Monday, March 26, 2012

Requesting Prayer Pictures for Addie's May 8 transplant!

6 weeks from today Addison will be going through the biggest surgery of her life. 6 weeks from today, my baby and I will both be in adjoining operating rooms involved in a double surgery that all up will probably take close to 10 hours. 6 weeks from today my mom and dad will sit in an unfamiliar waiting room in California with their daughter and granddaughter in surgery while my husband sits at home in Texas with our baby boy waiting to hear his wife and daughter are through surgery. 6 weeks from today we will be at Stanford University because the surgery is so complicated and so scary that no hospitals in Texas feel prepared to do it. Most importantly though, 6 weeks from today Addison will be given more than my kidney- she will be given a future and a life free from daily hospital trips. I don't think I've ever felt the strong combination of dread, excitement, fear and hope all for one day quite like I do when I think about May 8.

Addison is the most delightful baby. We walk into a store and she starts waving and smiling at everyone she sees. She gives hugs and kisses and breaks into the biggest toothiest smile when she sees someone she loves. She is stubborn and smart and creative and funny. She rips her glasses and hearing aids off her face with a vengeance, she pulls her brothers socks off and tries to bite his toes, she knows who she can get away with things with and plays everyone. She is equal parts adorableness and pure trouble. Basically she is a typical one year old. Only her life has been anything but typical. Addie spent the first 8 months of her life in the NICU. She was diagnosed with Congenital Nephrotic Syndrome when she was 3 weeks old and developed a life threatening Strep B infection that week that earned her and her brother an ambulance trip to the big hospital in the city. At 6 months old, her kidneys had both been removed and she started dialysis. One week into dialysis, Addie ended up in congestive heart failure from fluid overload and gave her family the biggest scare of their lives. After 3 blissful months home on peritoneal dialysis, Addie ended up in the PICU with dialysis fluid in her chest. Three weeks in the hospital later, Addie comes home on Hemodialysis, something we had hoped to avoid. 2 months on Hemo and all is well until a simple g-tube surgery causes Addie to become very hypertensive. 4 days in the ICU, a week in the hospital and Addie came home on 4 blood pressure meds around the clock.

Addie is awesome at so many things. I mean I know I'm biased but I think she is brilliant and totally rocks at stacking cups and her helicopter toy. She does not, however, rock at dialysis. She manages to find complications the doctors did not even know existed. For that reason and because of what a difficult few months of dialysis she has had, we strongly believe this transplant is the absolute best thing for Addie. We prayed fervently before making the decision to take Addie to California to get this surgery. We all believe wholeheartedly that God is calling us to do this for Addie. My mom says God calls us to radical faith and heading off to San Francisco for the summer for a surgery with plenty of risks is definitely radical. It's scary, it's huge and it's not going to be easy for any of us. But we know it's where we are meant to be.

So on May 6, my mom, my dad and Addie and I will leave for her May 8 transplant (we are going in a few weeks for a 3 day pre-op trip also). Al's parents will arrive here and stay with him and Max. We have not yet decided if Max and Al will join us at some point in California. It depends on a lot of factors and it is just too soon after Max coming home from the hospital to tell if he is up for that or not.

One week after I found out about their kidney condition I asked my OB to look up my blood type and found out I was a match. I knew that day my kidney wasn't mine anymore, that I was just housing it until one of them was ready. The way I see it, she stole my heart, inhabited and forever changed my body- she may as well take my kidney as well. It's no less hers than the rest of me. The fact that I'm a match and can give it to her is the second greatest privilege of my life after having carried them for 7 months. I am nothing but thrilled to be giving it to her.

I have decided that over the next 6 weeks while we prepare for this huge day, I want to do something for Addie, for now but even more, for her in the future. I know there are hundreds of people praying for her and I want to ask ALL of you who are praying or sending Addie love and well wishes for a HUGE favor- I want to make a photo wall and photo book of prayers for Addie for May 8. My dream is to cover Addie's hospital room walls with photos of people and their prayers so that every person who walks in Addie's hospital room will be blown away by the love and prayer being sent for this little girl. My prayer is that her room would be covered in prayer, literally. That when my mom sits in Addie's room after surgery while I'm off in my separate room recovering for a couple of days that she will feel surrounded my the faces of those praying for Addie. And that as Addie grows up, she can look back and see just how loved she is and how covered in prayer she was on that monumental day in her life. So here is my plea- I want a photo of each person praying for Addie holding a whiteboard, poster or piece of paper with a prayer, a hope, a wish, a memory, a Bible verse, or simply an ‘I love you’ or ‘I’m thinking of you’ for Addie on it. I am wanting you to send just the photo of the message, not the actual poster! My friends have so generously agreed to model for you (with names and messages made by me of course!)...

What I'm hoping is that all of you who are reading will send me your picture and ALSO pass this request to every person you have ever told about Max and Addie and ask them for a photo as well. I would love to get photos from people all over the world who we may not have seen in years and who we may have never even met or heard of. I get told often by people 'my parents/friends/co-workers are praying for your babies too' so if you have people who ask you about the babies, please grab them a sheet of paper and grab your camera/phone and send me their pic too! If you don't mind linking things, I'd LOVE for you to link this to your Facebook page and ask your facebook world to join us in praying for Addie and ask them to send me a picture and a prayer for Addie for her big day. Feel free to print this and share it at work or with neighbors. We would love to have hundreds of people thinking about Addie and praying for her in 6 weeks.

Here is the thing- the most important thing is just to know that people are praying so it doesn't have to be a fancy poster. I made a whiteboard for her that I'll carry with me so you can write her a message on that if you see me. But, seriously a sheet of white paper with a quick note on it is fantastic. I have perfectionist tendencies and could totally see myself deciding I needed to make the world's most beautiful poster and then keep putting it off because I didn't have 3 shades of pink glitter and then spend hours trying to make my note rhyme, only to end up not getting it done because I never had many hours to do it perfectly! So please know we just want to know you're praying and so simple messages are awesome!

So grab a whiteboard for you and your family and friends, or decorate a poster or jot something on paper and have someone snap a picture of you. Then ask your family and friends to do the same! Group photos are good but we'd prefer individual ones just for the effect of covering Addie's walls in photos that I'm going for. If you have an adorable baby or child, feel free to write a note for them and send me their picture too! One request is that I would love you to include: your name, where you live and how you know Addie (or know about us). We'd love to hear from people who are friends of acquaintances or people who stumbled upon this blog! When we realize how many people we don’t even know there are praying for us, it blesses us so much so this is not a favor for just our friends but for everyone!

As we get closer, I'll share some really specific prayer requests for May 8 and the days that follow. Our main general requests are for no complications in surgery, that she will quickly come off the ventilator, that her blood pressure will be stable, that my kidney will very quickly start making urine for Addie and most importantly that her body will NOT reject or damage the new kidney. And of course all the usual things just that Addie will be strong and happy and experience minimal pain, fear or confusion during this time.

So snap away with a camara or phone and then email them to me at or text your photo directly from your phone to me at 936 689 7238. Start sending pictures right away and I'll start printing them and making her keepsake book and spread the word for people to be praying for sweet Addie leading up to, on and after May 8. (Oh and if you do not want your photo here or on Facebook, just let me know because I will probably post some!)

Thursday, March 22, 2012

New Hope for Max

I believe that you can endure a large amount of stress, sadness and disappointment as long as you have a strong hope for the future. A belief that things will get better and that what lies ahead is going to be filled with joy and happiness sustains you when the current day is serving up its fair share of difficulties. And while hope is something that we will never lose and that our faith helps us sustain against the odds, there have been many times when the doctors have given us very little to hope for. The past month has been difficult as we had Max in the hospital all month, Addie's unexpected ICU stay and lingering blood pressure issues and the news that Max's brain had deteriorated. While we definitely did not lose our hope, there were days when it seemed somewhat distant and unfulfilling. With that in mind, it is a great joy to write this post and tell you about all the hope we have been given in the last week for our precious Max. (We also have a confirmed transplant date and lots of hope for Addie but I'll write another post on our transplant plans soon!).

After almost 4 weeks on Hemo, we transitioned Max back to his peritoneal dialysis so he could go back on his home machine. Max was never able to go home on Hemo for some complicated logistical reasons but he actually did really well on it. It was so encourgaing to see him handle both surgery and Hemo so well given it is a stressful procedure and we had been extensively warned of all the things that could go wrong. Max actually had the best month in terms of lack of blue episodes, interactions and general happiness that he has had in months. Not having reflux and a painful hernia have made him a very happy baby and made us very happy parents. And on Monday he was able to come home and so far has settled back in to home life and his machine very smoothly.
While in the hospital Max had a ridiculous number of tests run in hopes of understanding more about what is going on with Max neurologically. It's been this crazy emotional rollercoaster because 6 weeks ago the doctors told us they thought he likely had a progressive genetic condition that would cause both mental and physical deterioration and a reduced life expectancy. Then they got all these genetic tests back and decided he probably did not have a genetic condition which was good news. Then we got the MRI that showed his brain was smaller which was very bad news and made us think it was progressive again. Then they said it might stop shrinking, then they challenged whether that diagnosis even matched. We needed to have a proper meeting with neurology and nephrology (brain and kidney) to put all the pieces together with what we know and work out what it all means. After the last few difficult meetings, I was thoroughly dreading the meeting.

However, the meeting was actually much better than we had expected. An unexpected blessing came from Max's 4 weeks in the hospital. It gave his kidney Dr S a chance to really bond with Max and observe him more and she came to the meeting with much more hope and determination to help Max. It changed the whole tone of meeting to have her advocating for him and believing in what he may be able to do and clearly expressing to our neurologist that Max does have a quality of life (something we obviously knew but to have a doctor say it to the other doctor made a huge difference). We left the meeting confident that Dr S would fight for Max and for us and to ensure we make all the right choices for him. Most excitedly it means that Dr S thinks we should plan to transplant Max at some point. Although that had, of course, always been our plan, the meetings we have had these past two months had started to make that seem not possible and we were very discouraged that Max may not get to transplant. We will be waiting at least another year and probably longer because transplant does pose a lot of risks to Max but at this point, it is our plan to give Max Al's kidney and we have a doctor who plans to support us in that.

The other significant thing that came from the meeting is that the neurologist does not believe Max's brain cells are not actually dying but rather not growing or developing. This gives the appearance that Max's brain is shrinking since his head and some parts of his brain are continuing to grow. But in reality he does not actually have less brain matter, he just doesn't have more when he should. And while the fact that his brain is not growing is not good news, it is better than his brain actually shrinking. Especially because while the neurologist does not necessarily think Max will gain a lot of skills, he also does not expect Max to lose the skills he has. Which means Max will continue to recognize us, smile his infectious huge smile, coo and express himself and enjoy music and toys. And for us that is huge. And it fills us for hope that Max's life will be filled with happiness and a love for us and an awareness that he is fiercely loved by us. And while I will admit that hearing the doctors predict that Max is likely to never walk or talk was very sad, we believe that his capacity for love and joy is the most important thing so we rejoice that God has given these gifts to Max in abundance.

The neurologist also admitted he's been wrong before and that innovative therapies can make a big difference with kids like Max. Max loves music therapy and occupational therapy and we are going to keep getting him lots of therapy and keep training his brain to find new pathways and new ways of doing things. So we walked away from yesterday with a lot of Hope- hope for a kidney for Max and freedom from his machine in time, hope that he will continue to know, love and interact with us and hope that with a lot of therapy he may develop more skills. He will always be medically fragile and there always be lots of reasons to worry about Max but we are choosing to live by hope for him and we feel blessed that his doctor S shares hope for him and that we are fighting for the very best quality of life for him!

Thank you so much to everyone who has been praying for Max, coming to see Max, sharing in our sadness and joys over the past couple of months. We have felt very supported and we know that Max is loved by many many people including many who have not even met him! We know that there will be highs and lows and scary times in our journey with little man Max and we are grateful that we have our families and friends who are walking alongside us every step of the way.

Friday, March 2, 2012

Max's Brain

I have been really glad I started this blog. It has been such a great way to deliver news to people and also to feel supported by so many people. There are still posts, though, that I don't like to write. It's definitely easier to share hard information in one place than go through it with everyone individually so I'm glad I have a blog for news both good and bad. But I still find it hard to actually sit down and type out bad news. So forgive me for my delay in telling you about Max's MRI results. We got the results back from Max's MRI on Thursday and his brain is 'worse' than it was 6 weeks ago. It seems as though his brain is 'shrinking' or that the cells in his brain are progressively dying off. They expect this will continue to happen at least for a while still. At some point (maybe 2 years old?) it may/should stop. And what damage it does to Max between now and then we just don't know.

Why did this happen? Well we don't know for sure but I can tell you one of neurologists opinions:
When Max was 3 days old he had a pulmonary hemmorage or lung bleed. It was on Christmas Day. It was the same day Addison started breathing completely on her own without any oxygen or support. It was the first day I ever held either of my babies. It was the day I was discharged from the hospital. We went to my parents' house and opened presents and ate dinner that evening. Then we headed into the hospital to see the itty bitty not even 4lb babies. When we got there and went back, Max was in distress. He wasn't breathing correctly and had a horrible painful look on his face and blood was coming up his breathing tube. It was, up until that point, the most terrifying thing I had ever seen. I remember feeling that day that I understood the intensity of the love of motherhood in the joy I felt holding Addie in my arms and the terror I felt watching Max struggle.

The nurse practioner talked to us and I cried a lot and they got Max stable seemingly pretty quickly. No one explained things in the level of detail then and there that they would later to us so I don't know all the details of what ventilator settings changed etc. I just know he stabilized and I felt better. I also know they did a head ultrasound and didn't see any bleeds the next day and that was good news. And that they told us Max was in 'time out' for the next couple of days requiring a lot of oxygen and sedation and not being able to handle any holding or handling. Then Max got better and we got to hold him on New Year's Eve and then began all the mystery of Max like his low breathing rate and tight muscle tone and then that led to all the testing which accidently uncovered their kidney disorder and I suppose the rest is history...

And so I moved on from that Christmas Day experience. So many seemingly bigger or more chronic things came up and it stopped being the most traumatic thing I'd seen after all the times I've witnessed my babies stop breathing or end up on ventilators now. In fact if someone were to ask me about their medical history, I wouldn't even mention the lung bleed because I didn't think it was that significant.

Turns out it might have been very significant because that lung bleed might have been the moment that Max's brain started shrinking.

We don't know that for sure and most likely we will never know for sure. One neurologist seemed reasonably confident that oxygen deprivation during that lung bleed when he was so premature and fragile was what caused the start of progressive brain atrophy or cell death. Any time the brain is deprived of oxygen for any significant amount of time, damage is down. depending on how long the brain is deprived and the age of the person and the reason for the damage, the deprivation can cause a small and localised or specific area of damage to the brain. Other times it can cause a 'global' damage meaning the whole brain is impacted. This is what we've seen in Max and is obviously a harder situation to predict the true effect of. Sometimes the damage will happen briskly and all at once and you can immediately see what has happened. Other times a few cells die at the time but it sets off a domino effect whereby more and more cells will die from that point onwards. How fast they die and for how long they continue dying, well it depends on the person so it's impossible to know. It seems that Max's brain experienced global and gradual, progressive cell death.

However, our other main neurologist seems less accepting of this view that the shrinking is caused by the oxygen deprivation from the lung bleed and is still looking for a more genetic explanation. And so we've been running a ridiculous number of tests on Max. In one day, he had a skeletal or bone survey, an opthamological workup, blood cultures and the start of his 23 hour EEG, all in between Hemo of course! So far we haven't found anything leading us towards a genetic or alternative diagnosis. So unless we can find an alternative diagnosis, I think we will end up with cerebral atrophy due to neonatal anoxic brain injury (or brain cell death following a period of no oxygen to the brain as a little baby).

What all the doctors do agree on though is that every one of his MRIs shows a smaller brain volume than the MRI before. And of all the body parts you could have shrink, the brain might be the worst one. Having said that, the brain is a very complicated organ and it also is a heavily localized organ whereby certain parts of the brain have been allocated for certain functions. And interestingly almost all of your 'survival' functions have been stored in an area called the brainstem at the bottom of the brain. On top of the brainstem is the cerebrum which is responsible for actually Living now that your brainstem kept you Alive. And within the cerebrum there are four lobes which each have their own roles. This is a very simplified explanation BUT at the back of the brain you have the occipital lobe for vision. On the sides you have the Parietal Lobe for sensation and the Temporal Lobe for memory and emotion and at the front of the brain where your forehead is you have your Frontal Lobe for movement and problem solving. At the moment we see no indication that Max's brainstem is affected. I say that with no real confidence because the neurologist did ponder aloud with us whether it looked a bit thin but I don't think we think his brainstem is shrinking. Which for Max's survival is really very important. The atrophy seems to be in his cerebrum and most pronounced in his frontal lobe. Which would definitely explain his inability to produce much voluntary movement.

So in terms of what the future holds for Max, it is hard to know because we don't know how much his brain will suffer in the next year or so (there is research to suggest progressive atrophy will slow down or stop after approximately two years after the injury). We don't have any reason to think it is an immediately life threatening situation. There are certain skills however that were he to lose, it could lead to a worse prognosis, such as losing his ability to swallow secretions. We expect Max to have lingering serious disabilities but again, we don't know at this point what that will look like. We know that although his MRI was worse within 6 weeks (which is in itself a bad sign to see visible damage in a relatively short amount of time), BUT we did not see any obvious differences in his behavior in the past 6 weeks. So the correlation between what is going on in his brain and how it will affect Max's outward behavior is far from clear.
Needless to say, we are greatly saddened by this news. We were very much hoping to hear that Max's brain was stable between the two MRIs and we feel very troubled by the idea of his brain shrinking instead of growing. I don't think there are any words that could properly express how we feel. I don't really think it has truly 'sunk in' and while there are moments where it feels real and acutely painful, no doubt the denial and uncertainty are protecting us to some extent.

In terms of what we actually DO now, well, not terribly much in that there is no real treatment for this. Which is hard for us. I feel like surely there should be some brain dialysis we could be getting or a brain transplant we could be working towards. We are so used to dealing with their kidney issues that involve so many treatments that the idea of there not being treatment with this is difficult. After these rounds of tests are done, life will just go back to normal and neurology probably won't see Max very often. (Max will be in the hospital for a couple more weeks but that is for inpatient Hemo treatments and not because of this neurological diagnosis.) But, we keep getting him therapy and just keep trying to teach his muscles how to move. Max is social and interacts with us. He tracks things visually. He, for the main part, is very medically stable despite complicated kidney issues. He is incredibly sweet, loves to be held and smiles so big his whole mouth opens. He is adorable and loved and there are many wonderful strengths of Max's we will be building up and working with. Although he is not currently able to produce a lot of movement, the body can be trained and we'll keep working on head control and reaching. We are also ordering a 'Kid Cart' for him on Monday which is like a 'medical stroller' or really, a baby wheelchair. I remember not too long ago when we started questioning what was going on with Max feeling incredibly daunted by the idea of wheelchairs and all those things. But it'll be really good for Max and we feel happier than we thought we would with this step for him.

The most important thing to pray for Max is that God will protect his brain and keep his hand over the parts that are most important for Max. We are doing this EEG brainwave study to test for seizures. We have not seen any indication of them but absence seizures can actually go undetected. We don't expect they'll find any now but we would ask you to pray every day that God will protect Max's brain from developing seizures. Another concern is with his swallowing. Max has never had a strong swallow and when he bottle fed we had to thicken his feed. He now has tube feeds and his new procedure to eliminate vomiting. His swallow may not be strong but it is definitely still working now. We are praying that God protects his swallow so that he doesn't end up in any trouble with choking on secretions etc. We are praying for protection over his brainstem so that basic body functions are not compromised. Furthermore, we are praying that God would put his hand over Max's sweet smile and his ability to recognize us and interact with us. I won't say that it doesn't matter whether Max can walk or talk because it does, of course. But the most important thing for Al and I is that he is happy.

Of course those are the specifics but we will also continue to pray for medically unexplained healing. We are praying that if Max's brain does continue to shrink that God will protect what is most important to Max. But we are also praying above and beyond what the doctors have predicted. We are praying that God will stop the brain cells from dying now and that Max's brain will start to regenerate and heal. We are not sure how God will work in Max's brain but we know He CAN heal Max in big or small ways so we'll just keep praying for both.

Please pray for us as we process this and deal with it practically but more so emotionally. If you're reading this blog you already know we have had a difficult year and we have a lot on our hands and it is difficult to fathom dealing with a whole new set of issues. But we know God is faithful and we know we can get through things we never would have thought possible. Al's mom is coming out tonight and we are excited to have her here. We are grateful for friends and family and support. We are very grateful for love poured out on us during this very difficult time and even more for love poured out on Max, and Addison of course. We understand people often do not know what to say but we do love to hear from people and see people. Feeling lonely certainly does not help so keep texting us, emailing us and talking to us and loving us. It makes times like this manageable when you have people walking alongside of you.

Thanks so much for all the prayers and please keep praying for us all. And for those of you who see us regularly and know Max, please keep believing in Max, giving him cuddles and soaking up his adorableness. Al and I are actively choosing not to let his MRIs define who he is to us. Max is still the most adorable boy in the world who lights up our lives. Nothing has changed that and nothing ever will.