Last night Samuel turned 4 weeks old. Tomorrow marks 4 weeks at Egleston.
This morning when we came in after shift change, Samuel's lips were all crusty from dried saliva (he can't swallow on the paralytic), and so Richard and I set about cleaning them up. We were super gentle and just used a wet cloth to wipe them, but Samuel was not happy about it. His stats dropped quickly and significantly. We backed off immediately and gave him space to recover. That was at 10am. It's now almost 6pm, and his stats have leveled out half way between his starting point and the low point when we were cleaning him up. I doubt his stats will ever climb back up to where they were this morning.
We had been toying with the idea of moving to a private room, but several caregivers thought that was really risky. After this morning, Bryan and I decided to hold off for now at least. We told Richard this morning that Bryan and I really want to hold Samuel as he passes away, and so we made a plan for how that will happen if he starts to decline rapidly. We realize we are living in days where we will, in all likelihood, have to hand our son over to the Lord. I spent a good part of this morning feeling all knotted up inside and anxious. But I spent a long time praying out loud with Samuel and talking to God about how I'm feeling and how I don't want to give up my precious boy. There is comfort in having spoken to God about my heart, and by the time I had said what I wanted to, I felt a lot more peaceful. Samuel looks quite bad right now -- everyday he looks worse -- and I do ache for this to be over for him. It's excruciating to watch my baby suffer. I imagine my baby being healthy and whole in the arms of Jesus, and I look forward to that for him (though not for me).
My brother flew in town last night. Bryan, Matthew, and I spent a couple hours at Samuel's side, and then Matthew took the night shift while Bryan and I slept. Matthew was kind to brave an all-nighter when he has a newborn at home. My niece, June, was born 16 hours after Samuel. So Matthew is exhausted already, but he lovingly stayed with our son through the night. Tonight Bryan's brother, sister, and step-mom come in town. We are happy that these precious family members will get to meet Samuel.
I'll be honest -- this experience is dreadful. We are so tired and worn down. And we have hard, hard days ahead of us. I shudder when I think of what is yet to come. But again, there is such comfort in God's presence and in the oneness Bryan and I have as we trudge down this road. Today as I talked to God about my fears and broken heart, I pictured Him standing beside me with His hand on my shoulder, comforting me even as I cried out to Him. It reminded me of a very broken time in my life when a professor of mine stood beside me in the midst of deep pain and gently entered into that pain with me. I found such comfort from his presence and willingness to hurt alongside me, and I know the Lord is with me in my suffering. There is a peace that comes from falling into His love and grace and acceptance of me where I am.
Your prayers continue to uplift us. We need them in abundance. Thank you for joining with us in this journey.
Pryaing as your request states. I can not comprehend...wisdom, discernment, to touch and hold him...praying.
ReplyDelete-Allison Hodges
I will keep praying for strength and peace beyond all understanding!
ReplyDeleteI am glad Matthew is there with you. I wish I could be as well. Please know how much I love you. I like the idea of holding Samuel in the end. May that be a real comfort to you in a dreadful time.
ReplyDeleteKatherine:
ReplyDeleteAlthough it will mean the end of Samuel's earthly life, holding him will make you and Bryan feel more connected to Samuel than ever. You will be one. You are his Mama and he will feel your love. I send my heart and prayers to you in these final days as I know they are excrutiating. Lean on your wonderful family. But holding your precious little Samuel is it!
Love Kim
praying
ReplyDeleteWe continue to lift you guys up.
ReplyDeleteWe are thinking of your family and Samuel...know our thoughts and prayers are with you as you travel on this journey.
ReplyDeleteYou are two of the strongest parents...you carry yourselves with such grace even now. We are blessed to have met you, but sorry it was under these circumstances.
Thank you for your prayer requests for our daughter Susan Faith...Your words at her bedside touched us deeply.
Our children are such gifts and have taught us so much in such a short time...may peace be with you in the coming days.
Love,
The Jenness Family
Mike, Candice, Susan, John, Lauren and Meaghan
I am praying for little Samuel and for your entire family. I have been admiring your faith and the witness you have been to those around you. May God continue to give you that peace that surpasses all understanding.
ReplyDeleteIn Christ,
Diane Mackey
(a friend of your Aunt Colleen)
We have never met but your family is in our prayers. Your son has touched us and moved us immeasurably. Your family is nothing short of amazing. God is using Samuel and all of you. Keep your faith and your eyes on Him. We are praying!
ReplyDeleteTammy Laterveer
Actually, Mandie's mom says, "I have been praying for Samuel since Mandie told me he was born (in reality, before then); however, I have been praying very specifically for you and all 3 of your boys since I have been reading your informative and heart-rending updates.I identify with so many things you say, feelings you have, and situations in which you find yourselves in the hospital. I remember telling the Lord that I didn't want to go through the next hours/days/weeks.........and yet, at the same time leaning back on His gentle arms as they braced me to go through the next stressful event. He has proven to provide the strength you both need for what lies ahead. May God continue to strengthen and uplift you. We continue in prayer........Love, Mrs. B"
ReplyDeleteHugging you guys in my mind and continuing to pray that you feel Jesus' presence as you walk through this very dark valley.
ReplyDeleteReading your blogs is like having a quiet time. A challenge for me to rest in our struggles as we have great anxiety from unknowns. Thank you for your incredible honesty and openness. When we are being refined, the true "person" comes forward. I am amazed and blessed by your faith and trust in our God in this process. I have found myself praying, "Lord, I want to have faith like Bryan and Katherine". We love you and continue to pray for you frequently. You 2 are so precious!! Thank you for your example.
ReplyDeleteMindy Ward
Kathryn, you pictured Christ’s arm around your shoulder as you prayed your heart out to Him. I know He was there! I have seen Jesus carrying you in His arms close to his bosom in every blog you write! I see Him giving you strength as He carries you on His shoulder! I have seen God doing all of this for you and Bryan. I cannot imagine how “down and oh so weary” you must be but I know God has been raising you up to face each storm. You Raise Me Up by Josh Groban:
ReplyDelete“When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.
You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up: To more than I can be.
repeat
There is no life - no life without its hunger;
Each restless heart beats so imperfectly;
But when you come and I am filled with wonder,
Sometimes, I think I glimpse eternity.
You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up: To more than I can be.”
repeat
What He is doing for you, He is also doing for Samuel. He IS holding him close to His bosom, His face is shinning down on him constantly, He is holding you all in His Righteous, Victorious right hand…and He is taking hold of his and your right hands, saying to you “Do not fear, I will help you”!
You all are in our prayers! Your updates are so very precious to me, to us! I praise God that you not only pour out your heart to God but you also share it with us. We pray earnestly to our Great God who loves you, takes great delight in you and rejoices over you all with singing to strengthen you and to raise you up!
In His Great love, Martha Anne & Floyd
Praying, praying, praying for you, dear friends. And weeping with you.
ReplyDeleteI have never met your family but al of you are in my prayers and that God will heal your little Samuel.
ReplyDeleteWe can only continue to pray for your comfort. There is an army of friends that are heavy in heart with you. God deeply loves Mommy, Daddy, Caleb, Joel, and Samuel. We love you all too.
ReplyDeleteDoug & Wanda
Continuing to pray for each of you today. May you know again that
ReplyDelete"Because of the LORD's great love Bryan and Kathryn are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. Let Bryan and Kathryn say, 'The LORD is our portion; therefore we will wait for him.'" (Lam. 3:22-24)
Continue to hold tight to His promises and faithfulness. He loves you like no other and is using you in ways known only to Him. You are a blessing and you are loved.
We are praying with you too. Thank you for your candor and humility.
ReplyDeleteI am praying for your family as you enter into this time. While I'm certain none of us reading, nor you and Bryan are happy about what seems to be a looming cloud encompassing death, I pray that God will hold you in his hand and allow you to know peace and comfort during this time. I know that God holds Samuel in his hand.
ReplyDeleteMay God bless you with his peace - the peace that passes understanding.
ReplyDeleteYour sister in Christ,
April
I have never met you face to face...I am a friend of the Padilla's. Your sweet Samuel is etched in my mind and heart. I pray for you all so often and my heart aches for you.
ReplyDeleteI felt led to share these verses with you:
"Fear not, I have redeemed you; I have summoned you by name; you are mine.
When you pass through the waters; I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the holy One of Israel, your Savior;.... Since you are precious and honored in my sight, and because I love you." (Isaiah 43:1-4)
You are precious parents, a precious godly couple, and I know you are fully honoring and glorifying your Lord as you walk through the waters and the fire. Grace and Peace be yours in abundance.
Keely
My name is Mariana Weis. My daughter is Alyse thompson.I have been reading BABY SAMUELS blog all along now. I just want you to know my church group and friends in Texas are praying for you all the time.I want to tell you how inspired I am by the step into what I call "Wisdom" that I see you both taking. You are having the grace and courage to creat memories of Samuel and with him and his brothers. You are building a foundation for him as a part of your active family unit. Many people would be so sorrowful and grief stricken that they would be a "death watch"becuase that is all the oourage they could gather. I know this from personal experience.Then they would not have those special moments such as pictures and footprints and lulabyes to reflect back on.They end up with only the sorrow and terrible pain. You will have other things to remember. God bless you and grant you the peace of heart to know you are doing the right things at the right time and HE will lead you as you follow his footsteps.I find myself checking the blog many times a day.And I am almost afraid to read it but must.ALl your family is in the prayers of a vast number of us here in Texas.We are being ministerd to by the example of your faith both in the Lord and to each other. My the LORD God carry you when you can walk this path no more and bring you his peace.
ReplyDeleteMariana Weis