Dear Family and Friends,
Greetings as the hope of Spring beckons us outside again. We are happy to have made it through the cold, dark days of winter with Asher, now 7 months old! The rest of us have suffered colds and viruses, but this little guy has avoided all of them with the help of his vaccines and breast milk.
Overall, there has been little change in his status. He has continued to grow (almost 12 lbs), but has slowed down slightly, so we are adjusting for that nutritionally to help him keep the pace. He has improved his ability to track visually and is really quite interactive, which we all love! His smiles and mimicking coos bring us deep joy. He is making very slow progress, orally, but is learning to allow a pacifier into his mouth without gagging. We have been experimenting with whole foods like apples in his mouth, just for tasting - very entertaining. The presence of the NG tube remains irritating, but he tolerates it far better than anyone of us would. At this point, there is still no timeline regarding placement of a "G tube" (one that would go directly into his belly, instead of through his nose). Any surgeries are still a ways off, unless his lung tissue demonstrates maturation, indicating his ability to handle sedation.
We are thankful to have all the hired helpers that we need at this time. Each one is a friend whom we already knew and who loves Asher and our family! We are so grateful to each of them and to so many who also volunteer their time to help me run errands, work, attend church, give us date nights, or help me during Michael's rehearsal nights with all the boys.
In the last couple weeks, Asher has had a handful of episodes where he turned quite pale or blue. It coincides with bowel movements and indicates that the blood flow through the holes in his heart has briefly reversed, due to the increased intrathoracic pressure as he bears down. The only things we can do in these moments are to increase his oxygen level and comfort him until he can recover. The episode lasts only a few minutes, though it feels like an eternity, and the recovery, 15 minutes or so. It is in these moments, that we hold him extra close and are reminded of his and all of our fragility. Each breath is labored for him and seemingly, so close to a downward spiral where we could lose him. We haven't felt this worried in a while, and it's a tough wake-up call.
Tonight, Ethan, Asher, and I were reading a book about baby Moses. When we read about his mother placing him in a basket in the river, I mentioned that she must have been scared for her baby son. Ethan then said, "Yeah, because he could've died. Mommy, could Asher die?" I had to respond honestly. He covered his face with his hand, but I could still see his out-turned bottom lip. This is a reality that none of us want to face. Truly, none of us know when our last breath will be, but we have hope in a God who does. He has sustained us thus far and will sustain us still as we continually face uncertainty.
The coming six weeks hold a lot of change for our family. We are under contract on a new home, still in town, that will better meet our needs. As crazy as it sounds to move at a time like this, we have seen God's kindness in the whole process. Our current home sold in no time, and so many details have worked out in extraordinary ways. We are very excited about this new place, but we will dearly miss our neighbors on Chisholm Place. They have been like family to us. I'm pretty sure we will witness a miracle as we again need to rely on our family, our church, and our community during this transition. If you are local and want to help with the move, just let us know. We close on our new home on March 25th and have until the end of April to move in (end goal is April 25).
Let us know if you would like our new address.
Again, we are so grateful to be coming into this season of Easter with eternal hope in the Risen Lord, who sustains our every breath!
With Love and Gratitude,
Michael, Laura, Noah, Ethan, and Asher
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| Asher's First Nap in his new bedroom! (We were just walking through) |
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| Discovering his feeding tube |
The video/EEG monitoring came back almost completely negative for seizures. While we can't be 100% certain because he didn't have one while in the hospital, his tracings didn't appear prone for seizure activity and for a little guy with so much going on, they actually looked "quite good" for a baby his age. That was a relief and an encouragement. The episodes are, then, most likely caused by that change in pulmonary blood pressures, as we had thought before. We can do some things to help him avoid having them, but it sounds like they may not go away, given his anatomy.
