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!!!

First Family Photo

3 Months Old!

 

 

 

It's hard to believe that Maddie is already 3 months old today. In most ways, it has flown by yet it feels like she's been a part of our lives for a very long time. Finding out prenatally about her heart defect made this so...I quickly became very attached to the little life growing inside me because I then learned how fragile and miraculous life really is. This also brought my attention to many things I took for granted; good health being the major one. Having Maddie has taught me to cherish every day, to live in the moment and to not take things for granted like I used to. The motto that I've been reciting to myself daily is "don't let tomorrow take away from today". It's easy to worry about the complexity and uncertainty of Maddie's heart, and I've found myself despairing over what 'could' happen and the fear that I feel is like none I've ever experienced. But I'm learning this gets me no where, except spiraling down. While worrying and crying over 'what could happen', I miss out on the precious moments I have with her and the boys right now. Since being housebound, life has slowed down for us and what blessings have unfolded from this! Our days are much simpler now, I don't feel in a rush like I used to, and it's a very peaceful feeling. I know life will pick back up for us again, but having a taste of this for the past three months has surely opened my eyes to what is really important. I'm truly grateful for this time I've had. And when things pick back up again and I find myself digging that hole, I will remember how to find this peace. So thank you, my pretty girl, for teaching me how to live more wisely and well and for making me pay attention to the precious time we have here. My heart is truly full and I couldn't be more blessed.

Crazy Caden!

I just had to post this about my little Caden...this morning, while trying to 'catch up' (do dishes, put in a load of laundry, fold a load, vacuum the kitchen floor, pump, feed Maddie, pick up a million legos, make beds, you get the picture) Caders was up to NO GOOD! I'd finally 'kicked' the boys outside to play, after nagging at them to pick up their legos for the 100th time, when Jace comes in the house and here's our conversation:
Jace: "Mommy, you need to come see this!"
Me: "See what?"
Jace: "Caden"
(After hearing this, I think "oh, no!" Then those scary pictures start running through my mind.)
Me: "CADEN!"
Jace: "See mom, look what Caden did!"
Caden looks at us with a big grin and giggles...the picture says it all! He was just sitting there on the porch, so proud of himself and humming a little song, naked! I think I should be nervous, nudist colony member in the future?!? The boy LOVES being in the nude!


He is definietly in his terrible twos because only a short while later, I was cleaning up lunch and the boys were playing in their room when Cade comes running out, laughing at himself (the kind of laugh when they're completely tickled with something they know they should not do). He had polka-dotted his legs with a green marker! Nice. You may be asking yourself, "where the hell is his mother during all of this kid's mischief???"


And last but not least, (this was not from today) here's another good one from Caden. 'Undoewayeus' (underwears in Cade's lingo) on the head and dancing around the house! Where does he come up with this?


As you've seen, Cade keeps us all laughing. He is such a little character and comes up with quite the ideas. We are always cracking up at him. His laugh is contagious and the more attention, the better for Mr. Cade!!!

On a side note, Maddie's doing really well: eating, sleeping, growing, burping, smiling, blows bubbles, loves staring at her fists and her nose (cross-eyed lots) and just being a normal baby! Wow, thought I'd never think of her as a 'normal' baby. All is great here!

Maddie's BFF!

We had such a wonderful day yesterday. The boys went to spend the day at Nany's while Maddie and I drove down to the Tri-Cities to see our friends, The Maxwell's. Trent and Susie's daughter, Teagan, was born a week after Maddie with Hypoplastic Left Heart Syndrome (the left side of her heart didn't develop properly (opposite of Maddie's CHD)). So put together, our girls have a good, whole heart! Their second and third surgeries are the same to 'fix' their hearts, and they're even on the same time frame for their surgeries at Children's! Anyway, while we were in the NICU, I saw Trent walking through one day and just knew I knew him from somewhere. We ended up bumping into him again and realized that we had high school and college rodeoed together! What a small world. Since that day at the hospital, we've kept in touch. Susie and I have emailed and talked on the phone weekly and this was our first 'playdate' with our girls.

It is such a blessing that we met up. Having someone who shares all of the same feelings, worries, hopes and dreams I have for my daughter is so comforting. No one can completely understand this until you're in it. There is so much to learn with the heart defects that the two of us are conquering the medical world together! I so enjoyed our visit and we're planning our next get-together soon. I don't think anyone could have gotten a word in with the two of us gabbing away all afternoon!!! The girls are both so adorable and what a sweet relationship they're going to share as they grow up...I'm so grateful that Maddie will have someone who will understand her, and her 'BFF' (Best Friend Forever) is only a little over an hour away! Watch out rodeo world, can't you just see these two galloping around on their ponies together! Here's some pictures from our afternoon. Teagan's blog, as well as our other heart friends, is on the left side of this page under "Kindred Hearts". God does work in mysterious ways...putting certain people in our paths who will help us through our trials and only add to the joy in our life! I'm very grateful for the Maxwell's as well as the other heart friends we've met so far in this journey!

Jace's Preschool Graduation

Last night we had Jace's preschool graduation. This was his first year, only 2 days a week. He really enjoyed it, learned lots, made some new friends and got to play with many cousins there. What a fun night out tonight was for us (although Maddie missed out and stayed at home with Aunt Kerry.) She so enjoyed being held the whole 1 1/2 hours we were gone! Thanks Ker for coming over!

Jace "advancing" on to another year at Steps Ahead Preschool!

Not so happy about posing with mom & dad. It's crazy to think that Bryan & I went to preschool together MANY years ago, and now here we are with our little preschooler! Wow time flies!

Loves posing with his favorite teacher, Mrs. Becky! Thanks for a FUN year...looking forward to another one!