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

Wednesday, May 21, 2008

Quick Update as of Wednesday the 21st of May

I would first like to begin by apologizing for the lengthy delay b/w postings…this full time job of being parents has kept us quite busy. As mentioned in our last post, Hayden is out of the Hospital and he is doing very well. Not sleeping as much as we would like…but we are going to be the last to complain. Our Ford is still in the NICU...now on a 1/8th of a liter of oxygen. The main reason Ford is still in the Hospital is that he is not eating as well as the doctors would like. He is not a fan of eating from the bottle. In order for Ford to be released, he has to eat all 8 of his meals each day by bottle. He is currently eating every other meal by bottle and the rest by his feeding tube. He eats 80 ml each feed, and has trouble swallowing the entire feed. He has such an oral aversion…mainly from being intubated for such a long time. He fights his feeds so much. So for the past week or so, we have been waiting for his feeding to click…but that has obviously not happened yet. We are holding out hope that Ford will be released and the entire Hughey clan will be home in Tyler by early part of June. We continue to pray that our boys will one day be healthy little babies…they will continue to have their hurdles…but we are overjoyed with the way they have turned out. The fight that these two kiddos have put up so far, at such an early stage in their life is overly inspiring. These “little fighters” who were given very bleak odds to make it through their first night, have shown unbelievable resilience and have overcome remarkable hurdles. Without your prayers and well-wishes being sent their way each day….who knows what the outcome would have been. Dana and I firmly believe that the power of prayer kept our boys going…and most definitely kept us going. So from the bottom of our hearts…we thank you and will forever be indebted to all of the magnificent friends that we have made along the way. This experience turned our lives upside down and inside out…our way of life and daily routines changed on January 8th. Our faith has grown exponentially throughout this journey….I thought I knew how to pray before all of this started, how na├»ve I was. Now I can say with certain, that I along with Dana have seen prayers being answered by our wonderful Lord and Savior. He is most definitely the Lord of all Lords. And we are forever Thankful and Grateful to have him working behind the scenes on our behalf. Thank You…Thank You…Thank You!!

Thursday, May 1, 2008

Hayden's Home Away from Home... Ford's Progressing!



One of the days we've been waiting for since we became parents finally arrived Wednesday, April 30th. Our little son, Hayden was finally released from the NICU and the hospital. Of course, it was a bittersweet day because we were not able to take our sweet Ford home as well. He is working hard though to join his brother!


For the prior 2 nights, we roomed in at the hospital to make sure we had his schedule down... feeding him, caring for him and giving him his medicine.


He still fights us at times taking all of his feeds, but we are working on it and just praying he continues to gain weight. We have a doctor's appointment on Friday with the pediatrician so hopefully he still will be looking good. Feeding is his major issue. He is also home on a wiff of oxygen, but hopefully that will be only a month long since we have an appointment with the pulmonologist in a month.


Our first trip in the car with Hayden leaving Cook Children's hosptial was wonderful. He enjoyed his trip in his car seat. I rode with him in the back while Trey drove us back to our apartment in Fort Worth. Hayden's Big Daddy and Big Honey (Trey's parents) came to see Hayden's big day leaving the hospital. Hayden has already napped in his pack and play, swung in his swing... and napped extinsively in his mommy's, daddy's and big honey's arms.

Of course we are a bit sleep deprived, but it is all worth it!!!
Doesn't Hayden look handsome in his going home outfit from the hospital. He saw the outside world for the first time and I think he loved it! We really are so thankful to the Lord for blessing us with this huge milestone in our lives. There were times when the light at the end of the tunnel seemed so far away, so dark... but we are now benefitting from our faith that the boys would make it through their dark days.


There was another big milestone yesterday and this was Mr. Ford's! He was taken off the bubble c-pap and placed on high flow oxygen again. So far... he is doing really good. That is so huge for him and for us because his lungs have been so so sick. Our pulmonologist reminds me all of the time just how far he has come! I don't have pictures of this yet because we were so busy bringin Hayden home yesterday... but I can't wait to show him off! I do have pics of his days on the bubble c-pap! Please keep him in your prayers that this time it WILL work. He is such an amazing little boy... overcoming kidney stones and coping with lung disease. I am amazed by him!

Please keep both of the boys in your thoughts and prayers because we really want to come home soon and back to our family and friends! We pray Hayden gets better eating and comes off his oxygen and that Ford learns to eat and get lower on his oxygen.

Thank you for loving and caring about us.

Dana, Trey, Ford and Hayden

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