Easter update

Happy Easter everyone!

It has been a good weekend here. I got here on Friday afternoon, and joined Heidi and Natalie at the hospital. We can't be home, but at least we get to be together as a family. We pray for those who don't have that luxury, especially those who are serving our country. Heidi's parents came over here on Thursday to be with us on Easter; and her aunts, uncles, and cousins have been visiting and keeping her company. We're very thankful to have such great people in our lives.

Natalie is doing really well. Her feeding tube went in on Thursday, and it is doing its job. She got sick on the first night, probably because they just gave her a little too much volume. She's done really well since then, and it looks like everything is working as planned. Natalie looks really good, and is gaining weight slowly but surely. I could tell a difference in the five days I was gone. She's been happy, and continues to be more and more vocal.

All signs are pointing to a release date of Monday or Tuesday, so we're praying that things continue to progress so that we can be together at home sooner rather than later.

I'll let Heidi take over since she's the one that's been here speaking with the doctors. She can fill you in more accurately than I can.

Well, Brad said it best. We are finally coming home again.  Natalie is much improved, and you can tell that she is really feeling better. She has more energy and is much happier.  We can't wait to be home again and see the pets.

More difficult challenges are still ahead. Natalie has been placed on a constant IV of Milrinone that helps her heart beat stronger, and will help it function better until we get to Boston.  We have everything set for Boston for her heart cath on April 22 and her surgery scheduled for the 25th.  We are really unsure of what will take place this visit and have to trust that God is in control.  So many unknowns still lie ahead.

Today we are all celebrating the risen Christ and the true sign that whatever we endure here on Earth can lead to eternal life if we choose to have a personal relationship with Jesus Christ.  That is what gets us through each day. Someday we won't have this hurt and fear.  Thank you God for giving us the choice to have an eternal life with you!

Happy Easter Everyone! 

 See my Teeth!

Our Easter Bunny!

Super Short Update

Just a quick update to let you all know that Natalie is scheduled for her feeding tube surgery on Thursday morning.  She will have an MRI, feeding tube and PICC line placed. The PICC line is a longer lasting iv that we will use to give her a new medication that will help her heart function better.  It will be a constant drip to her and will be placed in her arm.  Natalie will have a little pack to carry her meds in. It's only short term until we go to Boston again on April 18th.  She is set to have another heart catheterization on Monday the 22nd and a surgery date is scheduled if needed (which is probable) on April 25th.  This will be another open heart for Nat. Poor baby. 

I remember the docs saying that this is the best case scenario for this kind of heart defect.  Boy, that seems to be so far from the truth. They told us these types of repairs are usually more difficult in the beginning, but have better long term outcomes than the single ventricle.  I think they all are hard no matter what.  We just pray that God will continue to heal and mold her heart so that it functions well.  The main issue she is having is that her heart walls are stiff and can not expand well. The fibrous tissue constricts her heart walls in the left side. When her left ventricle is full of blood her pressures are very high.

Thank you to everyone who continues to pray for us and support us through this all. Nat and I have been hanging out and being goofy while we wait for Thursday to get here.  Brad will be here on Friday and my parents are coming to celebrate Easter with us in Minneapolis.  It will feel good to have all that support here with us. 

We will keep you updated on Thursday with the how the surgery goes.

Good night all!

March 23 Update

Hello All,

Sorry for the delay in the updates, but the week has been eventful and uneventful at the same time.  I think that I have spared you all the frustration by not updating you.

My week with Natalie has been exhausting.  Being here alone is very hard, but we know that it is only for a short time.  We have been on the surgery schedule and then off the schedule and then on the schedule again. The hope for the week was that Natalie would figure out this eating thing on her own once her meds were adjusted and she was better hydrated.  If she was able to avoid the feeding tube we wanted to give her a fair chance to do so. The key things we have been looking for have been increase in volume and therefor the hope to see a gain in weight. So in our effort, we did see sizable changes in the amount  that she ate.  One day she doubled her intake in fluids and food, only  to get on the scale at 3 am and see a drop in weight. She has lost weight 3 days in a row now.

At this point we are on the radar, but not on the schedule. The plan was to make the call on Monday. Brad has been here since Friday and it has been wonderful having him back again.  We have had a lot of time to talk and we think that the feeding tube will be best for Natalie. She is not gaining and we do not want  any more setbacks that would delay her development cognitively or physically.  She is now just barely 12 pounds at 9 1/2 months.  We are ready to move forward and see her get well. A feeding tube is not forever and it will help her gain the weight that she needs to gain.

Highlights for the week!
Aunt Nancy came to visit and brought some treats for me and ground chicken for Natalie
A family friend, Jen Vasey, came and I got to meet her new 3 week old baby Kol, and catch up.

Josh, Sara, Joshua and Wyatt stopped by and got to meet Natalie for the first time. We had a good time.  I have included a few pictures for you all to see.

Smokey the Bear came to visit, and Natalie wasn't even scared of him.

Daddy got here on Friday and Natalie was all smiles.  They have got to play and snuggle and I think it was good for both of them. I know Nat was in heaven going for rides in the stroller while I had sometime to unwind.

We are not sure to the date yet for the feeding tube. We have  requested earlier in the week if possible.  We would love to be home for Easter, but I think that is pushing it.  So chalk it up to another holiday in the hospital. It is what it is, and it's just a season in our lives. We know that God has carefully planned the care for Natalie and we are looking forward to the day when we can be home and free of  doctors appointments.

Please continue to pray for Natalie and her weight gain.  Also, for Brad and I as it has been very difficult being apart and Brad continues to care for our family from far away as I care for Natalie here.  I miss him terribly and I know that its equally hard for him to be away from us as well. Hopefully just one more week! 

What a little bug. Natalie wanted me to update you on her day today.

 

Today was good. I ate well, I giggled and I saw a puppy.  I really like mashed potatoes and anything out of a cup or straw.  Cheerios are yummy. I like going for walks and I keep asking those doctors to let me go home.  I miss my puppy and kitty.  I got my second tooth today, so I showed mommy how hard I can bite now.  She was impressed and said OUCH!  I didn't cry at all when they took my blood pressure or my temperature tonight.  Daddy, you would be so proud of me.  Mommy and me miss you so much and can't wait to see you. Don't worry, I am taking good care of mommy. I give her lots of hugs and I kiss the phone each time I get to talk to you.  Hurry Back Daddy.  We have to play catch again when you get here. I am practicing. I reached my goals for milk today, ahead of schedule, just like you:)  I am pretty sleepy so I will let mommy finish.  I love you Daddy!  See you soon!  Nite, Nite!

 

 MMM..... I love Milk!

 See, I have 2 little teeth in there!

 Going for a ride. The nice guy pushed me in my big bed.

This is what I look like when I think about Daddy!

 

 

 

 

Well, I don't have my proof reader ot my blogger here tonight, so I will try to keep things short and sweet...

 

Today was a good day for Natalie. Every day off of Bumex has made her more comfortable and much happier.  That is always good for my heart.  We giggled and played and had a pretty quiet day.  Today I spoke with Dr. K and he told us that we need to get back to Boston soon.  I think those words were just too much today with Brad being gone and no one to hug me after that news.  We will return to Boston in early April for another heart cath where they will dilate her septum just a tiny bit. Enough to let some blood flow through and reduce her pressures, but not to much to drop her profusion to her lower extremities.  They will also look to see if there is any more fibrous tissue that they can remove to help her gain some more elasticity in her ventricle.  They say it should be a short stay, but that is what they told us in December too and we all know how that went. 

 

For now we will continue to focus on her intake of milk and other fluids to keep her hydrated.  We have an MRI scheduled for Thursday morning and will still go ahead with her feed tube on Thursday as well.  The feeding tube will help us  get her fattened up so that she can grow and get stronger for the future.  We also can give her meds that way and not have to make her so miserable every day and night.  She is really doing well and surprises the doctors. Every day the doctor says how amazed they are at how good she looks with her pressures being so high.  She really has been more comfortable that last 2 days and we actually have heard her laugh and jabber again.  Praise God.... 

 

I must thank you all for your continued pray for Natalie and our family. I am only human to ask God why this is happening to her, but am reassured and trust in his plan for Natalie and for us too!  It gets hard at times, so I try not to understand it, but rather try to focus on enjoying the precious gift he gave us.  What joy she brings to our lives. 

 

We will talk to you tomorrow. This Mommy is tired!

 

Good night all!

Saturday (happier day) update

Hi everyone,

Today was a really great day for us. They took Natalie off of the strongest diuretic (Bumex), and it has worked wonders. She is eating much better, actually meeting the goals they set for her, and is much happier. She actually laughed today, which is something she hasn't done since before we went to Boston in December.

Now, it's just a matter of monitoring her and seeing if her heart pressures will stay down without the Bumex. When we tried this before in Bismarck, her pressures went up and they had to put her back on the drug. Then, the drug caused her appetite to go away, and she declined physically and mentally.

Here, they have more options available, and are able to watch more closely. They'll try different medications if her pressures rise, and hopefully we can get something to work. She is a much happier and hungrier baby without that drug, so we are praying for this to work. This could even eliminate the need for the feeding tube. Time will tell.

That's about all we have for today, it will be a slow day or two as we monitor Natalie. I have to head back to Bismarck tomorrow to go to work on Monday. Heidi and Natalie will hang out here in MN, and I'll look forward to rejoining them on Friday.

Thank all of you for the prayers, please keep them coming.

Friday update

Hi everyone,

Well, we had a pretty long, stressful day today. Natalie had her catheter surgery, and we got the results back. Her pressures are quite high, and her ventricle hasn't grown. However, this could very well be because she hasn't grown either. She has actually lost weight since we got home from Boston in January.

Initially, the surgeon's thoughts were that we should think about abandoning the heart repair. This would mean that we either reverse all the work that's been done on her heart and go with the single ventricle pathway, or we move to a heart transplant. Yeah, we were devastated. The single ventricle pathway carries with it a 70% chance that Natalie will survive to adulthood, and she would probably need a transplant in 10-20 years. We spent about two hours thinking that this was what the future held for Natalie. It was not a fun two hours for Heidi and I.

Then, we spoke with the attending cardiologist, and she had a much better outlook. They had met as a team, and they were in agreement that it's way too early to give up on her heart as it is. She is so very close to having a  fully functioning heart, and they want to give it a chance to develop. They are adjusting medications so that she can eat better. This will cause growth both in her, and in her heart. If she isn't able to increase her food intake over the next several days, then they will proceed with giving her a feeding tube. That way, we can be sure that she will get enough food in order to help her grow and develop.

We pray that this works, and that she can have a bright future with a normal heart. Only time will tell. We'll know a lot more in another 2-4 months, so until then, we'll make sure that she eats plenty.

We want to thank everyone for the prayers and support as we've gone through this latest ordeal. We'll be sure to keep you updated as we move forward.

Another trip

Almost 3 months to the date we are back in the hospital again, and always on these surprise adventures.  We have enjoyed being home with nothing real exciting to post about. Brad has been back at work and I have been back in the saddle as well. Life was pretty quiet except our weekly visits for Natalie to have her echos and check ups.

Over the past month we have been closely monitoring Natalie's weight gain or lack thereof. Her heart function appeared to be stable, but she has not been able to put on any weight.  When we left for Boston, Natalie weighed about 14 and a half pounds. A very happy and chubby baby. When we left Boston on January 14th, she weighed about 12 lbs. 8 ounces.  We expected the weight loss following the surgery and anticipated that she would gain it back once we were home and back in our normal routine.  Tuesday Natalie weighed in at 12 lbs. 1 ounce. She had lost considerable amount of weight over the week and has not been eating well. We know that the diuretics that she is on reduces her appetite, but at this point we are not able to reduce the diuretics and improve her eating.  

So Tuesday upon seeing the scale read 5.49 Kilos, Dr. Fernandez sent us immediately, to Minneapolis.  We had out appointment at 1pm, and by 5:30 we were on the road.   We arrived at Amplatz at 1:30 am and began the process of getting Natalie a feeding tube placed to help with her feedings. It's not that Natalie doesn't eat, she just doesn't take in the volume to get the calories that she needs.  She only takes in about 15 ounces a day and should be taking in about 32, plus her baby foods. 

Once we arrived here, the doctors really wanted to more closely examine the heart to see if the pressures and heart functions are good.  We know that the diuretics are causing some of the eating issues, but we can't reduce them because of the fluid build up if she doesn't have them.  So, they will be doing a heart cath tomorrow to take a good look at the pressures and function of the heart before we do anything with the feeding tube.

At this point, we are starting here to see if we can tweak medications and have better squeezing from her stiff left ventricle.  If we get better squeezing with an additional medication we hope that we can reduce her diuretics and increase her appetite. This process will take the better part of a week  to evaluate.  We have decided to continue with the feeding tube to allow us to give her additional nutrition, but hope that it is not as critical to her weight gain if her appetite returns.

If this process doesn't improve her  overall health, then we go onto the next step which would be more severe interventions that we will explain if needed.  Right now we just need prayer and the help of God to heal her heart and make it function well. 

We will update you all with the cath results tomorrow. Thank you for the love and support; and of course the prayers for Natalie, Brad and I.