Emily: Homeward Bound & First Week

For those who aren't familiar with Emily's story her parents are close friends of ours. Emily was born October 10, 2007. She has been diagnosed with Cerebral Palsy. The following emails came November 19 and November 26.

Hello y'all,

Today was a banner day in the [last name deleted] household! Emily Rose is finally home! We can not begin to express our joy! I didn't believe it was going to happen until we finally had her in the car and we were driving away. I didn't want to get my hopes up too high because they have been shot down so many times before. She is asleep right now and has been a little fussy at times, but nothing we can't handle.

Only time will tell how well she does with sleeping tonight. The nurses told us that the other night she woke up around 4:00 am and began fussing. They turned on the TV to VH1 (certainly not our first choice!) and she quieted down...until it came to a commercial; then she cried until the music came on again. I guess she likes her
music. At least from now on Dawn and I can monitor the kind of music she listens to. It's only Christian music with a dash of country once in a while; but no Toby Keith.

We realize that many of you will want to come and see little Emily, but we ask that you follow a few rules that Dawn and I have agreed upon. First and foremost, please don't drop by unannounced. We prefer you call and set up a time that works for us. She has a lot of doctors appointments, so we may not even be home. We also want to schedule your time when she will be most alert and not interfering with her sleeping schedule...although she can sleep through a train wreck.

Second, we ask that you refrain from bringing your children (12 and under) with you for a visit. Because of her surgery and the medications that she is on, her immune system is not fully developed and we want to keep her as healthy as possible for as long as we can. This also refers to you, as the visitor. If you are experiencing cold symptoms, please hold off your visits until you are feeling better.

On a different note...God has poured His blessings upon us in the past month through our friends and family, and Dawn and I want to give back. What we have decided to do is purchase hooded sweatshirts for the homeless in downtown Louisville. So, if you were planning on buying something for Dawn, me or even Emily this Christmas we ask that you refrain! Emily has enough outfits in various sizes to last us until late spring, so resist the desire to buy her more. She doesn't need any more toys, stuffed animals or things that squeak. What we ask that you do instead, is make a donation to a charity in her name; you could send us a check and we will put it towards a sweatshirt, or you could give to another cause of your choice. If you desire, you could mail us a sweatshirt that you don't wear any more and we will add it to our collection. My goal is to give away between 50 and 100 hooded sweatshirts.

Again, we want to thank you all for the outpouring of love, prayers and support. Our cup overfloweth! Not a day goes by that we don't get a card or package in the mail and we know it is God providing for our every need.

We love you all and covet your continued prayers as we begin to find out what it is really like being a full time parent.

Al for His glory,

Mike
Eph 2:4-7

PS Enjoy the picture of Emily on her first day at home.

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Hello all,

As I always do, I would like to first say that we thank you all for your continued prayers and blessings that continue to come in. God has provided for our every need and our cup is overflowing with blessings from above. We give God the glory for every good thing that we receive because we know that it ultimately came from Him.

Our week started off very quiet and uneventful. I took the beginning part of the week off from work so that Dawn and I could get adjusted to our new lifestyle. We got our first real taste of parenthood and enjoyed the fact that we were finally in control of how Emily was being treated. Our biggest frustration with the hospital was the fact that she had a different nurse every day. Each nurse had a different way of doing things and Emily didn't always like the way she was treated.

It took us a few days to figure things out and get Emily adjusted to the way we do things. Our biggest problem was and still is the fact that she doesn't sleep during the day. She wakes up at 6:00 for her feeding and can stay up until 4:00 in the afternoon sometimes. We are trying to break her of this habit, but it may take some time.

Thanksgiving was a wonderful day! First and foremost, we were thankful that we got to spend the day with our new daughter. A few ladies from our church made us a turkey dinner and all the fixin's, and Dawn and Emily and I enjoyed our day watching the parade and It's a Wonderful Life. We have seen the movie a hundred times, but this year it hit home a lot more. At the end when the whole community comes to the rescue of George Bailey by showering him with love and gifts...that's how we have felt for the past month. You never know how much you are loved and appreciated until you have a tragedy in your life and you find out how many people really love you and care for you. We are truly blessed!

I decided to go back to work on Friday and that's when things took a turn for the worst. I came home for lunch (I work a mile down the road) and everything was fine, although Dawn still had not had time to take a shower. I ate and went back to work. About 2:30, I got a call from Dawn to come home now! The feeding tube came out of Emily's chest! When we left the NICU, the nurse told us not to panic if this happened because most likely it would; but who can help panicking when you know that your baby has a hole in her chest and now you have to go to the emergency room to have the tube put back in.

I rushed home, packed up Emily and Dawn and sped to the Children's Hospital. The funny thing is that Emily was more calm than Dawn and I. She cried a little, but I think Dawn was crying more. After waiting about an hour, we were finally seen by a doctor. He tried to put a tube in and couldn't get it in the hole because it had closed up. This is not what we wanted to hear! Emily didn't want to hear that either!

A little blurb about the feeding tube. There are three different tubes she can get. The first is a dark yellow tube that you may have seen if you have ever given blood. They tie a tube around your arm to stop the flow of blood so they can find a vein. This is what the tube looked like that she had in her. At the end of the tube was an expandable tip to keep it in the body; but it is made of rubber, so it comes out easily. The next tube, which is what she has now, is a clear plastic and has a balloon on the end. The doctor inserts the tube and then fills the balloon with a little water to keep it in place. The tube comes out of the chest, just below the rib cage, (just like the first one) but this one has a rubber washer on the outside of the chest to hold it in place. So the balloon keeps it from coming out and the washer keeps it from going in. The third and final tube is a button. This tube will lay flat to the skin and will pop open when it is time to feed her. This is the thing that will be put on when the hole completely heals. Think of it like an earring. If you take the earring out too early, the hole will close up, but once it heals, you can go a few days without an earring and it won't close on you. We are waiting for it to completely heal!

Back to the story...because the tube wouldn't go in, the doctor decided to sedate her and reopen the hole. In order to sedate her, they had to put an IV in to give her the drugs and to test her blood. It took three nurses and six tries before they got a successful IV. They tried her two hands, her two arms (one arm twice) and finally had to put it in her foot. Every time they tried, they had to hold her down and listen to her scream until they finished. This was a long and exhausting hour and a half!

With the IV in and the drugs flowing, they were able to expand her hole. They did this by inserting metal rods into the hole. A small one, then a bigger one, and a bigger one, until they got their desired width. It was a good thing that she was out cold for this. It was hard to watch! They put the tube in and blew up the balloon and showed us how to take care of it. She was then taken to have x-rays to make sure it was in the right place...then more x-rays 20 minutes later and then we fed her to make sure it worked. Six hours later, we left the emergency room physically and emotionally exhausted!

Saturday was another tough day. With the first tube, it was easy for Emily to push out the food. If she was experiencing gas, she would tighten up her stomach and she could burp through the tube. This new tube is not as easy; she has to work to push out and the first day of feeding, she couldn't do it. So, after every feeding she had an upset stomach and would cry uncontrollably for an hour or two. Needless to say, we were discouraged and not too excited about this new tube.

Sunday took a turn for the better. She learned how to push out with the new tube, so gas was less of an issue. She was more calm after feeding and was actually a joy to be around again. We think we are past the worst of it and the future looks bright. We know that at every turn, there are going to be trials that will test our faith and our patience, but we serve a mighty God who is in control of all things and He will not give us more than we can handle.

Today, Dawn spent the day alone with Emily and did a great job!

I feel like I have so much more to say, but I am experiencing writers block. I will give you another update later in the week to add all that I may have wanted to say, but didn't have the words for it tonight.

We love you all,

Mike

Eph 2:4-7

I'm Back.

I wish I could say my absence has been due to a vacation on a remote tropical island where Internet connections are impossible. Lush flora, warm gentle waves and colorful fish for snorkeling sounds heavenly right now. Unfortunately, that is far from the reality I call life.

The reality is that my parents flew in on the 19th for a week long visit. In my home. Where not one, not two, but three little people live. As you can imagine I spent the week leading up to their arrival cleaning and washing laundry. And cleaning some more. And washing laundry some more. Monday morning saw me as ready as I was going to be for their arrival.

My parents left Arkansas at 6 AM central time Monday morning. Their simple itinerary should have had them at my house in time to eat lunch and then put the children to bed for slightly delayed naps. Operative words: should have.

Due to fog in Atlanta and low fuel in their plane, they diverted to Chattanooga where they had the pleasure of sitting on a runway for over an hour waiting to go back to Atlanta. It goes without saying that they passed their connecting flight to Rhode Island on the return trip to Atlanta.

A couple hours after finally making it to Atlanta my Dad called on his cell phone (he called a couple of times from Tennessee, too) to say they were finally boarding. Yeah! We would try to squeeze in a short nap for all the kiddos before meeting them at the airport in two-and-a-half hours. Mom and Dad would still be able to rest before we picked up Joel for supper (why we had to pick up Joel is a whole other story, the short version is his truck is unreliable). About 20 minutes later Dad called again.

"The nightmare continues" were his exact words. Due to mechanical difficulties they had to UNLOAD the plane. This regularly scheduled flight should have left around 12:30 EST. Anyone who has flown knows how it goes. "We'll take off in an hour." "Go to XYZ gate." "It's going to be another hour." "Go to ABC gate." Etc...etc...etc..

They finally left Atlanta after 4:30 PM and arrived here about 7:00 PM. In case you are counting, that's 11 hours from start to finish. ELEVEN hours for a trip that should have taken 5. I told Dad they could have come and gone back again in the same amount of time.

And so began our Thanksgiving Week. Three excited grandchildren. Two travel weary grandparents. And one momma who can't help wondering how much a plane ticket to that tropical island costs.

The Latest News on Emily

Hello all,

Just wanted to update you on Emily and let you know about the news that we have received today.

Yesterday, I talked to the cardiologist and here is the scoop in the plainest English I can muster): As Mike mentioned, they are not concerned about the valve in Emily's heart that did not close - the opening is not big enough to cause issues for her. However, when they did the echo-cardiogram they did discover something odd. It looks like she has a Partial Anomalous Pulmonary Venous Return. That means that one of the veins that is supposed to go from her lungs to the left side of her heart appears to be going to the right side of the heart instead. This causes the right side of her heart to work harder than it should and can cause it to get bigger than the left side. Many people live with this condition for a long time & don't even know that they have it. Since Emily's symptoms are not that serious they are not going to take action right now. She may need to have this corrected surgically as she gets older (maybe when she is 6 or 7). So in the meantime, Emily will have one more doctor to visit on a regular basis as the cardiologists keeps an eye on her heart to make sure things do not get worse.

The surgeon has checked on Emily and says that she looks good - she has been healing well from her g-tube & nissen surgery. He may change the tube that she has before we are sent home, but that is a minor thing and will not hold us up for long.

Now on to the good news...........

Emily will be able to go home on Monday as long as she continues to gain weight on Saturday & Sunday. Mike and I have talked about sneaking her some extra feedings just to make sure this happens! As of last night she weighed 10 lbs. 10 oz. - she put on weight for the first time in quite a few days. She has been losing weight since the surgery even though she has been eating more than 4 ounces at each feeding. They switched her formula to a soy formula. So far this seems to be helping with the weight gain & some other issues she has had (excessive gas & explosive diarrhea - YUCK!).

One thing that we do ask that you pray for (besides her gaining weight ), is her bottle feeding. Since the surgery she has a lot of excess secretions in her mouth & this makes her gag and retch. Because of the nissen she can not throw up, so when she gags it is pretty horrendous to watch. She does OK spitting it out or sometimes swallowing it, but it seems that she will have to learn how to handle this on a long term basis. We think this issue has caused her to lose interest in bottle feeding - she seems to think that she will gag whenever you stick the bottle in her mouth. So we need to work on this with her and the speech therapist. Our hope was that she would do well with the bottle feeding once she went home and right now we are not sure how this will go. So we ask that you pray about this. We are thankful that she can still get the nutrients that she needs through her g-tube & this won't affect her health, but it would be nice if she would eat from a bottle and eventually have the g-tube removed if that is what God wills.

Mike and I have talked a lot recently about how thankful we are. Spending time in the NICU helps us to realize that we really don't have it so bad (although it may sound that way to some of you). God has blessed us with a beautiful girl and we are so grateful. She has some challenges ahead of her, but they are nothing compared to the struggles a lot of others have. And we know that the Lord is with us every step of the way - that brings us such comfort!

We do thank you for all of the support, prayers and love that has been poured out on us. God has provided for us in every way possible. We will continue to keep you posted about Emily's progress.

In HIS strength,

Dawn