All in a Night

It's been over two weeks since we were introduced to Lucy's new feeding system , I thought I would give an update on how things are going. The calculations for figuring out how much to put in the IV bag are getting easier now that we have learned what the best rate is for Lucy to receive her feeds. We have learned that the "Joey"pump has a 10% error in its run time, that explains her discomfort and...

Happy Thanksgiving

They're alnost all looking!If only she could!Happy Thanksgiving from our house to yours!P.S. She pulled her tube just before dinner, we think she was making room for mo...

Giving Thanks

We have so much to be thankful for! We just wanted to say thank you to everyone who has helped our family by praying, wishing us well, watching our children and loving them like your own, organizing a meal schedule, making us meals, calling to lend a helping hand and listening ear, lending me a shoulder to cry on, visiting us in the hospital, flying great distances so that you could be here for all...

It's Just Viral

I took Lucy in to see our pediatrician today because she has been running a fever for several days. Being the mother of four I do not panic when the kids get a fever, because kids do get fevers. But with Lucy I have had to adjust my thinking some. Believe it our not this is the first time that Lucy has been sick with a fever. She has a number of other medical issues but fevers are not one of them....

Kids Say the Darnedest things

Megan said to me recently while looking directly into my eyes, "Mommy, you have maps in your eyes.""Oh really," I said, "where are the maps going to?""Nowhere!"I think I need a nap!...

Guilt and Hope

I have said this statement a lot recently, "As a mother two feelings prevail, guilt and hope!" I know that all of my fellow mom friends can relate to what I just stated. Tonight Drew and I have the opportunity to go to a party at Longwood Gardens. We love Longwood Gardens and have always wanted to attended a party there. We are blessed with help this weekend. My in-laws came to visit the kids and...

It's Not That Simple

Thank you for all your thoughts and prayers today! We wish that we could tell you that the metabolic doctors have found the reason for all of Lucy's issues, but unfortunately it is not that simple. Some of Lucy's labs are showing signs of a possible metabolic link, although they are hesitant to diagnose it as such. We have learned that whatever Lucy has it is NOT easy to diagnose, if it were we would...

Perspective

Our lives have changed so much! Since the birth of our first baby, nothing has been the same! We have evolved as individuals, as a couple, as the parents that we have become today, and as a family. It has been an adventure. That being said, we are anxious and terrified of what will be next for Lucy. Drew and I are trying to live in the moment, but those of you with children know that you are always...

The Inevitable

Was anyone taking any bets on how long it would take Lucy to pull out her tube? Well the answer is 5 days! Sunday night Drew and I were trying our best to do our usual "pick up and organize before Monday routine" though you wouldn't know it by looking around. We were walking around doing the motions but not really doing much at all when we decided to leave the mess and go to bed. We too have a very...

Bedtime

Every parent has a been time routine. When you have four children, your bedtime routine is as rehearsed as a major orchestral production. Drew and I each have our individual roles at night and we do them in sync as we are working towards the goal of getting everybody sound to sleep. Things are different now! As a breast feeding mom I have been blessed with the ability to put a baby to sleep while...

Home Sweet Home

Yesterday I started a crusade to get us home! When you walk around the unit you see and hear about so many sick children, you can't help but think how much worse things could be. There are so many illnesses this time of year, I knew that it was better for us to get Lucy home than to stay at the hospital. Lucy was acting more like herself in the morning, after sleeping better, not great but better,...

A Moody Day

Today was a rainy day which didn't help my mood. I always think of my dad when I describe the weather and how it affects my mood, he is the same way. Now that being said, he lives in Wisconsin where it is winter more than 1/2 of the year, now you can better imagine his moods. I guess I inherited this from you Dad, I love you though.Lucy is sleeping! She is so behind on sleep! For those who don't...

Summary of Our Day

Has anyone else noticed a reoccurring theme in our lives, it's called hurry up and wait! That should be the title of this post. It has been a very trying day! Last night Lucy did well after receiving a 10% dextrose solution of IV fluids. This is a higher concentration than normally given. What I thought would be an overnight stay has turned into a several night stay. We learned yesterday that Lucy...

Update

We have been given orders to place Lucy's NG tube today. This sudden change in plans has my head spinning! This means that we will be here another night as we are going to be trained on how to place the tube, how to tube feed Lucy, and observe how well Lucy tolerates the feeds. I was really hoping that we would be able to go home sometime later today as we are functioning on little to no sleep....

Admitted

I'm not sure where to even begin this post...Lucy was admitted to DuPont tonight after a very long day of appointments and tests. She was having symptoms similar to what we had experienced with her before in September only not as severe. She was admitted with the hopes of "getting her back to baseline." It appears that Lucy is having difficulties with fasting and fatigue. Labs have been done and IV's...

Saturday

We woke up this morning to the rain falling. Sometimes you just need a rainy morning to slow you down. Today was the first day in a long time that we spent the entire day at home. Well, I should say that most of us spent the entire day at home. Megan went to her friend Lia's sixth birthday party by herself. That was a first for us, letting her go to a birthday party by herself. I should mention that...

G.I.

Thank you to all who have commented on our new blog. You can subscribe to our blog so that you will automatically receive e-mail updates when we write a new post. You can also leave comments on each post, not sure if you need to register your e-mail address first. If you feel more comfortable, you can continue to e-mail us at our AOL address. Either way we love to hear from you! I don't think that...

Appointments

Here’s anonther update on our little Lucy…On Tuesday, November 4th, Election Day, we took Lucy see the metabolic specialist at Children’s Hospital of Philadelphia (CHOP). Drew and I were really hoping that we would get some answers to some of Lucy’s health problems. As many of you know Lucy was diagnosed with failure to thrive (FTT) at around ten weeks of age. She has essentially not gained any weight...

Our First Post

So here's our attempt at going global. We thought that it might be a good idea to start a blog about our family and all that is going on in our world as a way of keeping all of those who know and love us informed. We are hoping to use this blog as a way of spreading the word and keeping a journal of our family li...