Milestones and Hurdles

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Thursday, February 28, 2008

More Prayers Answered For Ford & Hayden

First of all let me say... we are sorry it has taken us so long to post an update on the boys. We were without internet at our apartment for several days and now we are finally back up and running. Trust me, we wanted to post about the twins' progress, even their setbacks because you all, with all of your prayers have played such an important part in their lives so far.




MOMMY & DADDY ADORING FORD!!!!!

Well, finally my fever broke last Wednesday and I was able to see the boys on Thursday.. that's after more than 3 days not hanging out with them. Certainly not a moment to soon. I am sure I was needing Ford and Hayden far more than they needed me. Later on Thursday night we were able to hold the boys again. Every time feels as good as the first just because the times we get to hold them are so few and far between compared to most new parents. I think my husband even got a little tear in his eye when he held Hayden recently. It's just so amazing to feel their heart against yours, a heart and lungs that have already been through surgery and they are only 50 days old.

HAYDEN IS WEARING PREEMIE CLOTHES NOW!!!!!
Both boys are up to full feeds now on their mom's milk... that is wonderful and is really helping them grow... along with a little additional calories added to my milk. Now, they still take their feedings in a feeding tube, but one days soon, we will be headed to a bottle. Trey and I are changing a lot of diapers... and enjoying every stinky, messy second of it. We also take their temperature and help bathe them and brush their hair... boy do they look handsome then!!!




FORD PREFERS HIS FINGERS TO HIS PACIFIER!!!!
Ford and Hayden are both over 3 pounds now... Hayden is knocking on 4 pounds, but is a little shorter than Ford. They both have their own little personalities. Hayden is a little more chilled out yet fiesty on occasion and Ford, is more high maintenance, but sweet as can be!!!!
Up until Tuesday, both boys were on the conventional ventilator. Then on Tuesday, Dr. Lynch moved Hayden over to bubble c-pap because his settings were so low on the vent and his blood gases were so good. So far, so good on the bubble c-pap. All of the gear makes him look like My Little Martian, but he is always handsome and more importantly, the CPAP is more gentle on their lungs than being intubated on a ventilator. Oh yes, and Hayden can finally wear clothes. He looks too handsome. I keep asking the Good Lord that Ford will follow in Hayden's footsteps soon. I am his biggest chearleader. Ford is getting some breathing treatments that seem to be helping! That warms my heart.

Now we just need to get Ford's rate and oxgen... down like his brother on the vent!!! That is our prayer this week.

As always, we're pooped tonight, I will try to write more tomorrOw. God Bless you all for your diligent prayers! Please keep our little men in your prayers each night.

LOVE,
Dana Trey Ford and Hayden









Wednesday, February 20, 2008

When Text Messages are All You Have!!!

The Grandparents Visiting their Twin Grandbabies!!!


Hello again friends! I just got off the phone with our boys doctor, Dr. Lynch. She says she is still pleased with the boys progress even though both Ford and Hayden had setbacks over the weekend. Their mommy had a bit of a setback as well. What I was hoping was a cold or something turned out to be bronchitis and a sinus infection complete with 4 days of fever and thus no time with my boys. TEXT MESSAGING HAS BEEN MY LIFELINE TO THEM. My sweet husband has been by their side while I am fighting this tough infection. He texts me several times and hour with their vital stats, how they are looking and what the doctors and nurses say. He also takes puctures with his phone and texts them to me. That at least helps me feel a little closer to them. I am hoping I can keep the fever at bay and will be able to see them tomorrow (Thursday).


Picture above is our Little Ford from Last Week

Back to how the boys are doing... Ford did not respond very well to a super wean on his ventilator over the weekend so he went from a rate of 28 breaths a minute up to 55 at one point and now he is finally back down to 44. he also had to have a breathing treatment during this time because his breathing was very labored and he was requiring more oxygen as well at the time. Dr. Lynch is now going to start weaning him by 2 each morning so we can work towards getting off the ventilator. I pray... and hope you all will too that this works and he can get off the ventilator sooner rather than later. The doctor also wants him to gain more weight so she is adding some calories to their mommy's milk to help him beef up some. Other than that he is looking pretty good according to the doctor, Trey and of course, the Text Messaged Pictures!!!

Picture above is our Little Hayden from Last Week

Little Hayden was doing amazing on his ventilator he was down to 18 breaths a minute and doing really well until Sunday night when his Oxygen Saturation started to drop and his heart rate too, which scared his nurse and us... I had called her just about the time this happened since I was not able to be at the hospital because of my fever and infection. Trey rushed up to Cook Children's. They immediately got him a breathing treatment, tried to turn his tube to see if that was it... but he just wasn't looking like our Hayden. Now his breathing look labored, so they went up on his rate back to 40 where he started... so the vent was doing most of the work for him. That all helped some, but not enough. They did an Xray to see if something had changed in his lungs, if his tube was in a good place or any other red flags. They did not see anything alarming. By morning they had decided to change his tube because they believed his issues were mechanical. That's why the doctor on call decided to intabate him again with a new tube. His tube was apparantly hard at the end and that can cause problems. He seems to be doing better since then and looking more like himself. That's hard to see in the text messaged pictures, but I am still thankful for them. Today the doctor said his lungs looked a little "wet" so she is going to give him some lasix and hopefully that will help get his oxygen support down as well. I am praying that is the case... I hope you will say a little prayer for his lungs too.

The doctor gave me more hope today that the boys will get off the ventilator despite their chronic lung disease and things will get better for them in the weeks to come. This is something I know will happen because I have faith that God is going to see His 2 miracles, Ford and Hayden, through this. I believe we are supposed to be a family! It is just taking these little handsome men TIME to get well. Trey and I tell them all of the time about the prayers they are getting from all over East Texas and the world now. They may not understand it now, but one day they will. One day they will also understand how blessed they are with amazing doctors and nurses who take care of them. I can't wait to come back in a year and show off how far the boys have come because I believe the Lord has that in our future. I love this bible verse and I lean on it a lot and it was emailed to me again today... I guess someone knew I needed to hear it again.

"I know the plans I have for you," declares the Lord. "Plans to prosper you and not to harm you. Plans to give you a hope and a future." Jeremiah 29:11

We have received so many encouraging words from all of you, many who have experienced the NICU... we thank you for your words and NEVER get tired of hearing from you... You keep us going. All of the people praying for us, the churches praying for us... that all keep us going. We truly love you all for your faithful prayers. And I just have to say thank you to whoever discovered text messages and camera phones... it certainly has helped this mommy,
Love--
Dana, Trey, Ford and Hayden









Sunday, February 17, 2008

Missing My Boys


Today has been a hard day for this mommy because I could not go see my boys. I came down with a fever overnight and some serious chest congestion so I was stuck in the apartment all day while my mom, Trey and my mother-in-law went to be with Ford and Hayden. I am told they both had pretty good days.

That is certainly good news because Saturday was not a great day for either one of them. Hayden had been weaned quite a lot on his rate on his ventilator so he was needing more Oxygen support. At the same time, Ford was having concerning blood gases. His CO2 was high and he just was not breathing all that easily. The doctors ordered labs on him to make sure he was not getting an infection, they also adjusted his ventilator settings to give him more support, and ordered him a breathing treatment. Slowly his gases got a little better in the late afternoon and into the night.

The boys were blessed to have some visitors this weekend. My Uncle Ronny and Aunt Karen came to see them... our sweet friends Julie and Chris, our cousins Linda and Oliver and our life-long friends John, Linda, Mandy and Lauren came from all over Texas to see the boys. I wish the boys would have been feeling better so I could have enjoyed the company more, but the boys needed our attention.

Julie and Chris brought us the sweetest notes and gifts from a MOPS group in Tyler. It is gestures like this that continue to amaze me... and remind me how beautiful the people in this world are. I know these ladies are probably busy with their lives and their children, but fortunately for us... they take time each day to pray for us, WOW! The boys are so loved by so many people they and we have never met. I can't wait to tell them all of the stories about the East Texans and people all over the country who love them and prayed for them to get better.

I am getting to be in that stage where I miss Ford and Hayden so much that I want them to make strides they are not physically ready to make yet. I know it will happen one day in the future and I am more then willing to do it in God's time, but I just want to hold them more, rock them to sleep, give them sweet kisses and have them home. I know it is a normal feeling, but the longing I feel for my sweet baby boys brings me to tears sometimes.

Ford's nurse told me today he was wide awake at some points. I hate that I missed that because I was sick. It crazy how much I miss diaper changes and taking temperatures.

I pray that tomorrow I will have kicked this sickness and fever and will be able to see the twins tomorrow night, but I don't want to do anything to make my boys sick. I alerted the nurses right after I realized I had a fever that I was sick just so they could watch the boys more closely for any signs of infection. I guess my defenses are just down and it doesn't take much to get sick when you don't sleep much and you spend hours upon hours at the hospital watching after Ford and Hayden. There is no other place I should be or would rather be though.

I think about all of you a lot. Those of you who pray for us and blog to us. I want you to know I think you all are very special people. To take time out of your day to reassure us, pray for us and read how our two little miracle boys are doing, just amazes me. There are so many people doing special things for Ford and Hayden. At my mother's work, some of her co-workers are giving up their favorite things until the boys come home, a contractor who worked at my mom's house donated his fee back to the boys, several ladies stopped my mother in law at Marshall's to tell her they were praying for the boys... the list goes on and on! I am just amazed that Ford and Hayden have touched so many people's lives and you don't even know them yet. I want to tell you they are precious. They are all LOVE! The Power of Prayer is working in them and I am so blessed. Trey and I will never take any of you for granted because we know we could not do this without all of your love and support.
All our love,
Dana, Trey, Ford and Hayden

Wednesday, February 13, 2008

More Miracle Milestones by Ford and Hayden

We have big news on the Ford front! He went to the conventional ventilator on Tuesday. After having a pretty good weekend on the oscillator ventilator, our neonatologist decided to give him a shot on the conventional venitlator. Dr. Lynch was on all weekend with the boys so she was able to follow Ford and Hayden closely. We were excited, but a little nervous about Ford making the big move considering his history of having a great day, then a crazy one the next.

Ford surprised us all and did pretty well on the conventional ventilator. He also went up on his feeds and that's big news because just last week he wasn't even on breast milk feeds.

As for Hayden, he has been quietly plugging along on the conventional vent. He had kind of reached a plateau where he wasn't being weaned on his settings or having to go up. So Dr. Lynch has decided day by day, she is going to try and slowly wean him so he will be doing more of the breathing on his own. Oh, and did I mention... Hayden is completely on his mommy's milk no more lipids or TPN.

While the boys were doing so well... we decided to have a Valentine's dinner with my sweet mother in law and 2 sister in laws before heading back up to the hospital. We were nearing the end of our meal when... I started not to feel right. I will spare you all of the horrible details, but I ended up back in the hospital last night. I was put on a medication to hopefully fix the problem and of course some pain medication to handle all of the cramping I was dealing with. We were also waiting to see how I responded to the medication before Dr. Seligman decided whether I needed surgery this morning. Well, I avoided the surgery... was released from the hospital late this morning and will head back to the doctor tomorrow to see if I am better and have completely avoided surgery :). The dear Lord is teaching me true patience right now and I am learning how strong Trey and I really are.

Tonight my pain was taken away though... I was finally able to hold my sweet Ford. It's what they call Kangaroo care... when the baby's skin is up against your skin. It is a true healing experience both for them and you. Ford is a bit of a wild man by nature. He goes crazy when his diaper is wet, when you change him, or if he doesn't like the side he is sleeping on... but he was completely calmed in mommy's arms. The feeling, I assure you was mutual. For about 30 minutes, Ford was the calmest the nurses had seen him without some sedation... he just needed to hear mommy's heartbeat again and to be close again. It is the most cherished and amazing experience to hold our babies and to know our touch is doing them good. At the same time, Daddy was able to hold little Hayden too. Of course, the handsome little one loved resting on his daddy's chest. He had his dark sea blue eyes wide open... taking in the sight of his daddy. For the first time since birth, the boys were close again. Trey and I sat side by side while we held our 2 little miracles... it is a moment we will never forget. One of our nurses tonight said... "I don't know who enjoyed the experience more... Hayden and Ford or you and Trey?" That was sweet music to our ears.

Tomorrow is Valentine's Day and the boys primary nurses have already made them their first Valentine's Cards. They hang above their incubators. I can honestly say this Valentine's Day is filled with more love than I have ever known. I have the love of my life, Trey to spend it with... and the loves of our lives, Ford and Hayden. I hope you are all so blessed this Valentine's Day.

Thank you all for loving us and keeping us in your thoughts and prayers as we go through this long journey... you truly do give us strength. Bless you all!

Dana

Sunday, February 10, 2008

The Twins Are Making Strides

Well, since last we posted a lot has happened. The boys turned 1-month old on Friday and as their present... Hayden went on a field trip to be closer to his brother, Ford. Yes, now the boys are on the same row next to each other in the NICU. They had been on different rows and everytime we went from one bedside to the other we would have to change yellow gowns and again wash our hands as to avoid cross-contamination. Well, we still wash our hands a lot, but no more costume changes, walks to another bedside, or guilt that we are with one sweet baby and not the other. This was really good news to me, mommy, at 4am Friday morning when I called because it meant Hayden was stable enough to be moved next to Ford. Now we sit our chairs in between their incubators and only have to turn our heads side to side to see our little miracles... we are all together now and one big family.

Another birthday surprise were 2 sweet signs from our nurses taking care of the boys. One said Happy Birthday Hayden... the other Happy Birthday Ford and will look great in their baby books. Their birthday turned out to be a good day for both boys... Ford was responding great to his Oscillator Ventilator and Hayden was doing great with the conventional ventilator.
Believe it or not, that continued this weekend. We are hoping the boys defy the rules and continue taking only steps forward, but we are prepared and ready to take on the rollercoaster of the NICU... we have some tough twin boys.

This weekend I was able to help give Hayden a bed bath. With the help of his sweet nurse, who is also from Tyler, I washed his hair and his tiny little body. The hair washing and brushing he didn't mind... he was not a big fan of the body washing, but he was a trooper.

While I was doing the washing... Dad "Trey" was with Ford... helping the nurses weigh him, which meant picking him up while the bed scale prepared to weigh him. Good job Daddy. It was a good night on Friday.

My mom and some friends came to see the boys on Saturday, of course, fully sanitizing themselves. It is always nice to have our family come visit because they help keep us strong and do so much for us. My mom also brought me this amazing list from her co-workers at Azalea. Some of them are giving up their favorite things until the boys come home. It is sort of like giving up something for lent. How amazing is that people would do that for our boys.

Sunday Trey's parents and the boys' Aunt Hills came to visit. They were so thrilled to see how the boys were doing. Both Ford and Hayden are down on their Oxygen and their blood gases have been so encouraging. They were also able to see me hold Hayden again and we took even more pictures. We also snapped some of Handsome Ford because we certainly don't want him to feel out of place.

These days Trey and I cherish every good moment, every time we get to change a diaper, take their temperature and hold their tiny little hands. These boys are our world, our every thought and we love them so much. We have also started reading to them. We think they like it so far... we know we do.

Thanks for all of your love and support and we love hearing from you. We hope we have more good news in the days to come and we have faith we will with all of your prayers for Ford and Hayden.

Love-- Dana, Trey, Ford and Hayden

Thursday, February 7, 2008

Huge Day....

Let me first preface this by saying...Thank you!! We have received so many fabulous responses since our story aired on KLTV last Thursday night. Dana and I did a ton of praying and contemplating on whether we should invite the entire viewing area of East Texas into our lives during this, the most difficult times we have ever faced. It felt as if we were in a catch-22... how much do we share, do we go into exact details and so on! Going back and forth we finally, obviously decided on the right decision. The decision of asking all to pray specifically on each hurdle has been extremely beneficial for the boys. Witnessing all that we have these past 4 weeks has been such an eye opening experience for both Dana and me. Not only has OUR bond grown right before our eyes, but our faith has grown exponentially!! We realize that science plays a major part in the health of our boys...but we give our utmost attention and praise to what our amazing Lord and Savior continues to do for our sweet miracles. So Thank You again for lifting up our boys each and every day with your constant prayers, thoughts and well wishes. Without the endless supply of prayers, who knows where we would be at this moment.

As for an update on our amazing little fighters...the rollercoaster took a turn for the better this afternoon. The morning started out tense and suspenseful, as usual. Ford was once again back up to 100% on his oxygen, and barely Sating in the upper 80's. Our amazing Doctor made the decision to switch him from the JET Ventilator, which he had been on since getting to Cook Children's. The switch was made to the Oscillating Vent, which allowed him to oxygenate better. The decision to make the switch was obviously the correct move. Ford slowly began to go down on his need for Oxygen...His primary nurse was so attentive to his every need. By noon, Ford was down to about 80 percent on his oxygen, and heading in the right direction. Dana and I can not stress how blessed we are to be surrounded by such an able group of very qualified Doctors and caring nurses. We know we are in the right place when our primary doctor and nurses think about our boys even on their days off. By the time we left this evening Ford was requiring about 49% oxygen and doing much better.
As for his handsome twin brother....Hayden had his best day to date. Hayden was taken off the JET Ventilator early yesterday morning and put on a Conventional Vent...once again the right call made by our overly amazing Doctor. The Conventional Vent is a major step forward for Hayden. After having a great day yesterday, a smooth night last night, and an uneventful morning this morning, our Doctor and Haydens wonderful primary nurse gave Dana and me the go ahead to hold him for the first time. As you can tell from the pics, both Mom and Dad could not have been any happier. Holding your child for the first time...albeit 4 weeks after birth, is the most magnificent moment we have ever experienced. To look down and see the same kiddo that has been poked, prodded and inundated with tubes since his first breath....makes you forget about all the set backs, all the tears shed and all the hand washings. For that brief moment when Hayden was in our arms, Dana and I for the first time were allowed to experience the joy of parenthood. We now are counting down the moments until we can do the same for Ford.

Once again, we could not have done this without the most amazing nucleus of immediate family, friends and amazing new people we have met along the way.

Until next time,
Trey, Dana, Ford & Hayden

Sunday, February 3, 2008

What a Weekend

Every single day is a joy with our children and all of the obstacles this weekend with Ford and Hayden just continued to prove that. This weekend with our preemie boys was also proof that God has his hands on our little ones protecting them.

It is hard for Trey and I to break away from the hospital... even for a moment, but Friday we decided to go out for a bite to eat with his parents... when we were done... we headed for the hospital. We found our little Ford having a rough night... his lungs were not working efficiently thus he needed 100% oxygen help when he had only been needing about 40-60% Oxygen support. Of course the doctor tried to reassure us that this is a frustrating and scary part of their chronic lung disease, but I was scared to death and unable to tear myself away from the hospital.

Our nurse taking care of Hayden told us what a good night he was having and had us come over and help change his bed. He was looking better, having great blood gases and was flashing his gorgeous blue eyes at us. I think he even smiled at us. His good night really helped us as we were dealing with a tough night with his brother Ford. Finally after Ford made some progress... we left at 4AM for out temporary home in Fort Worth.

Then... on Saturday, Hayden starting acting NOT right. His Oxygen saturation starting dropping off to dangerous levels and his other vitals were also in a scary range. I will spare me and you of all of the scary details, but the nurses and doctors were having to watch him very closely because they were thinking he was having bronchial spasms which was making him work against the ventilator. I cannot explain to you how scared this mommy was... still is. I just started walking around praying to God. I couldn't think of anything fancy or eloquent to say except, Lord please take care of my Hayden... please keep him with us." As the night wore on... the spasms became less drastic, but I could NOT be torn from the hospital. Oh, did I mention Ford was having issues as well... his oxygenation was also in the scary range... Again, I did the only thing I could do and that was to pray... asking God to heal my twin boys' lungs against all the medical odds. I know every parent wishes this, but I asked for God to heal them quickly as to defy all of the odds of science... "All things are possible to those who believe." That is all I could think of.

I was so scared last night... I just couldn't bring myself to leave the hospital. I took a nap on a bench... Trey took one on the floor. My mom, the boy's wonderful Gram, took a nap in a chair at Ford's bedside. Finally, Suzanne the charge nurse came and found us and took us to the place where families bunk with their babies the night before they go home. She gave us a bed since we didn't want to leave our little miracles, Ford and Hayden. Finally at 10 am this morning we came home and rested... the best we could.

After a lunch with our family, including Bill and Janet (Trey's parents), Hillary and Holland (the boys' aunts) and my mom... we went to check on Ford and Hayden. They were having a better day... and you know, it was not a perfect day, but it was better and that is a blessing and something I thank the Lord for tonight. I love these little boys so much. They bring me such joy... I can smell their scent even when they are not around... I see their faces in my every thought... and I worry about them when I can't be with them, but I refuse to believe anything else except that they will come home with us in the months to come. It is hard to see it right now, but they have to be with me for the rest of my life... I need them so very much... we all do.

I also want to say I could not do any of this without my husband, Trey. He is my strength and my positive reinforcement when I get worried about Hayden and Ford's health. He keeps me sane and stays at the hospital with me when I am too scared to tear myself away from our precious little miracle sons. I hope everyone is as lucky as I am to have support and love in their lives like that. I can't wait to witness all of his Daddy moments with our boys... that will be one of my greatest joys in my life.

Hope you all had a wonderful weekend and a great week to come.
Thanks for your prayers and please, if I can be so bold to ask you, to continue your prayers to God for our sons, Ford and Hayden and their recovery from being preemies with lung disease.

Sincerely,
Dana, proud mommy to Ford and Hayden and the wife of my wonderful, Trey

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