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.

Day 5

What a busy day we had today...we lost total track of time and learning that this is normal in this place. Maddie was more beautiful today. We met with her doctors-we're learning so much. A Cath procedure is scheduled for tomorrow...risks are low yet it will be her first major thing done here, so we're still nervous. Part of the cath is done for diagnostic reasons and part to fix some areas of her heart. Some decisions can't even be made until they get in there with the cath. So, "game time" decisions tomorrow. Our confidence in the dr performing this is very high and we know we're in the BEST hands. We had a beautiful priesthood blessing for her tonight as well given by Derek and Uncle Jerry, after hours in our dark CICU room. We just need to have faith and trust in God that Maddie will handle this with ease and refocus our thoughts in that He is holding her in His hands. It's difficult to realize that this is so out of ours. Please pray for Maddie, our doctors and nurses, and for Bryan and I. We all will need it.

Day 4

Here's Maddie's favorite sleeping position- she sleeps exactly like I do! Her day went pretty "normal" for her, she's a little more jaundiced today but that's nothing to stress about. We attempt nursing at her feedings but she is getting what she needs from the bottle...needs more calories so they amp up my breast milk so she gets the amount of calories she needs, since she burns more with her breathing. I've gotten a little attached to our day nurse. She knows more about Maddie than I do, which is a tough realization but Anne is who Maddie needs right now. My "mothering" is limited here...one thing I'm looking so forward to when we get home. She lets me do "my thing" whenever possible and usually I don't even ask, she just tells me when I can have my opportunities. Today, I got to hold her for the longest time. I reclined back in a chair and had her on my chest, felt her rapid heart beat on mine. It was so therapeutic for me and her, I think. We have a Cath procedure scheduled on Wednesday and met the renowned doctor today. Will talk more tomorrow with doctors about this. But we feel comfortable and very hopeful in what their ideas are to help start the process of fixing her heart. We also had visitors today, Bryan's Aunt Nicki and cousin Michelle, they brought us all sorts of yummy goodies and magazines that will come in handy during all of our "down time"! My cousin Jenni has also visited a couple of times as well as went shopping for us...we were lacking some clothes after rushing over here!

Our favorite Nurse, Anne...letting mommy feed Maddie a bottle!

Day 3

Hope you got our email...finally sent one out to announce Madison's arrival. We also posted some pictures of her, shortly after her birth and I'm starting to label the posts by Day #. So look back in the blog to see her first photos. We had a good day today and are growing and bonding with our little girl. I nursed her today and we do get to hold her frequently, change diapers, burp her, etc. I even "decorated" her little space (I think the nurses sensed my "Martha Stewart" ways and they rolled out a big cart full of supplies.) She's had more trouble breathing over the past days, her chest showing lots of movement, stressful. Her oxygen SAT levels are very high- upper 90's, which at first we thought was a great thing, meaning she was more normal like our levels would be. Not for a heart defect baby though. What this means is too much blood is going through her lungs (via her ductus that's opened in her heart with IV) and what this is like for her is she's sprinting or running hard most of the time. She has been really tired too. The doctors decided to put her in a nitrogen tent to get these SAT levels down. This contstricts the amount of pure oxygen she's getting and by putting more nitrogen in the air. We're learning so much. She also looks more jaundiced today and may need some lights tomorrow. We're going to bed here in a little bit, tomorrow is a big day. The doctors, cardiologists and surgeons are meeting to go over her case and possibly decide on a surgerical procedure and set the date.

The little boys came up with Uncle Ryan and Aunt Jess yesterday. It was so good to see them and spend a little time with our boys. They both seem to have grown a foot and change so much. They are handling all of this very well and have enjoyed themselves. We took them back to see Maddie this morning and in their quick visit, Cade loved her tent and wanted to see her little toes. Jace was wondering why we can't bring her home today. We enjoyed having Mike, Lesa & kids here as well, also our moms. Mom and Nancy went home for a day or so to get caught up and organized before coming back to stay a while. We're so blessed to have such a wonderful family and support group.

Today was also a baby shower back home for Maddie and I, as well as for our friends, Lisa L. and her baby girl (due April too). What a surprise that Maddie came EARLY and we missed out on the fun! We thought of you and missed all you girls today...

Here she is! Days 1 & 2

Here's some pictures! Bryan spent all day with her off and on yesterday and I got to go see her last night on a "4 hour pass" from U of W. I was able to hold her for a couple of hours and tried nursing...I ended up giving her a bottle, which was fun. She's learning the whole "suck, swallow, breathe" method right now. She's still doing well...but we are keeping in mind that things can change quickly. The nurses and docs reinterate this every time we mention how well she is doing. And, notice the blue???? Just can't escape it! I asked the nurses that she has a pink blankie on today!