Tomorrow is the big day.

Well Rose Nacheca is sleeping peacefully in her bed, completely unaware of what is going to happen tomorrow. Dan was watching her play tonight and said he almost feels a little guilty watching her be so full of energy and happy tonight and tomorrow she will undergo this huge surgery. I know that she is not old enough to understand, we have told her many times that they are going to fix her heart. At 3 years old though the reality just does not sink in.

Our pre op on Friday went very well. We got to tour the pediatric cardiac intensive care unit where she will spend the next 5 to 6 days. I will admit it frightened me quite a bit. I was really hoping that the other surgery would have worked so she could have been spared this pain. In my mind I understand that without this surgery her future would be very uncertain and her heart would not keep up with her growing body. The reality of the fix though feels very scary at this moment. Children's Hospital is a wonderful place and she has fantastic doctors who do this everyday but it just feels very different because we know and love this little patient so much!

Your prayers and support means so much to us. We know that Rose Nacheca is in God's hands, he will watch over her before, during and after the surgery. He will be sitting with us as we are waiting to be able to be with her again. I will be updating Facebook tomorrow whenever we hear anything and will try to update the blog often while she is in there.

Update on Heart Surgery

First, I would like to thank everyone who was praying for Rose Nacheca! All of your support is greatly appreciated.

Rose Nacheca is home. She did just perfect today. The perfect little patient. Unfortunately, the surgery was not a success. To say that this was a disappointment is a HUGE understatement. I think my heart broke a little bit when the doctor said he was unable to fix hers. Okay, it broke a lot! They were able to get the patch in place and it stayed in place just like it was supposed to. Unfortunately the hole was rather large for her little heart. The patch was pressing on her artery and they had to remove it.

One funny thing that happened this morning is when they gave her the medication that was supposed to relax her and it made her really cranky. Everyone who walked into the room she would look at and tell them to get out and shut the door. If they would not leave she would say to me "Mom tell them to go away and shut my door!" It was very funny.

This was not really the Valentines day we had in mind. We were hoping to be celebrating a successful surgery and a newly improved heart inside of our special little Valentine. But instead we get to spend the evening at home with the other three kids eating the Valentines cake they decorated with grandma this afternoon. That is equally sweet.

Monday March 14th Rose Nacheca will go in for open heart surgery to complete what they tried to accomplish today. This will be a more difficult procedure and 5 days in the hospital, 3 in the ICU. Your continued prayers would be appreciated.

We love you! Happy Valentines Day!

Heart Surgery

WOW, it has been a really long time since I have updated this. Life has been busy the last couple of months. Rose Nacheca continues to thrive here in Minnesota :) Her English is understandable to most everyone who talks to her now! She has grown 2.3 inches since she arrived here and gained 6 pounds! Aside from the frequent colds and ear infections she has been pretty healthy. She managed to escape the stomach flu in early December which was good since she really cannot afford to lose any weight!!

We met with the cardiologist for a repeat echo to check the hole in her heart. At the last appointment in August they told us the hole was 8 mm. They said that if we got her closer to 25 pounds they could easily fix the hole in the cath lab as a same day surgery with a patch. At the appointment today she weighed 23.4 pounds which is closer to 25 pounds but the hole in her heart had grown to between 11 and 12 mm. The weight gain and growth is good news, the growth of the hole is not. The cath lab surgery is ideal for holes of 11mm or less. So we are borderline for the cath lab being a possibility. The doctor said that there is a 50/50 chance they will be able to fix it in the cath lab versus open heart surgery. The benefit of the cath lab is that it is a same day surgery and way less invasive and minimul recovery time. Open heart surgery would be a major surgery requiring 5 days in the hospital (two of those days being in the ICU). There would be a big incision and scar on her chest but it would definitely fix the problem.

After discussing the options we have decided to go ahead and schedule the cath lab surgery for sometime next week and we will at the same time schedule the open heart surgery for 3 weeks from now. If the cath lab surgery is successful we will cancel the open heart surgery. If it is unsuccessful we will go ahead with the open heart as scheduled.

This is where your prayer comes in. Please pray that they would be able to fix her heart during the cath lab procedure! Open heart surgery is way more complicated, painful, a much longer hospital stay and a lot more expensive.

This little lady has beaten way worse odds than 50/50!!!! Please pray with us that this would be successful and would fix her little heart :)

We will also be going to a geneticists to see if they can determine which syndrome that she has so we can get a better idea of what her future may hold. The possibility of Noonan's syndrome was mentioned by the cardiologist today. I have a friend who has a child with this syndrome and she is doing great.

Thanks for the prayers!!!

Hello everyone. We are all anxiously awaiting snow here!!!! Dan is so excited to see Rose Nacheca's reaction to her first snow :)

Things are still going wonderfully with her. She loves music!!! She asks to listen to her favorite songs over and over again.

We had an appointment at the endocrinologist for both Rose Nacheca and Michelle last week. Oddly they had both grown almost exactly the same amount 3/8 of an inch in 3 months and both gained 2.5 pounds. Neither of the girls had grown what a child their age should have grown but we will take whatever we can get out of them LOL!

Rose Nacheca also went to the audiologist this week. One of the complications that can develop from this infection she acquired in utero is hearing loss. She does indeed have hearing loss. She has moderate hearing loss in her left ear. And minimal hearing loss in the right. She needs to go in and have a procedure where they sedate her and hook electrodes up to her head. They will put sound in her ears and then see how her brain reacts to the noises. This will tell them what kind of hearing aids she needs. This process can take a little time so we are hoping that we can get it done before her visa is set to expire. Although getting her visa extended should not be that big of a deal should it come to that.

Otherwise things are going great! She is tolerating her tuberculosis medication very well. It tends to upset her stomach so we are experimenting with the best time of day to give it to her. The morning between breakfast and lunch tend to work best. If she takes it at bedtime she does not sleep well at all :(

She is so sweet and affectionate. She learned how to say I love you so whenever anyone leaves or comes home she is waiting with a hug and tells them that she loves them. We all love her too!!!!!

Thanks for the continued prayers!

Rose Nacheca did very well for her MRI and cat scan on Friday :) The MRI was to check her pituitary gland. That turned out completely normal.

The cat scan was to look for active Tuberculosis. Her skin test came back positive for exposure to Tuberculosis. This freaked me out at first but we went right to the infectious disease doctor who assured us that the chest x-ray she had the first week she was in the United States was clean so his feelings were that she was not contagious or sick. He did follow up blood work which was also good. The CT scan was just precautionary because the standard treatment for inactive tuberculosis is a course of 9 months antibiotics. If there had been active infection and we treated with only one antibiotic that could cause resistant bacteria. But the scan turned out completely normal confirming what the doctor already thought. She is healthy and cannot make anyone sick! She will most likely start her 9 months of medication this week.

It seems like the more times we go looking the more things we find. She is iron deficient (not a surprise since there is very little meat that she will eat!) so she is now taking a supplement for that too. The next time she goes back to the doctor is on October 22nd when she sees the endocrinologist again. I am excited to see if she has grown at all. It will have been 3 months between visits so there should be growth!

I have not updated on Michelle lately. She is doing well. She has back on her Increlex, almost her full dose. We have to increase it very slowly to make sure her blood sugar can adjust. She is still having some issues with hypoglycemia but they are much less frequent than before we added the growth hormone. Her school decided to write a 504 plan for her so that every teacher she works with is completely informed and educated on her condition and hypoglycemia issues. This year she has only had to go to the nurse like 3 times with low blood sugar so we are happy with that!

Hope everyone is enjoying fall! We are experiencing quite a heat wave here the last couple of days. Friday it was 87!!! Lots of going to the park and hanging outside for us this weekend:)

Good news!

Rose Nacheca had her appointment with the Infectious Disease doctor today. I have been dreading this appointment for the last 10 days since we heard her test results. I had feared the worst and it turned out I worried for nothing.

Rose Nacheca has indeed had CMV at some point. This doctor though seems to have serious doubts that it was during the first trimester of her mothers pregnancy with her. She does have some characteristics of congenital CMV but she is NOT severely affected. Things could have been so much worse. At this point the biggest concern is her hearing. They set us up with an appointment with an audiologist in November to see how well she hears. They ordered some other blood tests to check how some organs are functioning but overall he is VERY happy with how she looks :) He really thinks she will do just fine!!!!

So I guess we go back to the endocrinologist to pursue the low IGF-1 and IGFBP-3 levels. The next step for her is a MRI. Not too sure when that will happen yet. Hopefully soon!

Thanks for the prayers!!! She has been sick since Friday. She has had a cold, fever and stuffy runny nose, and now she has an ear infection again. So hopefully with the new antibiotic she will start feeling better (and sleeping better LOL) really soon!!!

It has been a long time since I have updated this. We have been very busy with the kids going back to school.

We have some more news on what is going on with Rose Nacheca. Our endocrinologist went out of the country the week after Rose Nacheca's initial appointment. All the results from her blood tests were unavailable until he returned a week and a half ago. He called last Thursday to let me know we had some answers.

There are certain infections or viruses that can cause serious birth defects when a mother gets them during the first trimester of pregnancy (like measles). Rose Nacheca's mother had one of these infections during her first trimester of pregnancy which is what is causing her failure to thrive. She tested positive for the antibodies which means she is now immune. However her small head, severe growth retardation and heart defect all orginated from this infection mom had. She goes to a specialist on the 27th to see what other organs might be impacted as well. One of the complications that frequently happen with this is hearing and vision loss. It is a degenerative thing so this could happen at any time in her future. This news made me very sad. She is thriving so well, learning to talk and speak English so well. To know that there is a chance (we don't know yet how likely) that she will lose her hearing was very devastating!

She is also deficient in the same hormones that Michelle is deficient in. There could be a couple of different causes of this but they all originate from the birth defects she was born with. These hormones are primarily produced in the liver and the liver can be affected by her condition so this could be causing her liver to not be functioning properly. She has had liver panels done and they were normal so that is a good sign. The other possibility is that her microcephaly (small head) is affecting her pituitary gland and causing her to be growth hormone deficient which would also make her IGF-1 levels be low. More tests have to be done at the endocrinologist to determine for sure what the source of her low IGF-1 and IGFBP-3 levels are.

So we were very surprised by this news. She is such a happy little girl. She can speak full sentences and understand almost everything that you say to her! She says please when she wants something and thank you when you give it to her. She keeps up very well with the older kids in the house. We read lots of stories and she would color for hours at a time. I will be honest when I say I was a little angry inside at her diagnosis. An infection that would be so inconsequential at any other time except the first trimester of pregnancy has left her with a congenital birth defect. That is really crappy timing! I know that God has a plan and purpose for everything. I trust in his timing and his plan. I also have gotten to know this little person very well and I do not see her being the type of person to let any of this stop her! Many of the children born with this congenital birth defect never walk or talk. They are unable to hold their own head up and have to have feeding tubes put in to keep them adequately nourished. I think about that and I have to wonder......this little girl lived the first two years of her life in a type of poverty most of the world could never imagine! She slept in a straw hut in the middle of the jungle. She had no medical intervention at all! And yet here she is at three years old and she is walking (most of the time she is running and jumping and dancing!!!) and she is speaking full sentences. There has to be a plan for her life. I am convinced of that.

So we will see what the doctors have to say next week. Please pray for her and for the doctors to have wisdom. At first I was very discouraged and sad but I really believe that she is one tough little lady and with our prayers reaching her perfect creator she is in good hands!

I will update a little about Michelle later. Goodnight!