Milestones and Hurdles

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Monday, November 17, 2014

World Prematurity Day: Looking Back on Our Miracles

Last night, I decided to do something I haven't done in almost 7 years... look back on our blogs from Keeping Up with The Hugheys.  I had no idea the emotions that would soon take over as I was transported back to Ford and Hayden's birth and the uncertain, emotional and frightening days that would follow. To say there were tears is an understatement. It was the ugly cry, but so necessary.

I don't know about other moms and dads who have children who were born extremely premature and weren't given the most uplifting of odds, but I had tucked those memories away. Don't get me wrong... I know how blessed we are by the miracle of Ford and Hayden, but the raw emotions turned dull for me and I celebrate the joy that they are today. I had forgotten there were many nights we didn't know if they would make it home. The ventilators, the infections, the heart surgeries... it was life-changing.

I prayed every waking moment. I sat by their isolettes, holding their tiny hands when I was allowed and asked for the Lord to give me not one, but two miracles. I did that for 144 days with a prayer bible I had with me at all times.  Trey and I went to the chapel, which happened to be right next to the NICU at Cook Children's back then daily.  We would write prayers down knowing we were asking God for something monumental. Heal two babies that weighed less than 2 pounds, couldn't breathe on their own... my Goodness, there lungs weren't even close to being done growing, protect them from anymore brain bleeds and don't let them get NEC, a condition where the intestines get infected and begin to die. We were asking a lot, but Ford and Hayden deserved all of us and all of our prayers.

THANKFUL: I hope everyone who prayed for us knows how thankful I was back then and how thankful I still am today. I don't say it enough though. I believe in the power of prayer and you flooded us with that. How can I ever repay the sweet family, friends and strangers for their love and faithfulness? I can only say that Trey and I do it every day with the LOVE we show Ford, Hayden and Hampton.  They are precious people.  They are funny, witty, resilient and they are learning more about God every day and learning about how prayer can work in their life and in the lives of those they love or may not even know.  I try never to take for granted what a miracle their life is. 25 weeks! They had 15 more weeks to develop... so much happens in that 15 weeks inside the womb and they had to develop in an isolette. I may never feel worthy of God's tremendous gift, but I assure I do my best every single moment to be the kind of mother Ford, Hayden and Hampton deserve. I am so NOT perfect and I make mommy mistakes more than I would like to, but I do it with the best intentions and every ounce of love I have.

For those of you who know my husband, you know he is incredible. He is strong and positive and had to endure so much that I couldn't emotionally handle during those 5 months in the NICU, not to mention the surgeries that followed on Ford's kidneys and the hospital stays after we came home. I was emotional and scared while he was my pillar of strength. I don't want to speak for him, but I am sure he was every bit as scared as I was and still worries about the well-being of our babies as much as I do today, but he stays faithful that all will work out and our family will be stronger for all that we have been through.  I don't tell you enough, Trey, what you mean to my life! You are OUR (Ford, Hayden, Hampton and MY) EVERYTHING!!!! When I am weak, you are strong! When I am sad, you exude happiness. When I am scared, you reassure me that it will be OK! Thank you for being the Daddy I always knew you would be while we waited to bring those sweet boys home... and Hampton who couldn't miss her moment in the NICU too! I hope Ford and Hayden turn out to be as incredible of a man as you are, who only want the best for their family and will weather the storm like a gentlemen if things ever get rough for them.

If you get a random Thank You from me one day soon... it is because I am continuing to read our blog with blurry eyes and a thankful heart... knowing your prayer changed the course of Ford and Hayden's life and made mine truly complete!  I hope you will say a prayer for World Prematurity Day! There is a mom and dad out there right now... worried that their tiny little love may not realize all the dreams their parents have for them and there are loving parents that I know we have felt that loss.  I cannot imagine what they went through and what they continue to go through today.  Keep them in your thoughts and prayers today and in the days to come.

Below is the first blog I ever wrote about Ford and Hayden... Trey actually started Keeping Up with The Hugheys because I wasn't ready to talk about how scared I was.  I needed a box of tissues to get through it.

Thank you will never be enough,
Dana- Ford, Hayden and Hampton's mommy


A Word From Ford and Hayden's Mommy

I know up until now... you've been getting wonderful blog updates from my husband... I have been waiting to post until I felt a little stronger... well that could be a long road ahead, so I decided it was time I needed to tell you all about my boys, Ford and Hayden.

They are my greatest accomplishment... I know they are still very, very sick, but looking at them reminds me just how blessed I am. Being their mother is the most important job I have or ever will have. I don't know about other mothers out there, but the hardest part about having two very premature babies... is there is nothing you really can do to make them better... not to mention the guilt you have that your body couldn't take the sweet babies to term. What a helpless feeling. Fortunately we have some of the best doctors and nurses around watching out for them and any new health hurdles they encounter... and trust me that is almost a daily occurrance. That is why Trey and I are always asking for your prayers for our sweet boys who certainly should not have to go through all of this. Just last night our Ford had a rough night... his blood pressure and blood gases were not in a good place at all... and he just wasn't looking like himself. He had to go on more blood pressure medicine and more oxygen support. The doctors told me today just how sick they are... they tell me that a lot, but I try to ignore it and just believe GOD is going to heal my babies in time because he knows how much we need them. That is one of the reasons I wanted to write about my babies tonight... because they need you... they need the power of prayer and so does their proud mommy and daddy.

Thank you for joining us in this NICU journey with Ford and Hayden... we look forward everday to your words of encouragement and prayers. We love the stories from those of you who've had 25 weekers who saw many rough times, but brought your precious babies home.

Everyday does seem like a new challenge for Hayden and Ford... today it is their kidneys and blood pressure... and of course as always their lungs which are just so fragile... doing work their bodies really are not prepared to do. I pray every day that the Lord will begin to heal their lungs so their other organs can also work more efficiently. The doctors say this is the time in the boys healing where they are the sickest... there was a honeymoon phase where their lungs were working okay... then their chronic lung disease really kicked in and their little bodies are just so stressed. I tell you that is hard to hear, but I have to believe they are going to make it... that God is going to give these boys the strength to overcome all of this... and soon we will be a family in Tyler again. I just pray the Lord will continue to work miracles in our lives because he knows how much Trey and I need Hayden and Ford and how much love he knows Trey and I will give them.

I wish the doctors could tell me the boys were going to be okay, but I guess that is where our FAITH comes in... no matter how sick they are... I know Hayden and Ford are going to be healthy little twins one day... riding bikes, playing in dirt and loving on their mommy and daddy who long to hold them and make it all better.

Right now some of our greatest joys are changing their diapers, taking their temperatures and holding their tiny little hands. We can't wait until they are off the ventilators and in our arms. I just stare at them for hours upon end... praying with them and talking to them about what our lives are going to be like once they come home. Trey and I probably spend 12 hours a day at the hospital each day... maybe more. Trust me, I don't leave their bedsides willingly.

In closing I just want to say I feel blessed... blessed because I am Hayden and Ford's mommy... they are beyond handsome and sweet. Blessed because there are so many East Texans who love us and pray for our baby boys every day... blessed because we have such wonderful friends and family all over the world... blessed because we have doctors who love and believe in Ford and Hayden... and SO Blessed because we have the Lord on our side who gave us these miracles in the first place.

We wish you all many blessings,
Dana, Trey, Ford and Hayden

Sunday, October 25, 2009

Hampton: Home Sweet Home

I am more than thrilled to announce Hampton has been home for a more than a week now and is doing really good healthwise. We are all settling into our new routine with sweet Hampton. It's been a while since we've had a little one at home so we are getting used to lots of sleepless nights, but after our second stay in the NICU as a family (this one, a lot shorter than the boys thank goodness)... we will take sleepless nights any day for a healthy little bundle of love!!!! Last Friday, Dr. Riley decided Hampton's lungs were doing much better so he had us room in on Friday night at the hospital... getting Hampton used to nursing with me all the time... and on Saturday, we were overjoyed to bring her back home to Tyler!!! If you don't see the family out and about for a while, it is because the doctors want us to again guard our little ones lungs because of the issues she had at birth and the boys too! This H1N1 flu is something we don't want to mess around with! It's a small sacrifice for a lifetime of fun to be had in the near future. It's also nice to have this time with the family to bond.

It was wonderful to see the boys meet their sister for the first time last Saturday. To my amazement, they were not jealous of her, but very intrigued by her arrival. I think they finally understood that was the baby in mommy's tummy the past 9 months. Thank heavens for my mother staying home this past week with me. It is going to be a lot of work when she goes back to work... but I am ready for this wonderful challenge.

These past couple of weeks with the unexpected health scare for Hampton has once again really been a test of our faith... to believe that the Lord was going to heal her the same way he did the boys, but I am so glad I have that blind faith... because Hampton is an amazing GIFT! She is a sweet little girl. She loves to eat, she's been struggling with baby gas, but she's a tough cookie as she proved to us the past 2 weeks!

I have spent a lot of time cuddling with her and watching her sleep. It just doesn't get much better than this. I have 2 little miracle twins who love to have fun, a sweet daughter to comfort and cuddle, and an amazing husband to help me and love us all along the way. He continues to be my strength when I can't muster it and my positive voice when I am worried about what other challenges we could face. This is the best life! I wouldn't change a thing because I appreciate all that I have EVEN MORE! And I appreciate all of you... our friends who pray for us anytime we ask. Now, that is another blessing the Hughey family never takes for granted. May everyone know the power of prayer as we have come to know it over the past 2 years!

Love to you and yours....
Dana, Trey, Ford, Hayden and Hampton

Thursday, October 15, 2009

Hampton's Healing Continues.....

Good Morning sweet friends and family! So sorry I didn't blog yesterday. It was a busy day spending time with Miss Hampton, now that we are no longer in the hospital together. Everything just seems to take a little longer: getting her mommy's milk to her & travel-time to her. Of course, it's just a new routine and no big deal for us.

Hampton started a new routine the night before last. She is no longer on oxygen or air flow to help her breathe! I don't want to jinx it, but then I remember with the Lord on our side that is not possible. He wants us to rejoice in his good works, so that is what I want to do... praise the Good Lord for Hampton no longer being dependent on oxygen and that she is started to breast feed and bottle feed a couple of times a day. She still gets some of her feeds through her tube, but she is doing really well. The other night she tried to breastfeed for about 20 minutes, but she fell asleep after getting 7 good minutes of milk. Then she took a little bottle and the rest was given in her tube. Yesterday she didn't do so great at the afternoon feed because she got the hiccups and was frustrated (poor baby)! Last night we had a big breakthrough.... she nursed for about 35 minutes and 25 of that she was latched on really good... GO HAMPTON! She still had to get some of her feed by tube, but hey, Hampton is making amazing strides.

I have to say... I miss that we are not both under the same roof, though I am happy to be out of the hospital. It was; however, easier when a floor separated us as opposed to 15 minutes of Arlington traffic.

Our sweet friend Melissa, and Ford's primary nurse at Cook Children's came to hang out with Miss Hampton and me yesterday. It was so great to spend time with her... she really is like family now. I know Hampton is going to love her when she gets older.

Other than that, Trey and I spent most of the day cuddling with Hampton, praying with and for Hampton and doing regular parent things like changing her diaper :)

Please pray that a light bulb goes off.... and Hampton starts feeding like a champion. That is the hurdle we need to cross before she can come home with us. I have faith in her and the Lord that it will be done VERY SOON!

Lots of love and sincere thanks,
Dana, Trey, Ford, Hayden and Hampton

Picture Worth A Thousand Words

Picture Worth A Thousand Words

Proud Parents

Proud Parents

Proud Mommy

Proud Mommy

Proud Papa

Proud Papa

Pics of Ford

Pics of Ford

Pics of Hayden

Pics of Hayden