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!