Worth it all...

Where to start?

Our first appt today was for our routine weekly ultrasound which showed everything to be normal and doing good. His Doppler looked well, his ventricles still normal and he is already practicing breathing on his own which all are really great things. We will measure his growth next week. 

The next appt up was for fetal echo which showed that he still has his aortic stenosis BUT it is still mild which is a big plus. The cardiologist went over that when kids have a mild stenosis is generally something they don't intervene with surgery and they continue to monitor it with age. We will be seen back in 6 weeks where 2 things could have happened. 1) his stenosis is the same which he feels is the more likely case or 2) the stenosis has gotten worse which would mean more monitoring to decide on surgery which would entail going into the heart with a valve and balloon, inflating the balloon into the value to open it up and then deflating it and pulling it back out. This is an unknown still at this point and will take additional monitoring. 

We then had our meeting with the Dr. and the genetic counselor who received the results of the second mircoarray screening of the chromosomes. They have detected the reasons that have restricted his growth. Our son has two syndromes that involve two different chromosome abnormalities. 1) Is Wolf-Hirschhorn which is a partial deletion of the 4p  chromosome and 2) Russell-Silver Syndrome which is a partial duplication of 11p chromosome. Both of the syndromes together explain his IUGR (inter uterine growth restrictions) as well as his congenital heart defect.

These syndromes can mean a lot for our son. They can include a list of things that they expect for him to have such as he will be small with low muscle tone, he may have seizure's (in what i have researched a 50/50 chance), he may have difficulty eating which would mean that he would need to have a feeding tube inserted into the side of his belly, he may have hearing loss, there may be cognitive disorder and he may look different. 

All of the above things are something that the Dr's are expecting but they have only pulled 3 cases of people who have these syndromes together. Another big deciding factor is how the extra 11p chromosome will behave depending on if it was inherited by either me or my husband and we can choose to have further testing done which is something we haven't decided. 

The Dr also mentioned that now that they know what they are dealing with they don't feel that pre-term labor is a concern and vaginal delivery is a possibility and I have my own hesitations to going through with that and something I need to be in prayer about. 

We do not know yet how severe Bennett's case of these syndromes are as we know there are two different sides, mild and severe. We will have to take it when he arrives. We will still be having weekly visits to check his Doppler's and growth, also to plan more about labor.

First off, I had to smile again today at God because when the genetic counselor was starting to explain Bennett's condition, in the same room, and the same weather as our first appt when we received the news, The sun AGAIN came through the clouds and was shining down on my face. And I cant explain to you the relief one can feel in that moment. Its God's way of showing me that he cares for me, gives me peace, loves me and wants me to trust him.  

Now to get to my emotions of all this. (My husband is out of town and thankfully my sister was able to attend for support and some healthy laughs) In all honesty, of course my flesh is emotional and somewhat fearful and you have all the Why questions BUT beyond that, I still feel an overwhelming sense of peace. I know that my God loves me unconditionally, loves Bennett more than I could ever know and has given us this sweet little piece of heaven. And to be completely honest and raw...I FEEL HUMBLED!!! Humbled that my God chose me and my husband to have this child, to love this child and walk this journey with him. With tears in my eyes I am thanking God. 

This journey will not be easy but with positivity and belief in our hearts we know that our god is a God of miracles and we still believe that. We do not know how long Bennett will be with us but you better believe that every second of every day we will love this boy unconditionally, teach our girls to love him unconditionally and we will continue praising our God. Something that the enemy planned for evil will be for the Lords Glory, and God alone will receive all the honor. Our Bennett is already touching lives and I know my God has BIG PLANS for our boy!!! He is so special and we are so excited to have him apart of this family. 

I continue to be thankful in knowing that the Lord never said it would be easy, but that IT WOULD BE WORTH IT. and my son is WORTH IT. He is worth every prayer, every tear, every fear. 

We ask for your continued prayers in our journey and will update you always. Blessings upon your households.

The Puente Family xxx