Seton’s sixth week of life with us was overall quiet and uneventful, and we are so grateful. His feeding tube has stayed in for an entire week now, so thank God and thank each one of you for your prayers for that. We hope with all we have the streak continues well into his future. We did not meet with Dr. Habersang this week, so there are no major updates in that regard. We have reduced his oxygen from one liter to one-quarter liter, and he continues to require less suction and swallows on his own more and more. He has appeared slightly more spastic in the last several days, which we are guessing might be related to his growth and the need to increase his Baclofen dosage. We will discuss this with the doctor on Monday.
As promised last week, here are some pictures from Seton’s one month photo session:
I’ve really struggled with what to write tonight. Sometimes I feel like we’re living life through a bipolar perspective. We can’t even attempt to count the times and ways we’ve been loved and blessed. It really is uplifting and encouraging. As the days continue to accumulate, we mark each a victory, but the weight of walking through this circumstance becomes cumbersome at times. Physical and mental exhaustion try to root deeper, and I find myself less able to contest it. Our well is running dry.
It would be quite easy for us to slip in our efforts or even to give up. Believe me; I’ve entertained the notion on more than one occasion, but my heart and my spirit refuse. Our God is bigger than anything we face, and we will not walk alone. We have to believe it, we have to know it, and we have to carry it out.
Zane
"I consider that our present sufferings are not worth comparing to the glory that will be revealed to us." Romans 8:18
It is hard enough to care for a "normal" newborn; I can only imagine how much more difficult it is to care for one with such special needs. The strength and courage you have to write these posts each week amazes me. I don't know that I would be willing to share so openly. I pray that you all find the strength, guidance, and comfort that you need. Thank you for the pictures; Baby Seton is precious. :)
ReplyDeleteZane thank you for your words and updates. Your family inspires us EVERY day - although you are tired and weary your faith in our Lord is such an example to live by. We pray for you guys daily and we talk about you guys are leading us by example.
ReplyDeleteZane, your pictures are absolutely amazing...what a beautiful gift! I wanted you to know today that not only are people loving you and praying for you, but we are cheering you on! You, and Shawna and Seton have people rallying around you. I love how you say you mark each day a victory. I hope in those cumbersome moments God will give you reflections of each and every victory, every success, and every joy!
ReplyDeleteWhitney
Zane, you and Shawna are amazing to watch as you care for you new sweet baby boy. Although everyday poses as a challenge you both have taken such great control. I know that your faith is thin at times, but Seton has already showed that the faith is there. Keep holding strong! Believe in the powers that are, as we all pray for easier more manageable days ahead. Seton's one month pictures are truly beautiful! Thinking of you all daily!!
ReplyDeleteI saw this verse and thought of you guys. I have followed your blog since Emily linked you to hers.
ReplyDelete"But I will always have hope and will praise you more and more." Psalms 71:14
Stay strong in your faith because you do not walk alone HE is always by your side or carrying you.
Kim(Emily's cousin)
Following your family's story - many prayers & well wishes to you, Shawna & Seton. Blessings & Isaiah 41:10
ReplyDelete