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January 14th 2010

14 Jan

It’s 10:45, I just got home, and I’m not even tired.  It has been an emotional day of ups and downs, but we have survived another day!  As you know, I received a call this afternoon from Tiffany letting me know that Makoa had a urinary tract infection.  For some reason, the news seems to always come down when I’m not there and Tiffany is left to take the brunt of the emotion herself.  We received a great piece of advice from a friend who had a child in the NICU.  She told us, “You need to detach emotionally from what the doctors tell you, the bottom line is that every child is different and will react differently, so you just don’t know.”   We are still working on that…

There was some good news, Makoa is back off the oxygen and doing well on his own.  I showed up after work to the hospital and our little man was just relaxing in his new outfit Grammy bought.

He’s also gained another .5 oz which is great.  They are also adding some extra calories to his feedings to help speed the process of his weight gain.  It’s like their cooking up a mini protein shake for the little guy, and I love it!  The hard thing for me tonight was seeing him with the IV in his hand, and I know it was just as difficult for Tiffany.

There are four things that have made me the man I am today: God, my Parents,my Wife, and my Children.  There is nothing that breaks my heart more than to see my Wife in pain, whether it be emotionally or physically.  I wish I could take that pain and those feelings of hurt she has from her, but sadly I can’t, so all I can do is hold her while she cries.  I know it’s because she is a mother and there is something about that job and the connection that you have with you child that words cannot describe.  People always describe Tiffany as “the strong one” and she is, but she’s also been through a lot in her life and there comes a time when you need to just cry.  This journey has been difficult for everyone, but we must put our faith in God to carry us through.

I’ve been very blessed that God has poured his love onto me, giving me the strength to support Tiffany and our family through this.  It’s also with the prayers, love, and support of family and friends that keep us going.  I spoke with one of my dear friends Jason tonight.  Jay and I roomed together in college, we’re in each others weddings, even played in a band together.  But most importantly, Jason is the one who introduced me to God.  I remember sitting in his Ford pickup truck in a Burger King parking lot in Westlake Village eating some dinner and sharing his testimony with me.  It’s always great talking with Jason, but spiritually it always lifts me up because he truly understands God’s grace and how amazing he His.

I also ran into our “angel” Gina in the NICU.  Joey is on schedule to go home tomorrow and she brought over some clothes that he had grown out of.  We began chatting and I thanked her for praying with Tiffany that day.  She told me that God had put in her heart that she needed to pray with that family.  It’s amazing to see a light that is so bright in someone and that she’s willing to share that light with others.  Gina said that if Tiffany ever wanted to talk, she would be there.  I’m hopeful that Tiffany can find comfort in other mothers who have had children in the NICU.

I spent a couple hours with Makoa tonight.  We sang some songs, prayed a little, told him to stop scaring Mommy.  I love holding him and could do it for hours without blinking an eye.  When it was time to go, I wrapped him up tight and put him back in his crib and he was snug-as-a-bug-in-a-rug.  His picture of Nainoa & Kaialani is propped up and his crib so they can always be with him.  And of course, God is holding our little man when we aren’t there, making him stronger so he can come home.

January 13th 2010

13 Jan

I’d be lying if I said I wasn’t tired.  Tiffany and I have finally come to the conclusion that we need to take care of ourselves too.  Driving back and forth, working, dealing with our emotions, these are all physically taxing.  Emotionally, I feel very strong, physically I’m starting to fade.  Hopefully a good night of sleep will do the trick!

Despite having to be put back on oxygen this morning, Makoa is doing well.  We are staying in Manhattan Beach tonight which is much more convenient, not only for work, but the proximity to the hospital as well.  It allows me to spend more time at the Torrance Memorial with Makoa.  He was such a sweet little boy tonight, opening his eyes for us, and making a valiant effort to breast feed.  He made it over 10 minutes on one side.  That is a huge accomplishment and step in the right direction for Makoa and his journey to complete health.

We are so blessed to have Makoa and just as blessed to have run into so many “Angels” along our journey thus far.  In my post earlier this week, I quoted a poem by Elizabeth Browing in which the first line said: “Earth’s crammed with Heaven”.  Amen!  Is it ever!  I’d like to talk about a specific experience that really shows the grace of God given through a stranger.

It was the 2nd day of being in the NICU and Tiffany was outside with her parents and sister, very upset about the situation with Makoa.  A woman named Gina approached them and explained that she had twins in the NICU and that she knew what Tiffany was going through.  She asked everyone to hold hands and pray.  I wasn’t there, but I could see it had a profound impact on everyone from the tears on their faces.

The reason I bring it up, is not only to show the amazing grace that God spreads on this Earth, but also to thank Gina for comforting a stranger in need.  That is why tonight I ask you to pray for Gina’s son Joey.  His sister has already returned home, but Joey is still in NICU, slated to go home on Friday.

While we continue to pray for Makoa and his health and strength, I don’t want to forget about the other children who share the same NICU has him.  I pray for their health as well.

Happy Birthday Lala!

13 Jan

I’d like to thank my Mom for everything that she has done for us in the past couple of weeks.  She has put her life on hold to stay with us and help in anyway she can whether it be taking the kids to school or fixing dinner.  She has been amazing and I know we couldn’t have done it without her help.

So to our Lala, happy birthday and we love you!

January 12th 2010

12 Jan

I found a little slice of Heaven tonight.

There is something so pure and magical about holding this little man in your arms.  I can’t quite put my finger on it, but there is such a sense of peace and calm when you hold Makoa, it’s truly amazing.  I hope that each and everyone of you have the opportunity to share in this experience.

After spending the entire day at the hospital, Tiffany went home around five to go have dinner with the kids.  I weaved my way over to Torrance after work and was able to spend a few hours with Makoa simply laying on my chest.  It was a wonderful bonding moment for the two of us and I was so glad to spend some time with him, playing songs, and talking to him.  His spirit is so strong, it overwhelms me.

As for Makoa, he seems to be improving everyday.  We still have a few genetic tests that we are waiting on results for, so we continue to pray that those come back normal.  Ultimately, we are very hopeful that what ails him can be cured with a little food and a little love.  We can see him getting a little stronger each time we hold him now, he even lifted his head off Tiffany this afternoon when we was resting on her.  There are all of these little things that he’s starting to do that really makes us believe that he is going to be just fine.

He’s very photogenic as you can tell by this picture.  Although his eyes are closed here, he has been opening them for short spurts of 20 minutes at a time.  There is nothing better than looking into that little man’s in the eyes, it always puts a big smile on your face.

That brings me to this blog and what it is doing for Makoa.  Not only has it been extremely cathartic for both Tiffany and myself, but it’s been amazing to see the overwhelming response we’ve received from our friends and family.  As I’ve said before, I am a believer in the positive power of prayer.  I read Makoa his prayers every night before I leave his side.  He always lets out a little quiver or sigh.

It’s wonderful getting to share Makoa’s story with all of you, joining together in prayer, and most importantly bringing glory to God.  His grace continues to amaze me, and I’m so thankful to be able to share our journey with you.

January 11th 2010

11 Jan

The big move…

No, not that move to Children’s Hospital, but a move to the fifth floor NICU where all of the babies who aren’t critical go.  While Makoa was never critical, it’s fantastic to be surrounded by babies who have graduated from the 3rd floor and are ready to go home.

Tiffany arrived early and spent the day with Makoa.  It was another day of good news and improvement of strength for the little man.  They performed an early morning eye exam which he passed with flying colors.  Tiffany also got encouragement from a very unlikely source.  If you remember our friend with the not-so-awesome bedside manners?  We’ll, I’d like to think that God has done a work in him as well.  He has taken the time to explain things to Tiffany and talk with her, giving her hope and promise for Makoa’s health.  He has been impressed with his strength and improvement and has now shifted to “eliminating things” as opposed to “finding things” in his blood tests.  There is still a long way to go, but we seem to have the “tough-guy” on board.  He was even advocating for our move to Children’s Hospital for the convenience of our family.

We did find out this afternoon that the transfer won’t be happening.  Since he is completely stable, there is no reason for the move besides convenience, and let’s face it… that’s not something insurance companies care about.  Tiffany and I are both at peace with the decision.  We pushed it really hard in the beginning because we had such good connections and it was much closer to our house.  We backed off a bit and really asked God to lead us to the correct spot for Makoa.  Tiffany also had an interesting conversation with that same doctor (who we found out is actually the lead of all the neonatologist) and he told us that he used to work at Children’s but decided to come to Torrance for the one-on-one attention he can give with the patients.

He wasn’t the first one to mention it, but a few people said that because Makoa is very stable, that he would most likely be looked at by a team of interns and fellows.  It definitely makes sense because Children’s is really for the kids who have serious life-threatening illnesses or need things like heart transplants.  Torrance Memorial has done a fantastic job of doing exactly what he needs which is feeding.  Makoa and Tiffany are working with the feeding specialists everyday, trying to develop the technique that is most successful for him.

We definitely haven’t given up on Children’s Hospital.  We will continue to pray that if it’s meant to be then we will eventually  make it over there.  I’d like to thank Jenny Hull for all of her hard work in trying to get us into Children’s.  She had pretty much set the entire thing up for us.  I know the wonders that Children’s Hospital had done for her daughter Josie, and we are beyond grateful for her reaching out and helping us out.

So where does this leave us?  Well, it looks like we’ll be driving for a bit.  We’re staying tonight at Grammy & Papa’s in Manhattan Beach which is very convenient for both work and seeing Makoa.  We are going to take it day by day and see where God takes us.  We received our first estimate today of when Makoa might be coming home, 4-6 weeks.  That’s a time frame that we can live with.  Let’s pray that he lives by his name “fearless” and comes home sooner.

Thanks Hal!

11 Jan

My great friend (and AMAZING photographer) Hal Myers stopped by to check up on me today at work.  It’s great friends like this that make getting through the day that much easier.  Hal recently had a gallery showing in Orange County featuring his 22˙ below series.  He brought one of the amazing pieces for Tiffany and me to have in our house.  He shared the story of the wonderful spirit this boy had and how it would be a perfect representation of the hope and faith we have for Makoa.  Please visit Hal’s site to see his photographic work, it is truly amazing.

Removing My Shoes

11 Jan

Earth’s crammed with heaven,
And every common bush afire with God:
But only he who sees, takes off his shoes,
The rest sit round it, and pluck blackberries.

- Elizabeth Barrett Browning

I’m done plucking blackberries.  There is God all around us and we need to open our eyes.  Thank you to all of the people who are keeping Makoa and the Breeden ohana in your prayers.

A quick update…

I spoke with Tiffany and they have moved Makoa up to the 5th floor where all of the stable babies go.  This is of course great news!  The doctor with terrible bedside manners was actually very kind to Tiffany today, saying that he would help with getting us transferred.  He also said our little guy was looking MUCH stronger and it in fact may just be nutrition.  All of your prayers are working!!

It looks like the transfer may or may not happen, it all comes down to the insurance.  We are praying that if we are supposed to be at Children’s it happens, and if not, for God’s path to be shown to us.  We want the best care and if that is at Torrance than so be it.

We will be staying at Tiffany’s parents tonight so I will be able to see Makoa as well as Kaia and Nainoa.  I have dubbed the Glendale-Santa Monica-Torrance spread the “Triangle of Traffic” due to the distance between each.  I’m sure it will be a juggling act for the next few weeks, but our family and friends are a great help.  Thank you to all of those who have offered to help.  We really appreciate it!

My Three Mom’s

10 Jan

All of our family members have been fantastic this past week.  My Mom has put her life on hold and will be staying with us to help us with whatever we need.  I know it has been difficult on her, as it has everyone.  My Mom’s great friends Siri and Diane flew down from San Francisco this past weekend to just be there for my Mom, help her in whatever way she needed.  I know it was a great boost for her and I know it meant the world to her.  Thanks Siri & Diane!

January 9th 2010

9 Jan

Makoa has had another great day today.  Working with the feeding specialist, we were able to identify an optimal feeding position and nipple size for our little man.

As you know, we were granted an extra day here because we were supposed to meet with the geneticist last night.  He never showed.  Apparently there was some confusion and he was supposed to be here at 7am today.  Of course we didn’t find out until around 10am, but we were still able to meet with him.

After examining him, he sat down with us and gave us his diagnosis: “I’m not sure”.  Let me tell you, I’ll take “not sure” right now.  He did say that he didn’t feel that it was Prader-Willi syndrome at all but thought we should rule it out since they drew the blood.  I found out that the first doctor who suggested it wasn’t even pronouncing it right which makes me question the diagnosis to begin with.

We discussed with the geneticist our idea to transfer to Children’s Hospital since no one can seem to figure out the problem.  He agreed it would be a good move and suggested it to the neonatologist on duty.  Of course, their reaction was “we can provide the same level of care and we need to have a reason”.  We’ll, I can give you a thousand of them.

My biggest struggle right now is the pride that the neonatologist are having.  They don’t want to look bad.  They don’t want people to know they don’t have the answers.  They want to keep running tests, taking more blood to see if something matches up in there book.  I understand where they are coming from, but this is not a time to be prideful, it is not about you.  It’s about our dear Makoa and what is best for him.

We did have help from an Angel today, Stacey, who is a lead nurse in the NICU.  She came up to me and said “I understand you want to transfer to Children’s, I would do the same thing in your shoes, let’s make it happen”.  Praise God!  Someone on our side willing to help.

The real issue right now is the insurance.  They need a reason to justify the transfer, something that Children’s can do that Torrance can’t.  The problem is getting Torrance to admit that and say “we don’t have the resources or answers to provide Makoa with the best care”.  We continue to pray that the insurance will cover this.

If it is going to happen, it looks like it will be Monday when insurance offices open up.  There is a particular neonatologist who is on duty tomorrow and she is sympathetic to our situation.  We are hoping that we can wrap this up and get him over to Children’s Hospital on Monday.

It is now 4:15pm and we are getting ready to leave.  You never imagine having to leave the hospital without your child, I don’t have words for the emptiness I feel.  I’m comforted by God and know he will be holding Makoa and us while we are apart.  I continue to ask you for your prayer in comforting Tiffany and the rest of our family as we make this transition home without Makoa.  I’m sure it will be good to have some normalcy, sleep in our bed, see our other beautiful children who we have greatly missed.  Only time will tell, but we both thank you from the bottom of our hearts for all of your support.

All of God’s Love

9 Jan

I’m the first one to admit that I’m not much of a crier.  In fact, I’m pretty sure I’ve cried more this week than I have in my entire life.  The interesting part for me is why, and you might be surprised at the answer.

These are tears of joy, not of sorrow.  The tears come from the happiness that I find reading all of the prayers that our friends and family are sending Makoa’s way.  It’s tears of joy that we are touched by the Grace of God and the work that he continues to do in my life.  I am so grateful that He is there for us and has given me the strength to be there and support my family.