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 steph.graham@hotmail.com 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!)

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.

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.

When it rains, It POURS!

We knew these couple of weeks wouldn't be easy. We knew Max would be having surgery for a couple of weeks before and we had prepared for that to be a big deal and we knew Addie would have surgery not too long after so we anticipated a climatic end to February. We did not, however, anticipate quite the level of drama that we have encountered. My Facebook updates were getting quite lengthy so I thought I'd do better now just updating properly on my blog...

Max had no issues with his surgery at all and we had been really prepared for him to. We had the whole Max is sensitive and anything can send him into trouble talk with the doctors so we very nervously sent him off to surgery 8 days ago. And we held our breath and prayed very hard and he did really well. And we kept holding our breath and praying fervently as he started Hemo 2 days later and again he did really well so by the weekend we started to relax. Max was off his pain meds and feeling better and had not had any problems with Hemo yet. The relaxing from knowing Max was doing well was dampered by the dread of taking Addie in to surgery on Monday. I felt really sad about it all Sunday because she was SO happy this weekend and it's just no fun to take a child who is feeling great in to inevitably feel worse even when you know it's the best for the long run. I wasn't hugely nervous so much as just dreading the whole post op pain part.

So Monday came and Addie had Hemo in the morning and then surgery. She came out of the OR pretty quickly and we got to go back to recovery to see her. If you get admitted straight to an ICU (NICU or PICU) you don't go to recovery but since Addie was planned to go to a normal pediatric room she went to recovery. We've only been to recovery a couple of times but it is NOT a fun place. Lots of kids coming out of surgeries- tears, nervous parents, no fun. Anyway when we got there Addie was uncomfortable and fussing and her blood pressures were high. Long story short 4 hours later and many many pain meds and blood pressure meds later Addie was smiling and playing and yet still extremely hypertensive. It's just easier to just talk about the systolic number, the first number. Addie's should be between about 95-115 and generally runs about 105-125 so a little high but ok. The doctors wouldn't consider it grounds for needing to come in until it was consistently above 135. A BP above 150 is way too high and above 170 is acutely dangerous because little hearts cannot sustain such high pressures. I remember when I was pregnant with twins, I had to get blood pressures checks daily because my pressures were creeping up into the 140s. So the fact that Addie's BP ran in the 170-180s for 16 hours straight is very scary. They tried every machine and every cuff hoping like crazy it was some sort of error.

We tried to avoid a drip for a long time because she didn't have IV access because it is really hard to get an IV on Addie. We tried every single blood pressure medicine, either orally or through her Hemo catheter and nothing seemed to work. Finally at 2am it was clear she had to get a drip so we then spent 2 hours getting an IV in which was a very traumatic experience for both Addie and I! They ended up having to get a scalp IV in and had to shave part of her hair. And it has taken Addie a really long time to grow her sweet little blonde fuzz so I was very sad about that. But finally after about 7 sticks and over a couple of hours, Addie started on her drip. I was so stressed by this point because nothing had worked yet and I knew we needed to get her BP down soon or her heart was going to run into trouble. I prayed very hard at 4am and asked all of you to pray and thankfully the drip worked! She required very high doses but her pressures finally came down!!

Now her pressures are being managed by the drip so she is not in any danger from such high BPs but we can't seem to get her off the drip. The intention of a drip (which administers medicine constantly around the clock) is to stabilize her and then hopefully wean off and onto oral meds. We hoped maybe having Hemo would help but it has not really yet. So please keep praying for Addie. She cannot leave the ICU until she is stable off her drip for a while. We still don't fully understand why it happened other than it seems to be a rare but possible effect from anaethesia. Why is hasn't worn off yet we're not sure. Addie often seems to run into these confusing medical dilemmas where I really feel like I need House to come and figure it all out...

But the culprit seemingly was anaethesia. Which means you can only imagine our excitement at finding out today that Max would be going back under anaesthesia tomorrow! I mean, really?! Have we not had enough anaethesia fun for one week!!! So Max is not getting surgery, he is going under general to have another MRI done. It's like my twins are competing to see which one can get more medical attention! Ultimately it is just the reality of having twins with chronic health conditions- definitely not for the faint of heart!

So Max's MRI... Max had an MRI about 6 or 7 weeks ago so you may be wondering why we're doing another one. Well, as I've mentioned before Max's MRI showed significant brain 'damage' or abnormality. However, we haven't been able to get a diagnosis as to why. There were a lot of possibilities posed and at our meeting a few weeks ago, the doctors wanted to talk to us about their concern that Max's condition may be 'neurodegenerative' meaning he may actually keep getting worse neurologically, which could actually make it life threatening. It could also not get worse but be stagnant and he will never develop past where he is now. It could not be either of those two options and Max could get better but the doctors were definitely concerned that he was showing signs of a progressive condition. We have sent bloodwork away to a genetics lab but do not have results yet so in the meantime we're trying to look for objective ways of seeing whether Max is getting better, worse or the same.

It is a really hard issue for me as his mom because I think it's really important that I believe in Max and look for his acheivements and celebrating his improvements. So no doubt Al and I and our parents look at Max through a lens of wanting to see improvement. Max's doctors have a different, arguably more objective lens, but they also don't see him very often so the fact that they saw him on a good day in December and then a bad day in January seemed to really concern them that he was declining. And while we could just agree to disagree, Al and I feel it is important that we do try and understand if Max does have a progressive condition. We don't want to live with that fear in the back of our minds if there really is no evidence for it. And if it is the case, I suppose we should 'prepare ourselves' for that, although I'm not sure there's really such a thing. Also, we can't move forward with transplant until we do know whether his condition is progressive or not. So we do want to know. We had Max's PT from the NICU evaluate him today and she did not think he was worse. She also did not think he was better. His OT from home does think he is better, if you look at small specific accomplishments.

So in the end, since the MRI started all this, the doctors think the best thing would be to get another MRI 6 weeks later and look directly at the brain and not at our interpretations of his behaviour. We should be able to basically line up the images and at least see if there has been any significant changes. Please join us in praying that there will be no evidence of deterioration in Max's brain. He has been really really happy and cheerful and social and moving the past few days after his surgery so we are hopeful that some of the 'getting worse' that people were worried about was a reaction to pain and discomfort he had been in from his hernia and reflux. Since having his surgery, we have felt like we got our old Mr Happy Max back and that has thrilled us. We expect we will see abnormalities on his MRI still and we know from his pronounced developmental delays that there are some problems there. But we are praying expectantly that there is no evidence of brain deterioration. And we are continuing to pray for wisdom for doctors and answers from blood work so that we can arrive at some sort of diagnosis and some idea of what the future may have in store for Max. This set of issues we're facing with Max has been much harder on us than the kidney stuff so we'd also love prayer for Al and I and our families as we deal with another MRI results session and more talking with neurologists...

Of course after Addie's drama, we'd also love prayer that Max handles the anaethesia well!

So that's our thunderstorm of drama at the moment. We are all tired and have been worried and very much ready to get these babies back home and get things back to normal soon. We appreciate the prayers and support and visitors while we've been surviving these current trials. We continue to see God answer prayers in His time and according to His will. Healing may not always be as fast or complete but God is there working miracles in his sweet babies Max and Addison and we are so grateful that His hand is upon them.

Hemodialysis

So week one of having two babies on Hemo is nearly done and I realize that most of you probably have no idea what that actually means! So I thought I'd try to explain it, at least briefly so you know what our life involves at the moment!

As you know, your kidneys both remove water and remove wastes from your blood. Without kidneys, toxins build up in your body and water builds up. When I was talking to my students about this, one girl asked if I thought my daughter felt bloated most of the time which was a pretty good question! So yeah without kidneys you just live constantly bloated! The beauty (and at the same time frustration) of peritoneal dialysis (their old home machines) was that they are on it most of the time- about 17 hours a day (pre hernia anyway- it was 21 hours after!). And so it ends up being closer to having a kidney because there isn't as much of a chance for water or waste to build up. Peritoneal dialysis (or PD, as we call it) slowly and gradually pulls using water in the abdomen and osmosis slowly pulling things out so it is a pretty gentle treatment.

Hemodialysis is a totally different approach. In hemodialysis, you build up water and toxins in between treatments- so if you go back to back, you have like 22 hours of build up and then if you have a day off, like Addie did yesterday, you have more like 46 hours off and then if you end up with two days off like we trailed with Addie last weekend, you actually have 60 hours of toxins and fluid build up. Then you go onto a machine. And what is so 'risky' regarding Hemodialysis is that you actually connect directly to your bloodstream and pull out a decent percent of your blood and cleanse it and then you just keep circulating your blood through this machine. So at any time during the approximately three hour treatment, you have a significant amount of your blood in a machine rather than in your body.

By directly filtering the blood, Hemo is fast! In three hours, you leave free of all those wastes and fluid build up and clean enough that you can go many hours before needing it again. So you are looking at like 15 hours total of dialysis a week instead of 120 hours a week on PD. So the sheer Math of it really favors Hemo! The problem is probably self evident from my description- blood is really better off staying IN your body! Particularly on a baby who just doesn't have that much blood. Having blood outside the body introduces risks of blood pressure swings (Addie's favorite Hemo trick- her blood pressure can vary from like 60/30 to 170/110 even with a single treatment!), blood loss (one time the machine backed up and about a 100mL (appr 3oz) of Addie's blood poured onto the floor), blood infection, seizures etcetera. So the risks are pretty enormous! It's also a very intense three hours because while they had a 6ft leash to their PD machines, you have about one foot to the machine for Hemo and that one foot is the catheter full of your blood circulating so not moving is pretty serious business. Because of Max's motor problems, he will lie still so that is less of a risk for him. For Addie, she absolutely will not lie down so she has to sit still and play with her toys without crawling or pulling up on the bed FOR THREE HOURS! And every fifteen minutes, they must get a blood pressure which sends Addie into a tizzy of baby rage. Needless to say, it is a very long three hours!!!

Despite her drama queen antics (which were, btw, particularly out of control on Monday as if she sensed Max was in the OR soaking up all our attention!) and the problems we've had with blood pressure and the one incident of blood loss and the one blood transfusion, Hemo has actually been pretty successful for Addie. With Max, we were more concerned because it's harder to predict whether he will struggle with seizures when his brain is compromised. Additionally, Max has his turning blue trick still and we are now starting to piece together that his neurological condition probably contributes to that as well. The doctors biggest concern is that he will clamp down and shut off his airway during Hemo. He does that with some regularity and is usually able to come back on his own and only sporadically (every couple of weeks) requires 'bagging' (basically CPR with medical equipment) to get him back to breathing. But the fear is that if he were to do it while having a significant blood volume outside of his body and in a machine that is not intended to deal with significant heart rate drops, it could make recovery much more difficult. We were told to be prepared for some serious drama to go down if that were happened and talked through all kinds of interventions from chest compressions to emergency intubation etcetera.

Thankfully two Hemo sessions in and this has not occurred. We are really relieved to see that his brain has coped really well with Hemo- his blood pressures have been nice and consistent and free of the swings Addie shows. He has shown no seizure like activity and seemed alert and stable during the treatments. So we feel better that Hemo doesn't seem too stressful for him at base case. The airway issue is more difficult because he could go 10 treatments without an episode and then clamp down on treatment 11 and drama unfold. So we will have to pray our way through each and every treatment and never become overconfident or stop being vigilant about that. And in 6 weeks when he is healed, we will very happily return to peritoneal dialysis for Max!

Also and it's early to tell but so far- we are loving life with the g tube and fundo. Max's horrible reflux cough has been gone and he seems so much happier. Of course he is getting some mighty nice meds so of course that's not necessarily all related to the reduced reflux but we are optimistic that Max will be happier and more comfortable and back to enjoying life in no time.

I mentioned on Facebook that now Addie will have surgery on Monday. She really needs a g tube as well- the direct feeding tube to her stomach. Partly because she still won't eat normally, although we're hopeful that will change in the months following transplant. But more significantly we want it for immune suppressant drugs. Addie is a spitter and even if we get her back to eating all her food on her own- our realistic goal- we don't want to risk her spitting out those life saving important medications or refusing to eat them. So now we will be able to give her those direct to her stomach. Our transplant surgeon here said 'you want my opinion? Leave it in until she gets married and I'm only half joking'! Older kids and teenagers are notoriously bad about taking their medications and can lose their transplants over it so there is an argument for continuing to give them via her g tube long term. We will just have to wait and see on that but for now anyway we will be using that. She is also having her old PD catheter that she is no longer using removed. Which is actually a pretty scary but exciting step because it means we are officially saying goodbye to PD for Addie. With our transplant planned for May, it seems best to leave her on Hemo until then. So Monday's surgery is really an important and therefore exciting step towards transplant. We are still dreading it because surgery sucks and it's hard with babies who don't understand why they left feeling great and came back feeling awful. But once we get through the other side of next week, we'll have made some great progress for both babies and be feeling very happy about that!

I don't know how long we'll be here. Addie should get released Tuesday or Wednesday. Not sure when they'll release Max. The ICU will surely grow weary of a healthy baby lying in there just in case he turns blue so I imagine if he's still doing well mid next week when Addie goes home, they might start talking about letting him come home to. We can't wait to be back at home all together!

Thanks so much for all the prayers and support. We have felt very loved and cared for this week and really appreciate all of you!

And pictures of each baby getting Hemo...

Addie waving at everyone who walks by during Hemo- the reddish brown lines from her bed to her machine are her blood going into the machine.

This is how Addie passes her time- playing with all her toys!

Addie really enjoys eating her blood pressure cuff- medical supplies make the best chew toys!


See, here is where my blood is!!! (and no she is not allowed to play with her blood lines! I just couldn't resist getting a picture of it telling her no, haha!)

Max's chillaxed approach to Hemo

Hemo with Max- notice the absence of crazy drama we'd feared!


You can see his blood lines coming from his chest in this picture...

Here's a close up of our handome little man- he is still a little loopy from the drugs but feeling pretty good!

Decisions and Direction

A week ago my head was spinning with the number of decisions we needed to make for the babies. Now a week later, we have made most of our big decisions and we now have a plan and direction and I am very grateful for that. Admittedly my head still spins a bit because all of our decisions are just the start of the next big deal so we have lots on our plate! But we know we're headed and that helps me.

I'll try to balance giving enough detail for those who are interested with not boring you with excessive medical info! So first up, sweet Max. Following a very difficult meeting with his neurologist and nephrologist (brain dr and kidney dr), we decided we will be going forward with surgery to repair his hernia and perform a procedure to reduce his acid reflux. (for those interested, he will be getting a g tube and a fundoplication that should eliminate acid reflux and greatly reduce his vomiting). Although surgery is always risky itself, the bigger risk factor involved in this decision is the approximately 6 weeks of hemodialysis Max will require following the surgery. Addie has done really well on hemo which has helped us feel better about this. However, Max is 'neurologically compromised' which basically means that his brain just doesn't work quite like it should and we don't really understand exactly how it does work so it's a lot harder to predict how he will do on Hemo.

But this surgery will greatly improve Max's quality of life and therefore our decision was actually pretty easy. Max deserves to be as comfortable and happy as he can help him to be. So Max will be having surgery Monday February 20 at 8am and he will be in the PICU until his doctors feel comfortable sending him home to come back and forth for Hemo. We expect a 2-3 week hospital stay but know it could also be longer. We would love for everyone to surround Max in prayer starting next Monday and for the days that follow. If you could pray specifically for Max's breathing that he will not have one of his blue spells while on Hemo (this seems to the biggest fear his doctors have) and that he will not experience any seizures while on Hemo. Although we are nervous and aware of the risks, we have a peace that we are making the right decision and believe that Max will be fine on Hemo.

Meanwhile we have also had some great progress for Addie. Our insurance approved Addie's out of state transplant and suggested that if we go to Stanford they will pay for our airfare and contribute to accommodation as well (since it is in network for them). Seeing as Stanford was our surgeon and nephrologist number one choice and arguably the absolutely best place to transplant a baby, we decided that was an easy decision to make! I very nervously left this rambling message for the transplant coordinator. I spoke super fast and gave all these disjointed details and then gave her my phone number and then was like 'oh yeah, my name is Stephanie and I'm from Texas. Ok, bye." I was pretty sure she was going to think I was crazy and maybe never call me. So when she called the next morning and her first line was 'your message is now my favorite voicemail message of all time', I knew it was a match made in heaven! We still have some details to finalize but as of right now, Addie and I will be heading to San Fran at the end of April for an early May transplant. We are very excited that God has led us to this hospital and we are very excited for this big step for Addie. She will also be having a surgery in March in preparation for transplant to put in a g tube for administering meds and to remove her peritoneal dialysis catheter. We plan to keep her on Hemo until surgery.

I mentioned that we had a difficult meeting with Max's doctors to discuss his neurological problems. We still do not have a diagnosis as we are waiting from results from a genetics lab. Please join us in praying that we do get a diagnosis. It will really help us know what to expect for the future and help us better understand Max's current issues. The doctors have prepared us for some pretty troubling 'what ifs' but we are trying not to worry about possible diagnoses at this point as clearly we have enough things to worry about without dipping into the what if pool. We would ask you to please pray fervently that Max does not have a progressive condition. While initially we were told that is unlikely, it seems to now be something the doctors are considering. This has obviously been a very difficult month for us as we've been facing these concerns for Max and we would appreciate continued prayer for hope, peace and strength for Al and I, as well as our families, as we face this new set of medical issues.

Sweet Babies- you'll have to excuse Addie's annoyed face. It is how she generally feels about sharing any attention or spotlight with her brother! He meanwhile is smiling as he always does when he is near Addie!

Big decisions and big blessings

It's been a while since I've posted as life has been busy and filled with its usual level of confusion and chaos! We've been trying to figure out what lies ahead for both babies and don't really have a lot of answers yet so I've been waiting to write until I have a worthy update! But then I figure people are interested and praying so I'd write just to say we're doing well, dealing with some big decisions and just generally enjoying life with the babies.

I realized today that in January Max and Addison both slept at home every night of the month- no hospitalizations! And that the only other month that has been true in their life was September. So I decided that was certainly something to celebrate. We had a crisis free month and feel blessed that on top of staying stable with all their big medical issues, Max and Addie are just staying cold and flu free this winter and feeling good. I said something to our Dr S one day a few weeks ago that it'd been a while since we had gotten good news and she told me that every day that Addie does well on Hemo and there are no complications is good news. And this is certainly true. Addie had a great month on hemo, needed no blood transfusions and has been the happiest she has ever been.

Another huge praise I forgot to write about was that we had Addie's hearing retested and she has been re-diagnosed with only mild hearing loss. It's interesting to think about why things happen and I remember the utter devastation I felt the day of their surgery when they told me they had likely profound hearing loss. I wonder sometimes why I had to go through that when it turns out they do not have profound hearing loss. Of course I don't have all the answers but I do know that it floods my heart with joy every time Addie turns to her name, every time she startles when Lucy barks and every time she imitates her Dad's laugh. I smile probably 20 times a day just at the blessing of their hearing. It has taught me to appreciate something that perhaps otherwise I would have taken for granted. It has also taught me that the future is not certain and that I should hold on to hope even in the face of difficult news. And that is a lesson that is particularly important for me as we stand at the beginning of our journey to understanding Max's neurological problems and look at the road ahead. We value medical opinions and outlooks but we also know they are not set in stone.

We have ordered hearing aids for Addie which should be in in a couple of weeks. Mild hearing loss will delay her speech development (perhaps the reason why she refuses to say anything other than 'Dada' despite our many attempts to teach her mama, nana and papa?!) so they should help her. The audiologist said the prognosis for Addie's speech is very good and that she should develop completely normal speech with a hearing aid and predicts no need for cochlear implants. We hope the same is true for Max. We have not been able to repeat his hearing test yet and his neurological problems make it more difficult to predict how his speech will develop. But the encouraging news regarding Addie's hearing gives us lots of hope for him as well. Addie also got her cute glasses last week. I was worried they would make me sad but I was all smiles seeing them on her. She was precious in them. Certain things feel like reminders of all their medical problems- like feeding tubes. Feeding tubes do make me sad. So I worried her glasses would be like that. But they don't make her look sick, they just make her look adorable. And grown up. She's looking more like a toddler and less like a baby every day.

In terms of dialysis and transplant and all things kidney, we are in a stage where a lot of difficult decisions need to be made and we don't have all the information we'd like to be making all these decisions. We're trying to move forward with an out of state transplant for Addie and hopeful for a summer transplant in Atlanta for her but it is currently out of our hands and in the paperwork and insurance stage so we're just praying every day that it will work out. In the meantime, we need to be deciding if we want to try to put Addie back on her home machine or keep her on Hemo. Hemo is awesome for her quality of life. She has gone from 17 hours of dialysis 7 days a week to 3 hours of dialysis 5 days a week- she's loving the freedom and her development is progressing as a result. But hemo means BIG risks and knowing that a blood infection or serious blood loss or a seizure or any number of unpleasant things could suddenly and swiftly happen and put her at great danger. Her machine may not even work and she could end up with fluid in chest again. But if it did, she'd be safer on it. So it's a difficult decision and one we are praying very carefully about. Because we so want a transplant for her and are so frustrated that hasn't been able to happen at our hospital, we are struggling to be happy with any other plan. For right now, she will stay on Hemo for a while longer but we keep praying for wisdom and guidance in making that decision.

The situation with Max is equally complex. We have been very happy with him on his home machine but he has now developed a hernia which is basically a tear that causes fluid to push into places it is not meant to (in Max's case, his scrotum). It is painful, especially on higher fluid volumes. To ease his discomfort and risk for damage, we've had to lower his volumes and increase his time on the machine so he is currently on his machine 21 hours a day which is just so sad. He also has been struggling a lot with his reflux and vomiting and he have a had a couple of scary choking on vomit issues the past couple of months. We have been looking at surgery to repair the hernia and to have a procedure called a fundo that would eliminate vomiting and reflux for him. But, it would involve putting Max on Hemo for about 6 weeks and because of Max's airway and neurological issues, Hemo would be even riskier for him than it is for Addie. We'll be meeting with Max's doctors soon and doing lots of thinking and praying about the best plan for him. We realize that as complicated as things have been with trying to arrange a transplant and debating hemo and PD for Addie, they will only be exponentially more complicated for Max because of his other health concerns. So for now, we're just looking one step ahead and trying to decide what to do about his hernia and reflux.

I find it difficult that there are so few clear answers at the stage we are at right now. And I'm grateful that our doctors value our opinions and inputs. But it also feels like a lot of pressure. I am very worried about making the wrong choice or making a choice and feeling very guilty if something ends up going wrong. I suppose that really that is one of the fundamental difficulties of parenting- how do you know what is best for your child and how do you live with the decisions you make. The stakes are high for us when we are faced with life or death consequences but the fundamental issue is common to all parents. And so we do what anyone else does... we pray, we talk, we make little pro/con lists, we google things, we ask for advice... and finally we make a decision and trust God with the outcome.

So anyway, that is our life at the moment. It's stressful but it's good. The babies are doing well and we're enjoying them very much. I took Addie to church yesterday for the first time and she was so delightful! Perhaps a little too delightful as she talked, laughed and blew raspberries through the very serious prayer time! We thank God for their smiles and their happiness and for their precious lives.