Avery's lungs continue to slowly fill with air. The doctors think that she is to the point where they need to be tested so over the next few days they are going to play a lot with the machines she's on to try to get her off the heart/lung bypass machine. This would be a huge step for her. She has been on this machine for four weeks now and it's taking a toll on her body so we are praying that her lungs will work well enough to be able to just be supported by a ventilator.
Avery had two pretty rough days on Sunday and Monday. I think the days are always harder when they are preceeded by a day of progress and hope. Saturday was one of the better days she had had in a long time so we were hoping for some good momentum. However, since then, Avery's blood pressure has been pretty low and it was a constant battle to keep her stabilized. They're not quite sure as to why her blood pressure had dropped so significantly, but part of the reason is probably because she is getting an infection. So once again, she is on a course of multiple antibiotics to make sure they catch whatever it is they might be chasing.
On a positive note, she had a much more stable day today and her lungs do continue to improve daily. While the improvement is still minimal, we're hopeful that they will continue moving in the right direction. However, when they do inflate, the bigger test is whether or not they will heal and have the function her body needs.
We continue to be so grateful for all those who pray for our little girl. We know our burden has been lightened because of the love and faith of our family and friends. We love you.
The goal for the past week has been to start to open Avery's lungs up and then see if they have the function they need. Slowly but surely, they do seem to be opening up. For the past few days it seems like a little more air has gotten into her lungs. As of today, it also seems like they have some of their function. While the function is still minimal, they do seem to be functioning. Once they start to work better, we hope to be able to get her off the heart/lung bypass machine. There's a fine line between giving her lungs the rest they need and trying to get off the bypass machine as soon as possible. The longer she is on this machine (which she has now been their longest patient on it), the riskier it is for her. We're grateful for the progress that she has made.
This week has been a big waiting game for us. The only thing that they can do for her lungs are let them open on her time, and progress has been very slow. Last time, they tried to force them open and the result was devastating so all we are really doing now is waiting. As I said before, Sunday was the first day that there seemed to be air in her right lung which was good news. For the next few days, we didn't see much of any change. In fact, they told us that they might even look a little worse. On Thursday, she was pretty unstable and they wondered if her pulmonary valve had clotted off again. Much to our relief, her valve was still wide open. Today, the x-ray shows that her left lung is starting to show signs of air in them. While the air is minimal, and her lungs are still collapsed and pretty stiff, at this point, anything that is not bad news is great news to us.
The highlights of the day come when we talk to her and she opens her eyes and moves her little fingers and toes. Every once in a while, she'll squeeze our finger and at that moment we could have no deeper love for her. We love our little girl more than we ever thought possible and continue to hope for the day we bring her home with us.
Yesterday morning the Pulmonologist (lung doctor) did another bronchoscopy and they found that a lot of the clots that were in Avery's lungs had been cleared-which they were happy about. Her lungs, however, still haven't seemed to improve from the other day. We continue to be hopeful that they will slowly continue to open. Her blood has also hemolyzed which means the red blood cells in her body are breaking down, and when we went into her room yesterday morning, she literally looked like the color of a beet. Needless to say, I was incredibly worried. I have never seen a human look that red before. So, they did a procedure where they pull the hemolyzed blood out, and put in new blood/plasma that hasn't been broken down yet. They have only done the procedure on about 4 kids before so I was a little nervous about how Avery would react, but she sailed through it like a champ. After the procedure was done, she looked a lot less red.
Today was a fairly quiet day for her. They're still really trying to open up her lungs. She's still on the lung/heart bypass machine and her kidneys are also still not working so she is on dialysis. We are told however, that kidneys usually recover. Right now our biggest concern is still with her lungs. Her heart actually seems to be working beautifully.
All I can say is that this little girl is not a quitter. She inspires us every day.
Yesterday was a pretty rough day for us. For the last couple of days, the doctors have been trying to slowly get air into Avery's lungs. However, they didn't seem to be opening up at all. Like I said before, they are in somewhat unchartered territory with Avery because a lot of these procedures they haven't done before. For example, our Cardiologist has never been involved in a case where they have just let the lungs collapse. Usually they leave at least one open. In Avery's case however, her lungs were in such bad condition that they had no other choice. The lung doctors said that once they were collapsed they would probably have a difficult time getting them open. So, as of yesterday, they didn't see any air in her lungs at all. Everyone was pretty concerned with that, because they were actually putting a lot of pressure in them expecting them to open.
So, yesterday afternoon, one of the lung doctors put a scope down her breating tube to try to see if they could find out if there was anything obstructing her airways or if they were opening at all. Come to find out, there were are two big blood clots at the opening of her lungs, and very likely all throughout her lungs. The doctor was actually able to suction one of the clots out. They then put her on a different kind of respirator that gently shakes her body hoping to break up the junk in her lungs and eventually be able to suction most of that out.
Today, to our surprise, her lungs have some air in them. They are also continuing to suction a bunch of the junk out of her lungs, which is good. While she is still far from being out of the woods, we were able to breathe a little easier today. We hope and pray that she is atleast facing in the right direction.
This has been the longest and hardest journey I have ever found myself on. There are definitely days where I ask my Heavenly Father a lot of questions, but at the end of the day, no matter how much I have cried, and no matter how alone I feel (and not for lack of support), I know that He blesses my family everyday. I know that He has never left us, and my greatest comfort comes in the knowledge that He loves Avery and that He is providing her with His divine comfort and peace.
Happy 1 month birthday baby girl.
The goal for the last couple of days has been to start to put a little pressure into Avery's lungs to try to help them open up. They are starting really slowly as to not cause anymore damage so this will be a very slow process. They have administered Surfactant (a protein that your body makes which helps your lungs to function properly) which will hopefully help the lungs to function once they are open. Many premature babies are born without Surfactant. Avery is in need of it because her lungs were so incredibly damaged that her body no longer has it nor is it producing it. We hope that her lungs will open and that the Surfactant helps them to function as they should. There is no doubt that she is a fighter. We pray that our Heavenly Father will continue to comfort and protect her little body. We love her so much.
We continue to be grateful to all those who have done so much to help us during this time. We truly feel blessed to have so many friends who care and love us. We are also grateful for our families and for the strength that we draw from them.
Yesterday was a fairly uneventful day, which at this point, is better news. She seems to be fairly stable (other than being on 100% life support). It does look like she is getting an infection but they don't know what yet. She has been on antibiotics since her first surgery to combat any infections that might come and they have continuously given her the medications so hopefully these will work on whatever it is. They are starting to move her lungs around a little bit just so they don't become a breeding ground for infection and they will probably start to put her back on a respirator in the next couple of days. For now, they continue to try to keep her stable and allow her lungs to rest.
Not too much new happened today. Avery stayed pretty stable throughout the day which is a welcomed change from the last few days. They are still trying to rest her lungs so they have let them collapse and she is getting all of her life support through the heart/lung bypass machine. Allowing her lungs to collapse and just be on the bypass machine is not something that they have done before but they don't see any other option. She is also on a dialysis machine which is helping her kidneys recover as well. She has 5-6 different specialty teams working on her condition including heart doctors, lung doctors, kidney doctors, blood doctors, infectious disease doctors, etc. I think she has baffled every doctor in the hospital (which is not always encouraging). They have never seen her condition in a full term newborn before so they are in somehwhat unchartered territory. Each day brings something new.
We feel so blessed and honored to be Avery's parents. While she's only been awake and aware for about 9 days of her life, we feel like we have come to know her spirit. It's amazing how much we feel like we know her. While the days are stressful beyond belief, she brings us so much peace. We are grateful for the precious time we are granted to be with her and continue to pray that we might be able to bring her home with us.
I've decided I'll try to post updates as often as I can about our sweet little Avery. Someday, after all this has passed, which will hopefully be after she comes home with us, I will tell her story from the beginning. However, at this point I don't think I can spare the time or tears. While I won't go into too much detail, I'm not going to say that we had a good day if we didn't. The purpose for this blog is not to worry or depress those who are intrested, but our situation at the moment does not have too many highlights yet. Our highlights do, however, come from our faith in a merciful and loving Heavenly Father who we know to be at the helm. We know that He is aware of us and that He is perfect, and consequently, His plan for Avery has been made perfectly. We believe in His power to heal her, and feel that He will, but if He decides to bring her home with Him, we know that she is still ours forever. We are so grateful that our family is eternal and are so comforted by the knowledge that whatever happens, she will be part of our family for the eternities.
To be honest, the last two days have been difficult. Yesterday, Dr. Raff (our incredible surgeon), was hoping to get her off the heart/lung bypass system which she has been on for about two weeks now and which she has been relying on for life support. Her heart actually seems to be working well. Her body was doing about 90% of the work by itself so it seemed like she should sail through without any problems getting her off. Minutes after they took her off, she was completely unstable. After looking into her chest, Dr. Raff noticed how bad her lungs looked. We knew that her lungs were getting bad, but apparently they are extremely sick and that is why she could not get off the bypass machine.
Until today, the bypass machine was connected to her heart with her chest open (there's a patch over the opeining in her chest, so no, you can't actually see her heart). They closed up her chest and connected the machine into a vein and artery in her neck in order to rest her lungs. Because her lungs are so diseased they want to try to rest them for at least another week and see if they improve at all. And until then, we pray that her lungs will recover.
We are so thankful to all of our friends and family who have shed so many tears and spent so much time on their knees in Avery's behalf. You will never know how much we love you. While we cry often for Avery, a good portion of our tears are shed because of the love and kindness we feel from all those who are supporting us. It is truly overhwhelming. We love you all so much. I will try to update on a daily basis but I make no promises.
