Sunday, July 15, 2012

Day 19: A Good Week Behind Us! ***Hailey's Hope***

Another good day, could it really be true? Seven good days in a row, and Lily is still doing well on the SiPAP! They stepped her up to 5ml/hr of breastmilk today, which is almost a full feed (6ml/hr), and she's tolerating it nicely! Seeing Lily doing so well really keeps Sara and me going. We're more hopeful than even before that Lily will make it though this ordeal. Barring any unforeseen turns for the worse, things are really beginning to look up!

This whole experience really has made me believe more strongly in the power of prayer, hope, faith - in short, the power of good energy! Thousands of people, all of the world, continue to pray for Lily and hold her in their thoughts- at home, at church, in prayer groups, and around the dinner table- family, friends, colleagues and even strangers have been rooting for and praying for our Lily... and she is doing really well!! Against all odds, she's winning the fight for her life one day at a time, thanks to all of you - in America, Canada, the UK, Russia, Germany, Brazil, Singapore, India, Italy, Jordan, the list goes on... Thank you all for your prayers and well-wishes - THEY ARE WORKING MIRACLES!!

With that, Sara and I are very proud to share with you Lily's first unobstructed picture :) They switch her air mask occasionally, and Sara and I were able to snap a few pictures! Here is our beautiful baby girl, our fighter, our little warrior - and my personal heroine - strongest kid I know!

You can see the PIC line in her left arm - hopefully, it comes out this week since Lily is almost up to full feeds. Her stomach looks a little large, that's in part due to the positive air pressure in her SiPAP.  The other wires on her chest are just monitors, and you can see the line of breastmilk going into her mouth, into her stomach.

She usually looks this peaceful now that she's on the SiPAP - mostly snoozing away, which is good. She isn't flailing around as much as she was on the tracheal ventilator - she much be more comfortable without the big tube down her throat.

So many of you have asked how you can help. The fact is, you have already helped - by your prayers, emails, calls of support, and stories of hope. The support we have received from all of you has been amazing, and my wife and I thank you for it from the bottom of our hearts. We would not be able to do this without our support network. Frankly, one of the things that kept me from losing my wits during those first few dark days was seeing the hits on this blog adding up by the thousands. Does it sound silly? Maybe. But knowing that a thousand people were reading Lily's story every day, saying a thousand prayers and sending a thousand well wishes... in a way, it made the emptiest days feel a little less empty. Knowing that so many people were (and are) rooting for Lily helps tremendously.

We are very fortunate to have excellent insurance that will cover all of Lily's medical expenses, without cap. Considering the NICU bill will be north of $1 million, that is a real blessing to say the least!! For the expenses that are not covered by insurance, but add up quickly (basically gas & 2x daily parking at the hospital), a really fantastic foundation called Hailey's Hope ( is sending us a few gas cards and parking permits.

Hailey's Hope Foundation (HHF) is a NY-based 501(c)(3) organization that benefits families with premature and seriously ill babies in the Neonatal Intensive Care Unit (NICU) at the Maria Fareri Children's Hospital at Westchester Medical Center, where Lily is receiving care. The foundation's benefits aren't need-based... Hailey's Hope supports any and all NICU families with the 'little things' that tend to add up.

The Maria Fareri NICU annually cares for about 60% of all premature and seriously ill babies born in the region, treating about 1000 babies each year. That figure is comprised of about 700 infants born above 3 pounds with complications, 225 infants weighing below 3 pounds, and 100 infants weighing below 2 pounds. While Hailey's Hope currently focuses on supporting families at the Maria Fareri NICU, they have the goal of expanding their reach to provide assistance to NICU families in other hospitals. I will be the first to say that the care that Lily has received has been top-notch, truly amazing and the epitome of healthcare as far as I have experienced it. We spoke with a doctor a few weeks ago who has taught for the past 30 years at the UCLA, Harvard, and Yale NICUs; he told us that in his experience, he has found Westchester Med Center to have the best Level IV NICU in the country.

In support of Lily's Battle and other NICU families, and with the aim of raising awareness for your local NICU and the miracle workers within its walls, I am trying to help raise funds for Hailey's Hope. I don't have any specific goal in mind - anything will help NICU families. All donations to Hailey's Hope are fully tax-deductible (their tax ID number is 26-1387176). This link describes how donations were spent during 2011.

If you would like to donate in Lily's name:
i) By check: Please mail the completed form and check directly to the Foundation, their address is: Hailey's Hope Foundation, P.O. Box 32, Goshen, NY 10924
ii) By credit card: Please email the completed form directly to
iii) By PayPal*, please refer to the link on this website (

* Note: Paypal takes a small (2%, I think?) processing fee out of all donations. If you choose the Paypal link, you will be able to designate the donation in Lily's name after clicking 'submit'.

Any amount, even $5 dollars, helps a NICU family. I hope you'll consider supporting Hailey's Hope, it is truly a fantastic organization, by making a donation celebrating the birth of Lilliana Hope Schlubach. Please don't forget to note her full name, so I know to thank you personally!

Whether or not you donate - know that Sara and I are deeply appreciative of your prayers, your thoughts, and your well-wishes. They have an immediate and noticeable impact on Lily's battle - they are working - they give her strength to keep fighting her battle, and they give us strength too!


  1. Praise, God! Your continued great news brings me to tears. Please know that Lily and your family continue to be in both my thoughts and prayers. Prayer is indescribably powerful! May God continue to strengthen, mature, and heal your sweet miracle. Rejoicing with you!

  2. Jumping for joy. This is so wonderful to see/hear. Keep fighting Lily - we're all cheering and praying for you beautiful baby girl!!

  3. I am overcome with tears, each and every time I read your blog. I am so grateful they most often happen to be tears of joy! Lily is definitely a strong little fighter! The courage you and your wife have shown throughout this terrifying time is remarkable and courageous. I will continue to keep Lily and your family in my prayers.