Milestones and Hurdles

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Friday, May 30, 2008

Home Sweet Home for 4 Hugheys

Praise the Lord, Ford and Hayden are finally home after 4.5 long months!

It sure is nice to finally reach this milestone, especially when there were really dark days for Ford and Hayden with their preemie lungs, kidneys, stomachs and hearts. We made it... we always had faith we would, but there were certainly plenty of health scares along the way. Of course it started with the grim odds doctors gave us about 25 weekers surviving. Back then, the boys weighed only 1 pound 14 ounces and 1 pound 15 ounces... Today Hayden is 9 pounds 6 ounces and Ford is 9 pounds 12 ounces. How amazing is that.

We also were blessed not to have stomach issues like many 25 weekers do and that usually translates into many surgeries and a longer hospital stay. Their head ultrasounds and eye exams have also been very good so what can we say... except Thank you Lord!

Hayden has been home for a month today and is doing really well. He now eats much better than he did when we first came home and seems to be over his oral aversion. He likes his milk and he will take it down. He also likes to sleep on mommy and daddy's chest and well... these boys get what they want after all they have been through. We are still working on sleeping alone with him... he is not fond of it, but it is something we have talked over with our pediatrician and at this point we just can't let him "cry it out" because of his lungs.

He does get breathing treatments for wheezing, but so far they seem to be helping and the wheezing does not seem to hamper his oxygenation.

They are getting better though. We saw the pulmonologist right before we left Fort Worth and he was pleased with Hayden's progress. Over the next month we are going to try and get Hayden off his tiny wiff of Oxygen... that will be great. It is hard to transport two on O2 and monitors, but you know what... we will do what we have to do. Certainly not a big deal... we are just glad they are home.

As for Ford, He is doing great as well. He is on 1/8 of a liter of O2. He still has more lung issues than Hayden and really needs his oxygen, but considering what he has been through... he is just amazing. He is still working on being a good eater. I can't blame him for his oral aversion though... he was on a ventilator for more than 3 months... so something going down his throat is a bit scary for him. The doctors are also watching his kidneys closely because of their issues, but so far he is stable in that area. Mr. Ford is the better sleeper and would probably sleep through the night, but he still needs feeding every 3 hours. We are happy to ablige them both. Ford seems to like being home and cuddling more with mommy and daddy... though we probably enjoy it the most. I can't even begin to tell you what a tough road Ford has had... you just wouldn't believe how far he has come with his chronic lung disease. If you would have asked me a month ago if I would have thought we would be home in May with Ford... I would not have said yes... but you know what he has shocked and amazed us all... even his doctors. He is ready to get better... he has the strongest will to live of any one I have ever known and he is only 4 1/2 months old. Hayden is right there with him on that though!

It is an amazing thing being a parent. We have some high maintenance children, but we are just so thankful they are here with us... that is all that matters.

The boys will be a more sheltered than most because of their weaker than normal immune systems. In time, we can't wait for our friends and family to get to spend time with them. We know how special and wonderful they are... we can't wait for you to enjoy them too... but that will come in time.

Thank you for all of your prayers that helped us find our way back to Tyler with our 2 miracles. There were many sleepless nights filled with tears and even anger at times. That happens when you have to watch your boys go through so much and can't help them. But you know what, it's amazing what the Lord can do. We can't wait to enjoy our two children and love them back to health. This truly is going to be the best time of our lives. We are also thankful we have found that blind faith you hear about, but maybe don't always believe in. I believe... I always did, but my faith is even stronger now.

We just also want to thank our amazing Dr. Lynch! She saved our babies lives and ours. She is more than a doctor... I am happy to call her a friend. She works with many other wonderful neonatologists at Cook. There were two others that really took amazing care of Ford and Hayden, Dr. Nedrelow and Dr. Nesslein. We just adored them... they were there to help us when Dr. Lynch was not on and they helped get us through this time as well! Also to our boys primary nurses, you are all the very best. The best nurses and the best people. Thank you for loving my sons and taking such exceptional care of them. I will love you forever because of that! Cook Children's and their NICU... is the best. They can do things with preemie babies that seem impossible and nurse them back to health... what a blessing.

We will do our best to keep you updated on the boys and post pictures. They keep us busy and we could use more than two hands at this point, but we have parents that help make it all possible.

With Love from TYLER,

Dana, Trey, Ford and Hayden


Candace Foster said...





Anonymous said...

Praise to God that the babies are home! Looking forward to seeing you back on air.

Brownsboro, Texas

julier said...

Congrats on getting to start your new life with your two sweet babies in Tyler. Can't wait to here more and watch them grow.

Anonymous said...

Praise the Lord, your family is all home! I'm so happy to hear that Ford is doing better and was finally able to come home and cuddle with his mommy and daddy! I look forward seeing many more photos of them as they grow into handsome young men. Can't wait to see you back on air too!

Anonymous said...

How wonderful to read and see that your family is home in Tyler. The babies look wonderful! Hard to believe they both weigh over 9 pounds. God is Good! We have had a strengthen of our faith as we have been priviledged to follow the progress of your miracle babies. We look forward to continued updates as your twins continue to grow and heal while dwelling in the arms of our Lord.
Thanks be to God, for all the GREAT things He has done!

amyla said...

wow! we are so happy for you guys. They have come so far! michael got the last bracelet from hills a couple of weeks ago and he has been sporting it 24-7. Can't wait to meet those sweet boys someday. We will continue to pray for your family and praise the Lord that he has been so good!

mommyof5 said...

I have been reading your blog for the last 3 months or so. I cried when I read it today. I am so glad that BOTH BOY are home with you. I had twins a little over 4 years ago. I was forunate not to have them stay in the NICU though. I can't imgiane what that would have been like. My prayers are with you all as you proceed forward. I know you will enjoy and cherish every minute with them. I think parents of NCUI babies really do enjoy and take little things for granted less than most parents. I know God is holding you all close....

Mommy of 5

Anonymous said...

I want to share my website. I kept it from the day my one pound, 10ozer was born. (I had to retro post some). She was a 28wker and had an easier NICU ride than the boys but I do have some RSV prevention tips that you'll not read anywhere else. The Most Unusual RSV Prevention Tips There is a link at the bottom of this page to the Home Page. The Home Page has updates on Elizabeth Grace from birth to about 5yrs old. She's 9 now and still showing no signs of learning disabilities.

Anonymous said...

I was so glad to hear the great news that you are all four in TYLER! God is good! I enjoyed the update and it still brings tears to my eyes. May God continue to bless you all and I pray for the boys health to continue improving and strengthening. Have an awesome week! Love and cuddle those boys all you's ok to spoil them! =o) They can sleep in their own beds later...LOL! You definitely won't be the only parents that have children that don't sleep alone.

Jean said...

Oh, how I love the sound of that! Are you about to get a routine down? I cannot wait to meet the boys. I redid your shower video to all we need is a miracle...I will send it soon. I was waiting on Janet and Lindas pictures. Any don`t we serve an awesome God? Without His grace, this person would not have a life. Pleas know that the prayers have not ended. We love your family and will continue to pray for all of the Hughey guys, and Dana too! We love you, Nanie and Grumpy!

Anonymous said...

Congrat! What a journey.... I have been following this from the get go. Our collective prayers have been answered. Here's to you 4 for an incredible journey!!!

Daren D. Hanson

Anonymous said...

We are so glad you are home and hope things are going fairly smooth. The boys are just adorable and I'm sure that from all the prayers they have had, that they will be healthy and really keeping you busy in a few more months. God is so great and just know that even with all you have been through, that God has blessed two special parents with two amazing little boys. He knows that you will do all in your power to do everything that needs to be done for them. Hope you have time to update soon, but know that your days and nights are really busy right now. Take care and enjoy every minute, after all ya'll been through, you deserve some happy time with the boys.

A GMET viewer

Chrissy said...

Hello, Congratulations on getting both of those amazing little guys home. What a long road it has been for you guys. I was reading about your "sleeping issues" :) I have 1 little boy, and was never able to let him just cry it out. I read tons of books on sleeping and 1 really helped us. It was called The No Cry Sleep Solution. I know you don't have time to read tons of may not even have time to read this one:), but if you can...perhaps it will help. I wish you all the best, and will continue to lift you up in prayer. It only gets better as they get older!

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