Tuesday, December 29, 2009

Almost 2010

Today I'm packing up Christmas. Normally, I would wait until after New Year's Day to pack up Christmas, because I love the decorations and lights and cheer. Understandably we aren't too cheerful this year, so I'm packing up early. It's a good thing though, because our tree's dried up and Trey says it's a fire hazard. With packing up, it hit me today that a new year will be starting soon. My dad and I have said many times over the last few weeks that at least we know 2010 will have to be better than 2009, because nothing could be worse. However, that's not entirely true. 2009 has been the best and worst year of our lives. We got to experience the joy of having a child, but then had to endure losing that child much too soon. We got to meet new families that have become great friends of ours and have gotten to cheer them on through some amazing successes. Unfortunately, we've also had to sit with them through some terrible times. We have met and become friends with one of the most incredible teams of physicians and nurses that I have ever had the pleasure of encountering and have seen them at their finest. We also learned alot about what it means to be loved and cared for like we never have before. Overall, it was a year of ups and downs. According to which day you look at, there may have been more of one or the other...but overall I don't think I'd trade this year for the world. I think that the joy we experienced can't be replaced and that the sorrow and grief brought us closer as a family and closer to God.
So...what does the new year hold? We are currently waiting for our results from our genetic analysis to see if either of us is a "balanced carrier" for a Robertsonian Translocation. That's a big, fancy way of saying that Wesleigh Anne inherited Down Syndrome from one of us. A small percentage of children with translocations are "de novo" cases....meaning neither of their parents is a carrier. However, a large portion are inherited and 88% of those come from the mother. Not a very comforting thought for me. However, we have chosen not to find out who the carrier is...just that one of us is or hopefully that neither of us are. We can then make decisions about whether we will ever have children of our own or can adopt. That sounds like a funny way of saying it, because if we are lucky enough to adopt, I know that child will be loved as if or possibly more than our own. To that end, we are also beginning to work on a book to give mothers who are putting their children up for adoption to "sell our family" to them. We will tell about ourselves, why we want to adopt and how much we would love to have children. Hopefully we can be good salesmen and convince a mother that we would treat their child at least as good as anyone else (although I'm pretty sure they would be the most spoiled and loved child on the planet). Also, this year brings me going back to work at the hospital. I'm going back as a "flex" employee which means I set my own schedule and rotate through all of the critical care areas. This gives me a little more freedom to help Trey with the students and allows me to work day shift. Lastly, we are looking at some housing options here in Conway and hoping to get into a new house this Spring. That means we need a lot of people to pray really, really hard that someone in Rocky Mount will buy our house. If you live in RM or know someone moving to the area, it really is a great house!!! And, we did all of the remodeling work and put in new carpet and a new deck and new appliances....it really is a pretty good deal!!!

In closing, I hope that each of you and your families are incredibly blessed and happy in 2010. Each of you has been such a blessing to Trey and I through this most difficult year, and we hope that you reap great rewards for the love and kindness you have shown to us!

Tuesday, December 8, 2009

And so this is Christmas...

I apologize for taking so long to update. I find it harder to do some things that we did while Wesleigh Anne was alive than others. This is one of the tougher things. Perhaps that is because it requires thought, I'm not sure. Our goal most days is to be as busy as possible from the time we wake up until the time we pass out at night. So far, we've done a pretty good job accomplishing this goal. Trey has been keeping the youth busy and I'm still playing secretary at church. We also have put up the Christmas tree, decorated the house and gotten all of our Christmas shopping done. Christmas really doesn't feel the same this year. We were already making big plans for Christmas when Wesleigh Anne passed away and now the giving and receiving of Christmas doesn't seem so exciting. We are thrilled to get to spend some much needed time together and with our families as well as with many good friends. We are also excited to travel to MUSC next week to take presents that were collected by my women's group at church to the babies in the PCICU and 7C step-down units. The staff of these units were so good to us during Wesleigh Anne's illness that we are happy to be able to give back to them. We were looking forward to seeing some very good friends during this trip, the Wilsons. You may remember them as I have asked for prayer for their son Josiah many times. However, we are more excited to not be able to see them because they are going HOME!!! Please continue to pray for this amazing family as they make this transition. Erin (the mom) put it best when she said "it's not like we're taking home a healthy baby...we just got the right machines and learned enough to take care of him at home". I know they will face many challenges in the days ahead and I know they would appreciate all of the prayer you can give them. I don't have much to say today, mostly because we haven't been doing much out of the ordinary. It's amazing after a crisis how quickly you fall back into a routine because routines are comforting. All of the notes and phone calls from so many amazing friends have been comforting as well. We look forward to getting to see all of you sometime soon!!!

Friday, November 13, 2009

Putting one foot in front of the other...

Endurance. Tenacity. Perseverance. Steadfastness. Persistence. These are all words that you think of when you think of running a race or finishing a big project at work. They are all words that we hope would be used to describe us but in all honesty, deep down in the pit of our stomachs, we don't want to have to use. These are also all words that have been thrust into our lives in the last two weeks...although, I would use a much different term to describe the state that Trey and I find ourselves in...treading water. Existing. Our typical answer to daily inquiries into our existence is that we are hanging in there. We have even started to occasionally catch ourselves smiling. We know that God will heal these wounds, but like all deep cuts it will take some serious time. We have also started doing crazy (borderline insane) things. For example, tomorrow I am running an 8K. Perhaps I should rephrase that and say that I am WALKING an 8K. Really I am going to try to run...TRY!!! A lot of people are reading this and thinking "Good for you...going and doing something healthy". If you knew me at all, you would know that me going to this run tomorrow is almost suicidal. Seriously...I am not a runner. I have not trained. And it will be an absolute miracle of God if I even cross the finish line!!! Really it's not that bad, but I'm pretty sure I won't be able to run the whole thing.

That being said, we are doing things to try to return to life as we know it. I am going back to work in the next week or two on a part-time basis at Grand Strand. Trey is getting back into full swing of a busy youth schedule. And, we're even planning on going to the Clemson-Carolina game (it should be easy to get tickets if Carolina keeps losing!!!). We are frequently having dinner and lunch with friends and planning for the holidays. Our main goal is to be as busy as possible so that by the end of the day, we collapse. We have incredible families and absolutely amazing friends that have been diligent in checking on us and keeping us going throughout this pit. Many of you are in one of those groups and let me clearly say that there is no way...NO WAY...we would have survived this without you. We know that God can heal anything and we know that He sustains us through this time, but we also know that he is using many of you to do just that. So please know that we love you and that we owe you all more than we will ever be able to repay in kindness.

Friday, November 6, 2009

Wesleigh Anne's eulogy

First, I cannot begin to thank everyone for the amazing outpouring of love and support for us over the last week. Every day is still a struggle, but would be much, much more difficult without the support and prayers of so many! We will never be able to thank you all enough!

I've been told multiple times that I should post the eulogy that Trey and I wrote for Wesleigh Anne's funeral on Thursday. We appreciate everyone who made the drive to be with us and must tell those of you who didn't that you missed a beautiful tribute to a little princess and to the amazing God who loves her and us. Here is the eulogy...


Wesleigh Anne Greene was born on May 8, 2009 in Sumter, SC. It was the first
time we knew that Wesleigh Anne would refuse to follow our plan for her life. We
learned then, as we would be reminded many times after, that God had His own timing
and plan for our little girl. In stages, we learned His plan for our princess...first that she
had a congenital heart defect and later the Downs Syndrome. We learned that she
would have to be strong and fight, which she did for as long as she could. Every time
the doctors had a plan for our next step with Wesleigh Anne, we learned what it meant
to be in the minority of people who donʼt follow plans. We also learned that she would
bring great joy, which she continues to do today.

At home, we quickly learned that Wesleigh Anne enjoyed extremes. She always
wanted to bounce a little harder or swing a little higher. She loved to learn new things,
experience new foods and see new settings. She lit up when we read her books and
when she could see the pictures. She loved to watch her mobile and make faces at her
monkey. She never wanted to be alone and loved to be the center of attention, which
we were happy to oblige. She was always happiest when in our arms, especially when
there were several people watching her adorable expressions.

Wesleigh Anneʼs home away from home became the pediatric cardiology units of
MUSC. The nurses and physicians there became our second family and always went
out of their way to care for Wesleigh Anne and even more so for her parents. They
always took the time to make sure she looked perfect and to talk to us or answer just
one more question. For their amazing love and care we will always be thankful.

For the last several months, many of you have prayed for us and with us. Prayed
for a miracle. Do not be misled, this is Wesleigh Anneʼs miracle. She is strong now and
healthy, in the arms of a loving Father. There are no more surgeries ahead of her and
no more pain. We will anxiously await the day when we will see her and hold her again.
In her short time, she accomplished more than most of us will in a lifetime. She has
brought families together, strengthened our faith and made many who knew her and
knew of her appreciate every second that they have. She has made parents hug their
children a little longer each night and we are thankful for so many lessons that we all
learned from knowing and loving this amazing little girl.

We appreciate the incredible amount of love and support we have received
during this greatest of challenges in our lives. We are very fortunate to have so many to
love and care for us. We know the next several weeks and months will be difficult, but
we know that our God is faithful to carry us and to send loving family and friends to help
us along the way. Thank you for walking this journey with us. We love you all.

Tuesday, November 3, 2009

Arrangements

Here is the schedule of funeral arrangements for Wesleigh Anne.

Wednesday...Visitation at Goldfinch Funeral Home (Conway) from 5-7pm

Thursday...Funeral at North Conway Baptist Church 10:30 am
Private burial in Sumter

Thank you all for your tremendous support during this difficult time. We cannot express how loved we feel.

Monday, November 2, 2009

Saying Goodbye to Wesleigh Anne

Please let me begin by saying that we have been humbled and overwhelmed by the incredible outpouring of love after Wesleigh Anne's death and during her illness. I will attempt to go over the last 24 hours in hopes that people will understand our mindset and what happened.

Sunday morning at 6:30am we received a phone call that Wesleigh Anne coded again, requiring chest compressions and medication to bring her back. At this point, she was on quite a bit of medication to keep her going. She was tired. We then had a conversation with the attending, Dr Graham, about ECMO. ECMO would be very dangerous for Wesleigh Anne leading to surgery because she would have to be on blood thinners for ECMO and then she would bleed really easily going into surgery. Also, if Dr Bradley had felt good about fixing her valve, he would have done it two months ago when he was already in her chest. That left us with the options of a mechanical valve or a transplant. A mechanical valve would leave Wesleigh Anne on blood thinners for life. That means while learning to walk, ride a bike, rollerskate, etc. A transplant would require nothing short of a miracle for Wesleigh Anne to make it through. After much, much, long, hard conversation and much, much, long, hard prayer we decided that we would not send Wesleigh Anne to surgery again based on the pain that surgery causes versus the benefit that we felt she would gain. Therefore, we felt that our daughter was being tortured by being kept on paralytics and the breathing machine while coding every several hours. We also knew that Wesleigh Anne was tired and didn't have much fight left. We then made the terrible decision to remove Wesleigh Anne's life support, which we planned to do this morning (Monday). Well, God knew that we could not handle the responsibility of removing Wesleigh Anne's life support. And we know that we have a faithful, loving God who never gives us more than we can handle. So on Sunday evening we planned to spend the night in Wesleigh Anne's room, holding her and telling her how much we love her. While we were spending time with her, Wesleigh Anne's vital signs started trending downward. It became apparent that she was not going to make it through the night. We continued to hold her and love her until she passed peacefully in our arms, around 1:45 am. We stayed with her until around 3:30 am and then said our final goodbyes. We know that Wesleigh Anne is in a much, much better place and that she's healthy and whole now, breathing easily.

I would be lying to say that Trey and I are completely peaceful with this situation. We are absolutely broken. We miss our little angel more than we can possibly express and we know that this hasn't even fully hit us yet. We have fantastic support from our amazing families and our incredible church family and North Conway. We also have wonderful, wonderful friends who have been with us every step of the way. Thank you all for your tremendous support and for your continued prayers going forward.

As for arrangements, we plan for Wesleigh Anne's funeral to be on Thursday at North Conway Baptist Church. I will post the time when it is set. We will then go to Sumter for a family graveside service. As we know more, I will post it.

Sunday, November 1, 2009

Another rough morning

We again woke up to a call this morning at 6:30 am to say that the doctors in the unit were "coding" our daughter. This means that they were doing chest compressions and giving her medication to keep her going. We rushed to the hospital in time for her to be on the upswing and getting better. She is now "stable" in the ICU, meaning she is still paralyzed and sedated with medications and is on several medications to keep her blood pressure and heart rate steady. We are still waiting for Dr Bradley to get back in town and assemble a plan for Wesleigh Anne's third heart surgery. From talking to the cardiologists, Wesleigh Anne has not grown enough to fix her actual tricuspid valve. That leaves putting in a mechanical valve (far from ideal for an infant due to having to be on blood thinners for the rest of your life and the fact that the valve would not grow with her and would have to be continually replaced). The other option might possibly be transplant. Heart transplants in children do very well most of the time. However, in infants, it involves a long wait. It also involves us hoping for someone else's child to die...not a good thought for us. Ultimately we know that Dr. Bradley's plan doesn't matter. God's plan matters. Wesleigh Anne is appointed a time to die...whether that is a week from now, hours from now, or years from now. We know that Wesleigh Anne cannot continue on this route for much longer. We also know that we cannot continue on this route for much longer. But, we will wait for Dr Bradley and the doctors in the PCICU to have an idea or plan. And then we will have to decide...and that will probably be the hardest decision of our lives. Please, please pray for us and our sweet little girl.

Friday, October 30, 2009

Wesleigh Anne and the Terrible, Horrible, No Good, Very Bad Day...

Perhaps my thoughts yesterday were a foreshadowing of what was to come. We got a call this morning that Wesleigh Anne had a very, VERY bad night. Excuse a lot of medical terminology, but I'll try to explain as I go. Wesleigh Anne's oxygen sats dropped to 11 last night. For reference, "normal" sats are 90-100 and WA's "normal" is 75-85. Her blood pressure dropped into the 40's. Normal for a baby is in the 80s. They have been unable to find any signs of infection and so all of this badness is coming from her heart. This is also bad because her heart surgeon is "out of town" until Tuesday. We've been told that when he's out of town and one of his babies goes bad then he sometimes miraculously appears...so that's what we're hoping for. At this point they have Wesleigh Anne on paralyzing medicine so that they can totally control her breathing. On that medicine, her oxygen saturations are better. They also have her on dopamine for blood pressure. On that medicine, her blood pressure is okay. So, she's very, very sick but a little more stable at this point. If she gets unstable again, they would have to put her on a machine called an eccmo machine...what that does is bypass her heart and lungs. It is basically the same machine they put her on for surgery...the "bypass" machine. That would hopefully give them time to develop a plan and get her to surgery. For now, please pray. Pray for Wesleigh Anne, her doctors and for our strength and acceptance of whatever happens.

Thursday, October 29, 2009

Back in Charleston

I am very frustrated, scared and stressed as I write this post so I will keep it as short and happy as I can. Last night around 1 am, Wesleigh Anne began fussing and had a fever. She was working harder to breathe and requiring more oxygen. We gave her Tylenol and then Motrin when the Tylenol didn't work. By 4 am, we called Charleston. She had a 104.4 fever and didn't look good. We took her to the ER in Conway where she had a breathing tube placed and then was shipped to Charleston. Apparently, Wesleigh Anne likes Charleston. Currently, they are working on getting a central line to give medication through and trying to figure out what is going on.

All of this has prompted a very serious discussion between me, Trey and our cardiologist, Dr Forbus. Ya know, all of this time we have assumed that when we prayed for God's will in our lives that meant Wesleigh Anne getting better. After all, God's will couldn't be for our firstborn child to die, right?!?! Well, today it hit me. What if God's will isn't for Wesleigh Anne to live? What if all this time I've been assuming the wrong thing? Don't get me wrong, we're still fighting like crazy for Wesleigh Anne. We love her tremendously and want her to have a long, happy life. But, we also don't want to torture her. We don't want to poke and prod her every minute of every day of her life. So, I guess what this comes down to is whether the doctors think that long-term Wesleigh Anne's problems are fixable. Please pray for our doctors as they think about this answer. Also, pray for strength for us as we are on a downward spiral of this roller coaster. Pray for God's will in Wesleigh Anne's life...whatever that may mean. And lastly, pray for our acceptance and peace with whatever may come. Thank you all for loving us and praying for us through this crazy, crazy time.

Wednesday, October 28, 2009

Pictures from our last stay in Hotel MUSC



Sleepy Wesleigh Anne before her heart catheterization



In step-down the Monday after cath...the day RSV hit...



Yummy thumb...



The hid my thumb under this diaper, but that's okay I can suck on it too...



Daddy in his isolation gear with Wesleigh Anne



Mommy and Wesleigh Anne

Friday, October 23, 2009

Improvements

Wesleigh Anne has started looking better and better each day. We are weaning her off of the large amount of oxygen that she had due to the RSV and are seeing a decrease in the amount of secretions she has each day. Her doctors are thrilled with how she has handled the RSV and have said that it was much closer to how a "normal" baby with RSV would do rather than how they would normally see a "heart baby" do...so that's great!!! We will now go back to the original task of finding out why Wesleigh Anne has having breathing difficulty at home before the whole RSV episode. The thought towards the end of last week was that when she refluxed it decreased her oxygen saturations, however those numbers could have been skewed because of the mucous she was starting to produce due to the RSV. Therefore we will move to step-down today and go back to watching when her numbers increase and decrease to try to buy her time before her next heart surgery. We will also increase her diuretics and possibly revisit the idea of her going home with some oxygen. With her regular cardiologist back in town, we should be able to get a better idea of what is causing her breathing issues and what we can do to improve them. Please continue to pray for a quick answer so that we can come home and for protection for the other babies in the ICU and step-down that they will not get RSV.

Wednesday, October 21, 2009

Answers...FINALLY!!!

Yesterday afternoon, soon after I posted, we got many, much needed answers. Wesleigh Anne does NOT have the flu...however the doctors were correct about her having a virus. She has RSV (Respiratory Syncytial Virus)...a virus that typically causes cold-like symptoms. The stressful part about RSV is that in NORMAL infants it can cause shortness of breath, rapid breathing and increased mucous production. In Wesleigh Anne's case this can be pretty bad as her oxygen saturations were already not great and she was already breathing really fast. The good news is that it's not as bad as the flu and that we are already a few days through the two week course that the virus typically runs. We can't say for sure when she started the virus as she had a low-grade fever all weekend which could have been related to the virus or could have been related to the contrast she received in the heart catheterization. One thing's for sure...she had RSV on Monday which caused the 106 fever and we have to at least be on day three. According to the cardiologist, the next two to three days are when the "peak" of the virus should be...when WA will be the sickest. So, we are continuing to watch Wesleigh Anne very closely and manage her already increased secretions. Hopefully this will all be over soon and we can get back to helping Wesleigh Anne grow and learn. I should say that this infection has put us in a bit of a sticky situation. We were moved to the PCICU before we knew that Wesleigh Anne had RSV, which can be fairly contagious. Had they known at the time that we had RSV, we would not have been allowed to move to PC. Because we didn't know and because we desperately do not want to infect any of the other delicate babies, we are taking HUGE precautions. Anyone that enters Wesleigh Anne's room wears a gown, gloves and mask. When we come to the unit, we go straight to Wesleigh Anne's room and when we leave her room, we leave the hospital. Lastly, we have a one-to-one nurse who stays just outside of WA's door so that she does not spread germs around the unit. We are very appreciative of the staff allowing us to stay in PC so that Wesleigh Anne can be cared for by the best doctors and nurses in the hospital and we are trying to be very careful to take every precaution possible to ensure the safety of the other babies.

I may not have posted this yesterday, but on Friday I had a conversation with her heart surgeon about where we go from here. He says he needs at least 6 more months before he can fix Wesleigh Anne's tricuspid valve, which is our ultimate goal. Until then we will use home oxygen as needed and possibly some new medications to keep Wesleigh Anne's oxygenation at an acceptable level. This 6 months will make Wesleigh Anne around a year old when she has her next heart surgery and much, much bigger. Hopefully we can hold out until then and keep Wesleigh Anne healthy. I am praying that God will keep her stable for a year before we are forced to go back to surgery...that way she will have lots of time to grow and we know she will definitely be big enough for Dr Bradley to do what he needs to. Thank you all for continuing to pray for our family and especially for our little princess!!!

Tuesday, October 20, 2009

I apologize for not having a chance to update everyone sooner. I am not able to update the website from my cell phone and this is the first day I've had access to a computer. So, here's a quick recap of the weekend. Friday we had the catheterization, which showed nothing different or new with her heart function. There was no area of narrowing to open up. They then moved Wesleigh Anne to ICU for a brief time and on Saturday morning we moved to step-down. Wesleigh Anne had an uneventful weekend and it was looking like all we were going need was a procedure to reduce her reflux. Then Monday morning happened....around 6 am, Wesleigh Anne started fussing and was inconsolable. Her temperature had gone up to 106.4 and she was having a very hard time breathing. We got her calmed down and her fever down and then the decision was made that she could stay in step-down. We sent tests for flu and RSV and proceeded to wait and watch. Well, she did great for the rest of Monday. This morning around 6 am again, Wesleigh Anne did the same thing. She became inconsolable and her temp went up. She was also struggling to breathe again. The decision was then made to move her to ICU to be more closely monitored until we know exactly what's going on. The two big scenarios are that we are pretty sure Wesleigh Anne aspirated (food that she spit up when down in her lungs) and got pneumonia...there's also a strong chance that she has swine flu. They are testing for both and treating her as if she has both at this point. Please continue to pray for her healing. Thanks!!!

Wednesday, October 14, 2009

More ups and downs...


When Wesleigh Anne was first born, Trey and I really thought that her diagnosis of Down Syndrome was the worst of the news...after all, this is 2009!!! Surely, the doctors could fix a heart defect that was described to us as "best case scenario...as far as heart defects go". I mean, they fix these things a thousand times a year probably, right??? WRONG! We now know that the Down Syndrome is absolutely nothing to be concerned about compared to what we are dealing with with Wesleigh Anne's heart. After all, I can be persistent with Wesleigh Anne's education and therapy and help her have significant improvements in her development...I cannot fix her heart. And, while we are still confident that Dr Bradley (our surgeon), Dr Forbus (our cardiologist), Frances (our FAVORITE nurse practitioner) and all of the amazing nurses at MUSC are by far the best people to take care of Wesleigh Anne's issues, we are starting to accept that maybe there is not a "quick fix" for this problem. Okay...so we're beyond quick fix...we are really grasping at straws for any possible solution. I mean, nobody thinks that two heart surgeries and two catheterizations before 6 months old is ideal...in fact it's downright scary and frustrating. While I appreciate everyone applauding our strength in this terrible situation, I must admit that while Trey is every bit as strong as he always is and has been forced to be strong because he has still been in public every day; I have been allowed to retreat into solitude, anger and fear. Let me be clear, I am thankful for every day that we have with Wesleigh Anne and I recognize God's hand in keeping her with us for this long. My anger is not directed at God, but at the situation. I will admit that "why us" is a common theme now when walking out of the cardiologist's office although I am quick to say that while I feel a bit like a punching bag right now, I do not feel that anyone else deserves to go through this ordeal either. So, maybe these ramblings will let you a little more into my mental state right now...

That being said, all of this is even more at the forefront of my mind because we learned yesterday that Wesleigh Anne will have a heart catheterization on Friday. THIS Friday...when we had plans to finally do something fun and go to Clemson for the weekend with the youth group. While I do not think that going to a football game is more important than my daughter's health, it was the first time that we were going to leave Wesleigh Anne for more than a few hours (with her VERY capable grandparents) to experience life again. Anyway...that's beside the point now. In this catheterization, they will get some better images of the inside of Wesleigh Anne's heart and measurements of the different pressures. This will give them a better idea of exactly what is going on in there and what our next step will be. Also in the cath lab, they will attempt to expand one of the ends of Wesleigh Anne's new valve graft that was placed in August. So, think of the graft as a straw with the valve in the middle. One end of the straw has narrowed and they will use an angioplasty balloon (like they do in adults who have blockages) to expand the area. The hope is that by explanding that area, the valve may regain some function and Wesleigh Anne may become more stable. Who knows if it will work, but I guess we will see. All we can continue to do is pray for a miraculous healing for Wesleigh Anne, strength and wisdom for her team and comfort and peace for us and our families. So...that's what we're doing...

Wednesday, October 7, 2009

Firsts....



We are continually amazed at how quickly Wesleigh Anne develops and learns. We have had a few firsts this week that can't go without mention. The first of which is that today Wesleigh Anne did her first unprompted sign language. She signed "daddy" (the sign for this is taking your open hand and putting your thumb to your forehead) multiple times. At first her speech therapist and I did not believe that she knew what she was doing but we showed her the male doll and said daddy and she did the sign...multiple times!!! I guess that means Trey wins the battle for her first word even though I'm convinced she could still say "mama" first!!! She also signed "more" a couple of times when her toy stopped playing music. We again tested this by saying more when the toy stopped and Wesleigh Anne did the sign.

Also this week, Wesleigh Anne has started getting her first teeth. I say teeth because she has multiple tooth buds that we can feel. One tooth has even broken skin. Right now we are relying on Tylenol for pain control, but I am working on getting some teething biscuits and on asking her pediatrician about Orajel. Hopefully something will bring some relief because Wesleigh Anne is NOT a happy camper right now!!! But I will say it's a bit relieving to finally face a challenge that "normal" parents face...it makes us feel more like we have a real baby!!! Have a great rest of your week!

Monday, October 5, 2009

The Greene family gets fit...

Trey and I have been focused lately on losing weight and getting in shape. This is much easier for Trey than it is for me, but I'm still trying. We try to run (okay, so really it's little more than walking kinda fast) and do crunches, etc on our Wii Fit everyday along with eating healthy. As I thought last night about all of our exercise lately I realized that I haven't ever really answered one of the questions that people ask most about Wesleigh Anne...what do you actually "do" with a baby at therapy??? Well, we do a lot of things depending on which therapist we are seeing that day. Most of the things we do, you would do with any normal baby...we are just more intentional about it. For example, all babies do tummy time and all parents play with their baby's feet to try to make them aware of their body...we just do these things more frequently and we pay a lot more attention to how long it takes Wesleigh Anne to catch on. I've made a video with several of the "exercises" Wesleigh Anne does each day as part of her homework for her therapists. These are for occupational therapy (OT) and physical therapy (PT). Her speech therapist focuses on eating, which I've already posted video of. So this video is a bit long, but maybe it will help you understand what you actually do with babies at therapy...



We have really seen some great progress from Wesleigh Anne as a result of the therapy she does each week. For example, Wesleigh Anne will now routinely reach for toys that are in front of her (like on one of those baby gyms) and she's much happier on her left side. She also is doing exceptionally well eating off of a spoon and is making many more noises now. Lastly, her neck strength (while not nearly where it should be) is increasing rapidly. I'll keep you updated on how Wesleigh Anne is doing with her exercises and on how Trey and I are doing at losing weight! Hopefully by the end of the Fall we will all be in better shape!!! I hope you all have a wonderful beginning of your week...
Liz, Trey and Wesleigh Anne video

Thursday, October 1, 2009

The times they are a changin'...

Change seems to be a theme around our house lately. I guess the most obvious example today is that we are changing our blog. We have been very thankful for Caring Bridge and the opportunity it provided our family to share what was going on in the hospital during the summer, however it no longer meets our needs. We have maxed out the number of photos allowed and you can't post videos to Caring Bridge (or maybe I just don't know how...). We hope that so many of you who have kept up with us via Caring Bridge will now enjoy keeping up with us on this blog.

Also changing is the way Wesleigh Anne eats. Until the last couple of weeks, Wesleigh Anne's main source of nutrition has been a pump...not an exciting thought for a parent. However, Wesleigh Anne is now taking all of her formula by mouth and has started getting really good at eating off a spoon. Today we started green beans, which she seems to really enjoy. Here's some video to show you how good she's getting...



video




I know this isn't that exciting for most of you probably, but trust me...she's come a LONG way since we first introduced the spoon three weeks ago!!! Another semi-recent change is that Wesleigh Anne sleeps in her own crib. I'm not sure if this provides more or less sleep for me and Trey, but she seems to like it. She doesn't sleep through the entire night anymore (she wakes up around 3 am to eat) but that's a small price to pay to be rid of the silly feeding pump!!!
As Fall begins and the weather changes, we hope and pray that our routine will finally come. That we will be rid of the craziness of the Summer and have a more relaxing Fall of watching Wesleigh Anne grow and learn many new things. We will be sure to post pictures and updates on what's going on here and would love to hear what's happening with you and your families!!! Have a great weekend!!!

Liz, Trey and Wesleigh Anne

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