307 days

Most of you already know, but to make it official: Calvin passed away on Friday August 23, 2013 at 7:23 am, the exact same time we welcomed him into this world a short 10 months, 3 days prior. I won't be posting details of his final moments, but I will say that as horrible and tragic as this experience has been, his actual passing was the most peaceful, beautiful part of his difficult, short life. He took his last breath in my arms, together with his father and his brother in our bed and he was just finally...at peace. He was no longer suffering and no longer in pain. He was such a beautiful baby, even in death.

The last 10 days have just been a horribly emotional blur. Watching a stranger dressed all in black take my baby out of my bed, away from my house and put him in a black minivan and drive away with him was excruciating. Deciding on the mundane details of his funeral service just hours after he passed was torture. Sitting in the funeral home staring at an empty 32" casket while we decided on which prayer cards to give out at his service, which verse to include on those cards, which guest book would suffice, which quote we wanted on his photo tri-fold, what we wanted his obituary to say, deciding when this would all take place...was something I would never wish on any parent.

Going to the cemetery where we decided to have him buried the next day and walking the grounds in order to pick a spot to bury my baby was equally surreal. Drawing up contracts for burial and looking at brochures for headstone monuments was almost more than I could handle. I've been trying my best to be strong and do what needed to be done for our son, but I can't help but replay all those interactions and decisions in my head and just wonder how we got through it.

Calvin's funeral service/visitation/prayers was on Tuesday August 27th and we laid him to rest on Wednesday August 28th. There were so many people there that loved him and came to support us and it's just been absolutely humbling to be surrounded by so much love and support. My family and I will never be able to adequately express how thankful we are to each and every one of you for all the kind words, thoughts, prayers, love, flowers, food, donations and support you have provided us. Even those of you that were not able to make it to his services but sent your love in other ways- thank you so much. It truly has touched us and we are so thankful.

307 days. Our sweet baby boy was a part of this world for 307 short days. I will cherish every single one of those days, as hard as they were at the time, and I will never forget them, for the rest of my life. I'm glad that we were blessed to have him in our lives and I know that we're better people for it. Ryan has been the most amazing daddy and advocate for that boy- Calvin was lucky to have him as his daddy and I'm lucky to have him as my partner in this journey. You never really know how much you love someone or something until they are gone. I don't think either one of us really realized just how deep our love for this baby is until he was taken from us. He was a part of our soul, and he will always be with us. I just hope Calvin knows how much we love him and how much we appreciated him. I hope he knows that we did what we thought was best for him and we made the decisions that we thought were right at the time. I'm so sorry we weren't able to save him...I'm sorry he had such a rough life. But I hope he knows how much he will forever mean to us and to everyone who knew him.

 It's hard to believe that just over 10 days ago, I was holding my baby in my arms and now I sit in the grass and look at a pile of overturned dirt that he is buried under. I feel lost, like my identity has been stolen from me. For so long, I've been so busy taking care of Calvin- being his nurse, being his advocate, being his caregiver, being his mom....and all of a sudden I sit here missing all those things...doing nothing. I should be mixing medications, I should be feeding him, I should be changing diapers, I should be holding him, loving him. And I'm not. I sit here in my empty, quiet house, my arms are empty and there's just...nothing. I feel like my heart has been ripped out of my chest. I feel like I don't know who I am anymore. Then I have to tell myself that I'm still Paul's mom, I'm still Ryan's wife...in a few weeks I'll be a mom to a newborn again. But that doesn't take away the pain of losing Calvin. I don't think anything ever will. To be completely honest, I'm terrified of how hard the birth of our daughter will hit me while I'm still in the trenches of grief and mourning the loss of my baby boy. I'm scared that I won't be able to be happy about the baby. I'm scared that all the memories and pain of Calvin being flown to the NICU the day after he was born will come flooding back when I'm in the hospital. I'm scared that all the milestones she will inevitably hit, that Calvin never did, will be like a knife through my heart. I don't know how I'm going to handle it....but I will. We will.

Once again, thank you, from the bottom of our hearts. We truly are humbled by all the outpouring of love and support and will never be able to thank you all.

God's Garden

God looked around His garden

And found an empty place.

He then looked down upon the earth,

And saw your tired face.

He put His arms around you

And lifted you to rest.

God’s garden must be beautiful

He always takes the best.

He knew that you were suffering

He knew that you were in pain

He knew that you would never

Get well on earth again.

He saw the road was getting rough,

And the hills were hard to climb,

So He closed your weary eyelids

And whispered "Peace be thine".

It broke our hearts to lose you

But you didn’t go alone,

For part of us went with you

The day God called you home.

Rest in peace, baby boy. We will love you until the day we see you again and your life will not be forgotten. <3

Difficult images

I would love to write that things are looking up, but unfortunately I can't. I wrote about the chest x-rays we had done on Calvin last week here but I just got copies of the actual images and thought I would share them, for those of us that are more visual. There are little black pockets on the lower right hand side of the x-ray from 8/18, that are pockets of infection.

x-ray from 8/9/13

x-ray from 8/18/13 showing swollen stomach, infection and very little space in his lungs. No wonder he cant breathe. 

I wanted to see these images because I felt like I needed a visual confirmation of what was happening inside his little body. It was, and still is, extremely difficult for me to look at these, but it gives me some peace in knowing that we have done the right things for him. I have been having extreme mommy guilt about the fact that I had to stop feeding him (he has had ZERO formula for 4 1/2 days now) but seeing the second image that shows how swollen his stomach is and how little space his lungs have, confirmed to me that stopping his feeds was the right choice. His body is not processing fluids (his diapers are almost always dry and he is having no bowel movements) and feeding him was only causing him more pain and discomfort; I know that now based on these images and that gives me a tiny bit of peace. I wish there was more I could do for him, but I don't think that there is anything that we haven't already tried.

I weighed Calvin on 8/15/13 and he weighed 18.4 lbs. I gave him a nice bath and weighed him last night (8/21/13) and he is down to 17.4 lbs. Today his fever is back (100.9) and he looks very pale and blueish. His nurse has told me that the fever is the process of his body shutting down. So...I fear that it's only a matter of time now. This boy is a fighter, for sure, but at this point I'm not sure how or why he is still hanging on.

Thank you all for the continued love and prayers- it means more to me and my family than we can ever express. Please just continue to pray that my baby will have a safe journey home and that he will no longer be suffering and in pain.

More bad news...

This morning, August 18, 2013, we took Calvin to the hospital to have a follow up chest X-ray done to check and see if the pneumonia was gone and to see how much fluid he still had in his lungs. We knew, based on listening to labored breathing and by listening his lungs with a stethoscope that he still had some fluid in there, but we wanted to see how much and where it was. Results from the x-ray show that the pneumonia is worsening and is now moving into the right lung (it had previously just been in the lower left lobe.) It also showed that his stomach is distended (enlarged from internal pressure) which means that his body is not processing the fluids (medication and tiny bits of formula that I've been giving him. We started him on another antibiotic today to see if that helps the pneumonia and have gotten him a nebulizer machine to give him Albuterol treatments try and help break up the congestion in his chest. I also have to space out giving him his medications to every 2 hours instead of 4, and stop the formula altogether. 

Obviously none of this is good news. Unfortunately, I don't think there's really anything else that we can do for him now....it's all up to him. I just think his little body is slowly shutting down..he's tired. Over the last few days I've noticed that he's been having increased periods of apnea, where he stops breathing for a few seconds at a time, only to finally gasp and try and catch his breath when he comes back. Tonight, he had several longer periods of apnea...one in particular where Ryan and I both just looked at each other and knew that we were both thinking and fearing the worst...neither of us said a word, but I know we both thought that was the end.

Today was a hard day, in so many ways. Driving through cemeteries today was heart-wrenching. How does one begin to make a decision on where to bury their baby? How do I pick the perfect place for him to rest, and eventually for me and his father to rest with him? Is this place quiet enough? Is this somewhere I want to go to visit my son for the rest of my life? How do we pick the right headstone? What design would we choose? Do we bury him, or cremate him? How are we going to pay for it? Will we have to get a loan to pay off a 3-piece headstone/marker for us? How long will we be paying for that? Why do we have to make these decisions? We shouldn't have to think about all this. No one should. It sucks.

I'm sitting here next to him right now listening to his hard, labored breathing and watching him struggle to get enough oxygen into his chest and just praying that he is not in pain. I hope that he is not suffering and I hope he knows how much we love him. Most people won't understand this, and no one should have to, but today I told my baby boy that if he needed to and if he was ready, he could let go....that we would be okay, someday...somehow. I don't know exactly how we're supposed to make it through this in one piece, but I do know that we don't have any other choice, unfortunately. I know that when my baby boy leaves us, he will no longer be suffering, and he will be in a better place. I'm not a very religious person, but I do believe that he will be with my family members that have passed and they will care for him better than his father and I ever could. I will miss him with every fiber of my being, until the day that I die, but I know someday we will be together again and it will be perfect. I hope that where ever he goes, he can be a "normal" baby that walks and talks and doesn't have seizures and neurological delays and I hope that he stays with us and watches over his brother and sister. I hope he knows that we did everything we could for him and we love him more than words can describe. I hope he knows that his brother absolutely adores him and misses him even when he is sitting right next to him. I wish he could meet his baby sister and I hope that he had a good life while he was with us, despite the hardships he has endured.

Another big event

It's been a while since I updated, I know. It's now August 17, 2013 and Calvin is 9 months, 28 days old. This boy is nothing short of a fighter- always has been. About a month or so ago, Ryan and I made the decision that we (I, really) would take the boys to California to meet and see my family members that they hadn't met or seen in a while. I spoke with Calvin's doctors, neurologists and hospice team and they all agreed (with some chagrin) that taking him to California on a 5 hour flight would be okay, and it would be a good thing for us to spend some time away from our everyday life and be with family. So, on Friday August 2, 2013, we packed up the boys and headed for California. We got through the flight without a hitch and everything was going well. We had a get-together on Saturday with some great friends of ours, and another, larger get-together on Sunday with family. Everyone was happy and excited to meet Calvin and see Paul again. Everything was going great. Ryan had to fly home on Monday, while we (myself, Calvin and Paul) were planning to stay in California until Friday the 9th. Calvin was doing pretty well out there- he had some problems with taking his bottles a couple times, but that was not abnormal at all. He also sounded like he was having trouble breathing, but that was "normal" for him as well and I attributed it to the fact that some kids with his syndrome have a floppy larynx, and that might be the case with him as well. He never seemed to be in any respiratory distress and his seizures were "under control" as much as they could be with his medications.

On Wednesday, August 7th, we went to Disneyland. It was me, Calvin, Paul, my 2 sisters, my brother, my dad and my 5 year old nephew. I had planned originally to not have Calvin there all day, just because I  thought it would be a little much for him to handle. We didn't get there until about 3:30 pm though and didn't plan to be there for too long, so I thought it would be okay. The day at Disneyland was GREAT. We went to California Adventure, watched some parades, went over to Disneyland and rode the train, went to Toon Town and to Mickey Mouse's house and met Mickey, went on the Jungle Cruise and overall just had a great day. Calvin did not sleep much at all, which is abnormal for him, but we had to keep taking him in and out of the stroller to get on the train, which probably kept him up. He took his bottles and his medications perfectly that day and seemed to be doing extremely well. We left Disneyland about 9 pm or so, and Calvin (and the other boys) fell asleep pretty much as soon as we started the car and headed home. Here is a picture of him at Disneyland. This is the biggest smile I have ever seen on him.

About 20 minutes before we got home, I started to hear Calvin make some noises that seemed a little out of the norm. I figured he was having trouble breathing, so as soon as we got home, we took him inside and I asked my mom to pull him out of his car seat and asked her to burp him or something, that it sounded like he was having trouble breathing. I got Paul into bed then went back to Calvin. I took him from my mom to change a diaper and that's when I noticed the problem. He was seizing like nothing I had seen before. His eyes were closed, and he was just twitching very rhythmically and making soft grunting noises, which he didn't usually do. Its hard to describe what he was going through, but I knew in my heart that something was very wrong and I didn't like it. I gave him some extra doses of his "emergency" medication and it didn't seem to do anything. A bit later, after I couldn't pull him out of it with his normal emergency meds, I called his hospice nurse in Maryland (at midnight California time, so 3am her time) and described what was happening and asked her what I should do. I took a video of him with my phone and sent it to her as well. Over the next 3 or so hours, I gave him probably 4-5 times his normal dosages to try and pull him out of the seizure. He finally seemed to calm down, although he had not come back to his "normal" state. He also, all of a sudden, seemed to be burning up. Taking his temperature revealed 103+ degree fever. The next 24-48 hours is kind of a blur. We got very little sleep, Calvin and I. He seemed to be out of the "big" seizure, but I could tell that his brain was still seizing. He basically was unresponsive and didn't open his eyes, wouldn't take a bottle or any medications for 2 days. I was able to get small amounts of his emergency seizure medication and Tylenol in his mouth, and was giving him another emergency seizure medication rectally every 4-6 hours. Early Thursday morning, I was in contact with his hospice nurse again, sending her updated videos of what was happening and how he was acting, and she told me that she thought we needed to come home ASAP. She told me that based on what she was seeing of him, that he had hours, maybe days left and if I wanted to be home when his time came, that I need to change my flight and get home. She also asked me if I was even comfortable taking him on the flight, and suggested that if I didn't, that I just stay in California and let him pass there. I didn't 100% agree with what she was saying, so I asked her to contact a hospice nurse by my parents house and have them come out and assess him and see what they thought- that maybe another nurse could give her a better, more complete picture than I was providing. So, a different nurse came out and basically said the same thing. She listened to his lungs and said that he has fluid in his lungs and he has pneumonia and that we needed to get home. She (along with my dad) suggested that we get Calvin on some emergency oxygen because he was in respiratory distress and having trouble breathing. So, we got an oxygen machine out and started him on that, and got him some rectal Motrin to try and bring down the fever.

At this point, things kind of got real. I had been told several times that he had hours to live and I either needed to get him home or hang tight in California and wait. I made the decision to take my baby home. If he was going to die, it needed to happen at home with his daddy. Calvin's hospice nurse told me that she contacted the airline, and their policy for if someone dies on the flight, is to make an emergency landing. So she told me that if he passes on the flight, I needed to do my best to stay calm and hold him until we landed. Not sure how I was supposed to "stay calm" in that scenario, but okay. My dad was able to change mine and Paul's flight and get my mom on the same red-eye flight back to Maryland that night, Thursday August 8th. My dad was able to get a gate pass to get through security and accompany us all the way to the gate up until the point that we boarded to help us with Calvin's oxygen machine. We didn't have enough time to get a portable, FAA approved oxygen device for the flight home, so we had to take the oxygen off him before boarding and wait until we got to my house where there was another machine waiting. The flight home was scary, to say the least. My mom was holding Calvin so I could deal with my 2 1/2 year old, and I don't think she'll ever get over the fear she felt every single second of that flight. At one point, she even took him back and arranged for the flight attendants to give him some of the portable oxygen they carry on the plane because she was so worried about how shallow his breathing was.

We landed about 7 am Maryland time on Friday August 9th, and after getting all our luggage from baggage claim, taking the shuttle to the rental car terminal, fighting with installing car seats and getting the luggage in the rental, we were on our way home. There was a minor incident with some debris in the road and a trip into the guardrail on the drive home, but we made it around 10am. We rushed Calvin inside, took him out of his cars eat and he was just burning up. Ryan was actually shocked to see how bad he looked and felt, even though I had been telling him all along. He got a towel and some ice packs to try and bring down his core temperature and we put the oxygen back on him. The next several hours were again a blur for me. I was beyond exhausted after not having slept for 2 days or so and all the stress of leaving California and travelling home so abruptly, on top of now being 33 weeks pregnant. So, we arranged to have Calvin's hospice nurse meet Ryan and Calvin at the hospital for a chest x-ray to confirm the pneumonia and get him on some antibiotics. I stayed home with my mom and Paul, and we all tried to take a nap. Sure enough, Ryan called to say there was fluid in Calvin's lower left lobe and he has pneumonia. They got him some rectal antibiotics and more medications for the seizures, since he wasn't taking his normal meds and Ryan brought him home.

At that point, Calvin had not eaten anything or had his normal medications that he has been on since he was born in over 2 days. I was obviously concerned that he was starving to death and needed his meds, so Ryan and I began to ask about putting a feeding tube down his nose. He had a feeding tube in last time he was in the PICU back in March, so I knew it was possible and it was something that I had maintained before and was comfortable caring for him with it in. His hospice nurse fought us on it for most of the day, because she thought it would be uncomfortable for him and she was convinced that he was dying and we needed to just keep him on morphine and the other meds to keep him comfortable until he passes. Ryan and I weren't ready to give up on him yet, and we didn't want him to die of something we could control (pneumonia, starvation, medication withdrawal) so we argued (and admittedly, were a little mean) with his nurse and finally got them to agree to let us take him back to the hospital that same day and get a feeding tube put in him. We immediately began giving him his normal meds and a tiny bit of Pedialyte and formula and he seemed to do okay with it.

Since then, Calvin is still fighting, despite being told dozens of times that he only had hours, maybe days left to live. He is still not doing very well, but he's still with us right now. The fever is now gone, and his lungs started to clear up, but have now filled with fluid again. He has a nasty cough that sounds like he is trying to clear it, but he just doesn't have the strength to get all the crud out. We have been camped out, sleeping on the couch with him because his oxygen machine is out here (that he is still on, pretty much 24/7) and he needs to be sleeping mostly up-right because of the fluid in his lungs. I am giving him morphine and other meds every 4 hours to try and keep him comfortable. He is pretty much medicinally sedated and is not awake or alert for more than a few minutes at a time, once or twice a day. He sounds terrible; he is wheezy and is having a lot of trouble breathing. It's now been 10 days since his big event, and I don't know where we go from here. His father and I will never give up on this baby...but I'm not sure how much fight his little body has left. His secondary nurse came for a visit today and said he still has fluid in his lungs and she said this is "100%, most definitely, without a doubt...the end." We're taking him back to the hospital tomorrow to get another chest x-ray done to see how much fluid he has in his lungs and to see if its worse/better than it was before. I don't know where we go from here. Ryan is convinced that he will pull through this, and obviously I hope for that also, but I just don't know. I'm scared that he won't. But, he's a fighter and I can only hope that he proves us all wrong. As of right now, it's just not his time to go.

I spend every second of my life right now watching this child and listening to his every sound. Every time he holds his breath or grunts or makes any noise my heart drops. I live in fear of closing my eyes because maybe when I wake up, he won't be breathing any more. I've run through that scenario hundreds of times in my head- what will I do, what will I say? What if Ryan's at work? How will I pull myself together enough to call him and say "come home, Calvin's gone"? How will I call my parents and say those words? What will I tell his brother? How will I be happy about giving birth to another baby in 7-ish weeks, a few weeks before Calvin's 1st birthday if he is gone? How will I make my 2 1/2 year old understand that we are not replacing Calvin? I don't know. I don't want to. I hate this for Calvin; I hate this for all of us.

Calling in hospice

Making the decision to call hospice for end of life/palliative care is one that no parent should ever have to make. Calvin's doctors at the hospital recommended that we call them several times, but I fought it for a couple months because I couldn't bring myself to make that phone call...to admit defeat. I felt as though making that phone call would mean that I was giving up on my baby, which I will never do. However, over the months I have watched him deteriorate and I had gotten to a point where I was terrified of "what if?" What happens if/when he does pass away? Who do I call then? What do I do? We have a DNR in place for Calvin and have made the heart-wrenching decision that when he passes, we are going to let him pass and not try and keep him alive artificially. So what would I do in that moment? Call 911 and have them come and do CPR and everything in their power to save this little baby? Try and do CPR myself? Do nothing? I felt like I didn't have the resources I needed for when that time comes, and being the control freak that I am, I just needed to have something in place, and someone that I could call that will understand our wishes for him and help me through it.

So, on May 11, 2013, my 7 month old son was enrolled in hospice care. Its been a whirlwind of emotions. He's been assigned a nurse/case manager (two, actually) who comes to see him at least once a week and she has been an absolute blessing in our lives. She has literally been there for us 24/7 for the last several months, answers all my questions honestly and without judgement and cares for him more than she probably should. Calling in hospice has proven to be the best decision I have made for him. He hasn't been hospitalized since I called them in and they have allowed me as much or as little medical intervention as we've wanted for Calvin.

Generally, hospice care is for those who are expected to have a life span of 6 months or less...I cant say for sure that Calvin has that time frame on him, but he might. He continues to show signs of decline, and so hospice care continues.

Another hospital stay and confirmation

On February 27, 2013 at 7:10 pm, Calvin started having a bigger, more physical seizure. I picked him up and watched him (since there is nothing I can do to stop seizures). He continued to seize, so I gave him an emergency dose of anti-seizure medications rectally at 7:24pm. That didn’t work, he seized actively/physically until 8pm, at which point the seizures calmed down a bit and got less rhythmic and more sporadic. He was still seizing/twitchy and had been awake, refusing food and seizing continuously well into the next day. I did not take him to the emergency room because normally he comes out of it after the medication is given. The next morning, after having been awake all night, refusing food and seizing, we made the decision to take him back to Georgetown Hospital, on the advice of his neurologist. At 2 pm we arrived at Georgetown and were immediately admitted to the PICU (they had a bed waiting for us.)

They started an IV for fluids and gave him 3 doses of Ativan to try and stop the seizures, none of which worked. The nurses and doctors were running around in a sort of panic mode because of the continuous seizing and because he seemed almost lifeless and was unresponsive to touch or stimulation. 

When we first got there, the nurses took several temps that were about 100.4, so they were concerned that he had a bacteria/virus. They started him on 2 IV antibiotics and an antiviral to try and fix that. They also did an LP (lumbar puncture) to check his spinal fluid for meningitis, which came back negative. That did show, however, that he had elevated white blood cells, which could indicate an infection, which may have been what triggered the uncontrollable seizure to begin with. They hooked him to an EEG machine to watch his brain activity, and he is remained hooked up to the EEG until March 5th, at which point they removed it temporarily to let his skin breathe and heal. A few days after we got there, the fluid they had been giving him started to build up in his body and he looked very "puffy" and bloated all over. They put a feeding tube (NG tube) down his nose to give him nutrition that way, and they stopped the IV fluids. He still had the IV in, because they were giving him his medications through that. 

The EEG results were showing his brain function as extremely disorganized and muddled. The neurologists kept telling us that it was hard for them to pick apart and determine what is and what is not a seizure because the waves are so scattered. The neurologists were telling us that his seizures keep increasing; the EEG showed 75 in a 24 hour time period, then 80, then 115 (on 3/3) then 125 seizures. Calvin was seizing continuously for the first week or two that we were there in the PICU. They were giving him doses of Ativan whenever he was clinically (physically) seizing for more than 5 minutes, and those doses lasted about 2 hours, at which point he would go right back to seizing.

The neurologists were suggesting several different medications and courses of treatments, all of which are "not ideal." They wants us to consider a 6 week course of steroid shots to help seizures;1 shot 2x per day. They tried two new medications (Fosphenytoin and Vimpat) {in addition to the 3 he's always on}). The neurologists stopped the Fosphenytoin a few days after they started it because they determined it wasn’t working. They also started him on the Ketogenic diet again (they tried this when he was in the NICU and it did not work) on March 4th, that is supposed to stop/diminish seizures. They changed his feeding tube from an NG to an ND tube, which just means it’s now in the duodenum (first part of the small intestine) instead of the stomach and they have him on continuous feeds rather than bolus (5 oz. at a time) because they thought it was too much for his stomach to handle and it was bloating him and he would be more comfortable. 

On March 4, 2013, we met with Calvin's clinical geneticist and she told us that she got verbal/email confirmation from the clinical study that they included Calvin in (when he was in the NICU) that show he has mutations in 2 genes that were isolated for Microcephaly Capillary Malformation Syndrome. This confirmation doesn’t really mean anything though; it doesn’t tell us how to treat him or how to stop the seizures...all it does is give us a name. She said that I have a copy of one of the genes and so does Ryan (Autosomal Recessive), so that’s how it got passed on to Calvin. The difference is his are mutated. This also means that future babies have a 25% chance of having the same syndrome. The geneticist also wants our permission to publish their own paper/research study for the medical community about Calvin and their findings. This paper will include detailed pictures, not to be published for the general public, only for internal use or in the medical community.

They did another MRI shortly before we were discharged that showed more atrophy of his brain and brought more bad news. The PICU attending doctor and the chief neurologist sat Ryan and I down on several different occasions and told us that we need to seriously think about the fact that Calvin is on the decline and at any moment he could have another "crisis" or massive seizure/event that could end his life. I asked the neurologist, based on what he knows about Calvin's brain and the rate at which it is shrinking, what type of life expectancy he thinks Calvin will have. His response was "its going to be extremely short." They recommended that we enroll Calvin in hospice care when we get home and just enjoy what time we have with him, however short it may be. After those conversations, Ryan told me to call my parents and get them to come out and spend some time with Calvin. I told him that I didn't think Calvin was going to die in the next week- I just felt in my heart that he wouldn't and he just looked at me and said "I don't know babe....just call your parents." Up until that point, I felt like all the things the doctors were saying were worst case scenario, and they HAD to say that. I felt like it was their job to prepare us for the worst, but that we weren't necessarily there yet. When Ryan said those words to me, it hit me hard. That was the first point that I broke down HARD and completely lost it. I'm not supposed to, at 27 years old, have to call people and tell him that they need to come spend time with my son because he is going to die. So, I stepped outside on my way to get food and called my dad. That was one of the hardest phone calls of my life. "I don't know Dad, you just need to come out. I don't know when he's going to die, but I want you guys to have time with him regardless. Maybe he wont die anytime soon, maybe he'll die tomorrow. I just don't know."

We signed a Do Not Resuscitate order for Calvin, with much heartache and many tears. This decision did not come lightly, and it is one that Ryan and I have made based on what we know about Calvin's syndrome. We know his prognosis is bad: he is never going to get better, he will only continue to decline. We want his quality of life to be fair, we don't want him to suffer. Who are we to artificially keep him alive, because of our need and desire to have him here with us? I believe that if he is not meant to be with us, then he will be in a better place and it's not my decision as to when and where that happens. You may not agree with that decision, and you don't have to. Its the hardest decision I have ever had to make, but its one we made out of love. Never before in the course of our 8 year relationship have I seen the type raw emotions that my husband had in the course of this hospital stay. And I wish I never had....I hate that this is happening and I hate that he hurts.

March 5th was the first day Calvin seemed to be better/different. He opened his eyes open for a couple hours and was talking/cooing for a bit that morning, which he hadn’t done since the seizures started on February 27th. Not sure if the Vimpat or the diet is working at this point. Also on March 5th, the nurses were telling us that he did not have any ketones in his urine yet, which means he is not Ketotic, which is the point of the Ketogenic diet (no ketones=diet is not working yet.) Eventually we got Calvin up to 80+ Ketones, which means he is ketotic. The next weeks were spent trying to get him off the feeding tube and back on bottle feeding, continuing medications and watching his brain waves on the EEG. We finally got discharged on March 21, 2013 (21 days after we were admitted) from the hospital. We took Calvin home with the feeding tube still in his nose, because we had to, in order to get insurance to cover the formula he needed for the diet. Otherwise, the formula was $250+ per can (that lasted 4 days). He was however, taking every feeding and all his medication via bottle.

A few days before we were discharged the neurologist recommended that we begin the course of steroid shots for Calvin and we agreed, as sort of a last resort, since there essentially no more options as far as medicines to help him. So, the nurses taught Ryan and I how to reconstitute (mix) the medicine, draw it up into the needles and inject the steroids into his thighs. It started as two shots at a time (Ryan would inject one thigh while I simultaneously injected the other thigh) once a day and then the nurses weren't comfortable with the amount of fluid being injected at one time, so it was broken up into 3 shots. I spoke with his neurologist about it because I wasn't happy about that, and it turns out the dosage we had been giving him (based on what one neurologist wrote the prescription for) was way too high (about 3x more than he needed) so once it was corrected, it was down to one injection twice a day. I absolutely hated having to give him those injections. I cried every single time, for probably a week and a half. He was such a trooper, but it was so hard to have to stab him with that stupid needle twice a day, even though it was supposed to be helping him. We (I) did those shots for 4 weeks after we went home, at which point we stopped them on advice of his neurologist because they didn't seem to be working and/or getting the results we were looking for. 

We were discharged on March 21, 2013.

Life in the NICU

Calvin spent the first 6 weeks of his life stuck on a hospital bed being poked and prodded and treated like a test dummy. His norm became the sound of alarms going off 24/7, babies crying, people rushing about and very little loving contact. The doctors and specialists ran a whole battery of tests on him to try and figure out what was going on with him; they did sodium channel testing, lumbar punctures to check the neurotransmitters in his spinal fluid, biopsies, multiple blood tests, ultrasounds, sonograms, x-rays, MRIs and EEGs, among other tests, all of which came back normal (except for the EEGs.) He became basically their little pet project. It seemed like everyone from all these different departments wanted to get their hands on him because they wanted to be the one to find out what was wrong with him and be able to claim it as their discovery. The neurologists struggled to control his seizures; they started and stopped several different anti-epileptic drugs (Keppra, Fosphenytoin and B6, in addition to the Phenobarbital and the Topamax he was already on.) He metabolized the medications so quickly that they have to keep his levels WAY above the "normal" rate for a baby his age just to keep the seizures somewhat under control. There were days when he had 20-30 seizures a day (which we thought was terrible at the time) and days that he had 60+. It seemed like every time they started to get the seizures under control, he would have a set back and we would have to start all over again. We went back to square one multiple times. It was so frustrating because the neurologists would start multiple drugs at the same time, so we never knew which drug was working and which wasn't  so it was all trial and error in playing with his medications (which is still the case with him now.) He was hooked up to the EEG monitoring for a week or so at a time. After about a week or so, his scalp would start to irritate and/or deteriorate, so we had to take the leads and all the wraps off to give his head a break before we put it back on. Calvin was a difficult case because we never really knew exactly when he was having a seizure based on looking at him. Some of the movements he was making that we *thought* were seizures, turned out to be nothing (based on what the EEG showed) and things that we didn't consider seizures, indeed were. Sometimes the EEG showed that he was seizing sub-clinically (in his brain), but he was not moving or twitching or making any kinds of movements at all.

In the middle of November, the neurologists suggested a special formula, Ketocal, that has been proven to reduce or eliminate seizures in epileptic children and they thought it was worth a shot. We of course, agreed. So I was instructed to keep pumping for a few days and they would store it for him just in case the formula didn't work, but he was switched to this formula exclusively;  no breast milk. The goal of this diet (The Ketogenic Diet) was to get him into a ketotic state, which basically means his body is basically tricked into starvation so it burns fat. The formula was a high fat, low carbohydrate (no sugars allowed) diet that was nutritionally incomplete. They struggled to get the sugar/dextrose out of the medications he was on, so after about a week, he was still not producing ketones (the goal was to have 50+), so they stopped the diet thinking it was not working. Unfortunately for me, my milk supply had dropped and I wasn't producing enough to keep up with him after they put him back on the breast milk. They had to supplement with formula, which made it worse, so I eventually had to quit breastfeeding/pumping altogether.

The time we spent in the NICU was admittedly a dark time for me. I felt like I turned into a different person than I had been previously. It was all I could do just to keep my head down and try and come out of there in one piece. I felt like all I wanted or was able to do was focus my energy on my sons and getting Calvin out of there. I was extra irritable, I didn't want to talk to anyone, answer any questions or have to explain what was going on with Calvin. I think I was still trying to wrap my head around what we were all going through, so it was hard for me to have to try and explain things to anyone else. Not to mention the fact that I was still physically healing from having just given birth and all the hormones that come along with that. I was a complete mess. I struggled with finding a balance between being there for Calvin yet still trying to be a good mom to Paul. I felt like what was happening with Calvin wasn't fair to Paul; he was just in limbo. He was thrown into this new environment, away from his home and his mom and dad and it was hard for him to adjust. Luckily he's a resilient little boy and adapted as best as he could. My heart broke a little more everyday when Paul would say "Mommy, go see Calvin today?" I hated that we had to GO see Calvin at the hospital; that's no environment for a not-yet 2 year old to be in for hours at a time. I wanted to spend as much time with Calvin as possible but I still had a responsibility to Paul, so we got into a routine of going over to the hospital in the morning and spending a few hours with Calvin then going back to the Ronald McDonald House and trying to find some sense of normalcy for Paul with a dinner/bedtime routine. I was torn between my devotion for my two children and was being pulled in so many different directions and I didn't know how to handle it. I had to be a mom to Paul, and an advocate for Calvin. I wanted and needed to be at the hospital as much as I could because there was so much that was going on medically with Calvin, I felt like I needed to be kept up to date and get as much information and details as I could. I had dozens of meetings with different doctors, nurses, specialists etc and some of the decisions I had to make for Calvin were significant. I wanted to do everything we could to help Calvin, but at the same time, I didn't want Calvin to be their guinea pig or their tool for learning- he was still my child. I cried more during these 6 weeks than I think I had in my entire life. I lost some of myself and I'll never be the same. This baby has changed me to the core, as all babies do.

The doctors got to a point where they were at a complete loss. They could not figure out what was going on with him; every test they did came back normal. They suggested he may have Microcephaly Capillary Malformation Syndrome (Mic-Cap.) The last resort was to have whole genome sequencing (where they look at every single gene he has to try and isolate any that are mutated or have additions or deletions to them.) They told us this was a VERY expensive test, but since he was in the NICU and it was basically medically necessary, that the hospital would pay for it. So, we agreed  and they took a blood sample from Calvin, Ryan and me and sent it off to the lab in Seattle. They told us it would take about 4 or 5 months to hear back from that, and as of April 24th, 2013 we don't have results yet.

Long story short, after a while, we got Calvin to a point where they found the "sweet spot" with his medication and for the last week we were at the hospital, he was completely seizure FREE. He was having ZERO seizures. He was however, in a more zombie-like state- sleepy and just kind of out of it. We didn't really love that, but I was happier with him like that than with him seizing 60+ times a day, so we accepted it. They told us that eventually he would acclimate to the medication and be more awake and alert for longer periods of time.

The day we were being discharged, November 29, 2012, the nurse came over to me and said that the doctors were suggesting taking him down and getting an x-ray of his hips to confirm that they're not dislocated from being born breech. She said she didn't think he needed it because his hips seem fine and she never heard any clicking or grinding like one would normally hear when a hip is dislocated. I pushed to go ahead and have it checked because we were going to need to do it in a couple weeks anyway (as suggested by the pediatrician when he was born.) Sure enough, they came back and told me that his left hip is dislocated. They sent up the orthopedic specialist, who checked him out and just told us to make a follow up appointment at his office in a week or two and they would likely put him into a harness to try and push it back into place.

Calvin was in the NICU from October 21, 2012 until November 29, 2012 (just under 40 days). We stayed at the Ronald McDonald house through Calvin's first Halloween, through hurricane Sandy (and fared just fine) and his first Thanksgiving as well: just my mom, Ryan, Paul and I along with a few other people who were staying at the house from out of state.

The outpouring of love and support we received, emotionally, financially and physically from all over was overwhelming. Ryan and I are both very prideful so it was hard to accept help, even though we desperately needed it. We will never be able to adequately thank everyone for the support and love....it's just not possible. We are forever indebted to you all-- thank you for being there for my family in our time of need.

Taking the EEG leads off

His poor scalp was breaking down from the EEG leads

Thanksgiving in the NICU

finally going home!

Halloween in the NICU

This is the special formula they put him on