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.