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.

Day 9

Maddie is recovering slowly but surely. She has went off of some meds, we're learning that this recovery time can take awhile. Feeling anxious about how long this part will take. She's still so precious, even with her "millions" of tubes and wires. Hard to find our baby underneath it all. We're enjoying having Jace and Cade around and look forward to a nice Easter tomorrow. Uncle Lowell and Aunt Colleen came over today, brought us tons of treats and the kids easter gifts. While they were visiting, Dr. Baden informed us that they needed to do a "lung tap" at her bedside to get some fluid off of her lungs. She's developing pleural effusions so in order to keep her lung from collapsing, he drained some fluid off. Uncle Lowell, Maddie's doctor, got to stand bedside as well and watch the procedure. I left the room...she did fine and this should help her in her recovery.

Everything is in bloom over here, which makes it feel like spring's here. Have a wonderful Easter and keep our little sweetheart in your prayers.

Day 8

Maddie did ok today. Had a pretty rough night last night, maintaining her blood pressure was a big problem. This can be expected though after surgery. Had our hopes up that she would really rally today, but she was just too worn out. As we left tonight though, she was much more stable and was even starting to perk up. I thought the hard part was getting through the surgery but I'm learning that the hours/days following are the scariest. The bottom line is her heart was just tinked off. Today was very nerve wracking and the tiredness has set in for me. I am no longer running on adrenaline. We're not in the clear with her yet which makes everything more upsetting. But our highlight for the day was our boys came. Aunt Kerry and Cindy brought the over. So great to see them, hug and kiss them and listen to their little voices. It's been so hard not having them around everyday, since I'm always with them 24/7. They'll be here now which is a nice "distraction" from ICU life and we're looking forward to having Easter with them. I had a rough time visiting with anyone today...loved having my aunt here but am really lost for words. My mind is constantly on Maddie hooked up to all of those machines so simple conversation is difficult for me. Praying that Maddie will really come around by then as well- very difficult seeing her this way.

Day 7- BT Shunt Surgery Day

We were able to post earlier today on Bryan's phone, but we thought we should add more to fill you in on how it went. This morning was a roller coaster for us- we were told yesterday that her surgery would likely be today. At 4am this morning, the nurse called us and said they were preparing like she'd have surgery around 2:00. So we went to the hospital thinking she was going to go. The problem was, believe it or not, bed space.We were able to meet with our surgeon, sign consent forms and from 9-12, we were told she was going, then not, then yes. It was so nerve racking and frustrating. The Cardiac ICU was a complete zoo today...lots of kids, full rooms, and some children in an acute condition that required them to have surgery before Maddie and/or be on an ECMO machine. So, at 1:00, the anaesthesiologists came in, talked to us and she was ready to go. We were able to walk with her bed into the surgical wing, kiss her and we both walked away very shaken. It was the most difficult part of this journey yet. They started her surgery at 2:45 pm and she was out by 5:15 pm. It helped having my parents, Nancy and Aunt Maria here to pass the time. It was a beautiful day (a little cool) so we tried spending some of the afternoon outside. The flowers are all in bloom and everything is just so green here.

Her surgery went very well except the first shunt that was put in formed a clot inside and they had to remove that one and put a whole new one in. So, they actually performed that technique twice. The shunt that was put in was a 3.5mm gortex tube between her right subclavian artery (off her aorta) and pulmonary artery(to lungs). It's basically bypassing the right side of her heart, since her right ventricle cannot function. She has a single ventricle that works- her left. This is a temporary "fix" for Maddie though. She will out grow this shunt, then in 4-6 months, she'll have another surgery called the Bi-Directional Glenn. Her last surgery, which will finish the replumbing of her heart will be between 4-6 years of age and it's called the Fontan. These 3 surgeries are labeled the Fontan Procedure, which was developed in the 1940's. They are all open heart procedures. So, we've just started this journey with her. We feel like we've crossed one huge hurdle, getting through this surgery today. We got to go back and see her after she arrived in her new room, there are more wires, tubes, lines than I'd ever imagined. She is on the ventilator (which all babies are with this surgery) and hopefully will be able to go off of it in the next couple of days. That's our hope. She is also on a Morphine drip and she was completely out of it, takes a while for them to come to after major surgery. I thought I was prepared for this part, very difficult to see your own baby like that. But again...I have to remove myself, my feelings from this and look at it in a medical view- Maddie won't survive without having this done. For the most part, Bryan and I were very calm today. We had the support of my folks and his mom, as well as everyone back home. My faith is stronger than it has ever been and I'm sure that God was carrying us all through today. I felt His presence and was lifted up by Him. We also are incredibly grateful for all of the prayers from our family and friends. We know they were sustaining us in our time of uncertainty. Maddie is truly a little fighter yet a sweet angel from above. She is doing well and we were advised that we'd probably rest better if we don't stay in her room tonight (one of us can stay with her now, there is a little bed for a parent) but we decided not to. We're so exhausted and know she will never be watched over closer in her life than she will tonight.

Day 6-Cardiac Cath

First off, we are overcome with all of the love and support that is being "sent" our way through your prayers, posts and emails. Thank you from the bottom of our hearts. We are so blessed to live in the community we live and were raised in, as well as the support of all our dear family and friends. It is truly lifting us up. Maddie's first big procedure today (her Cardiac Cath Balloon Atrioseptostomy) went very well. She was intubated and came off the ventilator like a little champ, before even coming out of surgery. She was also part of a research study of using a new "drug" (anticoagulant called Angiomax instead of Heprin) and is the 9th neonate in the nation for this to be used on, the 1st neonate at Children's for this to be used in this type of procedure. They got their research...and Maddie did awesome with it (btw, it was very low risk and actually works better than Heprin, they just needed the research data so we put our trust in our much respected doctors). The doctors did not do the stent or open up her pulmonary valve yesterday, so it looks like the "major" repair now. We received news this afternoon that Maddie is in the books for her major surgery tomorrow, the Blalock-Taussig (B-T) Shunt. It is an open-heart procedure and surgeons may or may not need to put her on heart-lung bypass. We are very nervous, will meet with surgeons in the morning if it looks like they can do it (surgery around 2 pm). The reason it's not official yet is the Cardiac ICU is a zoo and they don't have enough beds right now for post-op kids. We're learning this is hospital and ICU life...YOU CAN'T PLAN!!! It just all depends on what's going on. We're learning to just deal. So, please keep us in your thoughts and prayers, especially our little Maddie. When she came "awake" after this morning's procedure, she was bright and alert, looked happy and ate like a little piggy! (She'd been held off since 4am). We know she's a little fighter, she is doing well, and we have confidence that everything should go fine tomorrow but we're incredibly scared. The wait during her surgery is going to be excruciating. As her parents, we're dealing with the fact that we have no choice here...she has to have this surgery in order to survive. It's a very tough realization. God has given us such a wonderful, sweet soul to raise and we have to have the courage and strength to endure what it is that HAS TO BE DONE. We feel very blessed to have been given Madison Grace and even as difficult as this is, our hearts and spirits are wrenching in pain for what she has to undergo and for the risks this takes to fix her heart, we would not trade her for anything. Please pray your hardest for all of us tomorrow.