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,
PS Enjoy the picture of Emily on her first day at home.****************************************************
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,
Friday, November 30, 2007
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.
Friday, November 16, 2007
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,
Wednesday, November 14, 2007
I'm sure by now some of you are thinking that we are here taking care of Emily in her new home, but that is not the case. As a matter of fact, we don't know when (again) she will be able to come home.
She had surgery last Thursday and all went well. She was recovering great and they fed her through the tube earlier than anticipated. It was looking great for her to come home on Monday or Tuesday (today [Tuesday]). I sent Dawn to the hospital on Monday with directions to ask everyone what we need to do to make sure that she comes home tomorrow (which was today [Tuesday]). She went there anticipating Emily coming home either today or tomorrow and was hit with a blow that took her breath away. The doctor told her that Emily was breathing too fast and her heart rate was too high. She then proceeded to tell her that there may be complications with her heart and she may need heart surgery. Too say the least, this took us by surprise. They never mentioned any of this before...and we spent the weekend getting the house ready for her to come home!
A brief explanation...when the baby is in the womb, it gets the oxygen for its blood from the mother. Because of this, there is a valve in the heart to divert some of the blood away from the lungs and back into the aorta. After birth, this valve closes and the lungs do the job of getting the oxygen into the blood stream. In Emily's case, it was thought that this valve was not closed; therefore, her blood was not getting the oxygen it needed and so she was breathing heavy and it was causing her heart rate to go up.
Yesterday, the cardiologist did an ECHO and determined that the valve, although not completely closed was not a cause of concern. The heart surgery would have been to close this valve, so the threat of heart surgery has been eliminated! Today, they did an EKG and we are hoping that will give us (and them) a better understanding for the increased rate of breathing.
Needless to say, every day in the [Last Name Deleted for the sake of security] household is an adventure. We never know what to expect from one day to the next. The only thing that we are sure of, is that God is in control and He knows what He is doing. He is allowing these situations in our lives so that we will continually depend on Him...and we do!
So as for now, the G-tube is installed and she is eating fine. We are still trying to feed her with a bottle, but she has been a little temperamental with this. Some days she does good and other days, not so good. As I mentioned, we will know more tomorrow when we get the results of the EKG and we can get a better understanding of where we need to go from here.
Another concern has been her weight. She lost weight over the weekend, mostly because she had surgery and was eating far less than normal. Her food intake has increased and we are waiting to see if her weight also increases. It seems that the doctors think she is really cute (just like we do) and they don't want her to go home. She will get to come home some day, we just don't know when.
I know that it seems like we have a lot of drama here in the [Last name deleted] household...and we do; but I don't want to give the impression that we have it so bad. Dawn and I were talking about how blessed we really are. In the NICU there are babies that are far worse off than Emily and parents who never get to take their child home alive. We spend time with her every day and enjoy every minute that we get with her. There are some babies that have single mothers who have to work and never get to visit their child. There are many people who have it a lot worse than we do and we never want to forget that! We can get so caught up in the pity party that we are in, that we forget how good we have it.
Today, take a look at all the ways that God has blessed you and give Him thanks and praise for every little thing...even the next breath you take, for even that is a blessing from Him.
Have a great day because this is the day that the Lord has made, let us rejoice and be glad in it!
All for His glory,
Monday, November 12, 2007
I really like my doctor, though. She delivered Ben and saw me through to Ellie's birth (she wasn't on-call when we got to the hospital). I'm very sad that she has dropped obstetrics!
One of the reasons I like her is when we had our first appointment for Ben she asked if we would want all the blood tests they offer for various abnormalities. She even explained that more often than not the tests have false positives. Then she said if we would not "terminate" (medical speak for "kill my baby") based on the tests then there was no point in doing them. And that was the end of that. She never brought them up again. Much different from the doctor I had with Will who looked at me like I was crazy when I said I didn't want the tests.
Then there's the fact that she's "let" me try to VBAC. Twice. Not that she was terribly helpful during labor but she didn't fight me on it.
Today clinched my liking her. As we discussed the miscarriage she made a point in saying that it wasn't my fault. I didn't DO anything to cause it and there was nothing I could have done to have prevented it. I haven't wrestled with any of those issues but I thought it was great of her to say that anyway. She also made a point of saying that a miscarriage is a loss. She affirmed that this baby was important and losing the baby is a big deal. I SO appreciate that.
Dr. Manning and her staff were just the right amount of sympathetic and understanding without being overly so. At least it was the right amount for me. = )
She asked if I had called their office when I started spotting. I told her "no." I knew there was nothing she or the hospital could do for me so I didn't see the point in all the drama. I was better off at home in my own bed where I could actually rest. Not to mention a trip to the hospital would have cost me $100! Just for them to say "Sorry, go home and go to bed." No, thanks. I'll keep my money. Plus, there's the little issue of babysitters.
After my explanation she said I was "tough" and agreed that I did the best thing. That there was nothing she could have done for me. She also said one in four pregnancies end in miscarriage during the first trimester. Guess I'm right on for the statistic. She added that having a miscarriage does not increase your risk or likelihood of having another one.
What does all this rambling mean? I'm fine. My body worked the way it's supposed to under the circumstances. My future risks are no greater than they were before. And according to my doctor, I made good decisions. It's nice to hear a doctor say what I've been saying all week. Even if it did cost me $25. And after birthing 3 babies it's not like I had much dignity left anyway. = )
Sunday, November 11, 2007
If you visit christianbook.com/radio you will receive a discount code for 10% off your order. I'm not sure when this ends. I heard it on WARV, Providence, RI. They will ask about that.
ALSO, in MomSense magazine (MOPs) there is an ad for 10% off $35. The code is 251451AH. It expires December 16, 2007. Sadly, you can't use them both. I know. I tried. = )
Friday, November 9, 2007
"A word aptly spoken is like apples of gold in settings of silver." Proverbs 25:11.
I've been thinking a lot about words today. As you can imagine, I've been on the receiving end of a lot of words this week. Spoken words as well as emailed words. Some words concisely expressed my thoughts and emotions. Some words felt, well, empty. And still others expressed ideas I disagree with, which only resulted in annoyance and irritation.
I know the hearts behind each of these words meant well. Each speaker intended to ease my grief. She desired to offer comfort. She sought, through words, to diminish my pain. From the depths of her own experiences and beliefs she offered her words to me.
It is new for me to be on the receiving end of such an outpouring of love. Frankly, it feels awkward and strange. I am accustomed to being on the giving end. Which also feels awkward and uncomfortable, but in a different kind of way.
As I mentioned in a previous post, I have many friends and family members who have walked this path of miscarriage and grief ahead of me. I've thought about each one this week and wondered. Wondered if the words I offered during her time of mourning felt empty, or worse yet, painful. I'm sure to some they did. I prayed about this early in the week, asking God to forgive me for times when I spoke useless or painful words rather than just listening.
You know what? The Lord was gracious to me, as always. On Monday, a friend, who has walked this journey before me, emailed. She reminded me of a time after her own miscarriage when I simply listened to her, didn't try to make the pain go away, but just listened and prayed with her.
"Pleasant words are a honeycomb, sweet to the soul and healing to the bones." Proverbs 16:24. Just as my lack of words had been sweet to her soul, my friend's reminder felt sweet to my own soul.
My Lord reminded me of His own words today. And what could be better than the words of the One who is The Word of Life?
"Blessed are those who mourn, for they will be comforted." Matthew 5:4.
"Praise our God, O peoples, let the sound of his praise be heard; he has preserved our lives and kept our feet from slipping. For you, O God, tested us; you refined us like silver." Psalm 66:8-10.
"For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11.
"But blessed is the man who trusts in the Lord, whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit." Jeremiah 17:7-8.
I know you are probably getting sick of seeing my name pop up every day on your email Inbox, but here I am again.
I just wanted to give you a short note to let you know that Emily came through the surgery without any complications and she is doing well. As expected, she is in a lot of pain, but they are giving her some good drugs to help her with that. If all goes well, they will start feeding her today or tomorrow through the tube.
I will keep you updated as things change. God willing, she can be home early next week!
Thanks for all your continued prayers and emails,
All for His glory,
Thursday, November 8, 2007
Ellie has officially given up her morning nap. I've known the day was coming for about a month. This week I bit the bullet and have let her stay up. Mainly because no matter how long I left her in the crib she didn't sleep. She did, however, wail at the top of her lungs like someone was beating her. Since I don't want my neighbors to call Child Protective Services I surrendered and gave up her morning nap. But I moved everyone's afternoon nap up half an hour. Shh! Don't tell the boys about that.
Oh, and the wailing and gnashing of teeth? That's totally coming from me! 'Cause every momma knows she needs nap time more than the children do!!
Wednesday, November 7, 2007
Yesterday [Tuesday] was a day to meet with all Emily's doctors. We started with the Neurologist who went over her MRI and EEG with us. He didn't really have any new information for us. It is entirely a waiting game. There is obvious damage to certain parts of her brain and the EEG showed that there is still "opportunity" for seizures. He would not pinpoint anything! It is too early to speculate anything except that there will be some problems. Right now she is having trouble with the reflexes on half of her body. We will only learn what other problems there are as she reaches or doesn't reach certain milestones in her life. She will have many different therapists working with her, plus mom and dad, so we will do the best we can to make her as mobile as she can be.
After he left, we talked to the Doctor in charge of her case. The best news that we got from her is that there is nothing stopping her from coming home except the G-tube. She informed us of different agencies that are ready and willing to work with us to get her the care she needs to live the best life she can.
As she was leaving, the surgeon walked in. We were able to discuss the G-tube and what that entails and all the fun stuff that goes with it. They are also going to do a procedure that will tie some of her stomach around her esophagus to stop reflux from occurring. God willing, she will have the surgery tomorrow [Thursday]. We are unsure of a time, but we know tomorrow [Thursday]. THEN, depending on her recovery and how quickly we learn how to use the tube...she can come home! We are anticipating early next week! This is the one thing that we have been hoping and waiting for all along. She can finally have consistent care from people who know and love her.
As you can imagine, we are gearing up for sleepless nights and stressful days; but we don't have to travel back and forth to the hospital all day long. We know that our schedule will consist of doctors visits and therapy, but we will enjoy every
minute we get with our little one.
In the past month we have had the blessings of God rain down upon us and there is no way to thank you all. We have had someone lend us a car, many people cook meals for us, an outpouring of gifts given in the form of money and baby essentials and prayers too numerous to count. We never realized how loved we were until this happened. We are more amazed every day at how much people are willing to help us out...even people who don't know us. We know it is all from above, for we can do nothing good on our own accord, but only through the will of the Father.
We ask that you continue to pray for us and little Miss Emily as she has her surgery tomorrow and we prepare to take her home. The struggles for us are really just beginning. We have a lot to learn and look forward to each new challenge as an opportunity to share the love of Christ and give all the glory to God. He has blessed us with this child and we will make her a blessing to Him.
I have attached some of the latest pictures. She has many new outfits that she has to pose in, so mom and dad have been a little picture crazy; as is expected.
One last thing before I go. I graduated from seminary in May and have been unable to find a job in the area that I am searching. I am looking for an administrative position in a church or ministry. I am not gifted at preaching or teaching, although some might think these emails have been a little preachy. I have full confidence that God will provide for us financially in some way, shape or form, but we are unclear how this is going to happen. I am not asking you for a job, but I am asking that you pray specifically that God will guide us to where He needs me to be to serve Him best. He knows where He wants me to be, I just need to find where it is. Pray for wisdom and guidance on my part.
Thanks again for all your prayers and support,
We love you all!!!
PS Dawn has been reading the Gospel of John to Emily; how are you doing with that?
Tuesday, November 6, 2007
I'd forgotten about our abandoned snack plates until I heard a spoon clinking against a plate. Upon investigation of this sound, and others like "mmm" and "um-um-um," I found Ellie Belly standing in her brother's chair scraping the little bits of stuck chocolate off the plate and spooning them into her mouth. She smiled from ear-to-ear when she saw me. After she sufficiently cleaned Will's plate she climbed down from his chair, walked around the table, climbed into Ben's chair, and repeated the scraping and "um-ing" on Ben's plate.
I think the verdict is in: she's only 14 months old and already she loves her chocolate!
Monday, November 5, 2007
After three weeks, the reality of Emily’s condition is starting to sink in. Many of you have asked why or how this happened. The doctor’s have not been able to give us an answer, and in all likelihood, probably never will. There is an answer that may be hard for some of you to comprehend. Before time began, God decided that Emily Rose would be deprived of oxygen while in the womb and would be born with brain damage. Now, I am not going to pretend to understand why God chose this. The Sovereign God of the universe doesn’t exactly check with me before making decisions, but I have no doubt that this is exactly what God intended for Emily and for us as her parents.
Over the last 3 weeks I have wondered if I could really handle this. During my pregnancy, there were many times that I wondered if I could handle motherhood in general. Now that Emily is born and we know that there will be a long hard road ahead, I doubt myself even more. If we are all honest, there have been times in our lives when something came our way or happened to us that we thought we could not handle. This is no exception. But what I am reminded of time and time again is that I am not in this alone. Yes, I have Mike to help with parenting, and family and friends who are more than willing to help in any way that they can. But more than that, I have God by my side. Mike and I have seen some hard times in our lives and God has NEVER failed us – He is not about to start now. For some reason, God has chosen this for us. And He will equip us to handle it. He will give us the wisdom, strength and guidance that we need. We take great comfort in that.
This week, Mike and I decided to move forward with getting a g-tube for Emily. That is a feeding tube that will be inserted in her stomach. It is not the route that we wanted to go, but it will bring her home & at this point, that is what we want most. We want our little girl home with us! We can continue to work with her on bottle feedings and will do so. And if the Lord wills, she will eventually have her feeding tube removed. We would love that, but even if that never happens, we will continue to love Emily and love God for blessing us with her. We have really begun to face a lot of realities like that this week. Emily may never eat “normal” food or walk or do a lot of things that we all take for granted. Right now, we have no way to know what she will or will not do, but Mike and I are just trying to prepare for the hard road. We will love her no matter what she does or does not do. And more than that, we will continue to love God even if Emily doesn’t ever do the things we want her to do.
In her short life, Emily has been teaching us many things already. We have learned about sacrificial love – we are willing to do WHATEVER for our daughter – even if it is uncomfortable for us (and much of this has been). She has taught us to graciously receive from others as many have rallied around us in support (we cannot thank you enough for that!). She has also taught us about dependence. In today’s world, we learn to be strong and independent – we learn that we don’t need anyone. Well, Emily has taught us that we need to completely depend on God for EVERYTHING. Mike and I don’t know how to care for a special girl like Emily – we don’t even know where to begin. But that is exactly where God wants us – relying on Him for ALL of our needs.
So at this time when we are filled with doubts and fears about what the future holds, we continue to hang onto God with all our might. He will get us through whatever comes our way. He will give us wisdom when we need it, He will be our strength when we have none of our own. God is bigger than any problem we will face (Ephesians 3:20-21: Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.). He created Emily and knows exactly what she needs even if we don’t. He is Jehovah-jireh – the Great Provider! Please continue to pray for Emily and for us – there is INCREDIBLE power in prayer!
I know that you already received an email from Dawn earlier, but we just got home from the hospital and today was a different day! We have been praising Jesus through this storm and today we had a break in the clouds; so we must praise Him for that also.
We arrived at the hospital at around 1:30 and Emily was sound asleep. I picked her up as I usually do and laid her in my lap for a nice long while. (She does love being in her dad's arms!) She was quite content until it was time for dinner. We are learning how to deal with the nurses and told her what she needs to do for us. She complied and everything went smoothly. Emily has never been one you can call a "happy" baby. When she is awake she is always on the verge of tears. Today was a different day, though. She woke up and I changed her diaper and got her ready for her bottle. The nurse usually takes her temperature, measures her head and belly and gets her so upset that she won't eat through a bottle. The nurse that was with us today, said she would wait until she ate before she did the work up.
Emily was calm, so we decided to try to bottle feed her. We have not been successful thus far in our attempts, although the speech therapist has been successful many times. I tried for a little while and then came success. She started to drink from the bottle! Usually she tries for a little while and then gets very upset and cries until we all just give up. Today, she was calm and cool and took a little and then just looked at me very peacefully before trying again. She took about 10cc before she was just not interested any more. The biggest thing is that she never got upset. On a normal day she would scream and cry until we fed her though the tube.
After her feeding, she was tired and went off to sleep while Dawn and I went to dinner. We came back and she was still sleeping. Dawn held her for a while until it was time for her next feeding. Before her feeding, I got to give her a bath. I got her squeaky clean and she only complained when I had to turn her over to wash her back. We got some good pictures of her with her head full of shampoo. She is just so cute!
After bath time, it was dinner time; this time Dawn was able to get her to take 20cc (her meal consists of 80cc) and we could see a light at the end of the tunnel. When we spend a lot of time with her we can get a better feel of what she likes and what she doesn't like. We are slowly learning her needs and what works best for her. We actually feel like parents!
As I mentioned before; we praise God for every minute we get with our baby girl, but today we rejoice that God allowed us to see a different side of Emily. She was alert and fun to be around. For that I praise Jesus!
I just want you all to know that as Dawn wrote this morning, she will still be getting a G-tube next week and hopefully be coming home by the end of the week. We look forward to this day with great anticipation and also great fear. We know God will supply us with everything we need, but the thought of taking care of her 24/7 is kind of scary.
For all those who are anxiously awaiting her visit to Rhode Island this Christmas, we regret to inform you that we will be spending Christmas here in KY. There are just too many variables to traveling with Emily that we don't want to risk. She is our main concern and her health comes before anything else.
There are two reasons for sending this message today. The first is to praise God for the progress that He is making in Emily's life and the joy that we got to experience as parents tonight; second, to share with our family and friends that God hears your prayers and is watching over Emily in a special way.
Please continue to keep the faith and keep on praying. We are continually getting emails and cards from people who are inspired by our faith and are growing in their faith as well. It is my hope and prayer that the God that I love and serve will continue to open the eyes of the hearts of all who read this email and that His name would be glorified and magnified.
For all those who are reading this who do not have a personal relationship with Jesus Christ, I ask you to read the Gospel of John. We all have a Bible, but how many of us have not read the whole book of John? The Truth of God's Word will inspire you more than I ever could. If you have children, I recommend that you read it aloud to them as well. Reading the Bible is NEVER a waste of time. Try it once and you will see.
That is my lecture for today. You still need to go to church though, this doesn't count as a sermon.
As I close, I would like to tell you all again how much we appreciate all the emails
and letters and genuine love that has been poured out to us these past three weeks. We have a Great God and He has blessed us beyond measure.
I love you all!!
Praising Jesus in the Storm,
Sunday, November 4, 2007
Wednesday night I heard the still small voice. I couldn't get to sleep (I'm usually asleep before my head hits the pillow) and as I lay there I found myself praying about the new baby. I knew something wasn't right. I can't explain it. I just knew.
Thursday & Friday afternoons I experienced some very minor spotting. In three pregnancies I have never spotted during the first and second trimesters. Never. I hoped there was a first time for everything and this would be nothing.
God had a different plan for us than the one I hoped for. Saturday morning began with cramping and bleeding and continued throughout the day. By Saturday night I had no doubts that this pregnancy was ending. I think the worst of the physical symptoms of the miscarriage are over now.
We are naturally disappointed and grieving the loss of this baby. But we believe God has a plan, is good, and loves us with immeasurable love even when our circumstances are incomprehensible.
It's kind of ironic that I've had a post stewing in my head for the last few weeks regarding infertility and miscarriages. I have watched one dear family member walk through years of trying to conceive, several failed rounds of artificial insemination, one failed round of in vitro fertilization. A close friend experienced an ectopic pregnancy. Two other friends each experienced an unexplained miscarriage, and another dear one experienced 2 miscarriages and a molar pregnancy.
Through those same five years I have conceived, carried and birthed three babies without a hitch. God has taught me through the experiences of others and myself that HE alone controls life. As Job says, "The Lord giveth. The Lord taketh away. Blessed be the name of the Lord."
I have to say this whole experience has been very surreal. I was just adjusting to the idea of being pregnant again and now it's over. Now I'm adjusting to the idea that I have had a miscarriage.
We don't know if God plans for us to have more children, by birth or adoption. We are content with the three He has given us but we will also gladly take any more He wants to send our way. Regardless of what the future holds we stand firm in our belief, faith, and trust in the Lord our God.
"Blessed are those who trust in the Lord and have made the Lord their hope and confidence. They are like trees planted along a riverbank, with roots that reach deep into the water. Such trees are not bothered by the heat or worried by long months of drought. Their leaves stay green, and they never stop producing fruit." Jeremiah 17:7-8. NLT.