It has been a while since we could say this, but Samuel has had a relatively calm day. Thank you, Lord. It seems that the current plan is to let the oscillator and the nitric oxide do their work on his lungs. The hard part is that he has now been on the oscillator for two full days and they have only barely weaned him. It feels like his lungs have been taking one step forward and two steps back since we’ve been here. Please pray that his current treatment would alleviate the pulmonary hypertension and allow him to eventually breathe on his own.
Today marks a milestone in Samuel’s life: the first day that he has some of mommy’s milk in his tummy. He is now getting a constant drip of thawed breast milk through a feeding tube in his right nostril. Though not a medical hurdle, it was nice to have something to celebrate. As long as the additional blood now needed in his gut to digest the food does not diminish the blood flow to his heart and lungs, this can only be a good thing.
Another cool thing today was that Kathryn’s mom, Pat, got to spend a good part of the day with Samuel. Kathryn’s uncle and cousins took Caleb and Joel today, and from the sound of it, they had a blast (no surprise). Since we can only have two of us at his bed at a time Kathryn, Grandma, and I took turns swapping out.
Even on these calmer days the CICU can be a stressful place. There was a “Code Blue” announced over the hospital intercom a few minutes ago. There have probably been 8-10 since we’ve been here. It was wild to see half a dozen doctors, nurses, and respiratory therapists dart towards the door waiting to hear the location announced. Kathryn and I immediately found ourselves praying for the patient, their family, and the doctors.
I’ve also found that, too often, my emotions are hitched to the numbers on the monitors around Samuel, which go up and down regularly. When they go in a favorable direction, I feel lighter and more hopeful. On the other hand, when they are trending in the other direction, I move toward anxiety. I constantly need to remind myself that my hope is not in monitors. It is not in doctors or modern medicine. And though we pray desperately for Samuel's healing, ultimately our hope is not even anchored there. My hope is in Jesus Christ in whom we have received life that is not limited to this world and these bodies. Because of the grace of God, just as Jesus was raised from the dead, those who place their trust in Him will be given a new body in a new heaven and a new earth. One description of this in the book of Revelation is particularly hopeful: “’and He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain; the first things have passed away.’ And He who sits on the throne said, ‘Behold, I am making all things new.’” I look forward to that.
I’m aware that, to those of you who do not believe in God or who would not consider yourselves followers of Jesus, this may sound crazy or weird, but if that is true – and I believe that it is – it is the best news in the world. Now, I wish that my emotions were more attached to this truth than they are most of the time, but these are the convictions around which we orient our lives and they anchor our hope.
God's glory is shining brightly through Samuel's life, your faithfulness and this blog! Thanks for sharing your hearts, we are praying continuously.
ReplyDeleteDeborah C.
Thank you Jesus for a calm day! It is so exciting to see how Samuel has reached and touched the hearts and lives of so many... the Lord really is working in and through his heart! What an encouragement and tiny perfect blessing he is. God rejoices in ya'll... your faithfulness, hope, and love.
ReplyDeleteLove you guys
xoxo
What a joy to be part of Samuel's Hospital Bedside Team today. Thank you, Dave and Jonathan, for having the idea and hosting Camp Dash. I loved sitting my sweet Baby Samuel's bedside and talking to him, touching him (after sterilizing my hands before each touch) and even telling him a story, and I thanked God for each good news item I could think of...his skin color was more natural today, his bilirubin count was better, his blood oxygen count seemed more stable, his pulse was level, and he was taking in some of mommy's milk. All things to rejoice over even if I can't spell them or understand them all.
ReplyDeleteKathryn and Bryan, you are amazing parents, and I am blessed to be Gab'm to your precious sons.
Prayers tonight for Samuel from Gab'm's friends in North Texas.
ReplyDeleteOh how I am praying for you all! I am sure it is so difficult to watch your little one going through so much and still have no definitive answers. I am so glad you got some support and encouragement from Dr. Kim. He's Abby's cardiologist and brings us encouragement every time we see him.
ReplyDeleteEntrusting God with Samuel's care,
Ainsley
I was thinking of you last night as I was singing Luke to sleep and singing "Love Lifted Me." I always think of the Apinis family whenever I hear that song and it brings me back to so many wonderful memories of you all. The words are so true. You and precious Samuel are lifted in love and prayer.
ReplyDeleteDear Kathryn and Bryan,
ReplyDeleteKnow that you are often being thought of and prayed for by some of your old Pine Cove friends in Texas! Thanks for faithfully posting updates and for sharing what you are learning. So challenging and encouraging for my own life! My heart is full of emotion for y'all! Continue to cling to Him and His promises! He will not fail us!
Love,
Jeff and Jenny Lay (Backfire and Special K)
Bryan and Katherine:
ReplyDeleteI follow your blog voraciously and have been kept abreast of Samuel's life from "your/our dear" Marta. Samuel is on my mind, heart, and in our prayers constantly, as are you two and your other sweet boys. I want to add that when our son Willie was sick in the intensive care for weeks, it was a grueling experience. I love that you all keep a blog as I remember everyone wanting to know how Willie was, and I could not make phone calls either. Willie also had people around the country praying for him and I am sure this helped him survive. Please know that you are not alone. Other parents have been through the unique position of having such an ill child. From what I read, the two of you, with your faith and one another,are handling the situation with grace, perspective, patience, and love. Continue to be kind to yourselves and to lean on one another. Know also that "your/our dear" Marta is in good hands here, as I check in on her every day regarding her new nephew. By the way, Samuel is just so beautiful and Marta says he looks just like Caleb when he was born. I admire you both and need you to know you are never far away from my family's love and prayers.
Kim
Dear Brian and Kat,
ReplyDeleteThank you for sharing Samuel with all of us. We can't wait to meet him some day soon. Tim's mom "Tutu" wanted me to pass along to you that she and Tim's dad have been reading your blog regularly through our blog and are praying for you, Samuel, Caleb and Joel.