The last three weeks have been quite a challenge. Overall Emilie is doing well. The surgery to place the shunt was successful, and it’s working well. There have been no infections or other complications with it… Praise the Lord! Last week she did suffer from a minor cold, but has since recovered.
The challenge is specifically related to her feedings. For the last three weeks, Holly and I have been praying and pushing for her to be released. Her breathing is stable, the hydrocephalous has been addressed, her pooh smells AWFUL and comes out frequently, she now weighs 8lbs 13 ounces and is slowly (but consistently) gaining weight, and her overall health is good. Based on our parental insight we feel there is no further reason for her to remain hospitalized.
The doctors on the other hand do not agree. They feel Emilie needs a g-tube (gastrostomy tube) because she’s not consistently nippling all of her food. Of the 510 ML she’s suppose to eat every day, she nipples between 480-490ML. Normally they would gavage whatever is left after she nipples, however last week her NG tube came out and I have since persuaded the nurses to not put it back in. Gratefully we’ve had a few great nurses who have been willing to work with us. 🙂
Though she has been gaining weight, it has been slower than what the doctors feel comfortable with. Consequently they not so subtly suggest that she needs this g-tube. In theory Holly and I are not totally against the g-tube. We just feel that she deserves every chance to prove her ability to eat before we jump to surgically placing a hole in her stomach. Further, we feel having her at home under our care will provide the best chance for her to succeed. If she’s still not gaining substantial weight and eating well after a few weeks at home, we will then entertain other options.
On Tuesday the doctors told us that she can potentially be discharged today, Friday Sept 6th… depending on how she does over these last few days. She eats every 4 hours (12am, 4am, 8am, 12pm, 4pm, 8pm), and so Holly and I have made sure we’re with her during these times to feed her.
I must be honest, its been both spiritually, emotionally, and physically exhausting… especially emotionally. We’ve been walking this journey for 143 days now and the last 30 days have really taken their toll. We’re ready for this to be over. We’re ready for her to be home. Yet we recognize she is God’s hands, and so we continue to press. We have not lost faith nor are we giving in. We still believe the effectual fervent prayers of the righteous avail much. We still believe man doesn’t live by bread alone. We still believe every promise of God is yes and amen. We still believe this journey was ordained by God for our good and His glory. And we still believe she is healed!
Emilie Grace 
We’re walking with you Seth! Thank you for sharing your prayer life and walk with us! PRAYERS GOING UP!
Amen Pastor Seth. Keep pushing for her release. Her home environment will be the best “medicine” for her. You and Sister Holly will be able to determine better what works for her and was doesn’t and it will be much less stressful. You could have a nurse to come in to your home if necessary, but being at home is a big step towards sustainable success for her. God bless you all!
this is interesting; insurance companies generally fight to get patients OUT of the hospital, not keep them in. the standards of what needs to be met is SO minimal, imo. HOWEVER, spiritual discernment ALONE trumps what the docs r saying, imo, add parental insight? oh yes. i can hear the frustration in your litany of reasons why your daughter should be home with u. so my prayer is to know what to pray, not at all out of unbelief, but so that i’m praying in agreement with what’s best for emilie and her loving, exhausted, faithful parents. love to u guys as we join u in prayer! 🙂
Seth & Holly, let me encourage you a little more than you already are. My friend Jamie went through the exact same thing with her baby girl about 3 years ago. The church prayed & anointed Jamie in proxy of her daughter and that little girl is healthy, running around, playing, etc as of this date. I told Pastor Noah W about this situation so he could encourage you when your daughter was first born. We’ll continue to pray for Emelie & you two, but we’re touching, agreeing and believing with you that she will go home, she will fully recover and be healthy & she will do something absolutely TREMENDOUS for God! In Jesus’ name!
We are still praying with you and praising God for what He has done! Your daughter is beautiful and she is blessed to have you and Holly as her parents. We love you all.
Praise God! Praise God! He is so good! Wonderful report. Hang on. Don’t rush. It’s almost over. God bless you
God Bless you 3! I know this is very hard, however, God continues to work for Dear Emily Grace. Remember my grandson came in at 1lb 2oz, he finally came home with a micky button and required frequent feedings. He also required 02 and an apnea monitor.
He is now 7, will be 8 in Nov. made 4 A’s and 1 B on his report card.
I am telling you this because I don’t want you to be discouraged, God directs the healing of our dear children. If Dear Emily Grace requires a micky button it does not mean God has not healed her. God is allowing Emily to show his healing day by day, as He blesses her He is also allowing others to see and witness his healing and be blessed while they witness.
I was so thrilled to see this new post, Praise God, I cannot wait for Dear Emily Grace, (love that name), to go home with you dear parents.
God remains with you.
Praying and Praising for you all.
God will continue to carry you and your family through! It aint over until God says…. We are going to continue to pray. Much love, prayer and blessings! Keep fighting Emily Grace
Keep pressing, my brother! Miraculous things can happen when she is under the care of those who are charged with her care!
We are praying for her speedy recovery daily. Stay in faith!
Continuing to persevere with you in prayer.
Thank you for the updates. Be of good courage.
God is answering your prayers in His own time. Congratulations on getting your precious bundle home at last! Our continuing prayers are for you two, for strength & wisdom beyond your years, for Emilie to grow in good health and for some needed rest (between feedings) for you both. Holly, as a NICU nurse, you couldn”t be better prepared to take care of Emilie. And Seth, thank you so much for all the updates! May God continue to bless & keep you both in His care. We love you guys! Aunt Claudia.
I am praying for you three! Just a little suggestion: with my preemie (27 wks) I found feeding her a little more frequently at 3 hrs can help with the weight gain, and we alternated breastfeeding with breast milk fortified with a high calorie formula for preemies. Have they discussed that with you? You are 100% right to focus on feeding her naturally, I had to spend a week and a half sleeping at the hospital and breastfeeding to make sure they didn’t keep feeding my daughter through the tube. She needs mommy and daddy, who are committed to seeing her grow and take the next steps.
To God be the glory!!! May our Mighty Healer bring healing upon little Miss Emilie Grace and may He restore you and your wife and loved ones emotionally, physically, and spiritually. I believe you two have come through this trial and your faith has been fortified, your testimony has tremendously increased, and your compassion has greatly broadened. May God continously bless you and you family.
Lydia showed me your Facebook post about Emilie Grace coming home. She has the praise the Lord pose with her hand raised. We are thrilled for you and Holly.
So happy for Emilie’s homecoming! Enjoy your sleepless nights. she will start eating you out of house and home before you know it. Praise God!
Congratulations on bringing Emilie home! I’m so happy for you & Holly. I watch online weekly and you never show any sign of being tedious from the circumstances. Your demeanor has been a blessing. I finally made it to visit Mt. Rubidoux live in person today and found out the great news and saw the photo you sent by text of Emilie watching. It was truly a blessing being a part of the fellowship today. Continued blessings to your family!
Camille
I was overtaken with gladness and joy by the wonderful news when I came to church this past Sabbath that your miracle child was home. The Holy Spirit had revealed this to me before I got to church.. It’s the care of touching, praying, professing, providing and protecting what’s yours as a parent that heals. Now you will witness how fast your miracle child will grow right before your eyes so you can see her development at home as the Holy Spirit lead and guide you both. He has trusted you with His miracle child for His glory. Praise the Living God for great things He has done. You stayed faithful, determine and focus. The Living God is pleased. Love you much.
So glad to your faith in God continues to be steadfast. Emilie looks beautiful!
Praise God that Emilie Grace is home with her loving parents! I learned a meaning for GPS. It stands for Grace Positioning System. Know that God is still in control as he guides you all through the journey.
She looks so peaceful! I’ve enjoyed following such a pure journey of faith. It’s beautiful, inspiring, and enriching. Love you guys and always thinking about you.
-Holly
(Seth’s cousin in Atlanta, GA)