way on the weight...from the 5th% at birth- she's more than doubled her weight!!! After Dr. Allred (Maddie's great uncle Lowell) listened to her, he said "her heart almost sounds normal!" The sound of her heart has "quieted" down a lot since the Glenn...not so much turbulance in there! Developmentally, she seems on track. She hasn't rolled over yet but is so close, kicking her leg over but hasn't figured out the rest yet. Her giggle is so cute and she constantly brings smiles to all of our faces. Loves holding her toys, her dress, mom's finger, whatever she can bite down and drool on. The little boys adore and gush over her every chance they get...it's a little bit of a competition between them. Our Maddie is back and is feeling so much better. She's got a lot more energy lately and seems so happy and content, 99% of the time!

These past months have really flown by and I've caught myself dreaming more about what Maddie's future holds for her. I used to not let myself even go there, it was too difficult to think about the "what if's" and uncertainties of the surgeries and procedures she had to go through in order to get here. She's doing so well that it feels good to talk about our future and all that we have to look forward to! A huge weight has been lifted now that she's 2/3 of the way there with her heart repair and since the next surgery won't be for a while (we cross our fingers), we can get on with LIFE again. What a wonderful feeling!

I count my blessings and YOU all are part of those blessings. I know that the prayers and love sent our way has made Maddie's outcome such a great one. I hope that she realizes someday how much she was loved and prayed for. God has been so good. Thank you for your continued support!

What a Life!

Our happy girl, just 2 weeks after surgery! Life is good for Maddie Moomer!

Maddie sporting her new sunglasses (indoors of course, Lasix and sun don't mix!)

Nany was the culprit behind those cute shades...what fun shopping for little girls!

Jace lovin' on baby sis this morning. His "dee,dee,dee" talk she surely loves!

A Transformer and Spiderman to fight and protect her...what a life!

Post-Glenn Follow up

Today was Maddie's first cardiology appointment, since surgery. There were many words spoken by the doctors and nurses to describe her today...wonderful, strong, amazing, a superstar, has good genes :), healthy, pink, beautiful, bright eyed and great,great,great! What wonderful news for us to hear!!! We feel so blessed and lucky. Her x-ray looked much better this time, at almost 2 weeks post-op, her heart swelling was way down and there was no visible fluid retained anywhere. So we are dropping 1 dose of the Lasix for now...now she only gets 7 syringes of different meds a day! Her chest tube stitches were removed and her incision looks so awesome...the nurse thought this was her first surgery, not her second sternotomy! Her sats are hanging in the high 70's, we're hoping her pulmonary arteries will grow some and she'll maintain sats in the 80's until her next surgery. The EKG was good and in the weight department, she just maintained, only gaining 0.2 kilograms. Dr. Chun, our cardiologist since hospital admittance before her Glenn, wants to up her caloric intake to 28 cals and maybe she'll gain better. He said it's tough on them when they're healing up as well as trying to gain weight. I pulled her NG out last Tuesday night (she was gagging and vomiting way too much with it in) and she's been consistently taking her minimum since but not reaching her "goal" for her feeds. Obviously, this is just maintaining calories for her, not making her gain weight. Her current weight was 5.76 kilos or 12.67 lbs and height is 63 cm or 24.8 inches. I'm actually excited for the calorie jump. I'm hoping she won't have to be "force fed" with so much volume now. Her little tummy can only hold so much!!! Now let's just hope she'll tolerate the taste. The higher the calories, the thicker, richer and harder the milk is on their tummies I hear. Good thing we have the reflux med for this. So overall, it was a GREAT appointment! We are following up in 3 weeks...wow!

Since our appointment was at 9am in Seattle, we all went over yesterday afternoon. We did a little shopping for the boys at Bellevue Square and had a yummy dinner at the Cheesecake Factory. Love that place! Staying at a hotel is always so fun for Jace and Cade. It was really nice taking Maddie out, strolling around the mall and enjoying time as a family. Life is feeling much more "normal" for us again. Sure feels good!

Home!

It's shocking to think that a week ago today, right at this moment, Maddie was lying on the operating table while surgeons repaired her heart. I never would have thought we'd be home a week later.

After staying the night at the RMH on Saturday, we got up bright and early and were home by 10:30 Sunday morning. We couldn't get home faster! Maddie has been doing well, we're still trying to figure out her pain tolerance, switching between the regular Tylenol and Tylenol with codeine around the clock. The downfall with the codeine is constipation...she's been very pucky as well, more than ever before so I can only assume this is from all of the meds she's on plus the volume she's having to take with her feeds. She's always been gaggy but she's been especially so since surgery. She has started showing some energy with her bottles, she finished 2 yesterday within our 20 minute time limit! Yeah! If I work with her longer than that, she ends up burning more calories trying to finish her bottle than what she's actually taking in. Maddie has become my 3rd appendage, wanting to be held around the clock, could she be spoiled?!? Ha! I think it's well-earned! We go back to Seattle next Monday for her first follow-up cardiology appointment.

The boys have been so cute with her since being home. They love to look at her BIG OWIE. She usually gives them a token smile every time they're near, even while constantly blinking, waiting for the boom to happen! She seems at ease being home, with all of the familiar noises of her brothers.

Maddie's 3 month pictures arrived while we were gone. They were taken a few weeks ago by Lisa Dorsing, you can check out her website here. Maddie wasn't the most cooperative, but I thought they turned out pretty good! She's so intrigued with her hands right now, which Lisa totally captured in her pictures! Enjoy!

Glenn Post-Op Day 4: Discharged!

Maddie was discharged from Children's today! We're staying at the Ronald McDonald House one more night then we'll be leaving early in the morning for home. The team is always hesitant on having us go all of the way home, 3 hours from Children's the first night after being discharged, so we opted to stick close then if all is well, we'll be in Royal tomorrow!!! So we've had a relaxing afternoon at the RMH. Maddie has LOTS of meds this time. Going from only asprin before surgery to taking 6 is a big change for us. Getting used to that schedule is going to be tricky...she's taking Captopril (heart med, ace inhibitor) 3x a day, Lasix (diuretic) 2x day, Prevacid (for reflux) 1x day, Asprin (blood thinner) 1x day, Sulfamethoxazole (for kidneys prophylaxis) 1x day, Tylenol (pain med) every 4-6 hours, and she has a Hydrocortisone cream for a rash she got from the chest leads. Whew! She's off the O's (oxygen) as well, only her NG tube is left to give remainder of her feeds she can't finish by mouth. The pleural effusion quickly disappeared after her Lasix doses last night. She's on 24 cal breastmilk, 90 mls every 3 hours =
720 mls/per day.

We're all on cloud 9! We've been here for 2 weeks and are very ready for home. We feel so grateful that we were here for such a short stay, especially after surgery! Some of the families we met here at the RMH have been here for months and even years.

As always, we appreciate you checking in on our sweet baby girl. Thanks for your comments and emails, it's so uplifting and encouraging to hear from our friends and family! Feels like we keep better in touch through this blog and we're so thankful for your support.

Glenn Post-Op Day 3

Our bright, baby girl is back! A gift from her heart sister, Annabelle, from South Carolina. What a wonderful surprise! Thanks Butcher Family! Maddie's day was much better today. She seems to be "turning the corner" and we saw many glimpses of our happy girl today. After leaving ICU yesterday, Dr. Baden felt the little superstar would be fine on just Tylenol and Ibuprofen...yes, it sounded crazy to us too, but we were excited she wouldn't have to have so many drugs and Maddie always amazes us with her tolerance, so we agreed with the plan. After finding out she couldn't have the Ibuprofin because of her age and her little kidney issue, it was basically cold turkey with just a little baby Tylenol. Well, a few hours later she could not tolerate the pain and we didn't blame her. She kept getting more fussy and agitated and we had trouble getting it under control. Her respiratory rate, heart rate and blood pressure all corresponded that Maddie was in some major pain. After a couple of boluses of Morphine, then switching with Tylenol with Codeine, we got it under control. It was not a fun night! Today she had her echo and chest x-ray. They found a plural effusion around her left diaphragm (sack of fluid). So she's back on some Lasix to try to get that off. We're hoping this is what's causing her short breaths, and after this fluid leaves, she'll be able to breathe better and go off of her .3 liter of O's. We'd love to be without oxygen when going home. She's been so much happier this afternoon and evening.

Here's a quick video of Maddie jabbing away and doing her "tricks". She has gotten so good at pulling her lines off. It's cute to watch but so annoying for the nurses since the monitors start dinging! Keeps us entertained!!!

Glenn Post-Op Day 2: Floor!

Maddie's graduated to the floor! What a little superstar, her surgery was only 2 days ago, she simply amazes us. Still in some pain, now just down to Tylenol around the clock. An NG tube was placed (by me) today and now we're giving her full feeds- first by bottle then whatever she can't finish we gavage through the tube. She had an EKG today and an x-ray and echo is scheduled for tomorrow. There is talk that we'll be discharged on Saturday as long as her feeding goes well and she can tolerate the volume. She's on Captopril (heart med) and Zantac (to help with GI, reflux) for the time being...that will all be adjusted before we leave as well. Our wait for an open room on the floor paid off (the orders were written yesterday to move there), and we were lucky enough to get a single room, the exact same one we were in last week!! Love it. It was a little sad to leave our doctors and nurses in the ICU but we'll be back for one more round, the Fontan, in a few years. So we're doing great and enjoying more time holding and caring for our sweetheart. It's tough seeing her in pain, but we know it could be so much worse and we count our lucky stars. They say the headache lasts for about a week then they're good to go. Just takes some time to adjust to the new flow and pressures.

We have some friends who are here with their baby at Children's as well. They have been faced with an excruciating decision that no parent ever wants to have to make. Please pray for comfort for this dear family and their darling little baby boy. Our hearts surely go out to them.

Glenn Post-Op Day 1

As Bryan and I arrived this morning, we were told they were wanting to get her down to the floor today! AHHH! I was thinking, she just had surgery, what?!?!? But we know that Maddie likes to get things done, early! So the de-lining process began after we arrived. She had her chest tubes, pacer wires, 3 IV's, and catheter all removed before lunch time. She's off the morphine now as well, only some Tylenol with codeine for pain. She's made tons of progress and quickly too, although Maddie has been MISERABLE with pain. She is one cranky little thing, fussing off and on and her cry is one I've never heard. I don't blame her a bit, I'd be pretty mad too!!! Bryan and I have both gotten to hold her lots today (which we needed) and she seemed to enjoy that. She had another go-round of getting poked, again, for a new IV. The only one they left in was not working anymore, leaky and a swollen leg because of it. Ugh! She's a bit swollen in her face/head but not as I expected. We had a hungry girl as well- she took 90mls with no problem and then another 90 a few hours later! I'm so HAPPY she's wanting to eat. This was one of my worries since before surgery she was pretty uninterested and the NG was her source for feeding since coming to Children's. I'm hoping she can get back to eating well again before heading home. She had a follow-up renal ultrasound a week ago and we went over the results with a Nephrologist this afternoon. Maddie has 1 kidney that is not growing equally to the other one. It is something they are going to watch and she'll have a study done in a few weeks on that matter. The doctor assured us that it's nothing urgent, just something to keep their eye on. It may be reflux of her kidney or another issue. So we'll follow-up with that. She's also had some Lasix today to help her pee more. She's still in the CICU but if she continues to cruise and a bed becomes available down there, I think she'll be leaving soon. That's the run down on Maddie...here's a picture of our sad, grumpy girl. Poor thing.

Glenn Post-Op

Maddie has had a good afternoon and evening. She was extubated (breathing tube taken out) only an hour after returning from surgery. She's on about a liter of oxygen to help out. She is starting to swell, mid-line up, also a bit red/purple skin discoloration in her upper body compared to her lower body. This is normal with the Glenn. She's been in some pain, taking short breaths and whining, also a few tears and a very hoarse cry. This is a little tough for a mom to watch...she does comfort easily though and is loving her binky since she can't suck her thumb. She has 2 chest tubes that are draining nicely, 2 pacing wires in case her heart needs paced, 4IV's: an IJ in her jugular, a central line on her left hand (poor baby can't suck her thumb with her boarded hand) a peripheral line in her foot, a femoral line in her groin and a urine cath. She's lost her "brain thing"/renal probe. For drugs, she's only on Morphine and Milrinone (helps heart function), Tylenol as needed, and some maintenance fluids since she can't be fed yet. Her incision looks bigger this time but not too bad. We just left and she was much more calm and relaxed than earlier. Her uneasiness and pain is due to the increased pressure to her head- basically she has a MAJOR headache. This will be the case for the next few days until her body gets used to the new repair and the way blood flows through her upper body to the heart now. Bryan and I are pretty much exhausted, so we're heading to bed. We're comfortable knowing that Maddie is being watched very closely and is in the best hands. She is absolutely amazing...we're so, so proud.

Surgery's over!

At 10:00, we got the page that Maddie was off of bypass then 20 minutes later, surgery was done and they were closing her!!! It actually went by quickly! We just finished talking to our highly respected surgeon, Dr. McMullen, and he said that she did well. They never actually had to stop her heart on bypass, just put her on it for support for blood flow to the lungs while they clamped off the right lung to do the repair. He mentioned that her pulmonary arteries are on the small side but so is her age. He was able to attach the superior vena cava to the pulmonary artery, tweaking it a bit to enlarge the area since her superior vena cava was larger. He said it should grow some over time. In a bit, we'll get to go back and see her. Dr. McMullen said he wouldn't be surprised if it takes her a bit longer to recovery from this than most kids because she's younger and those arteries were a bit small, had a little more "trauma" being sewn to the SVC. THANK YOU for all of your prayers...our day went fairly smooth and was low-key. We were definetely being lifted up in prayer today!!! The news of our baby girl being done with her Glenn is the best news I've heard so far in this journey. She is truly a little miracle and I admire her strength so. What a blessing our Maddie is. Please continue to keep her in your prayers for a smooth post-op recovery. Things can get bumpy...actually we expect some bumps, it's just par for the course but we have faith that Maddie will pull through it. Again, we are so grateful for your friendship, love and support through this. I'll plan to update later.

Surgery update

After being bumped up to 1st case this morning, Maddie left our arms into the Anthesiologist's at 7:30. We received our first page at 9 am that they were beginning the actual surgery. It takes a while for them to be put under anesthisa, on the ventilator, etc. Also it's quite a process getting through the sternum once a child has had open heart surgery before because of the scar tissue. Our second page was at 10:15 that Maddie was on bypass. In order for them to cut on the heart and stop blood flow to the lungs, bypass is necessary. This is her first time being on it, for the BT shunt, she didn't have to. Bryan and I are doing good- we felt a lot of comfort and were calm when handing her over this morning- no tears either! (I'd already taken care of that!) As I was sitting down to type this, our pastor came walking up! What a surprise to have him drive from Moses Lake to Seattle for this! We are truly blessed with such wonderful support and people rooting for Maddie. Thanks to you all for praying, please continue!!!!

Bumped up

The surgical OR nurse just called and the case before Maddie's had to cancel so we've been bumped up to 6 am, surgery at 7:30 am. Wow...hospitals. Apparently they didn't get this news until after 10pm tonight then just got around to calling us. So...here we go! The nurse explained that this was like winning the "lottery"- being bumped up! Maddie's feelin' lucky!!! So now she should be coming out of surgery about the time we originally thought she'd go in. Better get back to bed!

Tomorrow's Details

We were called this afternoon with details on Maddie's surgery tomorrow. We're to be at the reception desk at 11:00 am and her surgery is scheduled for 12:15. Our parents are both here and will spend the day with us and help out with the little boys. Dr. McMullen, her surgeon, mentioned that the surgery itself takes about 3 hours but with all of the other prep, anesthesia, bypass machine, etc. he mentioned he'd be finished and out to see us after 4 pm, so we're betting on 5 pm! We'll be given a pager to get updates throughout her surgery, so we'll be staying within close proximity to the hospital tomorrow afternoon, hopefully it's a beautiful day (like it has been) and we can spend some time outdoors with the boys. For tonight, Maddie can still eat until 4 am, then she can have only water or pedialyte and nothing after 8 am. This won't be too bad on her.

As for my roller coaster of emotions, I'm feeling good about tomorrow at the moment, much better than the past few days. Derek, Carly and their brother-in-law Nathan (Carly's twin: Marilee's husband) came and visited us at the RMH and gave Maddie a beautiful priesthood blessing. The little boys were pretty obnoxious during it though, which kept my mood a little "lighter" or I would have been a wreck during the blessing. Of course I've shed my tears throughout the day but know in my heart that all will turn out just fine. I know my little girl is a fighter and is strong. It will just be great to get it over with. We've put our faith and burdens on Him, for we know He is the only one who can bring us comfort and peace. Thanks for all of your love, support and prayers...keep them coming tomorrow! I'll keep everyone posted.

We had a wonderful day together...here's the little boys enjoying their time with baby sister. She's so intrigued with them, as you can see from the drool! What a lucky little girl...

Reminders

We've been asked how we're doing and to tell the truth, it's gut wrenching at times. Tomorrow is gut wrenching. I find it very hard to swallow, especially the alternative, if Maddie doesn't have the surgery or if her heart doesn't like what it's about to endure tomorrow. It's hard to put your baby through this kind of ordeal. So I'm reminded of many things as I type away.

I'm reminded that she'll never remember any of this and I do find some solace in it. I'm reminded that her heart is working much too hard when I feel her little chest against mine, it must be getting tired of beating over time. I'm reminded that she is not as strong as she used to be when she can only finish an ounce of her bottle before tuckering out. I'm reminded that she should thrive after this surgery...she only weighs 12 lbs at 4 months right now. I'm reminded with her scar of all she has overcome in her little life. I'm reminded by her smile and sweet eyes of the dreams and plans I have for her. I'm reminded by this past week of her strong will and fight. I'm reminded, since coming home on March 31st, that we have been "gearing up" for tomorrow, the next step in her heart repair. I'm reminded by angel heart babies just how precious time is. I'm reminded that our Jesus has been with Maddie thus far and will be there tomorrow, holding her on that operating table, when I can't. I'm reminded that He loves her more than I can ever imagine or fathom. I'm reminded that He has answered so many of our prayers and I'm reminded that He's here and He's listening. Please join us in prayer for our baby girl tomorrow.

I'd like to share a beautiful poem written by another heart mom, Stephanie (mom to Braeden, HLHS). Again, I have to trust Him when handing her over tomorrow. I'm reminded to trust and know that this is out of my hands.

I pull out our suitcase,
It's time to pack.
I just can't believe,
that it's time to go back.
I wish we could run,
My feelings are mixed,
Just go someplace where..
there's no hearts to be fixed.
No more needles, no more taped cheeks,
Oh Lord we've been home,
but for just 16 weeks.
I know that's a blessing,
some have had less,
but I want more time,
I'm just nervous I guess.
Lord I have a question,
that only you know,
when they tap my shoulder,
because it's time to go..
When I straighten her blankie,
and I smooth down her hair,
Do you promise me Lord,
that you will be there?
When I trace her small hand,
and I kiss her forehead,
and I long to pretend,
that she's home in her bed,
Will you give me the strength,
that I need on that day?
If I give you my burdens
will you take them away?
I know it is true,
that we do what we must,
and that all I can do Lord,
is to give you my trust.

Family

Bryan and the boys came up yesterday afternoon and will now be here through surgery. It was so good to see my little guys, it had been a week. They seem to change with these absences from mom, they're just growing up too fast. They enjoyed staying with Grandma and Papa Allred all day then daddy at night the last few days before coming here. We have so much support at home and there is never a moment that those two aren't getting loved and plenty of attention! My mom went back home to get things in order before she and my dad will be back over for Tuesday, as well as Randy and Nancy. We're disappointed to miss the Allred Family Reunion next week but know that in 2010, we'll all be there plus Maddie will be running around!

Last night Derek, Carly and their brother-in-law Nathan came up to give Maddie a blessing. We are so blessed with all of the love from our extended family as well and this kindness and support truly makes a difference in our times of uncertainty. Derek gave a peaceful blessing that will help carry all of us through on Tuesday. It's always so good to spend time with Derek and Carly.

Today we wanted to enjoy the gorgeous Seattle weather, so we packed up all the kids and went to the Woodland Park Zoo. Maddie's stroller works great for carrying her oxygen tank and since we were outside, we weren't so anxious about the "germ factor." It was great to be out. What a cool zoo...lots of exotic animals, our favorites being the giraffes, hippos and lions. Cade's favorite was the bears (too bad we never saw any???) and Jace loved the elephants. Well, the only bear Cade may have seen was me- the "Mama Bear" who protected her little girl cub from people, brothers' dirty hands and germs! We all took great naps this afternoon after all of the fresh air and exercise. Here's some pictures from our zoo adventure today. Tomorrow we'll be heading up to the hospital for the last pre-op preperations then a day of relaxing for the 5 of us, here at the RMH.

Bi-Directional Glenn Surgery Information

Here's some information on Maddie's surgery on Tuesday. She's having the Bi-Directional Glenn, 2nd stage in the repair for her heart. She is down the single ventricle path called the Fontan Procedure. Basically, at the end of the surgeries, she will function with only half of her heart, hence "single ventricle." At one point we had hope that Maddie would be a good candidate for the 1.5 ventricle repair, getting some usage out of her right ventricle and opening up the pulm. valve but since the cath, our team feels that she would not be able to sustain this type of repair. It was a let down since we always had hope that there would be some usage in her right side and not just let it "be" there. After the cardiologist explained that once we head down that path though, we can't turn back. We're much safer to do the Fontan for Maddie's future. He called the 1.5 repair the "circle of death" if it doesn't work and it looks like Maddie's would not work, a huge gamble if we tried it. She just doesn't have enough to work with there to do this type of repair. Bryan and I had always hoped for this because it eliminates that last surgery and if it was successful, her health and stamina would be better throughout life than with the Fontan. So it was disappointing to hear that it's no longer an option. But in the end, we want our baby girl to have the best possible chance and if things are bleak with that type of repair, we don't want to go down that avenue. We're very fortunate to have options and there are many kids and some adults who live today with the Fontan.

According to Maddie's surgeon, our risks have been cut significantly since making it to the Glenn. 25% of babies don't survive to the Glenn and now that number has been cut in half, post surgery and recovery after the Glenn. A big relief yet still scary at the same time. Here's the info. about the Glenn surgery. Really it's just replacing what she already has and cuts down the work load of her heart since it's not having to pump blood to the lungs now. Her O2 saturations (sats) should hang in the low 80's (healthy hearts are 99-100%) so she could still look blue but a big improvement from where her sats are now. Our dr. did say that babies typically really take off after having their Glenn since they don't feel so tired. They start eating better, growing and hitting those developmental milestones. What wonderful news to hear. My baby having some energy...amen!

The aim of this operation is:
• To maintain the flow of deoxygenated (blue) blood to the lungs by attaching the superior vena cava directly onto the pulmonary artery. This is called a cavo pulmonary shunt.
• The Gore-Tex shunt that was inserted in the operation for stage one may be removed.
This operation is necessary as the baby's heart will have grown but the Gore-Tex shunt will have remained the same size. The shunt will therefore no longer provide the baby with oxygen it needs. Since the cavo- pulmonary shunt is made from the baby's own tissue, it will grow with the rest of the heart. It is passive blood flow to the lungs, not pumped since the right side of the heart cannot function in this manner.
The baby will probably be in hospital for a shorter time than for the first operation as this operation is less complex than the first.
The final operation is called the 'Fontan Operation', which is often done at between two and four years of age.

In "Maddie News," she feels ok- still desatting throughout the day and still very tired. We do get some smiles but overall, she just isn't her happy self. When she desats, she gets a panicked look and starts really fussing, which doesn't help the matter. This worries me with her, although if I felt like I was suffocating, I probably would do the same. I've been so proud of her, she's a tough little thing, a true blessing. Here's one of her "looks" when she isn't feeling so hot. Still my pretty girl.

Discharged for now

Today was SUCH a long day. After much contemplation and talk with our team, we were discharged to the Ronald McDonald House. Yeah! A break from the hospital will do us some good until Tuesday. We have all of the monitors and oxygen we need here. Maddie has done well the last couple of days so I felt much better about leaving Children's until surgery day. So our day was very busy and tiring. The process started early this morning and we finally were able to leave at 7 pm! Crazy. We took care of a lot of the pre-op stuff so all that is left is labs on Monday. Met with Dr. McMullan, Maddie's surgeon same as her first surgery) and he went over everything then I signed those dreaded consent forms. He feels very positive about Maddie's heart responding well to the Glenn. What great news and encouragement to hear going into this. During our long wait today, Lisa and Ava came and visited us. They were here for Ava's appt. and dropped in real quick to say hi (plus we treated ourselves to a coffee and brownie!)

So we're here at the RMH, House A, until then. It is really nice here...what a wonderful facility for families. We're laying low though...avoiding contact with other people in order to keep Miss Maddie healthy and strong before surgery. Hers is scheduled as 2nd case on Tuesday (around 11am?) so we'll just bring Maddie over Tuesday morning for it. I'll post more later on the details of the Glenn. My mom came over to help me out while Bryan went home to take care of some things, so she's getting a crash coarse in Maddie's world! We've enjoyed our time together, a fun "girls trip" we're having!