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.

1 Week Old Today!

Hello Everyone,
This is Heidi! I do exist still!  What a wild ride we have had and it's been hard to find the time to communicate to you all.  Each time I think that I have time to sit and call or email, the time just gets away from me.  Between spending time with Natalie and "doing my chores" the time just disappears.  I want to say thank you to everyone who has been praying for us and sending positive thoughts and love our way.  We can truly say that through this whole experience we have felt your love in so many ways. We are so blessed to have such great friends and family. Gods love and the love of our family and friends has helped us to stay strong and focused on what is best for Natalie.

Today has been a pretty long day waiting for rounds at 4:30 to get any updates from the doctors.  Over the past days we have watched Natalie grow and get stronger. After removing the PGE that was keeping the ductis open we were very hopeful that there was the chance of not having to go through the surgery. She was doing so well and was very calm and content sleeping and eating like all newborns do.  The last few days we have noticed a lot of change in how she has been reacting to being able to eat, and if she would be able to thrive without medications. First they started her on a medication to help her left ventricle pump better and move the blood out to her body.  The left ventricle has been functioning but not able to  pump the volume and relieve the pressures in the right ventricle which has caused her to develop fluid on her lungs. With the fluid build up she has not been able to breath as well and her breathing patterns and saturation levels have dropped.

Well, between paragraphs Dr. St Louis came back to the room.  After viewing her echo from this morning they have decided to restart the PGE, so that means that her heart is not able to regulate the pressures and that they will have to do some sort of surgical intervention.  We will have to wait for the ductis to open again and then we will talk about what the doctors will do and when.  We won't know more about when and what until later this weekend or possibly on Monday.  Keep the prayers coming! Brad and I are very sad that she will go through this, but we know in the long term it will be what is best for Natalie and that God is watching over her and knows his plan for her life!  We are so blessed to have such a beautiful little girl!

Update 6/14

Hi,

We got somewhat discouraging news this morning. Apparently, Natalie's heart isn't responding quite as well as we'd hoped, and she is developing fluid in her lungs. They have used medication to counteract this, but it looks like surgical intervention may be necessary. We won't know much more than that until we meet with the medical team this afternoon. The surgery won't be as intense as the three stage surgery we had expected when she was born, so we are thankful for that. We'll update when we know a little more.

Another update 6/12

I got to feed Natalie her first bottle today at 6:00, and she gobbled it down after a short time of figuring out how to do it. Heidi is feeding her second bottle right now, and we'll see tomorrow how well she's responding to the normal diet. We're praying that everything keeps going as well as it has been. I'm posting a picture of her drinking her first bottle.

We really need to thank a lot of people for all they have done. We'll do this in more detail tomorrow. Foremost, we need to thank God for all he has done in our daughter. The way her heart has recovered is nothing short of a miracle.

Update 6/12

Good afternoon,

We got some more good news today. They're finally going to let Natalie start eating normal food (milk) today. Her heart has continued to respond well, and they are not planning any surgery yet. The left ventricle is still small, and they will see how she responds when eating normally. If she is able to thrive with her heart the way it is, then they will be able to let her go on without any surgery at this time. We will continue to pray for her. We will post again as soon as we know more.

Heidi is recovering well, and her feet and hands look like feet and hands again.

Update 6/10

Hi everyone,

They discontinued Natalie's medications at 2:00 this morning. So far, Natalie's heart is functioning very well. She will remain in the Cardiac Intensive Care Unit and will be closely observed for the next few days.

If all goes well, it sounds like they will need to perform some less major surgeries than we had expected. If her heart doesn't respond well in the next few days, then they will have to perform the same three-stage surgeries that we had been expecting all along. So, we will continue to pray that her heart continues to function properly so that we can get her home sooner rather than later.

Heidi is doing very well, and is feeling better every day. We did some shopping today and bought some clothes for Natalie. The doctors and staff here have been tremendous, and we are very thankful that Natalie is here.
 

Keep praying...

We had some good news for Natalie. Her heart has developed better than what was expected initially. Her left ventricle is closer to normal size than what was expected, and they are going to pull her off of meds at 2:00 am tonight. They will closely monitor  her in the Cardiac Intensive Care Unit, and she'll be staying there for the foreseeable future. How her heart reacts without medication will dictate the type of surgery she will require. There is a possibility that she won't require the intense, three stage surgery that we had anticipated.

So, please keep Natalie in your prayers, they are being answered and we are very thankful.

Natalie Jean Henke

Good evening (err.. morning),

A long day is over, and Natalie Jean Henke came into this world at 11:29 pm on 6/7/2012. She's over in the NICU now, and is in very good hands. We'll be praying for her .Heidi is doing well, and is recovering. We'll post more tomorrow, because I'm tired right now.

6/6: Update 2

Hello, it's Brad again,

Well, they just informed us that they are going to try to let nature take its course a little longer rather than trying to induce any more aggressively today. So, the good news is that Heidi gets to eat (this will be the first time she's eaten since 8:00 this morning). However, it also means that it's very likely that the baby will show up tomorrow instead of today.

Update: 6/6

Hi,

Well, we've been at the hospital all day with nothing to report. We checked in at 8:00 this morning and got into our room. We're waiting for the medications to take effect, and hopefully the baby will be on his/her way soon. We'll update again soon.