Appointments & Heart Friends

We had another visit to Children's yesterday with Maddie's Cardiology and Nephrology appointments. She had a complete work-up with an echo, EKG and chest x-ray. We also spent LOTS of time chatting with Dr. Chun about Maddie's heart, which is always so interesting. He's such a great doctor and we're going to miss him!!! From now on, we'll be following up with Dr. Vernon (Meg, our original doc) since she'll be back in clinic starting January. Maddie's doing well heart-wise except he's put a watch on one of the branches off of her right pulmonary artery (the bottom one of the three). It's narrowing and overtime he's noticed the blood flow has decreased through it so it's something to watch. It may need a balloon procedure with a cath to help stretch it out...right now, blood is still getting through there to that portion of the lung, so that's good. We just don't want to lose that branch off the P.A. Being a single ventricle, we want Maddie to keep "in tact" all that she can with her heart's anatomy. She was a good girl for her echo; happy and super busy playing which made it tricky to keep her still at times. Ray, our favorite sonographer, performed her echo which is always such a treat. We just love her and Maddie does too! We have been spoiled with the team we have at Children's. We've had lots of consistency which I really like. They're like a family to us! Unfortunately, she's dropped a half pound in weight, she's 15 lbs. 9 oz., 10th percentile. Her height is in the 25th and her head circumference is in the 50th percentile! Her weight is probably down after being sick...the poor girl doesn't have much reserve so when she gets sick, it's only logical that she's going to drop quite a bit in weight too. One good thing is her appetite has been better than ever these past few days so I'm hoping she'll regain that weight soon. Every ounce counts!!! Her O2 sats were down some too...hanging at 81-82, she's typically at 85.

We also met with Dr. Symons and Dr. Jackson with the Nephrology clinic on her kidney issues: the reflux and size discrepancy between her kidneys. For now, she'll stay on the Bactrim antibiotic to prevent any UTI infections. In 2-4 months we'll follow-up with another renal ultrasound to look at her kidneys since one is larger than the other. The larger kidney rates at a 3 with the reflux (moderate) while the smaller kidney is a 1 (mild). It is a positive thing that she hasn't had any bladder or kidney infections which shows us that the Bactrim is working well for her. Dr. Symons said that 80% of the time, kids with this reflux will outgrow it by the time they're 8 yrs old. So....she'll be on the Bactrim for the long haul. He mentioned that since she's a cardiac kid, we need to stay on top of this since we want nothing to compromise her health or her kidneys.

The highlight of our trip was seeing our heart friends!!! We went over on Sunday and while Bryan went to the Seahawk game, Maddie and I stayed at the hotel, and Jesse and Luke met us! It was such a great time visiting with them. Luke is 22 months and is such a little cutie pie. He has tons of energy and is a typical "almost" 2 year old! He also learned to say Maddie which was so cute...possible date between these two someday??? It's so fun to see a toddler with a heart similar to Maddie's. You would never be able to tell he's a single ventricle by looking at him! His momma, Jesse, is so sweet and has such a wonderful outlook on everything. I had many questions for her and she was so positive and great to visit with. I'm so glad they drove on over to Bellevue to meet us. It was such a fun afternoon!

Jesse, Luke and Maddie and I after a stroller ride and a Jamba Juice!

Before our appointments at Children's, we had the treat of meeting Mimi and Mia! Mia is absolutely beautiful and her chunky cheeks are "for real"! She looks so awesome and is only 2 weeks post heart transplant. She also sats at 100%!!!! I guess I didn't put 2 and 2 together on that one... it was just amazing seeing her. What a little doll and I'm sure she gets this from her momma. Mimi is so much fun, so sweet and truly an amazing person. It was great finally getting to meet them. While visiting with Mia and Mimi in the CICU, one of our favorite nurse's, Anne, was in the hallway! It was so great seeing her again. She ran out to catch Bryan and Maddie in the waiting room so she could see her baby....Anne was Maddie's very first nurse for the first week of her life. Maddie's so huge now compared to then, it's funny. They do have a special bond.

Here's the very famous Mia (having tummy time and loving it) and her cute mommy, Mimi! They were moved to the floor later in the day...yay Mia!So our appointments made for a very long day (1:30-5:30) but were so worth every minute of it. Getting a good report on Maddie is like having a huge weight lifted and meeting wonderful heart friends is just as exciting! We also made another delivery to the CICU with blankets, burp cloths, and bibs...45 receiving blankets to be exact! It took a wagon to haul them all in! Thanks to Grandma Allred, Nany Stewart, JoAnn, Aunt Janet, Aunt Jessica, Rose Mary, Michelle and her mom, and Ethel for making so many cute ones. The nurses love them (they are now known as "Maddie blankets") and I know the families and baby's who receive one will too!

The blanket assortment we made for the heart babies... feels so good to give back to the place that saved our daughter's life!

Perfection

A new world opened up for us when our Maddie was born. Our life is so much different than before and I am so glad of this. I see life now in an entirely different way... I have always tried to be "perfect". A perfect wife, perfect mom, have the perfect kids, etc, etc... It's one of many of my MAJOR flaws. But since January 2nd and finding out about Maddie's "not so perfect" heart, in fact, a majorly defected heart, life forever changed for me. Those months before her birth were excruciating. The wait, the worry, the uncertainty, the unknown was so difficult for me to bear. I had so many emotions and learned that life is not perfect and the one I'd dreamed of was not going to happen...a better one was in the making. Not my perfect plan but His perfect plan.

But until her unexpected arrival into this world (she was born 5 weeks early), I had a difficult time accepting this change in our life. I had the hardest time with the fact that my daughter, whom I dreamed about and wanted so badly, wasn't made perfect. The "perfect" family, now having my boys and finally a girl, wasn't how I'd envisioned it. That I, who strives so hard to be perfect and always do the right thing, was carrying a child that had a major problem. What did I do wrong? Why did God do this? How could He create a sweet, innocent child this way? What did I do to deserve this? Why would she have to live her life with only 1/2 a heart and have to endure so much? I asked this so many times. I questioned my faith, I questioned Him. I learned a bit about suffering. The perfect life I had dreamed of was no more- I had a daughter with a very serious health problem that would never be cured or fixed. Her future was and would always be uncertain, there would always be risks and obstacles and there was nothing I could do about it but accept it. I learned so much in those few months, especially that life changes quickly, it doesn't go as planned, and that we were given a tough hand. Hard to accept for a "perfect striving" person. But now experiencing all that I have and the new world that opened up for us, the "heart world," I have learned so much more about suffering, sacrifice and really living life to the fullest. LIFE is the furthest thing from perfect! Perfect doesn't exist in our eyes...but I have learned that God has made us perfect in His eyes. And Maddie's heart was created by a loving, awesome God. And that in itself is perfect.

I have read so many stories of other heart babies like Maddie. They share many similarities but they are all so different too...some are doing well and some really struggle. I have read too many stories lately of heart babies that have earned their wings. All of these children are single ventricle babies just like Maddie. Their hearts had enough and they gave a good fight. They fulfilled their purpose here on earth, even though it was untimely and in our eyes, not long enough. It is crushing and I truly ache for the mom's, heart moms like myself, who lost their sweet child and didn't get the time that I've been blessed with my daughter. A week ago, one of our little heart friends passed away. Her mom and I had emailed a few times as she anticipated the birth of her daughter. Baby Kaiya lived 2 weeks. She had the same 1st surgery as Maddie, was doing well, and it was a complete shock for me to read that she'd passed away. Their heartbreaking loss makes me realize just how lucky we've been. But one thing is true for all of these sweet babies...they have left a lasting impact in their short lives, have touched more hearts, and brought hope to this world. The blogs, websites and carepages I've read all have the same theme in common: GRATITUDE. As heart mom's, we are incredibly grateful for our "not so perfect" lives. We've sat by our child's bedside, helpless and afraid. Our baby's have had to endure and overcome so much and we know their struggle isn't over. But through this struggle, brings refinement...refinement for all of us. Through our heart child, we've grown. Maddie's taught us so much about what life really is about....and that's not perfection. We're so grateful to be chosen as her parents and we have a constant, daily reminder that life is so precious just by looking at our little sweet miracle: Maddie Grace.

A new life blossoms, and God smiles as His perfect plan begins again.

Battling bugs

These past couple of weeks have been rough...head colds, coughs, and the tale end to this bug was diarrhea! Cade was finally on the mend (after being sick for 2 weeks) when Maddie started running a low-grade fever yesterday. She'd had the cough but that was about it for her symptoms. After sleeping pretty much all day and refusing her bottles, I talked to the cardiologist on call and we put the NG tube back in to get her hydrated. It was either that or an ER visit since she had only taken 240 mls (8 oz.) all day. Putting the tube back in was torture for Maddie (and us) and she made sure to let us know by coughing, gagging, dry heaving and crying for most of the hour after it was placed. Poor girl...although we do love her feisty nature. Today she's been fine, no more fever or yucky diapers. Few! The plan is to take the NG out after she's back to eating better, so hopefully that shouldn't be too long. I'm just praying that we've got all of this out of our systems now! Winter's not even here yet and our family has been sick way too much! So much for my germ-a-phobe ways and being on house arrest...these viruses are still finding us! UGH!!!

Feeling so much better today...still cute as ever, even with all that tape and tubing! She also enjoys playing with the ports at the end of it, it's her new toy to explore and chew on!

8 months!

Moomer is 8 months old today! She's cut her first tooth, is learning that rolling will get her places and she's finally reached 16 pounds. She's growing up too fast. We celebrate these milestones of hers and thank God for our little blessing. Maddie, happy 8 month birthday! We love you so very much!

Mia!!!

Mia's heart finally came...she's in surgery as I type this. I am overjoyed for the McDonald's and Mia right now. Please pray for them as this is not over yet but we know she's a FIGHTER and this may just be a "piece of cake" compared to what she's overcome the last 4 months! As another transplant heart mom put it, this is Mia's first day of her new life!!! As you pray for this sweet baby, remember the donor family that selflessly gave their baby's heart so another could have a chance at life. I just had to share this special news since I know so many of my "faithful blog followers" have been keeping up on Miss Mia as well. What a wonderful day!!! You can follow her blog here.

Three babies!

The boys keep me hopping these days...here they are, after waking Maddie up from her nap, playing "baby" in her crib. She thought it was great though. Love the bed head too, oh wait, that's how Maddie's hair looks all of the time! We've been staying at home, Cade has been sick all week with a horrible cough and cold. I took him Wednesday to the doctors office and his chest x-ray was clear. His nebulizer treatments leave him WIRED but have helped. Maddie's been showing little symptoms here and there of it, hopefully she won't get it to the extent Cade has it. She's teething on top of this. Also wanted to announce that I'm officially done pumping now too!!! I quit on the 1st of November, said goodbye to my friend, the Medela Symphony Pump, and I have so much more time on my hands now...enough to change the look of the blog :) I was barely getting 1/2 of what she needed in a day so I slowly cut the number of times I pumped. It was a gradual process to lessen the pain! Almost 8 months of pumping was enough and we have frozen breast milk stored to last a while too, although she's been preferring the formula over the frozen milk. She's doing ok with her solids, it's hit and miss, and she's still very much a "snacker" with her bottles, only taking around 20 oz. a day, 3-4 oz. per feeding. I guess as long as she keeps gaining, I'm not going to stress about it! Wish I had her little appetite!!!

Baby Mia

Randomly, I found Mia through another heart baby's blog from Utah...she is a fellow cardiac baby from Seattle Children's. She's currently waiting for a heart (4 months now) at the hospital. There are no other options for her survival, she NEEDS this heart and the wait is excruciating. There are 7 waiting for hearts right now at Seattle Children's and that's a huge number. Organ donation is so important and I'd never thought about it much until we had Maddie. It truly is a gift that will save a life.

If you want to give towards a great cause, please go to the Help Baby Mia blinkie and give towards her fund...they are hoping to raise enough money to get her on another transplant list to increase her chances and need almost a half-million dollars to do so. There is also a quilt give-away in her honor that you can check out in the side bar. But most of all, please drop them a comment to let her sweet family know she's in your prayers... imagine if she was yours. Her mama, Mimi, is amazing and is having to endure what none of us ever want to go through...what a test of faith. I know all of our hearts go out to the McDonald family, please support them if you can and keep Mia in your prayers.