Day 17-Discharged!

We're discharged!!!! Tonight we're staying at our hotel with Maddie and tomorrow we'll have some follow-up visits before heading home. Maddie has done so well and only 10 days following her open-heart surgery, she's able to leave Children's Hospital. Wow. We thought we'd be here longer but with Maddie's strong will and God's loving grace, the support and prayers we all received, and the wonderful doctors, nurses and care at Children's, we're coming home tomorrow! Our hearts are filled with so much joy...words cannot express it. Watch out Royal, here comes Maddie Grace! We can't wait to see our boys, be at home, and have life back to normal again. Here's pictures of Maddie in our car loading up to leave the hospital, Maddie lounging in the hotel and our boys and the fun they've had during this time. We're so thankful to our entire family for all of their help. We love you all so much!

Day 16

Thought I'd blog a little different tonight...Maddie is 16 days old, so here's 16 facts we've learned about our baby girl:

1. She is a squeaker & grunter (probably louder than our boys!) Pretty cute noises though!

2. She has inspired and touched so many lives in her 16 days of life. A true blessing to many.

3. She's very popular with the nurses...our ICU nurses have come back to visit her and get their "Maddie fix" since we moved to the floor.

4. She has 2 dimples, one in each cheek, as well as a small one in her chin (just like her daddy!) Very cute.

5. She burps like a trucker for such a sweet little thing.

6. She's a very content baby...only cries when she's really mad.

7. She has very sensitive skin...poor girl, didn't get that pretty Allred color.

8. She's a hard little worker and fighter. Tries so hard to finish her bottles, but tires out easily. Totally understandable!

9. Her heart is still overworked, won't be "normal" for her until she's had all 3 surgeries. The next surgery should be between 4-6 months (this late summer/fall) and her last surgery will be between 2-6 years old, depending on how she's doing.

10. She had an awesome surgeon- Dr. McMullan. Here's a picture of them from this morning. He's a very cool guy...always gives us all the time in the world to ask our billions of questions, some repeats, and he is just so "down to earth". We learned that he originally wanted to be a priest, then chose med-school and when he observed a VSD heart surgery, he instantly knew that is what he needed to become, a heart surgeon. He reminds me of McDreamy!

11. Maddie's heart is the size of her fist- like a walnut. Dr. McMullan operated on this walnut, sewing in her shunt with a needle the size of an eyelash. Amazing.

12. Maddie's congenital heart defect: Pulmonary Atresia with an Intact Ventricular Septum, Hypoplastic Right Heart Syndrome, Ebstein's Anomoly, Atrial Septal Defect. Her heart defect is very complex and very rare. She was born with half a heart, basically.

13. She will need to live "in a bubble" for a while...can't risk getting sick and a setback before her next surgery. Maddie is going to keep us home. And yes, I'm looking forward to it!!!

14. Maddie will see a cardiologist for the rest of her life. She'll also take baby asprin for the rest of her life, as well as Captopril (ACE inhibitor for her heart). The oldest survivors that have what she has are in their 20's/30's. We have hope that by the time she's that age, there will be something doctors can do to make her heart last a lifetime.

15. Madison Grace is the best thing that has happened to me. Although this has been the toughest thing I've ever been through, her gentle spirit and heart has brought us all closer together and strengthened our faith, hope and love. My relationship with our Heavenly Father has grown immensely as well as my faith in others. Depending on God and handing it over is a lesson that I'm learning daily and I know that He has helped me handle this as well as strengthened my little girl to make it through it. I'm eternally grateful for my Maddie and for God choosing us to be her parents.

16. Maddie has a HUGE fan base, we've learned. We are so blessed to have so many who love and care for her. Thank you from the bottom of our hearts for all of your prayers...we know that this has helped sustain us during our difficult times. We believe in the power of prayer and Maddie proves this!

Day 14/15

Everything is going great...we've been very busy on the "floor". Maddie is on the "fast track" recovery plan and our cardiologist even mentioned that she's doing better than she could have ever dreamed. Our marvelous Maddie!!! It was a big day...her first bath, an echo, and her immunizations. Feeding is really the only "issue" that we have to get down before heading home. She's taking part of her feeds orally (by bottle) and part by a NG tube in her nose. I was a little discouraged when having to start the feeding tube but have been reassured that this is what she needs. She gets too tired during her bottle feeds and it's a lot to expect of her to finish her bottle (50 ml). We don't want her burning more calories trying to feed than she's taking in. Pretty simple. She also has to have fortified breast milk to up her calories, so that is why she has to be bottle fed (although I love nursing my babies...eventually, I will with Maddie I hope!)She does get to practice once a day so she doesn't lose that ability. Our team met with us today and started some of the discharge process (boy, what a process!) They're thinking Sunday or Monday if we don't have any problems. I hate to even say this...don't want to jinx us! Maddie needs to have a great day of feeding as well as we be comfortable with everything to go home. Since we live 3 hours from here, they're hesitant on sending us too early. Bryan is here now, which is so nice. I really do depend on him and need his support here. He's totally in love with the new girl in his life, I love watching him with her. Maddie is a very lucky girl to have him as her daddy...watch out, she will do no wrong in his eyes, I'm afraid!

Day 13- Onto the floor!

Maddie's on the floor now! She graduated the ICU unit. What a huge change of pace for us. They moved her first thing this morning, as soon as I got to the hospital. I was a little emotional all day...now my role as mom is here. Each nurse here has 3-4 kids to watch so the ICU care that I was used to (1 on 1) is spread thin here. I was a little overwhelmed with the feeling that if I'm not here with her, no one will be. Let's just say I'm living in room G4010 now. She is doing really well. Gets a little tired when taking her bottle but so far she's getting what she's needing. Still very hoarse and fussy off and on. But I was able to hold her LOTS all day, something I've been yearning for...probably why I was so teary! Things have calmed way down here, I don't really know how to take it...finally being able to take care of Maddie is the best feeling in the world. I feel so blessed today.

My cousin Ashley and her husband Josh came and visited tonight. They brought me dinner, some goodies, and tons of reading material for the stay on the floor. It was great to have some company, especially since mom left today and I've been alone and super emotional.

Day 12

(Top picture is of Maddie yesterday, bottom picture is of Maddie today.)
Today was absolutely awesome. Maddie is a superstar! She did so great...started to look and act like a "normal" baby. My heart was filled with so much joy. She was taken off of the ventilator this morning, handled that great and the nurses pulled off some lines. Yeah! I was able to feed her this afternoon, she was so hungry and just handled drinking from the bottle like a pro. She hadn't forgotten her suck, swallow, breathe technique. What a huge relief. I was able to feed her later, again she did so great. The hardest part was watching her cry. She has no voice (one of the side effects of having a breathing tube) so it was a silent cry, hoarse sounding at times. Her voice will come back in a few days I'm told. Coughing, hiccuping and sneezing looks very painful as well but are all things she's supposed to be doing right now. The plan is if she has a good night and continues in her progress, she will be transfered out of ICU to the "floor" tomorrow morning. She is off all her IV meds, now just taking baby asprin as a blood thinner and a little babytylenol for pain. It's amazing how fast her recovery has been, once she got on a roll. I hope this continues...it has done all of us good. I'm so proud of my baby girl. She is a fighter!

Day 11

Maddie's night and morning went very well. She was being weaned off of the ventilator as well as her morphine. The plan was to get her extubated this morning...until they did an echocardiogram. The echo showed more fluid around her heart, more from the last echo on Saturday. So I waited all day to find out what/how they were going to take care of it. By 6:00 pm, she was wheeled off (again) for another procedure to the cath lab...putting in a new chest tube to drain the fluid off of her heart. Dr. Johnston performed this. Always hard to watch the doctors take her away, and Bryan went home really early this morning to take care of some stuff, so I was by myself. I'm learning to just remove my own feelings from these tough situations and look at it from a medical standpoint. She has to have it done or things will get worse. While waiting, I went to the cafeteria for dinner and to my surprise, as I sat eating my meal in tears, Dr. Vernon sat down with me! It was nice to have some company and the reassurance that Maddie was ok and would pull through. Of course you worry non-stop of the "what ifs". The procedure went well besides a little heart tachycardia, and the plan is to take her off the ventilator in the morning. Yeah, extubation day (as long as nothing changes this)! Hope she has a good night. I haven't got to hold her since last Wednesday, so I'm itching to have some time with her. Once the breathing tube is out, sounds like I'll get my chance. She looked very beautiful today (as always), swelling is almost gone, and I even put a little pink bow in her hair. So fun to finally have a little girl.

Day 10

What a great day Maddie's had. More meds pulled and the goal of the ventilator tomorrow...She's on a roll. Opened her eyes for a bit while Bryan and I talked to her. That was a first. Our Easter was very low-key, church this morning at the hospital, one of the best services I've been to, the meaning of Easter resonated in us all in that chapel: hope, renewal, and new life. Just what we've been praying for. There is some comfort when surrounded by others who share in the worry and pain of having a sick child. We're so grateful for our little girl and her spirit to get better. She is truly a remarkable baby. We've been blessed beyond words.