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.
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.
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.
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!!!
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!!!
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...
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!
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
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...
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!!!