Lots of people are reaching out asking how Trish is doing. I think we are doing a solid job updating on the twins, and you can probably elicit my tone most days (at least Sister Dennis can)! Trish is going to write a post soon, but between the pumping, hospital, and basic bodily functions she doesn't have much time left. She would like you to know that physically she "is great and emotionally its day-by-day."
Scarlett doesn't have any updates to share today, she had a nice, calm, status quo day with some mommy cuddling.
Grayson had his pressures increased on the vent today and it helped him. They had "gases" drawn this morning then a couple hours after the changes and there was a big difference. His morning gas showed too much CO2, which is what prompted the change.
We had a "new" doctor today, but I was able to get the explanation about his vent settings. He is now on "BPD" settings. BPD is Bronchiopulmonary Dyslplasia which is also referred to as Chronic Lung Disease. The doctor compared it to running on a sprained ankle. In this case, Grayson needs to use his lungs, but they also need to grow correctly. Hopefully these settings will help him more by taking some of the work off his plate.
We're not too concerned with this new condition. Its pretty common in preemies and most of the time they outgrow it. This doctor likes to communicate directly and clearly, so he definitely gave us the information that we can worry about. He explained Grayson's PDA is 2mm and if it grows larger, we will probably be sent to Main Campus for surgery to close it. If it grows smaller, they will continue limiting his fluids and try more lasix, If it doesn't change, its a problem for the Monday doctor to figure out a plan.
He also communicated information about Grayson's brain that was tough to hear, even if we already knew it. Its one thing to hear "This can lead to developmental delays and/or deficits" and read about the possibilities online. It hits you differently when the doc says that YOUR kid, as of now, has a 90% chance of developmental delays/deficits, and if the PVL they saw starting to develop presents itself that probability goes to 95-98%
Trish and I wanted to share some verses we have dwelled on this week. The book in the Bible titled Philippians was written by Paul to a church in Greece that he had not been able to visit with in a while. He ends the letter with encouragement:
Philippians 4:4-7
Rejoice in the Lord always; again, I will say rejoice! Let your gentle spirit be known to all men. The Lord is near, Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.
Philippians 4:13
I can do all things through Him who strengthens me.
So we thank God that wherever this journey takes us, He will strengthen us and will provide for us. And we thank Him for such amazing people sharing in our journey, praying for us every day.
Before I pray today, I want to make a couple of comments regarding Grayson, the first being that we have seen so many miracles in this nearly 5 week journey, that I continue to pray and believe that we can see one with Grayson. Second, if in God's plan Grayson does end up with developmental delays, he couldn't have ended up with better parents who have already demonstrated the love and devotion they have for both their children. And finally, God will never give you a greater task to bear than you can, with his help, handle successfully. I have faith in both you and Tricia.
ReplyDeleteThere is a prayer that I say in all my classes everyday and have for at least the last 30 years. When my Mom died, my Seniors had the prayer done in calligraphy and framed for me. It hung in my house until two years ago when a recent graduate was tragically struck by a car and had a critical brain injury. I sent the framed prayer to his Mom as she sat by her comatose son. Yesterday, Connor came to school and brought the prayer back to me and I saw the miracles of his recovery. So today, I am praying that the Mother of Jesus intercede for Grayson...
Remember, O most gracious Virgin Mary, that never was it known, that anyone who fled to your protection, implored your help, or sought your intercession was left unaided. Inspired with this confidence, I fly unto you O Virgin of Virgins, my mother. To you I come, before you I stand, sinful and sorrowful. O Mother of the Word Incarnate, despise not my petitions, but in your mercy hear and answer me. Amen. Mary, hold little Grayson close as you did the Infant Savior. Ask Jesus to grant another miracle and heal his lungs, his PDA, and his brain issues.
Thank you God, for the good day that Scarlett had. Keep watch over her and her brother, who needs your special care right now. Continue to strengthen and support Tricia and Tim. When things are difficult, let them be a comfort to each other.
Beautiful prayer Sister Dennis!
ReplyDeleteThere was a post on Facebook a few weeks ago that really stuck with me.
It was from a friend that had an autism digionsis for her child- I hope I am getting it right. She mentioned there are no guarantees for even healthy babies!
God has a plan and that plan is the plan. We all have a plan and that plan is unknown for all of us-
I believe some much of what Sister Dennis said that you and Trish are amazing and you have already shown amazing ability to be the parents your children need! Tim I so amazed by your ability to process the medical talk and you and Trish are the greatest advocates for your children and you both have already shown such amazing faith and courage and I know one thing for certain that God will reward you both for your faith- I don't know how or when but I know your type of faith sings to the angels and it does not go unnoticed!
Grayson and Scarlett and you and Trish continue to light the way for believers and to shine light for those who don't
Your strength is inspiring and please know we are all here praying- hourly, daily, nightly- praying!
We love you all!!!!
The Memorare is my favorite prayer...That never was it said that anyone who fled to Thy protection, implored Thy help or sought Thy intercession was left unaided. I cherish and cling to these words.
ReplyDeleteWhat more can I say? Sr. D and Beth have said it so well for the day.
Yes, the communicated information can be daunting and troubling. I know it is important to be aware of this info and important for the doctors to note it, but , above all, God's plan for Grayson and Scarlett is supreme. His plan for these babies is the focus. We continue to ask for His plan to unfold and that His plan include healing for all of the issues that preemies face. Special delivery to Columbus: prayers, love, blessings, strength and grace for the day!! ...Inspired with this confidence, I fly unto Thee, O Virgin of Virgins, Our Mother.
The Memorare is also one of my favorites. I remember learning it early in grade school. I want to let you know that there are many daily prayers coming from Marietta for healing and strength.
ReplyDeleteWhat can be said but Amen. Know that what evert the road is, you will not walk it alone...My favorite is Footsteps... What a blessing you family is to all of us.
ReplyDelete