2 weeks Post op

Tonight I am laying next to Rose Nacheca as she falls asleep in her bed. Two weeks ago though I stood beside her bed as she had IV's, tubes, and machines attached to her. She was on a ventilator and heavily sedated. WOW what a difference 14 days can make :)

She improves every single day! Her medications were cut in half last Thursday so she only has to take medications a couple of times a day and no more waking up in the middle of the night for medication. Mom and Dad sure like this HAHA! Her pain is much much better now. She still is very uncomfortable in the morning until she has had some Motrin. Laying her down for a diaper change makes her wince. Getting in and out of her carseat are not her favorite things either. But as you can see in the picture on the left (which was taken today) she is back to her happy smiling self once again :)

Another peice of exciting news is that the geneticist called this afternoon to let us know that she did test positive for Noonan's Syndrome. She has a gene mutation of her PTPN11 gene. Now for those of you who know me well you know that every spare second I have had this evening (with 4 kids and a husband who is out of town there has not been many) I have been researching this mutation. Over all I am very comfortable with what I have read and the little I got from the doctor this afternoon on the phone. The biggest issue for Noonan's kids is congenital heart disease. This has now been corrected in Rose Nacheca so that is good. EVERY single thing that we have found to be wrong with her can be caused by Noonan's! Her heart defect, her short stature, hearing loss, all of it is a symptom of Noonan's. Now I know I sound way too excited upon discovering that she has a chronic medical condition but let me tell you why this seems like such a relief. Before we were feeling so overwhelmed because every time we went looking for something that could be wrong, most of the time we found something wrong. As the list of things started piling up it got to be very overwhelming and stressful thinking about what else we were going to find, what was the future going to look like for her. But now we have 1 diagnosis. Something we can look at and know what we can expect for her future. There can always be surprises along the way but from what I have been reading the most critical thing she will have to deal with was fixed two weeks ago today! Most Noonan's children have normal intelligence and live normal lives. Spending even a small amount of time with her you can know that she is a very smart little lady. She goes back to see the geneticist on Monday April 18th. At this time we will go over in more detail what to expect and she will answer any questions that we have.

We have come so far in 14 days!!! I am so thankful for everyone who has been praying for her. She is doing fantastic. Her skin tone has a nice pink glow to it. Her palms of her hands are pink :)

Good night!

We are home!!!!

We got to come home tonight. It was very disappointing not being able to update this while we were in the hospital. To go from open heart surgery to running, yes running, the halls in 4 days is absolutely amazing!!!

Those first two days were very challenging. Not just because of Rose Nacheca but because me being the emotional sponge that I am it was very difficult watching all the activity in the the Cardiac ICU. Both Tuesday and Wednesday nights we were directly across the hall from little infants who had also just had open heart surgery and had major crisises. All the doctors would rush in and send the parents out in the hall. Being that the wall is glass, it was like watching all the drama unfold on a TV screen. I would cuddle Rose Nacheca and just cry right along with the parents in the hall. Luckily they were able to get the situation under control and all the babies were ok. But what a scary thing for a parent to have to go through. I said many prayers for many people who I had never met before those two nights.

Once Rose Nacheca's chest tubes were out she really did perk right up. She was able to take wagon rides and explore the CVCC (CardioVascular Care Center). She quickly discovered they had toys, books and all kinds of things she wanted to play with. I used this to my advantage to bribe her to start eating LOL! Once she discovered those toys there was no stopping her. She still took lots of naps of course but she made friends with all the nurses who were lining the halls as she zoomed past them on all the riding toys they had there!

I am still in awe when the realization sets in that her heart is fixed. I see many signs of this already. Her nose and cheeks have a pink glow to them. The palms of her hands that used to be a very light brown color are now very very pink!!!!! It is a beautiful sight! It will be exciting to see if she starts to gain weight faster now. They believe that she will. I am very excited about this opportunity she has been given and also very glad that this week is over!

I had said before that I was having a hard time getting the strength to go through this but God really does give you what you need when you need it. As if the surgery was not enough excitement Dan had to speak at a funeral yesterday and Alex got an absessed tooth which had to be pulled out on Thursday. Due to severe swelling he had to go back to the oral surgeon today. Thank goodness for grandparents in times like this! It was heart breaking to not be able to hold his hand during this whole thing, I think I cried more about it than my brave little boy HAHA!! It feels very good to be home so that I can tuck all 4 kids into their own beds again :)

Thanks for all the prayers, I will continue to keep you updated on her progress. We have to go back for one more x-ray in the morning and then her post op appointment next Thursday. Have a wonderful weekend! Maybe when you tuck your kids in bed put your head on their chests and listen to the sweet sound of their hearts beating and let it fill you with warmth. I will never forget those families at the CVCC whose parents know all too well how lucky we are to be able to do this!

Post Op Day 1

Rose Nacheca did very well during her surgery. Once they got into her heart they found that she had more than one hole. We had been so disappointed when the catheter surgery on Valentine's day failed. Open heart surgery was something we desparately wanted to spare her. This news was a HUGE reminder of how God's plans are always perfect! If that surgery had been successful, if the patch had held, she would still have had a hole in her heart. Now she is lying in the bed next to me with a heart that is beating perfectly. This is such exciting news.

I sit here watching her, so very thankful for the opportunity that this special little girl has been given. This procedure would never have been possible in Haiti. Every doctor who ever listened to her heart got the same impression. You could see their face change as soon s they started listening to her heart. The words harsh, significant and extreme were all used to describe the sounds of the murmurs in her chest. Now it sounds perfect. Praise God!

Children's Hospital is amazing. The doctors and nurses are so wonderful and responsive. We got to stay at the Ronald McDonald house (which is one floor down from the heart unit) last night, so we were able to get a few good hours of sleep. They provided dinners for the families of children in the Intensive Care unit, free of charge every evening (and they are actually really good). I was even able to go down there and work out for 20 minutes on the exercise equipment they have for families.

They have kept Rose pretty sedated the whole day. There have been minor setbacks, like the chest tubes not coming out today, but over all she is doing great. Until the chest tubes are out we cannot hold her. The rare times she does wake up she is very unhappy. Not being able to comfort her is horrible. I crawled into bed with her so that she knew I was close. I held her hand and sang to her and she finally fell back asleep this evening.

Tomorrow once many of the tubes she has are gone, she will be more comfortable and be able to move around better. We can hold her and she will be able to start eating. So this will help her feel better faster.

Thanks for your continued prayers. The doctors say she is doing great. I wish she could talk to us. Goodnight!

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!