Better Days

Just an update that Maddie is feeling much better. These last couple of days have been good. Her sats are running normal for her again and she's making progress with her appetite each day. Her symptoms are hardly visible! She's been discovering lots of new sounds that she can make...so close to giggling as well (with the help of tickling her under her chin). It's so fun watching her new tricks!

Feeling Yucky

Maddie has officially caught the bug that her big brother Caden has had. I'm thinking its a viral thing: fatigue, coughing, hoarseness, stuffy head (no drainage yet)and sneezing. Cade has ran a fever with it but Maddie hasn't shown this symptom yet. This explains her past few days of ups and downs. After talking with the doctor and the cardiac nurse, Karen, over the last couple of days, they are not concerned with Maddie's heart. She's running pretty low sats (68-74), she's much duskier in color, so I've been putting the blow-by oxygen on her which has helped them come up and be more stable. They commented that if she doesn't get over this within a week then we may need to get her over there. She had no appetite yesterday, which was scary and she was completely out of it. Today she's eating much better and she even likes some Pedialyte in her bottle. The thickness of her bottles is probably not the tastiest right now so this helps that out. My mom, mother-in-law, and sister-in-law helped out and took the boys yesterday and overnight so I could get some much needed sleep (when it was possible!)

I do think I'm going a bit delirious... I seriously thought the pulse oximeter screen was talking to me last night. My nerves and anxiety are completely shot. It's so hard watching our children when they're sick and even more difficult when your little one is already taxed! I worry about her heart function enough as it is and since this is her first time getting sick, I'm just on-edge of what to look out for. We do know she's a fighter and should whip this in a couple of days. So please keep our little Maddie in your prayers to beat this "summer complaint" bug.

Chatty Maddie

She's back to her normal self plus a little more I'd say! Maddie has been chatting up a storm lately...she loves her voice! This is probably my favorite milestone so far because her little personality is starting to shine. She even surprises herself with some of those sounds she makes! I know she's having a good time when she starts "helicoptering" with her arms and legs, and the coos keep getting louder! Here's a short clip of her, chatting to the lights on her swing. (You might want to pause the music at the bottom of the blog to hear her.)

Here are the three amigos...ready to head outside for some splashing around in their wading pool. Our summer has finally arrived...it's currently 101 degrees out there!

Fun in the $4.99 kiddie pool... It's lasted 3 days! Whoo-hoo!


BTW- Our little friend Natalie is doing awesome after her surgery! We're so thrilled for her and her family, this also gives us much encouragement as we get closer to the Glenn. Way to go, Natalie...you little superstar!

Change of Plans (for now!)

Our instructions this morning were to call Children's and report to the cardiologist of our game plan for coming over there. Miss Maddie "got wind" of having a hospital stay...guess what, her sats are back up to her baseline (77) and she looks and acts fine, since being home from the ER. She did lose her midnight bottle, but vigorously ate her 3 am great and has tapered off again this morning on her feed. But after talking to the doctor this morning, we agree that we can do the monitoring we need here at home vs. being admitted to Children's for now. I'm very on top of it (poor Maddie) and the plan is to go over and be admitted if she starts having/staying at low sats again. So Maddie continues to call the shots around here...she has since her surprise entrance into the world!

A Bump

Well, we had a bump today. This week I've been extra concerned about Maddie's low sats. Seeing her low scores at the clinic on Wednesday really confirmed my anxiety on this. Since being home, they've been low as well. So this morning I had her on the pulse oximeter and she couldn't get her sats above 72 and she was hanging in the high 60's. Our instructions have been that if she is running below 75, consistently, to call. So, I did. At this time, Maddie's lips are very purple, she looks more dusky than usual and her behavior had changed. She really wasn't interested in her prior 3 bottles and getting her to eat was a huge chore. Bryan's mom had also stopped by and noticed her "look" wasn't normal for Maddie. The cardiac nurse that I was talking to on the other line even commented that she sounded "weak". This episode of low sats went on for over an hour, so Dr. Seslar thought it was best to either drive right over to Seattle or go to the ER. I chose the later and drove to Wenatchee's ER. Children's was ready for an air transport if needed. Low and behold, our baby girl was still hanging low, although her color had improved by now. We spent 4 hours in the ER this afternoon, monitoring Maddie's sats, heart rate and respiratory rate while Children's in Seattle was getting updates on the other line, deciding what step we should take next. So the decision was finally made...we were discharged, with oxygen (blow-by), and we came home but only TEMPORARILY. We're heading back over first thing tomorrow to check-in at Children's in Seattle. Dr. Seslar believes she's really trending down and these are not just "minor" episodes of desaturations she's been having. They would be considered "minor" if they jumped right back up...not staying low for over an hour (which also happened in the ER today.) The team would like to watch her for a couple of days, monitoring her every "hiccup" and then possibly go into the cath lab next week for her cath procedure. The idea is that she may need her shunt ballooned opened more which would bring her sats up and buy us some more time before her surgery. So, Maddie and I will be leaving early in the morning and she'll be admitted to the floor. We'd rather be safe than sorry with her as would her entire cardiac team. She just needs to be monitored more and figure out what's going on with her and these episodes. I'm completely exhausted and have more to do tonight so I better cut this short. Wish us luck and please keep Miss Maddie in your prayers. We hope this is just a little bump for her. I'll keep everyone posted and hopefully they will be boring ones.

Cardiology Appt #4 Update

Yesterday was a big day. Bryan and I took Maddie over for her Cardiology check-up in Bellevue and for a visit to Children's in Seattle. She gained almost 2 pounds in 5 weeks, weighing in at 10 lbs. 13 oz. so we were very thrilled to see her now in double digits! I consulted with her dietitian and she has ordered for her to eat 90 ml (3 oz) per feeding, 8x a day. This would give her 720 ml/day. We've only hit this amount once before...so I hope she can take in this much "fuel". She's been having some puking episodes...we're thinking she may have a bit of reflux but it's mild since it's so sporadic. It's been going on for over a month now and some days it's more prevalent than others.

The surprising part of her appointment was her O2 sats. She was running between low-mid 70's. At home she's been consistent at 77-81 so I was a little alarmed to see the pulse oximeter bouncing around between 72...76...even dips into the upper 60's. Our temporary cardiologist, Dr. Seslar (Dr. Vernon is on maternity leave and had her healthy baby boy!!!) feels like our sat monitor runs higher and their scores are the accurate ones, which means Maddie is getting close to her next surgery. We go back in 3 weeks and he feels we should even see more of a drop then. Once her sats are consistently between 70-75, it's time for the cath lab then she'll be presented to the team for her Glenn surgery (her 2nd surgery). Seslar is thinking she'll be ready in August. The minimum weight they like to see them at is 12 lbs, so that's why we're working so hard on gaining (plus she's only in the 10th percentile).

Overall, Maddie is still doing great. These O2 sats are "normal" for her with her heart anatomy. They are doing what they're supposed to: drop. As she gets bigger, she's outgrowing the shunt she has (from her 1st surgery) so she's not getting as much oxygen profusion throughout her body. This is what has to happen before she can have her next surgery and we have to remind ourselves (since she's doing so well) that she HAS to have the next surgery in order to live. The repair is going to happen and I don't even like to think about it. When you look at Maddie, you wouldn't know she has such a complex heart disease. She's mostly "pink cheeked" and looks healthy, only cynotic (blue) when she's fussing or pooping! So she's plugging along just as she's supposed to, she just may be getting the surgery sooner than I'd thought.

It was our first time going back to the main campus which brought back many feelings for me. We went to see our favorite nurse, Anne. Maddie connected right away with Anne, I honestly think she remembered her! It was very special to see. Anne was Maddie's NICU nurse for the first week of her life and I have attributed much of Maddie's success from her great start with Anne. She got her to take a bottle right away, was persistent with her feeding before her first surgery and I know this has made a huge difference with our outcome. After our visit with Anne and Dr. Jeffries, one of the Cardiac Intensivists from the CICU, we made our way over to the Ronald McDonald House to visit our friends, Angie and Natalie from Alaska. Natalie was Maddie's roommate on the floor and she's back for her 2nd surgery, the Glenn. They are from Alaska so orchestrating this whole surgery thing for them is amazing. I've felt like Royal is too far from Children's...poor Angie, she has to take a plane to get there with her daughter! Natalie has the prettiest big eyes and longest eyelashes, she's just a little jabberer too! So cute! She has her surgery tomorrow, so please keep Natalie and her sweet family in your prayers.

Natalie & Maddie

Friendship

One thing that I have valued more than ever through Maddie's heart journey are friendships...old and new. Not only did Bryan and I hit the "family lottery" when we were born into our families, we truly have wonderful friends. The support we've been given through this has been so awesome. We came home with Maddie to a sparkling CLEAN home, manicured yard and yummy dinners for weeks. The phone calls, help, emails, gifts and comments on the blog have also been so uplifting these last few months. We have appreciated this more than you'll ever know- Thanks again...you know who you are!


Yesterday, Maddie and I drove down to the Tri-Cities for my close friend, Carrie's baby shower. When we arrived, my great friends had already "scoped" out the sick people (luckily, a lady had announced she was sick upon arriving, why she came, WHO KNOWS!?!) The best part of the story is Farrah and Jamie went up to this lady and forewarned her to stay away from me and my baby! Don't you just love it...how awesome is that!?!? The poor gal sat in the corner and secluded herself from the crowd...nice on her part and maybe next time she won't attend a social event when she's sick. Nothing like having your "homies" take care of your dirty work! Thanks girls! It was such a beautiful day and fun to spend some time outdoors. We went by Susie and Teagan's after the shower and it's always so much fun to spend time with them. Teagan is such a cutie! I'm so grateful for the friendship we share...we are just hoping the girls have their Glenn (next surgery) at Children's Hospital around the same time! Our time frames are about the same since the girls are only a week apart. As I've said before, I just love the wonderful mom's I've met who also have heart babies. The bond that we share is like no other...we have the same worries, dreams, simple joys and we "talk the same talk". It brings such comfort!


I also received this most precious gift in the mail last week from my friend Randee. (I've never laughed harder with anyone else! Fun times we had!) She created a book for Maddie from all of the posts on the blog. It's digitally scrapbooked and so cute. We just love it and Maddie will too someday!

I have enjoyed getting back into "normal life" again...slowly and with much caution, of course. It's been so fun to finally "show off" my sweet daughter! On Wednesday, we'll head over to Bellevue for Maddie's cardiology appointment. It's been 5 weeks since our last one and we're praying for a nice weight gain, a healthy echo, ekg, and dr's visit!!!