Thankful to be holding our little warrior Hogan!
HOGAN (DAY 5)
Hogan's Grandmother couldn't hold back the tears of joy holding Hogan!
Hogan's Nana and Papa were so excited to get to hold Hogan tonight!
Dear Hogan,
I am so happy that you had a great day. You woke me up at 3AM last night and scared me. Nurse Laura noticed that your IV was leaking and you had lost fluid in your isolette. Nurse Laura and her friend helped get your isolette clean with new sheets and got your IV back in and restarted. I know it wasn't a fun thing for you to go through but they got you back going again! You are amazing Hogan. I hope that we have a good night tonight. I always look so forward to our traditional "guys night out" in the NICU! I pray that your night is peaceful and that you awake to another day that was better than today. I look forward to holding you at 9AM!
I am glad that you had some more firsts today. Your nana and grandmother both got to hold you for a minute today. It might not have been long but I think that their love for you got even deeper and I didn't think that was possible. I know you could see the tears of joy in their eyes as they held you. I haven't seen them that excited in a long time. There is just something about you little guy. Your strength and determination to live and beat the odds is so inspiring to me!
I also wanted to let you know about our meeting today. I know you couldn't help but hear us talk about it in your room yesterday. It brought back memories from our meeting a couple of months ago here in the NICU to discuss the plans of your arrival. This meeting was to talk about plans of maybe taking you home next week! Yes, Dr. Morales is still saying that your life will be measured in days and not weeks and that your time in this world will not be long but at least this was a meeting that gave us hope that you might could go home to be with your brother and sister! Wow, how neat would that be!? I know we have a long way to go for all of this to happen but I know how you like to set goals and live each day like it could be your last! You have a gift of focusing on the small battles every day. I have learned a lot from you Hogan.
If we get to the point when you could leave the hospital you would still have to be in an isolette in our house and have all of your equipment and accessories that are similar to what you have here in your room at St. Mary's. Hospice has let us know that they can help us with all of this. What a blessing. It won't be easy transporting you to our home from the hospital but nothing has been easy for you has it!? You can do it Hogan. I know you can! I pray that God will continue to use your little body to make a difference in this world. You have touched a lot of people. I can't wait to read some of the messages to you tonight about what people are saying about you! They love you Hogan. I am so glad that you are here. I am so proud of you.
I love you!
I love reading your letters to Hogan. I know you are so proud of him. We lost a baby in utero to Trisomy 18 almost two years ago. Hugs to you and to Hogan.
ReplyDeleteCongratulations on Hogan's birth. I know what a precious miracle each hour of Hogan's life is to you, only because I have a precious great-nephew who lived 5 miraculous days with Trisomy 18 and is now in the arms of Jesus.
ReplyDeletePlease know that I will be praying for you and your family in the days and weeks ahead. It's an excruciating and blessed journey.
Grace and peace to you through our Lord Jesus.
It's a very twisted path that led me to your letters to Hogan, but I want to say that I've enjoyed reading them. I am a nursing student in Denmark (originally from Buffalo, NY) and I work on the NICU at the local hospital. Many of my patients have parents that are afraid to bond with them, or even hold them. It's so amazing to see a baby as loved as Hogan.
ReplyDeleteYour whole family will be in my prayers, as well as the NICU nurses working with Hogan.
All the best.
Waking up and getting my morning dose of Hogan pictures and news. I hope that you all slept well. love to you all, Megan S.
ReplyDeleteAnother day of God's grace & love. We have posted your link on our Facebook page & many friends are reading & praying for Hogan. ( Hope that's okay.) Your letters to Hogan are inspirational & touching. Hogan has to know that God loves him from the love you are showing him. It must be a tough battle not only for him, but for you too, but you know that He will give you the strength & courage to continue the fight. That is my prayer for you this morning. Thanks for sharing your journey in this special way with all of us. God bless...Ron & Sarah H
ReplyDeleteKip and Angie, I just want you to know that Hogan has blessed many people in a short time,more than some do in a liefetime and wow, what a gift!! Kip, I know you may not remember me but Robin and I were friends waaaaay back and went to school together :) Thank you and Angie for allowing many people to share your blessings and walk hand in hand with you with this awe inspiring journey. The wonders of internet have allowed Hogan to become a part of so many peoples lives and show how amazing God is. Thank you for the priviledge of allowing all of us into your family. There are many prayer warriors for Hogan and his cheering section , which is mighty big! Take care and know that your family is in our heart, prayers and hugs all the time. By the way, your wife has an AMAZING name...:) Hugs-Angela
ReplyDeleteHello Dominy Family,
ReplyDeleteI found the link to your blog via Angie Smith's twitter account. I'm not sure how connected you are to other families who have children with Trisomy 18, but I wanted to pass on a link to another family. This family was also told that their little guy would only live a few days, now Zane is 3 years old. You can see their story at ( http://mylifewithzane.blogspot.com ) I pray that all goes well for you. Hogan is obviously a fighter.
Ruth White
Kip, Angie, Noah, Lily and Hogan,
ReplyDeleteAs I talked to Lesia last night and she said that the doctor said days.....I am again filled with the HOLY SPIRIT. I do not believe that God is finished with Hogan. He has touched so many lifes including mine. EVERYDAY, the first thing that Katie and Heather say to me before they even say good morning is, "How is Hogan?" He has changed our life forever.
I have felt good about it the whole time. I can not wait to meet this incredible little boy.
I am praying, believing and expecting more and more miracles from Hogan. Keep fighting!!!!!
I love you all,
Linda
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ReplyDeleteKip and Angie, I've been reading daily. Hogan is truly a blessing, and you all are an inspiration to so many. Your faith and strength abound. Take care of each other and your sweet family!
ReplyDeleteAbbie Holbrook (Username is Joseph b/c that's my hubby's name, but I can't figure out if I have a google account!).
What an inspiration! Thank you for sharing your story of this amazing little boy! Praise God for his life! I am praying for another wonderful day!
ReplyDeleteMorgan Barry
I came over from Angie Smith's Twitter about your family. What a blessing to read your story. I truly believe Hogan has been sent to your family for God to be glorified. He has sent Hogan to very special parents. You are a warm, loving family and Hogan is surely feeling the love of his family and friends.
ReplyDeleteYou are in my prayers for the days ahead. May God give you His peace.
Beautiful little fighter! (I know a little boy who also has Trisomy 18, he's 9 yrs old and doing great!)
ReplyDeleteHere is a link to his mom's Facebook.
ReplyDeletehttp://www.facebook.com/profile.php?id=730610591&ref=ts
Your little boy is a gift and your love for him will touch many people , more than you will know. May God bless Hogan and his
ReplyDeletelife will continue to glorify our Creator.
AMAZING...SO AMAZING!
ReplyDelete