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.

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.

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!

Surprise...She's Here!

Well, the plan did not go as planned. Madison Grace decided to come a little early...35 weeks, 4 days. My water broke at 2:30am on Wednesday night so we drove 90 to get over here in time. I labored all day with the help of Pitocin but this just didn't go smoothly. My mom and Bryan's folks came right over and stayed with us all day as I labored off and on all day. Derek and Carly also made the trip over and Derek gave me a very nice blessing, which helped calm us down and regained our hope amidst the shock that this was happening a month early. Maddie began showing distress right before 10:00 pm and I was rushed into the OR for an emergency C-section (the umbilical cord had prolapsed and was coming down first). Dr. Suzanne Peterson & Dr. Nathan performed the C-section, luckily one of the first things they learn is what to do in case of a prolapsed cord...keep it from getting compressed by the babies head! Thanks to Dr. Nathan, he did just that by riding on the gourney with me!

At 10:07 pm, March 13th, she arrived, weighing 5 lbs 14 oz. and was 19.5 inches long. She is doing wonderful- breathing on her own, her prostaglandin IV is in (which helps her heart function until her surgery) and she was sent to Children's last night, with Daddy going along in the ambulance with her. I was able to see her and even "half-way" hold her before she left. She's absolutely beautiful and pretty fiesty already. She is just being monitored in the NICU at Children's for the next couple of days. Maddie handled all of this chaos very well and her lungs are showing maturity (even being a few weeks early). Apgar scores were first a 3 then 9. We've already fallen more in love with her and are very impressed with how she's taking to life outside the womb. I'm still here at University of Washington Medical Center (Seattle) hopefully will get released tomorrow sometime if I can pass all of the "tests". I'm doing good, just very tired and sore. The past 36 hours have been very eventful, so we're still getting our minds wrapped around all of this. Since I'm confined to the bed, I had time to announce our little girl and ask that you continue to pray for our precious baby.

Nesting

It's been awhile since I've last posted...really no changes around here. Just CLEANING and PROJECTS! Funny how when you're pregnant, that nesting bug hits you. I've been infected with it over the past month. Maddie doesn't have a bedroom, so hers is the corner of our room: a nursery nook. My mom came out Monday and we tackled painting my bedroom (she did most of the work) and over the weekend, I tiled our hall bathroom with linoleum stick-on tiles! Nothing like waiting until the last month of my pregnancy to complete these jobs that have been on my "to do" list for a year! As for the pregnancy, it's going well. I'm getting big, going weekly to my doctor in Moses Lake for Non-Stress tests and weekly appointment. Our next appointment in Seattle is Mar. 24th. If I show some "change" and baby looks ready, the induction will probably be scheduled. The doctors have always talked about inducing between 37-39 weeks, which would be the earliest in 2 weeks! I am feeling like it will be somewhere around that first week of April. I turn 30 that week, so who knows, maybe we'll share the same b-day. The little boys are getting excited. They know that their "vacation" is starting when mommy goes to have Maddie: staying with grandparents, aunts and uncles, being entertained to the highest and getting to do almost whatever they please! What every preschooler and toddler dreams of! I hope they'll want to come back home and live here when we get home with Maddie- Makes me a little nervous. All in all, we're hanging in there and just starting to count the days down. Spring is finally here and with that comes hope and renewal. Maddie couldn't be arriving at a more perfect time of year. We're nervous yet getting very excited to meet our little angel. Coming soon...a picture of Maddie's corner!

Baby Shower for Miss Maddie

The term, "I'm tickled PINK" says it all! My wonderful sister-in-laws, best friend Carly and aunt Kerry threw such a fun baby shower, open house style, for Maddie on March 1st. The guests included just family and a few of the grandma's closest friends. Let's say that she's set!!! Outfits for all occasions and accessories too! Little girls are so much fun!