12/30 update

Hello everyone,

It was a really good day today. Natalie looked great this morning; her color is better, and she was very attentive and interactive. Oh yeah, and the Vikings beat the Packers!!!!! We're going to the playoffs!!!! Oh, sorry, got sidetracked.

Everything looks really good for Natalie. They've taken her off of her steady drips, and everything is given to her intermittently now. We've been able to feed her with a bottle. She's kept down the Pedialyte, but milk hasn't stayed down so well yet. They'll be watching this week to see how her feeds go and wean her off of the sedatives they still have her on. They think we'll be moved out of the ICU sometime this week, and then we'll probably still be here for about a week after that. They're still not sure, that's very tentative. We're ready to get home.

We went uptown yesterday and had some really good Italian food. We also got to see Paul Revere's house and a couple of other cool historical sites. We were going to go to Mike's pasties, but the line was out the door. There is no pastry that's worth waiting in line that long. It snowed here yesterday, so that was cool. It was a pretty walk to the hospital this morning.

That's about all we know. Hopefully, we'll know some more tomorrow. Go Vikings!!!!!!!!

 Playin' with daddy.

 Chewing on things again.

A new hairdo.

A snowy morning in Boston.

Mom & Dad Holding Natalie

 Yummy wires

Hanging out with Sniffy

No more breathing tube!

Ding Dong the Tube is Gone, that mean old tube, that wicked  tube. Ding Dong the Breathing tube is gone!!!!!!!!!!!!

What a wonderful morning. Last night I slept like a kid waiting for Christmas morning.  Today we get to hold Natalie!!!  Her breathing tube is out and she is napping so peacefully.  She must be even more relieved than we are.  It was a long 10 days of waiting, but it's finally here. Now that the tube is removed we can hold her and she is more mobile.  I am sure that she will like being held again.

They are going to start weaning her off  of the diuretics now that she is more mobile. Mobility helps her to get rid of some of the fluid on her own.  She is  still getting a little oxygen pressure to help soothe her throat and help her lungs adjust.  She is doing very well, even better than we anticipated.  Amen, Praise the Lord!

We are still in the ICU and we are not sure when we will be moved to recovery. She still needs to be monitored very closely.  We know the plan for today will be to keep getting fluid off the lungs and napping a lot!  Sleep is good for her.

Thank you softball gals for the gifts.  We are staying caffeinated and that is always a good things. Your cards and gifts definitely help to  bring comfort to us and takes away some of the stressors in our lives. We can't thank you enough.  Brad, Natalie and I look forward to watching you all play next summer.  Rose and Andrea, that means one more year. You already adjusted to them moving the bases back a few feet, so what else is there!  Thank you all for your kindness and for praying for us during this time.  Nat will be running bases with you this summer.

Here is a picture of our dolly without her breathing tube.  Yeah!!

12/26 update

Hello everyone,

Once again, there isn't a whole lot of new news for today. Natalie still has her breathing tube in, and it looks like that won't come out until tomorrow or Friday. They want her to retain less fluid in her body before they remove it, so they've increased the amount of diuretic so she can get rid of more fluid. She is still resting a lot, as she's still under a lot of sedation. They've decreased the morphine, so hopefully she will be completely off of that by tomorrow. They will see how she handles being off of that, and go from there. It's a really slow process, and it's hard to be patient; but we're doing our best.

Again, we want to thank everyone for all of the prayers, thoughts, support, and generosity. Heidi and I are very thankful for all of the great people that God has put in our lives. We forgot to thank Gordon, in our post yesterday, for calling and checking in with us, and praying with us throughout this ordeal, and I'm sure there are others that we forgot to mention.

We will post more tomorrow; hopefully we'll have more news to share by then. This recovery has been much slower than after Natalie's first surgery in June, so hopefully things will start to progress more quickly. We just have to remember that this surgery was much more invasive than the last one (patience isn't exactly my strength).

 Family Christmas in the ICU.

 Her eyes opened for just a minute.

New sheets.

Merry Christmas Update, and a thank you

Hi everyone, and Merry Christmas.

There isn't a whole lot new today; Natalie is a little more awake, but not much. She opened her eyes a bit, but she's still under quite a bit of medication; so she's still sleeping for a majority of the day. They removed her chest tube yesterday, and decreased some of her medications; so that's a solid step in the right direction. They aren't going to take out the breathing tube or anything else until Thursday, at the earliest. So, we're just waiting patiently. We'll spend the day watching Christmas movies in Natalie's room.

We want to say thank you to everyone who has been praying for Natalie and us during this time, and to those who have been helping us. My brother and his family have been taking care of our pets and our house for us while we're gone, and that has helped a ton. It's a tremendous help to not have to worry about things like that, and to be able to focus on our daughter. We also want to thank all of my co-workers at MDU for the package they sent. We got home last night, and opened the box they sent with all kinds of snacks, gift cards, and other things to help during this time. The candy is awesome (yes, I tried everything at least once last night), and so is everything else. So thank you to Rita, Karen, Carla, Genny, Eric, Tyler, Sara, Amy, GaeLynn, Tamie, and Garrett; also our friends Tom, Kellie, and their family.

I'm done typing, here's Heidi.

Last night was a bit like Christmas. We spent the evening opening a few cards and care packages and then snuggled up to watch a Charlie Brown Christmas.  It wouldn't be Christmas without watching that one. We are going to settle in for the day here with Natalie and watch a few movies and take a nap. Just what I would be doing if I were at home:)

Thank you to Kendra Bachmeier, April Wahl and the ladies from your women's church group.  What a wonderful gift. Your thoughtfulness is overwhelming and we are so appreciative for everything and I can't wait to take pictures of our family.  We haven't taken any photos as a family yet.

Thank You everyone who have given us strength through their thoughtfulness.  Phone calls, text messages, cards and gifts all have touched us in a very unique way!  Thank you for helping us celebrate Natalie's surgery, her health and the gifts that God has given us.  Thank you for a family that supports us and thank you for our little family of three. We miss Ranger and Pharaoh and can't wait to be home with them.

Merry Christmas to everyone and we hope that you all enjoy your time together! 

Here are a few pictures of the House that we are staying at as well as a few pictures of Natalie from yesterday and her first Christmas!!!  We even got to wake up to a white Christmas.  We walked to the hospital as the snow fell lightly. It was a beautiful morning!

Love to you All!
Brad, Heidi and Natalie Henke

 The Front of the Yawkey Family Inn

Our room is the little window to the right of the ramp.  You can barely see it sticking out!

 Thank You Aunt Shelia for the gift.  Just in time for the playoffs!!!

 Larry the Lightening Bug and Sniffy from MDU came to help take care of Natalie.

 Natalie's Gifts

 Merry Christmas!   It's hard to wake up after 7 days of sleeping!

Thanks MDU Crew...  Love the socks!

Our Hearts!

Day 6 of waiting to see little Natalie's blue eyes again.  We spent another day watching and waiting for pressures to stabilize.  Tonight, they lifted the paralytic about 30 minutes before we came home. We hope that this will be the beginning of coming off of sedation and getting on the road to recovery.  We miss that wacky little girl playing peek-a-boo with us.  She is a nut and we can't wait to see her smile again.  The doctors are still very impressed with how good she is doing and how good she looks.  Brad and I find ourselves watching her chest and her little heart beat and continue to be amazed and so grateful for what they have done for her.

The plan for tomorrow is to watch her pressures when she is off of the paralytic, and hopefully the sedation too.  They are still giving her a lot of medication for pain. There is about 6-8 different lines running into her, so every one that they remove is a hurdle.  They are still trying to get fluid off of her. She is starting to look much more like herself .

Yesterday, the hospital sponsored a Christmas Store for all the families that are spending Christmas in the hospital. It was amazing to see all the donated items. Each family could get 3 board games, 2 stuffed animals and some stocking stuffers and then still had 6 tickets to get other gifts.  Once you picked out your gifts you went to the wrapping room to wrap presents and have some snacks.  We grabbed a few gifts for Natalie, and a board game for us to keep busy.

I think about all the bad things that are happening in this world right now. Experiences like this bring me back to the good work that God is doing in our world.  I think about how fast the bad news travels, and I only wish that people would hear about all the good things that happen, too.  It's too easy to focus on the bad and forget the love that God shares with us everyday. Thank you Lord for bringing us back to the reason for the season. The giving of the ultimate gift.  The Gift of Jesus!!! Thank you, Lord God, for providing us a way to be closer to you and a chance for us to have everlasting life with you. 

As we get ready for another Christmas, even though we are far from home, we are together.  Brad and I hope for Natalie to be awake and comfortable with her new present. Her new heart.  I think we all got a new heart for Christmas. Not new, but newly transformed.  We hope that everyone has a Merry Christmas and are blessed with family and friends.

Here are a few pictures from the last two days of Brad and I passing the time. If anyone has any good words that use the letter z, x or q, let us know:) Also, Go Vikings!!!! I hope that there is one more big win in their bag of tricks.

 Santa with his toys.

 Playing Pac-Man. Brad's up 2-0.

 Another favorite for passing time.

Natalie and dad watching the Vikings clobber the Texans. Go Vikings!!!

Sunday update: waking up again

Hi everyone,

Sorry we didn't update yesterday, but there really was nothing new to share. They kept Natalie asleep, and she is recovering comfortably. Her pressures look really good, and they think they will try to discontinue the paralytic again today and allow her to slowly wake up again. Heidi and I are excited to see her open her eyes, although that is unlikely to happen until tomorrow. It takes quite a bit of time for the paralytic to wear off enough to allow her to function that much.

She is looking much better, as the swelling has gone down considerably. Her skin is much warmer, and she looks much more like herself than she did a couple of days ago. We're waiting patiently, and we will update more thoroughly tonight after we get more details from the doctors.  Go Vikings!!!

Here are a couple of pictures from this morning.

 

 After her bath, with new dressings. She now has a watch dog.

The gift of friendship

Another day with Natalie bug and another day of looking at my child and wondering when she will get to wake up.  You must understand that this kid doesn't sleep, so the whole concept is a bit foreign to us.  Natalie usually takes about 3- 25 minute naps in a day and then hits the hay at about 7:30. We've been told that she naps up to two hours when she someone else watches her, but Brad and I don't ever get that lucky!  So for us to see her sleeping for the past four days has been very tough.  We want to  see those big blue eyes again. We are not sure when they will try to wake her up again. We hope that when she does get to wake up, all this extra time sleeping will help to speed up her recovery.  We can't wait to see her smile again.  We will continue to sleep at the Yawkey until she is awake so that we are well rested and able to help her when she needs us.

I never thought I would say this, but I miss Natalie waking me up in the middle of the night to nurse. This pumping thing sure gets old and is so much less rewarding.  They have started trickling in some breast milk for Natalie now, so that is very nice to see. At least she is getting something in her belly beside just the nutrition drip. I used to wake up a few times in the night to feed Natalie and watch out her window to see the night sky and keep up with the college kids partying down the street. I miss holding her and snuggling her before putting her back in her crib and kissing her goodnight.  I then trip over the dog and get the cat out of my spot in the bed and get back to sleep. Soon, soon I hope.

This trip to Boston has left both Brad and I feeling very humble and aware of God's presence in our lives everyday.  Each day something new makes us say, "God is so good!" I have watched how God has shaped my life over the past few years and I connect all the dots and say to myself, "now I understand!"  As we continue on this journey we are blessed with the kindness of those who care for our child and those who we have met here in Boston. We have met families that have come from China and Ireland to have their children cared for at Children's and we are blessed to be here.

Thank you to everyone who has supported us throughout this journey.  Family, friends and new friends that we have made during our trip have humbled us with their grace and kindness.  We had a wonderful dinner tonight thanks to the girls back home and we were welcomed home after a long day by a gift from the Lockwoods.  We can't begin to express the gratitude that we feel. God has put some pretty amazing people in our lives and we are so fortunate to call you all friends. :) 

So good night for now and we hope to have some good news to report in the morning.  I am off to do chores now.

We love you all!

December 21, the world is still here.

Hi,

Well, we had a small setback (sort of) yesterday evening. They said that Natalie's pressures were getting a little high while she was coming off of the paralytic, so they put her back on it. This is normal, as they usually will take children off the paralytic just to see how the body reacts. She is still doing well; better than expected, actually. So, everyone is still happy about her recovery thus far. It's hard for Heidi and I to see her unable to move, and just completely knocked out; but, it's what is best for her.

They hope to try to discontinue the paralytic again sometime tomorrow, after she has lost more fluid, which will reduce the pressure on her heart. This will help her pressures to be lower as she begins to move and slowly wake up. It's a long process with a minor setback here and there. The doctors say she is still doing extremely well, and they are encouraged by her recovery. So, there probably won't be too much news to share before later tomorrow, but we'll be sure to keep everyone posted.

It's raining really hard here today, but it's kinda' warm. It's almost 50 degrees, so that's much better than what the weather is back in ND; so I hear. We found a gym close by, so that gives us something to do on these uneventful days. Thanks for the prayers and for keeping up with us.

Here are a couple of new pictures.

December 20th! Wake up day!

Sleep! What a concept.  I haven't gotten this much sleep since I was about 4 months pregnant; before I was up every hour to use the restroom, pump or feed Natalie.  I sleep with her puppy that she got from the Lockwood family to get it ready for Natalie.  Okay, you're right, it's to make me feel better:) It has been great to get a little bit of sleep.  I feel like this will help us to give better care for Natalie when she wakes up! 

Speaking of waking up, today is that day for the bug!  We got here this morning and they let us know that they have taken her off the paralytic, the cooling mat that cooled her body and have removed the drain tube that was in her mouth.  Yeah!   They will keep her sedated, but removing the paralytic will let her move. This will help them to slowly test the heart and body.  Yesterday when she heard Brads voice she started to move her legs and hands, so they had to give her more paralytic to stop it. What a feisty little thing she is.  They will be watching her pressures in the left atrium to make sure they are in the normal range of 4-10.  It used to be about 14-18 before the surgery. This morning it was at 7-8 and she was doing well.  Throughout the day they will place a feeding tube in her nose and start to give her a trickle of food.  She is doing well and the nurses from OR stop to see her daily. 

We are doing well. Here are a few updated photos:

 Natalie's tree in her room

Send pictures! We can put them in her room!

December 19 update

Hello everybody,

We're having a much more calm day today. The surgery went really well yesterday, and Natalie is in NICU recovering. Her pressures and stats continue to look really good, and we'll be watching closely today and tomorrow to make sure her heart keeps responding positively to the surgery. They are keeping her paralyzed and asleep so her body can recover from all she has been through. Hopefully, they will start reducing the amount of muscle relaxers tomorrow, and they'll slowly allow her to wake up throughout the end of the week and over the weekend. The tentative schedule is to have her in the NICU until early next week, and then she'll be moved over to the recovery wing. The length of her stay there will be dictated by how her body recovers. We won't really know how long we'll be here until we're further along in the process. Again, Heidi and I are thankful to our employers for allowing us to be here with her. Thank you all, again, for all of the prayers and support. We'll keep you posted on her progress.

First hour out of surgery, lots of machines, tubes, and wires.

Christmas comes Early in Boston!!!

They have finished with the surgery, and we are just awaiting for them to move her upstairs.  It will be another hour, but she is looking great.

Dr. del Nido just came and visited with us about the procedure.  He shared how the procedure went and said that she is doing great.  Her heart is looking good and the pressures are all adjusting. The next 48 hours will be the true test, but she is responding well to the repair.  They found another little hole in her heart, and closed it along with taking down the hybrid surgery and stints and repairing the holes.  They removed some fibrous tissue in the  tip of the left ventricle that uncovered a small pocket they didn't know was there. This actually added more volume to the left ventricle.  

Dr. del Nido said that they are highly pleased with her progress and we will continue to watch her closely over the next 48 hours.  Once that time has passed he feels that we will be one the way to a full recovery.  We are so amazed and so blessed. 

Please continue to pray that she recovers quickly and is comforted from pain.  We can't wait to see her!!!!

Merry Christmas from Boston!!!!!

Yawkey Life

Several people have asked for us to post the address of where we are staying.  Please address everything to the following address.

Yawkey Family Inn
Henke Family
241 Kent Street
Brookline MA 02446

Mail is welcome as long as it's not BILLS!!!  We have enough of those!

Amazing news

We just got another update, and it was very good. They finished the initial procedure, and then finished evaluating that procedure. It was working as planned, and they are moving forward. This means that she now has a normally functioning, two ventricle heart; just like all of us have. There should be no more surgeries in her future, and she'll be on the road to a full recovery. Heidi and I are very grateful for this, and I'm not sure it's really sunk in yet. Thank you for the prayers, everyone; this entire scenario is nothing short of a miracle. When we learned of her condition a year ago, we were expecting three years of surgeries, followed by a rather difficult life for Natalie. But, now we look to be done with surgeries, and her life is going to be almost as if it were if she were born without this condition. We thank God for this. We'll update again later on after Natalie is up in her room in NICU resting, and we know for sure that the surgical process is complete.

Update- Evaluation of Bi-Ventricle Repair!

We just got an update on Natalie.  The repair is finished, and they are in the evaluation stage.  They will evaluate how the heart is functioning and see if the repair will work for Natalie or if they need to do a different repair.  Mainly, they will be watching to see if  the  left ventricle will handle the work load. She is technically on the bypass machine, but her heart is beating as they evaluate. It may still be several hours before we have a final outcome, but this is good news. She is doing wonderfully!  We should get another update in about half an hour. Praise God!

Surgery Day

We wanted to keep everyone posted on the plan for today. Natalie was admitted at 7am this morning.  Let me correct that, she was checked in at 7 am and we finally got headed back to anesthesia about 8:30.  Brad toted her around the majority of the morning taking her to look at all the Christmas decorations.  I felt terrible holding her knowing that she was hungry. I felt like I was torturing her by not feeding her.  Poor little thing was so hungry.  Once we got back to anesthesia they gave her an oral sedative and then I got to snuggle her one more time before they took her back.   I know it will be way too long before I get to do that with her again.  We all got one last minute to snuggle.  Once they took her, Brad prayed for us and I felt much better. 

These updates will be short as we only get a little bit of information.  They took her back at 8:45 and called with the first update at 10:15 to let us know that she had done very well with anesthesia and the Doctor del Nido had made the incision. The plan is that they will call us every hour and a half with an update. They will let us know when they put her on the heart and lung machine, and when they take her off. 

We are back in the room after having a walk and some breakfast.  We are not sure what we will do all day, but I hope a nap is on the schedule somewhere.

We will keep you posted as the day goes, but they do not expect her to be out until early evening. They plan to keep her heavily sedated over the next few days so that she can heal better and rest more comfortably.

Thank you to all the friends and family and others who are praying for us.  We appreciate the time you take to think of us at this busy time of year.

Well, they called us while we were getting ready to post this. So, they put her on the heart and lung bypass machine, and just started the actual repair on her heart; everything is going well. It will be an incredibly long day, but all is well so far, so we're thankful. We will do quick updates when we get them from the surgery room, so I'm sure we'll post again in another couple of hours.

Tomorrow is the big day

Hi everyone,

Well, tomorrow is the big day. We go in at 7:00 am to check in and get started. They will give Natalie an oral sedative to begin, that way they can give her IVs and do other prep work without causing any additional stress. We will get to give her one last hug, and hand her over to the anesthesiologists. That is the toughest thing I have ever done. A parent handing over his/her daughter to a stranger and putting her life in his hands is hard. We draw comfort in the fact that she is, in fact, in God's hands.

We had another discussion with Dr. del Nido today. It is really comforting knowing that we are giving our daughter to the best surgeon in the world for this type of procedure. I told Heidi that it's like talking basketball with Michael Jordan. He (Dr. del Nido, not Michael Jordan) thinks that the surgery will go well, and that she will have a fully functioning, two ventricle heart when it is all over. If that's the case, then Natalie won't have to endure another one of these; thankfully. There is still a slight chance that the heart won't respond well, and they'll have to change what they've done. Then they'd have to come back later (6-12 months from now) and try again. He thinks this is highly unlikely, and is optimistic that everything will go as planned. He just wants to make sure we're aware of the possibility. Once again, it is an awesome feeling to be able to sit and have a conversation with the best in the world. It is very reassuring and comforting. God has put Natalie in the hands of some very capable and talented people in her short life. Dr. St. Louis in Minneapolis, and Dr. del Nido here in Boston are truly blessed with talent.

Well, I'm done for now. Hopefully, we can manage to sneak in a little sleep tonight. We really appreciate all of the prayers and support we've gotten from all of our friends and family back home, as well as our church family at Century Baptist. I also have to thank MDU for allowing me to spend this time with my family. I haven't been there long, and they could have easily told me that I had to come back to work. It's a true blessing to work for such an organization. I'll turn this over to Heidi and let her say a few words before bedtime. God bless.

Brad has done such a nice job, I am not sure what to add.  We love this little squirrel, as Brad calls her, more than we ever could have imagined we would. She is just such a bright eyed and inquisitive little girl.  She wants to see and touch everything.  She even started trying to drink from a cup this week.  It will be hard to have a set back just as she has become so social and outgoing.  She loves to see new people and engages them as they pass by.

I laughed about the size of the beds at the Yawkey house, but it may have been a small blessing allowing me to learn more about Natalie and snuggle her every night.  I will still be happy to get back home into a bigger bed, that is for sure.

We continue to meet some great people here.  As hard as it has been to give up the comforts of home to live in the Yawkey house, we have been blessed to meet some amazing people.  Our new friend Tyler has been here 14 times for back surgery. He is such a bright and friendly young man and is only 13 years old.  He gave Natalie a note that said, "I know what you are going through, and when the going gets tough, Go On!  Never Give Up"  He was the biggest sports nut I have ever met. I can't wait to see where his life takes him. Some team better snatch him up, because he knows football  like no other 13 year old I've met. We will always cheer for the 49ers, Just for him.... Well unless they play the Vikings of course. Tyler,  thank you for blessing out stay and making us feel normal, even if it was only for a short period of time.  We will miss seeing your smiling face here. 

Life at  the Yawkey is good and we are fortunate that they have room for us here through the middle of January if we need it.  Small community groups come in and cook or donate meals most nights. We met some folks from the Boston Bruins one night and a church group last night.  It makes Brad and I think about how we should be giving more back to our community and the people who are in the same position as we are.  God once again, shines through the people who love Him.

Well we better try to get some sleep and spend sometime, just the 3 of us. It will be the last night for a long time that we get to be together just the three of us.  We love you little bug and we can't wait to spend the rest of our lives together...

Christmas in Boston

 

                                                         Bright eyed and bushy tailed.

                                                           Not anymore. Sweet Dreams.

The science of it all! But no big words today!

I just realized I forgot to tell you all exactly what they will be doing during the surgery.  They will separate the heart circulation and make it function as a normal two ventricle heart.  To do this, they will take down all the PDA and Ventricular stints that were placed in prior surgeries, along with repair any damage to the aorta from the stint.  They will also remove the pulmonary bands and repair the scar tissue.   They may need to remove some scar tissue that built up in the tip of the left ventricle.

Currently, Natalies heart is what they call a mixer. Her blood from her left and right ventricle mix via the stints and then is sent out to the body. The surgery will completely separate the blood flow and make the left and right operate independently, the way that ours does.  That is the goal.  So there is your anatomy lesson today minus all the scientific terms.  I hope that helps.

Yep, Christmas in Boston.

Hi everyone,

Sorry we haven't updated, but we really haven't had any news until very recently; so here you go.

The surgeon stopped and talked to us this morning, and we are going in for surgery on Tuesday at 7:30 am. They were very surprised at the amount of growth in the ventricle in Natalie's heart, as it has grown over 30% since we were here last. The volume in the left ventricle in a normal heart is between 40 and 60, and the volume in Natalie's is now 52.

Well Brad just handed over the computer to me, so I guess  you are all stuck picking out the pieces of information about her surgery from my jibber jabber.  He can go figure out how we are going to watch the Viking games tomorrow.

Natalie's cath went very well yesterday, and she is slowly recovering today. It's been along day and she is still a bit agitated and unsettled. Her little throat is still a bit sore so she sounds a bit horse.  Brad says she is practicing her quail calling. 

We have learned over the past year to not ever make plans based on the first statement that the Doctors make.  This applies to check out times, doctors round times, meeting with doctors and of course, the next step.  In this case we are happy to know that the first plans that the doctors had are not what will happened next. After speaking with Dr. Del nido today we are happy to hear the numbers and know that Natalie is ready to move forward. As Brad mentioned, her numbers from the MRI are very good.  Natalie's heart has grown over 30 percent and her blood volume in here left side is now at 52.  He also said that currently Natalie's left ventricle is already doing 60 percent of the work.   This is great news. In previous discussion they talked about recruiting part of Natalie's right ventricle to work with the left, but since her left is of adequate volume and function they feel there is no need to do that.  That procedure would have been very intrusive and would have been a more difficult recovery so we are thankful that we will not have to do that.  Dr. Del nido feels that once she makes it through this surgery there would not be the need to another surgery. Amen.  So Tuesday we move forward. It's going to be a long few weeks, but we know that it's the best for Natalie and she is stronger and bigger now and as always God is with her.

It's amazing to look back of over the past year and see exactly where God has had his hands on our journey with Natalie.  We were very fortunate to find out about her condition at 20 weeks of gestation and plan for her arrival in Minneapolis.  Our surgeon at U of Minnesota encouraged us to not have the stage 1 surgery, but instead elect for the Hybrid procedure that would allow increased blood to Natalie's left ventricle to help it grow. (His idea was not fully supported by other staff, but Brad and I both felt it was the way we should approach Natalie's heart repair.  The goal was to have 2 ventricles and not 1 at the end of this.  Thank you Dr. St. Louis for giving us this option!)  Doctors in Boston agreed to take her case and they have been fabulous.  Brad and I are both so blessed to work for wonderful organizations that put family first; not only by words, but in action. Brad will be able to stay here in Boston with Natalie and I thanks to MDU and the YMCA.  Our family might not be home for Christmas but we will all be together.  God has been working overtime for us in this season of our lives; and we have much more than we deserve.

We have met some wonderful people over the past year and we continue to do so here in Boston.  God is good. All the time.  We pray for all those little heart kiddos out there and even the older heart kiddos!  Lockwood family, we thank you for the kindness that you showed us. Natalie is playing with her puppy as I am typing.

The plan for the next few days is to snuggle, snuggle and snuggle some more with Natalie. They say that she will be heavily sedated for the first 3-4 days after surgery so we have to get all her snuggling in now while we can. We check in on Tuesday at 7:00 am.  We will keep everyone updated as she moves through  the surgery and once she is in recovery.  Thank you all for your prayers, and we hope that you have a wonderful Christmas.   I'd better take care of the rugrat! 

Christmas in Boston?

Well after a long day, Natalie is out like a light.  She did so well today. We started early this morning with EKG, blood draw and X-ray.  You would think after looking at that list the tough part was over. Well truth is that was the easy part.  Tough for Natalie because  of the pokes and being held down, but she did so great. She smiled at everyone and made people smile all day long.  She must have found her voice, because she was squawking and talking all day.

As I said that was the easy part.  As we finally approached our time to meet with the doctors, all our lead up conversations kept throwing up this red flag that Brad and I tried to avoid hearing: SURGERY. We knew we would be here for the cath and after several conversations with the nurse practitioner over the past few weeks, we let ourselves believe that we would be home in time to watch the Vikings win on Sunday.  After a conversation with the NP this morning, she said talks with the surgeon last evening led her to believe that we would most likely be admitting Natalie on Monday with her open heart surgery scheduled for Tuesday. Brad and I both just sat there with blank looks on our faces and in shock. What we had tried to avoid believing was real. Natalie will most likely spend her first Christmas on the 8th floor of Boston Children's Hospital in recovery.

Tomorrow we are lined up for another long day starting at 7 am sharp. We will admit Natalie for MRI, sedated echo and heart catheterization.  During these test the doctors will be looking at the heart and testing sizes, pressures and functions of the heart in preparation for Tuesdays Surgery. We don't know exactly what they will do on Tuesday until we meet with the doc's tomorrow evening and even then, we won't know what the surgeon decides to do until he is in the heart and performing  the actual surgery.  The one thing that we all know is that the goal is for Natalie to end up with a two ventricle heart when this is all done.  We know that they will do what is best for Natalie.

The science behind all this is so amazing and God has given these doctors amazing talent and knowledge to be used on his tiniest little sheep.  I just wish our little sheep didn't have to go through this.  She is not alone.  We are all praying for her and she is very strong and healthy.  We thank you all for your prayers and support.

We better get to bed now as morning comes quickly. Natalie is snoozing and Brad and I are cuddled up in the single bed preparing for a long day tomorrow. Natalie and I are sharing the "big" bed.  It's a double.... Brad gets the single bed all to himself. Lucky Man.

We will keep you all posted tomorrow night after we learn more of the exact plan.   Good night!

We made it to Boston

Hi everyone,

We made it to Boston. We're relaxing a little bit, and getting ready for a long day of tests tomorrow for Natalie. She did really well on the flights today, and Heidi and I are very thankful for that. We have a 7:30 am check-in time tomorrow morning, and we expect to be there all day. They will be doing all of the pre-operative testing before the big day on Friday. We'll be sure to update tomorrow afternoon/evening when we know a little more. As always, we appreciate all of the prayers and support from everyone.

Now Boarding, Flight 1858 to Boston

After a few months of living in denial, except on Tuesdays, I guess it’s time to face reality again.  We leave for Boston on Wednesday, November 12^th for another procedure for Miss Natalie.

Over the past few months we have been seeing our cardiologist here in Bismarck and have been very optimistic that Natalie’s heart is actually growing and showing signs of increased function in the left ventricle. 

The hard part comes with the uncertainty of this visit.  I have such a hard time not knowing how long or what exactly is going to happen once we get there.  We do our part and take her to all her appointments and Dr. Fernandez says everything looks good and that is all we know. We really have no  idea on what will actually happen while we are there. Dr. Fernandez thinks that they may go in and dilate or enlarge the stint they placed in September or they may add another stint to increase the blood flow, or they might do something completely different. We have no idea. That is the hardest part.  We just have to sit back and trust the doctors that we have never meet and only talked with on the phone one time for 10 minutes.  She is our baby and we have no idea what they have planned for her. That feeling is just more than I can take now as we get closer to our trip.

We will check in on Thursday for all her pre-op tests. They say to expect to be there for up to 8 hours.  Are you kidding me?  Eight hours with a 6 month old. Then we will bring her back on Friday morning for her procedure. We will have to stop feeding her sometime in the early morning and I can’t imagine that will go over very well. Natalie is a great little eater now.  Once they take her back she will have an MRI and Echo before she goes into surgery. I remember so clearly the last time went sent her back. She didn't know anything was going on and she looked so little on that big bed. She was just looking around.  I can’t imagine what it will be like this time when we have been snuggling together for 6 months now and she laughs and smiles and talks now. It’s so different this time.

Once she is in surgery they will do a heart cauterization through her femoral artery and move into the heart where they will check her pressures, values and measure for growth in the left ventricle.  They can get the best look at her heart this way. After doing all of this they will determine the best plan for moving forward with Natalie.  Right now the plan is just to have the cath, but if they see something that they feel needs to be addressed now they have her scheduled for open heart surgery on December 18^th.

I pray that they come back and say that everything looks great and we can send her home to keep growing. I am not emotionally ready for a big open heart surgery and me being selfish, I don’t have any desire to spend her first Christmas in Boston.  It’s bad enough not to be able to go to Billings for Christmas, but to be in Boston for an additional 2-4 weeks after surgery is not high on my Christmas wish list.

When people talk about faith in God, this experience makes it all much more real.  Here, let me hand my baby to a total stranger and we will talk to you in about 3 hours. The only thing holding her at this time is the hands and arms of God.  Oh, how you believe in God at these moments more than ever. It’s a good thing that we are handing her over to the hands of God and he is not a stranger. Not a stranger at all. He has his hands and feet working on this earth every day. Praise God for the wisdom and talents that he has placed in the hands of these doctors who we do not know. We know God and he knows us. He loves Natalie more than we do, if that is possible.

Brad and I will keep you all updated through the blog and on facebook . Thank you to everyone who has been praying for Natalie.  We get weak and distracted.  I told Brad I can see how the disciples fell asleep while trying to pray for hours. I can barely make it 3 minutes some nights and that is where you all pick up for us. Your prayers and our prayers are heard by the same God!  He knows when Brad and I are weak and he hears all your prayers for us and gives us strength to keep going.  Natalie is so lucky to have God armies praying for her.  Thank you to everyone!

Here's to Chubby Little Legs:)

Long time no Post!  Sorry.  I was so inspired by a friends blog to do my own, and I think that I am failing in comparison. However, I am glad to be able to share with you more news on little Natalie.

She is AWESOME...  She is a new kid since we were in Boston. Brad and I joke about the miracle 3 month mark, but we both believe that her procedure in Boston relieved some pressure and created a much happier baby.  Since her surgery, she has been a different kiddo.  She is so happier and loves to kick and play and still loves to be outside. She no longer cries when she gets her diaper changed, instead I struggle to get her to keep her legs from kicking so I can get a new diaper on.  She is so strong, active and noisy:) And she loves to eat her fingers.  Sometimes she goes for the whole fist and we just laugh at her.  Just in the last week she has discovered that she can grab her toys and put them in her mouth.  Everything goes to the mouth including daddy's fingers.  She gets a little upset when she can't get her toys in her mouth.

Natalie's follow up visits have gone very well. She just lays there and looks at the monitor like she knows what they are looking at. She was awake, no tears or wiggles and not nursing to get through the echo. Good Job Natalie!  Our visit on Tuesday left us very optimistic.  Our echo tech said that he thought he saw growth in the left ventricle. I think my heart dropped to my toes and I couldn't stop smiling.  Then when we went to see Dr. Fernandez  he entered the room with a big smile.  His words, " Unless I am hallucinating,  that left ventricle looks bigger to me."  Amen.  He said that her pressures in her heart are dropping and the flow in her new stent is more left to right which are both signs of growth in the left ventricle.  Amazing what God can do.  He was very happy with her progress and how strong she is and how healthy she looks. She now weighs 12 lbs. 1 oz.  What a little chubber.  I love it.  She is doing so well and we are so happy to hear that her heart is doing well.

So what next???  About 3 weeks ago week talked to the doctors in Boston and they anticipated that we would have to come back to Boston in the beginning of November for Natalie to have open heart surgery again.  We were told to plan to be there for up to 3 weeks depending on the procedure they decide to do.  So we waited to hear from the scheduling folks to decide on a date.  The phone didn't ring and didn't ring, So the patient person that I am, I called Boston.  Good News!  The doctors in Boston have been reviewing her follow up and have planned another visit, but not open heart. They feel at this time they will be able to just have another heart cath and not the open heart. Not sure of what to think I asked the Dr. "Is that a gooood thing????"  She enthusiastically said, "YES!  That is a good thing!"  Dr. del Nido feels like the cath will be able to do what is needed and we would be able to hold off on the next open heart until next year when she is bigger and stronger. Through this all we have learned that nothing is set in stone and changes happen based on how Natalie does each day and each visit the changes that they see. However, Brad and I were both relived to hear that this next trip will not be open heart.  We are so happy for Natalie that she is doing well.  They anticipate that we will be in Boston in early December, but we do not have a date yet.  We also are not sure what procedure they will do during the cath. Our stay should be about a week unless things don't go as planned.  So once we know more, we will share.

The first trip to Boston was great for many reasons.  Natalie did great and is feeling better, Brad accepted an new job at MDU and will start October 1st and we got to visit and laugh with friends we had not seen in a long time and Natalie and dad bonded over many walks in the babybjorn. We hope that our next visit will be just as great as the first one.

Now we just continue to focus on Natalie getting stronger and try to relax and feel some sense of normalcy. Brad has been working hard to tile the bathroom floor and I have gone back to work.  Oh, and the the Vikings are 2-1.  Who would have thought:)  Pharaoh and Ranger sleep as much as ever and are adjusting to life with Natalie.  Pharaoh has pulled a few pranks, but is still a sweet puppy and Ranger lost ten pounds when we shaved him this summer.   Life is good in the Henke home and I am so proud of my husband for reaching his goals and still having so much time to devote to Natalie and me.  Thank you Brad!


Praise God for all the good things he has given us!

Please continue to pray for growth in the left ventricle and for chubby to get chubbier!!!

Out of the hospital

Good morning,

Natalie got out of the hospital yesterday afternoon, and we're hanging out in a hotel for a couple of days. We go back over today to get a chest x-ray, but that's about it. They want us close for a day or two, and Heidi and I will monitor Natalie in case something would happen. Then, we'll be ND bound on Saturday morning. Natalie is doing extremely well. She's happy and active, and we're going to go see some of the sites in Boston today. A couple of Heidi's friends are coming down from Maine, and we'll get to spend some time with them today. Thank you again for all the prayers, we appreciate it very much.

On our way out of the ICU!!

Hi everyone,

They are going to be here in about 15 minutes to take Natalie from the CICU and move her to a recovery room. The breathing tube came out this morning, and she ate her first meal since the surgery. She is a little uncomfortable, but is doing well. Hopefully, they'll discharge her tomorrow and we can still fly home on Saturday.

Surgery is over

Hello everyone,

Natalie is out of surgery, and is in NICU. They're waiting for her to wake up so they can remove her breathing tube. She'll be in intensive care until morning, then they'll move her to recovery. Hopefully we're still looking at a discharge day of Thursday, and we're able to fly home on Saturday.

The surgery went as well as it could have gone, and they were able to do lot while they were in there. We'll monitor closely, and we'll know our next steps within a couple of months. We'll update again tomorrow sometime. Thanks for all the prayers.

Catheterization Update

The docs just gave us the update for Natalie!  Natalie is doing very well.  They just placed the balloons in her pulmonary veins to increase blood flow.  Wee assume this is done to help the heart get more blood and hopefully grow the left ventricle.  They are going to start creating the hole between the left and right ventricles now.  We are just waiting patiently in the waiting room that doesn't allow for food drink or cell phone use.  GO ahead and insert the sarcasm in that last sentence.  Those of you who know Brad and me know that patience is now our strongest life skill.   Hope to see our baby soon!  I want to hug her and give her snuggles.....

First Boston Update!!

Hi everyone,

Well, we got to Boston on Sunday, and Natalie was admitted yesterday. She was just taken into surgery at 10:00, and she was sedated. They did an echo, and that was completed a short time ago. She just went into surgery. Today, they will be performing surgery via a catheter inserted into the femoral artery. So, they will not be opening her chest up again, yet. They will attempt to make a hole in her left ventricle. The purpose of this is to force more blood flow into the ventricle, thereby hopefully causing the ventricle to grow to the point where it can be a functioning part of the heart in the long term. This way, she'll end up with a fully functioning, two ventricle heart.

We will not know if this was successful for several weeks or more. We will continue to monitor on a weekly basis in Bismarck, and the information will be relayed to Boston. There will be at least two more surgeries even in the best of scenarios, so there is still quite a journey ahead for Natalie. We will continue to pray, and we appreciate all of you who are doing the same.

I'm not as eloquent as Heidi, I'm a little more brief in my writing. So, there's the short, to the point synopsis so far. I'm sure Heidi will have a better, more creative post later today. Stay tuned, and again, thank you all for your thoughts and prayers. We truly appreciate all of you.

I've never been to Boston in the Fall!

Hello everyone,
I've always loved the Veggies Tales and one of my favorites has always been The Pirates that Don't Do Anything!  I can't tell you how many times Brad and I have laughed about the video and joked about how we "have never been to Boston in the fall".  UNTIL NOW!!!

After speaking with the doctors at the Boston Children's Hospital we have decided to take Natalie there to continue her journey.  We look at her everyday and think, Wow! She is doing so well and looks so healthy, but we know that we are still just at the beginning of this long journey. 

Our goal has always been to make decisions that will give Natalie a long and healthy life and with her anatomy being so close to normal we wanted to give her the best chance to have two ventricles.  When we first sat down with Dr. St. Louis in Minneapolis that was our goal; two ventricles and avoid a possible heart transplant later in life.  Some of the cardiologists felt like we should go with the single ventricle repair because they didn't feel that the left ventricle would grow. I think they felt is was pointless and it would prolong the inevitable. Some of them thought the hybrid would give her a chance.  We didn't anticipate that that decision would lead us to where we are now. Had we not chosen to go with the hybrid we would never have had this chance to go to Boston.

Boston Children's Hospital has been following and reviewing Natalie's case since the beginning.  They offered a series of surgeries that will give her a chance to have 2 ventricles and we will be starting that process soon. After our last check up here in Bismarck Natalie's ASD is getting smaller and closing.  The ASD helps to keep the pressure down in her left ventricle.  As it closes, which is a natural process for most babies, her pressure rises in her left ventricle. So we need to act soon.

The first step will be to create the septum (hole) in the  floor of her left ventricle into her right one.  She has some unique anatomy.  The right ventricle grew a "tale" that wraps around under the left ventricle. (It's so strange to think about creating a hole instead of fixing one.)  The doctors feel this will help to regulate the pressure in the left ventricle like the ASD was doing.  Good news is that they think it can be done through her femoral artery in the cath lab instead of having to open her chest again.  Hopefully all will go well and they can accomplish what they need to without another open heart surgery at this time.  We are not sure when the next phase will happen.  They say  the best chance to recruit muscle tissue, like the heart, is when they are infants. I am sure the next step will be done as soon as they feel she is strong enough and ready for the next step, and if they see the results that they are hoping for.

With everything there is risk.  The single ventricle route is risking to.  Unfortunately, the next few years will involve a lot of risk and we pray that Natalie will do well. The doctors are very optimistic that this will be  successful and give Natalie a heart that is as close to normal as possible with 2 ventricles.  We pray that God will watch over Natalie and keep her as strong and healthy as she looks today.  Everyday she makes me smile. I noticed today that my cheeks were hurting from smiling at her so much.  I truly underestimated the love that I would have for her. I always knew I would have a  strong bond with her, but I never imagined it would feel like this.  I will have to upload some pictures so that you can all see how chubby her cheeks are now.  She is so beautiful!  We love her so much!

We pray for her left ventricle to grow and for guidance and wisdom to make the best decisions for Natalie.  We pray to be able to hear God voice and remember the grace that he has shown to all of his children.

The Road Less Traveled

Hello again everyone! It's been a while since our last post, mostly because everything has been going well and also because, wow, babies take a lot of time.  What happened to "Babies sleep all the time"?   Even when she is sleeping, there is still so much to do to keep the rest of our lives in tact.  Brad has been busy keeping the house and the yard taken care of along with taking care of his girls!!!  What an amazing man he is.  Natalie and I are very blessed to have such a hard working and loving man in our lives.  Brad is back to work now and I am dreading the thought of leaving my baby with someone else during the day.  It's so hard to think about being away from here all day long!

We have had several small appointments in Bismarck and made the trip back to Minneapolis once since our last post.  Natalie is doing so well.  You couldn't look at her and tell that she has been through so much already. She now weighs almost 10 pounds and has begun to get those chubby little legs that babies get. They are so cute and I love pinching them along with her chubby little checks!  She is such a sweet little girl.   She loves mornings, outside and her swing! 

Our last visit to Minneapolis left us with the next of many hurdles that we will face on this journey.  We meet with the doctor about Natalie's progress and were forced back into reality.  I think both Brad and I thought that if she was doing well with the hybrid surgery, she would simply have to have the bands taken off her lungs and we would move forward with life and a happy little girl. We soon learned that was not the case and that was just one step of the process. We still need to see growth in the left ventricle and hope that the arterial septum does not close.  They are continuing to watch that every week.  After the echo, Dr. K started to talk about next steps and that is where things get more complicated.  Because Natalie is doing so well and her left ventricle is healthy, just small, they have been researching ways to allow Natalie to keep both ventricles instead of going to the single ventricle pathway.  It sounds like she has been the talk of the town lately.  They have been meeting with Boston Children's Hospital to discuss ways to move forward with 2 ventricles if possible.  We will be meeting the doctors next week to talk about a procedure that has not been done before, but would possibly allow Natalie to have a 2 ventricle heart and avoid a heart transplant in the next 15-20 years.  This procedure has not been done before but with Natalie's unique anatomy they are hopeful that they would be able to create a hole between the left and right ventricles. Later they would use part of the right ventricle to increase the size of the left.  I know that is hard to understand and I wish I had a picture to share, but you will have to use your imagination.  We will know more next week about what is possible.  So we have to be praying about what road to take.  A single ventricle means 3 surgeries and a heart transplant at some point.  The other procedure means uncharted territories and a procedure that has never been done before, but a 2 ventricle heart for Natalie.  What a special little girl we have.  Dr.K said that if this procedure works, Natalie could write a new chapter for Dr.s and future kids born with hypo plastic left heart.

Please be praying for Brad and I to have the wisdom to make the best decision for Natalie and for us to listen to Gods voice.  This will be a huge decision for us about the future for Natalie.

Life is an Adventure! 

Good news again!!!  Natalie now weighs 8lbs 8oz.  Still not as big as I was when I was born.  I feel like I should apologize to my mother!!!  She is 20 1/2 inches long!!! Dr. Fernadez said that everything is looking very good with her oxygen stats, weight and her echo looked good too!!!  We are still focused on watching to see if the left ventricle is going to grow.  We will go back to Minneapolis  the end of July to meet with the doctors there.  So until then we need to pray for growth in her left ventricle.

We have been home for almost two weeks now and life is very different from when I left.  We now have a little girl sleeping in the room next to us and all my time revolves around her!  That won't change for the next 18 years I'm sure!  She is such a doll and I just love to hold her and snuggle her.  She is finally starting to adjust to life at home.  It's been tough for all us, but we are figuring it out slowly.  Natalie is a bit colic and that has been a challenge. Its so hard to want to comfort her and not be able to with out nursing her and making her sick. Mommies and daddies are supposed to be able to comfort their babies when they hurt.  We have learned through everything that we must take one day at a time and enjoy each day as it comes.  She is starting to make some adjustments and we have enjoyed to singing together and going for walks.    She loves her swing and loves to go for walks with Dad.  The weather has been to warm to walk much lately, but we look forward to more walks when the weather cools down.  She also enjoys her toys that sing to her and have lights!!!

Life is going well!  Brad goes back to work on Monday and then it will just be me and the bug all day!  I am sure that we will have a blast!  We will keep you updated  with her progress.  Thank you so much for praying for us and supporting us in our journey with Natalie Bug!

All Most There!

Brad and I are counting the days until we get to come home.  Our Target..... Saturday a.m. for discharge. YEAH!!!

Although we have come along way, we still have one last hurdle to get over.  The  little bug needs to gain some weight.  She must get that from Daddys side...  Not Mommies.  She is back to her birth weight now after 3 weeks.  We hope now that she can put some weight on since she is feeding again!  She is eating much better now.  A great breakfast eater and an afternoon snacker!  She is doing very well though.

I give a  big "Job Well Done" to all you mommy's and daddy's who have made it through the first few weeks with their babies!  It's not easy.  We stayed in the room with Natalie her first night and I believe that I got an entire 30 minutes of sleep in a recliner and Brad maybe clocked 45.  Not enough to raise a baby on!!!!   It's been tough, but we are learning. So much to learn from when and how to nurse, to diapers and how to burp her!   Sounds like easy chores, but it's been difficult at times.   We are catching on though and today was a better day than yesterday and that's all we can hope for.

So the plan is to gain some ounces over the next 2 days and hopefully get home on Saturday night.

Natalie is doing well.  She is a bit unsure what to do in the big quiet room, but she still gets plenty of disruptions to make her feel at home.  The CVIC was so loud and busy all the time and I think she got used to being poked at and monitored. She is going through withdrawal from her CVIC family of nurses and doctors.  We also have gotten to hold her a lot more in recovery, so she thinks that is the cat's meow and wants to be held all the time.  I think that she is just as excited to get home as we are.

We will have to come back in a month for her check up and have weekly echos in Bismarck as the watch to see if the left ventricle will grow with more blood exposure.  So we are praying for growth in the left ventricle.  They have changed her diagnosis just a little to Hypoplasia of the Left Ventricle. The doctor said  she is quite a unique case and that they only have research from 15 cases of this.  Maybe we can charge them for the learning opportunity that Natalie provided. We have to re-coop the money somehow, Right!!!   If not I guess we will have to settle with our second business investment.... Breast Milk production!!!!

Thank you to all who have been praying for Natalie and our family!  Although it's been a long journey and we have a long way to go, we are optimistic and thankful for God's Grace and the love and support of our family and friends.  We should be home soon and can't wait to see everyone again once we settle back in.  I am quite sure that we will never be more excited to see exit 159 as we will on Saturday!!!!!

See you all soon!!!

Recovery (Day 3)

We got really good news today. Natalie will be moving out of Intensive Care for the first time in her life. We'll be moving up to the recovery floor sometime today. They think we'll be discharged from the hospital sometime toward the end of the week. We are extremely thankful. Natalie has been doing very well and is eating a lot. She will have no tubes or wires coming off of her body as of today, and she is looking great.

Recovery (Day 1)

Natalie is recovering well. She still has a breathing tube in and a drain tube in her chest. Hopefully, they'll be removing the breathing tube today or early tomorrow, depending on how awake she is. If she stays awake, they'll remove it tonight. We're hoping for that, it's very hard to watch her struggle against that tube in her throat. Other than that, she is doing very well. Her stats all look good, and she's doing as well as can be expected.

Surgery is over!!!

Natalie just came out of surgery, and the surgeon said it went great. She isn't back to her room yet, but we're waiting. It looks like less than a week of recovery if things go as planned. We've learned not to take anything for granted, but we're hoping to be back home later next week. We miss our home and Bismarck, and we're ready to get back. I'll update again later.

Surgery Scheduled (Great news!!)

We had an interesting and encouraging conversation with the surgeon. They are going to perform surgery tomorrow at 1:00 pm, and they have decided not to go with the Norwood surgery. They said Natalie's heart is in too well develped to shut down the left side completely. Instead, they will be performing a hybrid surgery that will allow her left side to remain functional. The recovery time will be much less, and we could possibly be home next week sometime.

They will continue to monitor Natalie in Bismarck, and she will be getting an echo done every 10 days in order to make sure that the heart is functioning properly. If all goes well, the left side will develop, and her heart will be very similar to a normal heart sometime down the road. We are very thankful.

Update 6/19

Hi,

Sorry we haven't posted in a while. We just haven't had a lot of new information, we've been in kind of a holding pattern. Natalie is doing okay right now, the fluid in her body has gone down and she's looking and feeling better. Her left ventricle couldn't quite keep up, so they have her back on meds to keep her right side doing most of the work. They are tentatively scheduling her for surgery on Thursday morning, but that could change.

She is quite unique in that her heart is almost completely normal other than her small left ventricle. Most patients like her have small aortas and other parts, but hers are all normal. So, they really would like to find a way to perform a surgery that will allow her to still use both ventricles rather than bypassing the left altogether. The doctors keep telling us that she is really making them think.The surgeon has sent all of her files over to the University of Boston to get an opinion from them as well since they deal with a higher volume of patients of this type.

So, the plan is to do a cardiac MRI tomorrow. After they analyze the results from that, then they will sit down with us and decide which route to take. We're praying for a surgery which will allow Natalie to use both ventricles, as this is more ideal for her in the long term. However, if they don't feel that will be successful, then they will proceed with the surgery that they had been planning initially. Then they'll do the first phase on Thursday, the second phase toward the end of this year, and the third phase in 1-2 years.