Mar 15, 2013 | Natalie's Life
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.
Mar 14, 2013 | Natalie's Life
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.
Jan 19, 2013 | Natalie's Life
Well, after a long 33 days in Boston, we arrived at home on Monday night. We were finally discharged conditionally on Sunday to a hotel nearby the hospital, and Monday at 1pm we were given the final okay to go home. By 2pm we had booked our flight and checked out of the hotel. We were very excited to get home. Monday night we slept in our own beds and Boston felt a million miles away.
While in Boston we celebrated Christmas, New Years, Brads 39th birthday and Natalie’s 7 month birthday. Most importantly, we celebrate Gods miracle gift. Natalie’s heart is now functioning as yours and mine would. She was able to have a full 2 ventricle repair. She is doing very well and her heart seems to be adapting to its new circulation, and her left side is learning to squeeze. We are still waiting to see our little girl return to her old self. It’s a long road to get her off the methadone, but we are getting closer each day.
We still laugh about the NP that was “very concerned about you going to such a rural area and concerned about Natalie’s after care”. That was the one of the main reasons why we unable to return home on Sunday night. The news that we were not going to be discharged on Sunday about sent me over the edge. I just cried and asked her to please let us go home. After weeks of not even thinking about home, I was ready. Natalie was past ready. We spent the last 7 days either carrying Natalie around the 8th floor or pushing her for endless hours in the stroller. Every time we would enter the room and she would see her bed she would cry. She wanted to be home too. And of course Brad was beyond ready to be home and see the animals and sleep in our own bed.
Endless games of scrabble, strolling Natalie until the wee hours of the morning and the stress of having another surgery this spring are now long gone. Okay, you are right, we had to bring the scrabble board home with us and we have even played a game since being home. We are so thankful for the miracle the God gave us and for all the wonderful people that we met while we were in Boston. So many people have touched our lives both directly and indirectly and God has been calling us to do more and be better stewards of the gifts that he has given us. We are excited for the year to come and we are starting a new year with a new prospective.
Thank you so much for all the support throughout this experience. Whether a gentle smile on the 8th floor from others who truly understand our fears or those who reached out to us and supported us in prayers, cards, snacks, and financial ways we could not have gone through this with out you ALL. Each and every one of you helped us to cope and heal. Thank you and we hope that the rest our blog is dedicated to following our baby girl and her life. Her 1st birthday will be quite the celebration.
Here are a few pictures for you all to enjoy.
Hanging with Mom
My Favorite Face!
Unwrapping Presents with Dad
Brads Birthday Dinner at Lineage! Thanks for helping us find this little treasure Dorothy!
Brads Birthday! Unfortunately, I could deliver on the Vikings win!
Stroller Girl
Ready for Home
FINALLY HOME!!!!!
Dec 30, 2012 | Natalie's Life
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.
Chewing on things again.
A snowy morning in Boston.
Dec 28, 2012 | Natalie's Life
Yummy wires
Hanging out with Sniffy
Dec 20, 2012 | Natalie's Life
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
Recent Comments