Going Home…

Going Home…

Going home from the hospital is supposed to be a wonderful and joyous experience, but it has a different feeling when you leave without your baby.  Please pray for Tiffany today to give her strength and to comfort here on the most difficult day.

They are bringing in a neurologist today to take a look at Makoa.  There is a doctor in the NICU that we have become less than fond of.  Twice now he has approached Tiffany when I’ve been outside the NICU to discuss with her what he feels is going on with Makoa.  He has a different opinion than the other neonatologist that saw Makoa originally.  After all of the tests came back fine, our original doctor said all he needed to do was eat and get stronger.  This other doctor thinks otherwise.

To make a long story short, he approached Tiffany yesterday and told her a diagnosis of what he thought it was.  He thought he might have Pradar Willi Syndrome which is a very rare disease.  This is a direct quote of what he told Tiffany:  “You’re probably going to look it up online, but there are many different degrees”.  For a doctor to give you a condition that your child may have and not give you a description of what that disease means is completely unprofessional in my opinion.  As for myself, I’ve looked at it and I feel there is a huge disconnect between the symptoms in Pradar Willi Syndrome and what Makoa is displaying.  I myself could probably list 15 other ailments that he could have based on his poor feeding and low muscle tone.  The doctor himself said that there is a skinny book that we know a lot about and then there is a really thick book that he basically flip through to find something that matches up.  That’s why he’s bringing in specialists from UCLA.  The issue I’m having is that we have to wait around while these doctors fit us in to their schedule.  I’d like to be at the place where they know that large book like the back-of-their-hand.

I would like to say how much we appreciate the nursing staff in the NICU at Torrance Memorial.  They have done a fantastic job of loving and caring for Makoa.  With that said, we want our son to be in a place where he can be seen by the best doctors and give him the opportunity for a strong diagnosis so we can attack whatever it is that might be the problem.

We could have an opportunity to have Makoa transferred to Children’s Hospital of LA.  We currently working on making that happen so if all of you could pray that Makoa is delivered to the people who can take best care of him, we would appreciate it.

As for me, I’m more hopeful than I have ever been for Makoa.  His eyes opened again this morning and this time Tiffany was there to see it.  He was tracking and appeared to be following movement.  He ate 5cc’s of breast milk and appears to understand what needs to be done while feeding but is still to weak to do it for extended periods.  The nurses have been amazed at his progress, and when I look into those little eyes, I can see that he is there and looking up at me saying: “Daddy, I’m going to be fine!”.

I know much of it comes from the prayers and love that are friends and family are sending his way.  Please continue to pray for him and our family.  We appreciate it more than words can say.

  • Aimee
    Posted at 11:07h, 08 January

    We are glad to hear that Makoa is making progress with his eating and he is opening his eyes. What a trooper!! We are sorry that you had to deal with such a dud doctor…what horrible bedside manners! We are positive that Makoa will get to the Children’s hospital where they will be best equipped to help him. May your first day home be filled with great news.

  • Bauchiero Family
    Posted at 12:46h, 08 January

    We’ll keep praying! I can tell some of our prayers are already answered given the strength of your tone, Lindsey! Linda and Gary can tell you how strongly Jim and I feel about Children’s hospital. That’s where Ryan was when we first met them. I was so worried that he was going to be a sickly child and look at him now!

    Wishing you God’s peace,

  • Hal Myers
    Posted at 14:38h, 08 January

    Brought tears to my eyes at the end. The power of the universe is big when brought to bear through collective prayer. Hang in there.

  • The Lee's
    Posted at 18:05h, 08 January

    Hang in there you guys! We can’t imagine the heartbreak of going home without him, but stay strong and know how much people are praying–God’s answer to these prayers is the solution and is coming soon! They will do everything they can and God will do everything they can’t 🙂 Let us know what we can do to help, we’ll still be praying and waiting to hear great news of good changes soon. Love you all!
    Kare & Jace and the boys

  • Katherine Hoffman Williams
    Posted at 18:08h, 08 January

    Lindsey, I wish I could jump thru this computer and give you a hug! I really believe prayers help. Ever since my mom told me I have been thinking and praying for him. He is so cute!!! As a parent I know how hard it is to feel helpless! I’m here if you need anything, my mom said the same. We love you!!

  • Dan Bauchiero
    Posted at 20:37h, 08 January

    Wow, this brings back some crazy memories. Please know that you guys have more people than you can ever imagine praying for Makoa and your family. This is hands down, the hardest thing you will ever go through…Been there, Trust me. Lean on your Faith, each other, and your families. Don’t be afraid to demand anything short of pure excellence from your Dr.’s. Nobody knows there children better than a parent, that is God’s Gift. I am in total tears right now, I hate this for you! I am going upstairs to kneel at Corinna’s crib right now and pray for you. All Love, Dan, Jess, Drew, and our proof of God’s Miracle’s…Corinna!!!!
    He’s a tough little guy, and he’s Fearless! Have Faith with Him!!!

  • Dail W. Davis
    Posted at 11:14h, 09 January

    We are glad to hear that Makoa is making progress. I reviewed Makao diagnosis and the statement that stuck with me is 1 out of 10,000 children are born with this. My daughter was born with Turner’s Syndrome and that is what I was also told 36 years ago which has some of the same symptoms. No one diagnosed her until she was 6. So, I do believe prayers along with excellent medical care Makao will be fine. We will remember him in our daily prayers. Continue to be strong.

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