Finding A New Normal

Wednesday, May 6, 2009 8:45 PM, CDT

As Leah approaches 7 weeks old, our family begins striving towards finding our new normal. Her life is such a miracle, as she continues to fight to stay with us. God is definitely showering us with His grace, as we live more and more boldly each day, feeling a little bit less afraid with each milestone that Leah achieves. According to our doctors, Leah should not be 7 weeks old, and still in our arms.

Leah now weights 7 lbs., gaining a healthy 10 oz. over the past 2 weeks. This is almost what a normal baby would be expected to gain. Leah looks so good with her baby chub.... Triple rolls under her chin and on her thighs! Luckily for her, she wears it so well! Though Kyla told her Grandma that it wasn't nice to call Leah chubby (what a good big sister, already sticking up for her) It is so wonderful that Leah seems to be doing so much "better" than expected. She still faces huge challenging mountains that she climbs daily, the apnea, seizures and trouble resting. However as her sickness improved, she's keeping full feedings down again, along with her medications. We've added another medication for her Diabetes that should help her stay more hydrated. For the first time, she's had spit in her mouth, even blowing a few spit bubbles, which I happen to think is adorable! And we're adding a third seizure medication as needed, which seems to allow Leah to have more alert times in which she is such a joy to interact with. She loves hearing our voices and even responds with smiles on occasion! Kyla is the best at singing her lullabies (she's decided that absolutely any song she knows happens to be a lullaby, even Jingle Bells).

As I hold her all snuggled against my shoulder, and can smell her soft baby hair, I feel the deepest sense of truly living! Even in just a mere moment, I feel so clearly an understanding of life, and purpose and value! Leah embodies all that God values - it's not in her abilities or achievements that bring Him glory...but in the reality that her "imperfect body" truly has no choice but full submission to God's will and design that glorifies Him. How ironic, that with our "perfectly healthy minds and bodies" we struggle so much against God's design for us, but that when we draw close to the Lord, and follow His leading we bring Him the most glory. We strive for our own personal successes, based on our society's definition of success. Yet how often, these very pursuits can distract or even replace our focus on God. Admits all my sleep deprivation, God is still speaking to my heart, and teaching me through my precious Leah.


On the topic of sleep deprivation, we are learning to juggle Leah's needs and slowly trying to add the needs of our other 3 family members back into the mix. Our greatest need as parents right now is for sleep. As Leah grows, her body is getting more used to her seizure medications, therefore they are less effective. And in her first few weeks of life, she slept pretty well at night, because the heavy medications helped to knock her out. But now, her body is much more awake, especially at night, which is causing her to have more night seizures as well as periods of "normal fussy baby cries". I tell myself I need to truly treasure each moment, even these periods of Leah crying with such strength that she's red in the face (as red sure beats her turning blue)! But the reality of many nights only truly getting 3 hours of sleep for Mom isn't going to allow me to sustain this pace should Leah continue needing my care for much longer. Our greatest prayer request is for more sleep for Mom and Dad. We aren't sure how God will choose to provide that, through either Leah sleeping better, or through nighttime care assistance with Leah, or some other means. But we know that in asking, God WILL provide! The lack of sleep is taking a toll, and now I'm finding myself feeling a bit sick...and there just isn't any free time to rest and recuperate.

I have also recently discovered a Yahoo Group for HPE (the acronym for Leah's condition). This has brought me such hope and encouragement this week. There is also a nonprofit called Families for HoPE, which is a support group for families dealing with HPE. Several mothers with children like Leah have emailed me and begun sharing their experiences along a similar journey with me. One little girl, who was a miralce baby like Leah, is now a miracle 3-year-old, with the same beautiful face and similar medical struggles as our Leah. For some reason, this one precious little girl, has allowed me to dream even bigger dreams for Leah, knowing that survival past months is possible although not the most probable. As we know, nothing is impossible for our God, and He is the author of Leah's life. We are humbled by His answers to our specific prayers on behalf of Leah, and we know that even when His decision will be different than how we are praying - He'll allow it to truly be "well with our souls". Those are the promises of God to which we cling during uncertain times! In God alone can we trust