I know I don't often talk about my feeling regarding our family as a whole or my other children individually. I suppose i am focused on sharing this new world of Trisomy 18 and want to document it from a perspective relative to Alyssa.
I do want to acknowledge that how my heart speaks regarding Alyssa is similar for my other kids too. I know this doesn't need to be said, but I want to. Each of their births were (and continue to be) a miracle. I am appreciative of their lives and the time I have to spend with them. Unique individuals they each are and special to me in ways that are difficult to express. Alyssa's arrival heightens these feelings. I am so grateful and thankful to my living God for my children.
As a family I can say we are not typical, backwards in many ways but I think the love we have for one another is evident. While we need to express a little more patience and kindness towards one another, the bond is strong. I thank God for preserving my marriage so that my children can feel love and protected in a two parent household (before anything is said I was raised by a single mom). I think it is a benefit and a gift to them to have a mom and dad that like each other and them; in addition to loving them. We are blessed.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. (Psalm 139:14) Being grown in faith because of my daughters diagnosis of Trisomy 18, a rare genetic syndrome. This is my reality of loving Alyssa and the impact she makes in our family. I praise God for showing us His grace and revealing our human frailty throughout this journey.
Thursday, October 2, 2008
Pulmonary
Alyssa is 78 days old!!
Pulmonary Appointment Monday Sept 29th
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Alyssa's lungs were clear and her oxygen level was at 95%. (I was pleased b/c she had a stuffy nose.) She will be followed by the Pulmonolgist regularly.
Dr. M noted no concerns with Alyssa's lungs at all! They are functioning normally.
There is a concern as we knew regarding her diaphragm. Alyssa has a right side diaphragm eventration (Extreme elevation of her right half of the diaphragm, which is usually atrophic and abnormally thin)and it is slightly larger than when at birth but not problematic at this time.
The only way to repair this problem is by surgery but that isn't recommended now. If she should develop problems relating to the DE, then we will look further into correcting with surgery.
This was all good news. The Lord again has spared us the worst of the worst. Big prayers have been answered. My question to each doctor is...we know the prognosis of her condition based on that what would be the expected cause of her passing. Dr. M is in agreement with all the rest that it would be a respiratory event. Since her lungs are healthy it would likely be aspiration pneumonia (vomit or reflux gets into the lungs, causing inflammation). Which means how Alyssa tolerates feeding ,eating is important. We don't want her to choke or have difficulty swallowing .
I know it is strange to feel joyful in knowing the above but it relieves some of the stress of thinking that at any moment her lungs will just stop working or that they are working inefficiently. It is helpful to know that more than likely it would be a specific event like choking that could cause the pneumonia.
The best news of all is that Alyssa has had 0% of recordable apnea episodes. This information was downloaded from her apnea monitor. 0%!! The breaks in breathing I had witnessed (2) were not related to T18 but the type any infant has~ it may have seemed worse to me because I was (am) so focused on looking for breaks in breathing. It is normal for infants to take 5-10 second breathing breaks 20 seconds or more is an apnea event.
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The next big appointment in our book is the geneticist. We can get a lot of good information from her hopefully. i don't expect she'll have much at our initial appointment but may help be a guide in all of this.
I need to go but I just want to acknowledge God's hand in this, can you see it? Not just at the pulmonary appointment which his work is clearly evident or at the heart doctor but in all of this. We received the worst possible news parents can get..before we had a chance to celebrate Alyssa's presence we were thinking of her departure. Yet her she is 78 days later. We were told how all the major organ systems are affected by T18 and again God's grace is evident.
What a fool I was before knowing him what a fool! Everyday and in every way I now know He is here, He knows every hair on my head and thought in my mind. Praising him all the days of my life, thanking him for all the days of my daughters.
Thanks you for your prayers regarding these appointments and for everything.
Pulmonary Appointment Monday Sept 29th
--------------------------------------------------------------------------------
Alyssa's lungs were clear and her oxygen level was at 95%. (I was pleased b/c she had a stuffy nose.) She will be followed by the Pulmonolgist regularly.
Dr. M noted no concerns with Alyssa's lungs at all! They are functioning normally.
There is a concern as we knew regarding her diaphragm. Alyssa has a right side diaphragm eventration (Extreme elevation of her right half of the diaphragm, which is usually atrophic and abnormally thin)and it is slightly larger than when at birth but not problematic at this time.
The only way to repair this problem is by surgery but that isn't recommended now. If she should develop problems relating to the DE, then we will look further into correcting with surgery.
This was all good news. The Lord again has spared us the worst of the worst. Big prayers have been answered. My question to each doctor is...we know the prognosis of her condition based on that what would be the expected cause of her passing. Dr. M is in agreement with all the rest that it would be a respiratory event. Since her lungs are healthy it would likely be aspiration pneumonia (vomit or reflux gets into the lungs, causing inflammation). Which means how Alyssa tolerates feeding ,eating is important. We don't want her to choke or have difficulty swallowing .
I know it is strange to feel joyful in knowing the above but it relieves some of the stress of thinking that at any moment her lungs will just stop working or that they are working inefficiently. It is helpful to know that more than likely it would be a specific event like choking that could cause the pneumonia.
The best news of all is that Alyssa has had 0% of recordable apnea episodes. This information was downloaded from her apnea monitor. 0%!! The breaks in breathing I had witnessed (2) were not related to T18 but the type any infant has~ it may have seemed worse to me because I was (am) so focused on looking for breaks in breathing. It is normal for infants to take 5-10 second breathing breaks 20 seconds or more is an apnea event.
--------------------------------------------------------------------------------
The next big appointment in our book is the geneticist. We can get a lot of good information from her hopefully. i don't expect she'll have much at our initial appointment but may help be a guide in all of this.
I need to go but I just want to acknowledge God's hand in this, can you see it? Not just at the pulmonary appointment which his work is clearly evident or at the heart doctor but in all of this. We received the worst possible news parents can get..before we had a chance to celebrate Alyssa's presence we were thinking of her departure. Yet her she is 78 days later. We were told how all the major organ systems are affected by T18 and again God's grace is evident.
What a fool I was before knowing him what a fool! Everyday and in every way I now know He is here, He knows every hair on my head and thought in my mind. Praising him all the days of my life, thanking him for all the days of my daughters.
Thanks you for your prayers regarding these appointments and for everything.
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