I recently went back through old blogs to remind myself of God's faithfulness and kindness during the very difficult, very fraught, very blessed first 6 months of our quints’ lives. I pulled out a few quotes, which are included at the end of this post. I am amazed at God’s incredible work in Seth’s body, in particular. In September of this year David asked him to consider joining Cross-Country. We didn’t know if he was going to be eligible, due to his bronchopulmonary dysplasia and needing oxygen during illnesses even through his 5th year of life. However, he was cleared to compete, however, and he proceeded to win a medal in his very first race! We were so grateful we may have shed a few tears — especially when “big” brother David, having completed the race a few minutes before, ran him home. ❤️
Then a week or two later David, Gavin, and Seth joined some missionary friends from our neighborhood and did a Spartan 5K and obstacle course! God has certainly fulfilled Ephesians 3:20 in our lives over and over again. Many of you probably remember that was what immediately went through my mind when the tech said, “And there’s number five,” during my 6 week ultrasound.
We're counting on the Lord continuing to fulfill Ephesians 3:20 as we seek to navigate life with five teenage middle-schoolers with wisdom and winsomeness! Junior high is not easy, especially for the girls. We are unutterably grateful for such amazing, godly teachers and staff -- including the school counselor. Our God truly goes before us.
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| Jumping over the finish line fire! |
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Dad and Seth stick together |
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| Seth's first cross-country race |
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| Matching medals! David is also wearing the team medal |
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| A very proud Grandmommy |
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| . . . and an equally proud Grandpadad! |
Past blogs
Thursday Sept 27th, 2012: The doctor said that he has seen many babies with Seth's lung problem and, barring a very significant improvement, is expecting that he will be going home on a ventilator through a tracheostomy (ventilator tube to his trachea through the neck). Our prayer is that God will do a mighty work in his body and heal his lungs quickly and effectively. He is able!
Sept 28th: I am sad tonight about Seth. We got to visit with him for a while today while the top of his incubator was off and the sides were down. He looked straight into my eyes as I sang songs to him, tears rolling down my face. He is so precious and vulnerable and "trapped," although he "should" be trapped in my body still, so I need to think of it that way. But the tube down his throat is such a sad, hard thing, especially the silent crying. All this to say, thanks for the prayers. I need them! Seth needs them; obviously we ALL need them! So thankful to KNOW God is loving and actively controlling everything that happens. He is good all the time. I have rarely wanted Jesus to return as much as I do now, watching my little baby boy struggle and hearing of all the suffering in the world around us and overseas. I am so glad there is a Redeemer who will make all things well and who cares more than we can imagine in the meantime, even turning evil into good.
Sept 29th: Seth's situation is not good right now. They have gotten his carbon dioxide down to acceptable levels, but at the cost of his oxygen being quite high in the 70 percent range. They are frustrated and baffled, not knowing what is wrong with him right now. Needless to say, we are as well and pray that the Lord's wisdom and power would fill the NICU, the doctors, NPs, and nurses, and little Seth's body especially.
Oct 1: I got to be with Seth during his echocardiogram and for a long while afterward, stroking his temple and singing to him. He seemed really comfy and happy. He looked at me for a while, then went to sleep, and his oxygen saturation stayed good the entire time. Thank God he wasn't so "touchy" today and handled his exam so well! He is SUCH a precious little boy. It satisfies me deeply to be able to touch and kiss him and smile into his sweet eyes.
Oct 4: The results show that he has pulmonary hypertension again, so he is back on the full dose of nitric oxide - he had been weaned to 12 ppm; is now on 20 ppm. His PDA was tiny, thank God, but the nitric dilates all blood vessels so it's likely the PDA will also enlarge as they treat the pulmonary hypertension. It's such a tightrope walk and roller-coaster! I don't even really know how to pray except for healing. Obviously the Lord doesn't need me to pray for all the right things in order to do what's needed for Seth. Sometimes it really does seem as though our prayers are just groanings, and we depend on our Triune God's wisdom, love, intercession, power and sovereignty. Thank you for joining us in prayer; a HUGE encouragement!
Hi everyone,
It's taken several hours to process enough to be able to sit down and write this. We know many of you will pray and all of you care, so we want to let you know that Seth has a heterozygous [on one chromosome only, not both] genetic mutation (ABCA3) likely affecting his lungs' ability to properly manufacture surfactant. Surfactant is critical for breathing as it allows the lungs to continue inflating properly. How much of the lung disease is due to surfactant deficiency and how much is due to his prematurity and resulting need for machines and oxygen, we don't know, but it's likely that the genetic mutation is at least exacerbating his condition. An ABCA3 mutation on both chromosomes (homozygous; from mom and dad) is often fatal. However, given that Seth's mutation is only on one chromosome (heterozygous), we don't know where he falls in the spectrum of disease. Is he one of those who will do better and grow lung tissue fast enough to compensate for both the machine/oxygen damage and genetic mutation? Obviously he is producing SOME surfactant, or he would not have survived at all. (As one doc said a couple weeks ago, he would bet Seth did not have a surfactant deficiency mutation because he wasn't sick enough.) Or is he one of the babies who will ultimately lose the battle, despite all the support and treatment the hospital can give him? We have no way of knowing. We do know Who wrote the book of Seth's life before one of his days came to be, though. (Psalm 139) That doesn't mean this isn't very difficult and sad, especially the thought of how long he could be in the NICU and how painful it will be if there comes a time when we turn off the machines and say goodbye.
Needless to say, I cried a fair amount during the meeting with the neonatologists, neonatal nurse practitioner, and nurses today. My crying can't help Seth, though, and could hurt him (and the other precious babes) because it wears me out! I need to be in "top form" to provide the nourishment and love he and his siblings need, as well as continue to mother Isaac here at home. We will be busier than ever now that we will have a child at Children's Medical Center, others at St. Paul's for a few more weeks, still others coming home soon (Lord willing), plus Isaac. So this is a plea for any additional volunteers, especially those who can commit longterm and those who have experience with nursing. Volunteers, including those who can help keep home from falling down around our ears, will enable us to be with Seth as he grows increasingly aware of his surroundings and needs increasing amounts of interaction with his parents, grandparents and environment and/or as he grows increasingly sick. We're in a wait and see period right now.
Seth still has a PDA and the pulmonary hypertension, but the blood flow through the PDA is the reverse of what they would expect given his pulmonary hypertension, so that's perplexing. He will undergo very extensive imaging tonight or tomorrow morning. They may decide to ligate the PDA despite how risky the surgery would be given his current poor lung condition. They may add another drug to the nitric oxide to ramp up treatment of the pulmonary hypertension. It's the tightrope walk again. We continue to pray for wisdom for the medical staff.
To sum up, in the specialist's words, Seth is very sick and there is a significant possibility that he could die. Not that we didn't already know that, but I guess the possibility is higher than I expected. I like what my mom says: "Either way, Seth wins. He gets to live here, loved and cared for, or he gets to go be with Jesus." (And we will join him one day!) My biggest goal is to make sure he is LOVED and cared for tenderly. He's been getting regular sedative medication, pain medication (although they've been able to wean that down a bit and he's been more alert and tolerating it well), plus "Sweet Ease" sugar solution on his tongue during needle sticks to trick his pain sensors - he loves it!
Thank you for praying. We've never appreciated it more.
To God be the Glory,
Carrie for Gavin, too
I get choked up thinking back to how very, very sick he was, and how a couple of times we thought the Lord might be taking him imminently. My gratitude is just overwhelming. Once again, thanks a million times over for all your prayers and thoughts and concern! It's indescribably wonderful to see him so happy and healthy, loved and loving.
