Wednesday, July 31, 2013

Caysen: 1 Month. A Letter.

Dear Caysen,

Boy - have you taken us for a wild, wild ride this first month. We were eagerly anticipating your arrival, talking about what a change it would be for Camden and how he would take on the role of big brother while you slipped easily into the little brother role.

We talked about what it would be like for you to join us, having two car seats in the back, we planned to show you off to Grandparents and to take you to church and to wear you around while chasing your spunky almost 3 year old brother.

Little did we know that you and God had different plans for us. A completely different path to travel, a overgrown and wooded path that not many around us even knew existed.

That Sunday morning we had no idea how close we would cut things, or how different our lives would be. Forever. Despite spending the first month of your life dealing with emotions we never expected, events we could have never predicted in our wildest dreams, we still count ourselves so lucky to be your parents.

It has been a long month, one that started out with barely being able to touch or cuddle you, to now being able to feed you and actually see your eyes. It's amazing how far you have come. It was so long before I got to see those eyes again. Far too long.

You have been through more than anyone else I know, and you are only a month old.

Here are a few stats:

You weigh in at 7lbs and 11 ounces and are 53 cm long (20.8 inches or something like that). You are wearing size one diapers - they are huge on you. You were wearing preemie for a LONG time, but once you started retaining fluid after your first open heart surgery - they switched you to a size one after putting you on all of those diuretics. And boy, you were able to FILL them up for sure.

You are still wearing newborn clothes - in fact you have only been wearing clothes for about 3 days now. Your incision has healed nicely and you came off of most of your monitors and IV lines so you are allowed clothes.

You tend to run on the cool side very easily. We keep you wrapped up and your temp will still be below normal - yet you might even be a little sweaty under your little arms.

Occasionally you will get a line down your face - where one side will be a completely different color than the other side. Dr Jackson said that is just because you are a heart baby.

You are starting to look around more, take things in and track things. You aren't awake very much, I'm sure it's hard to recover from a surgery like that. You usually have an awake hour or two per shift.

You love to cuddle, and mommy loves it too!

We have only had you home for a mere 18 hours our so - before you got sick, but we cannot wait for what is to come. For you to come home. Again. You are our little heart warrior - you are stronger than the entire family combined, and you are nothing short of an absolute miracle after surviving what you did. Each day nurses come up to me and recall the day you came in - stating they can't believe you are the same baby. I'm so happy to hear that - it goes to show that God is SO GOOD. Caysen, if there is one thing I want you to get out of all of these trials you will go through in your little life - it's that God is taking care of you, and he will see you through it all. He has already seen you through so so so so much.

We love you to the moon and back, stay strong!!      

one month picture

I love this shot because he's looking at his Daddy. :)

Tuesday, July 16, 2013

Picking a surgery..

So after that terrible Sunday, we spent the next few days in shock trying to figure out what exactly this meant. What it meant for his future, for our future.

There were so many things up in the air. They told us he would need surgeries, but no one wanted to discuss or explain what these surgeries were because "why plan for it - you can't take a crashing baby to the OR". Well, that's true - but at the same time, what on earth was happening?

It was hard enough to deal with the fact that I didn't have a baby at home, I had a baby at the hospital. A very sick baby. A baby who might not be the same after it is all said and done. All while wondering if I would have a baby to take home in the end?

They explain that the only thing that was keeping him alive was the PDA vein that was open and allowing blood to flow through his heart. He has a very small aorta, combined with no left ventricle there was no blood pumping to the body. A few days after birth is when the PDA begins to close on its own. And when that happened is when he started crashing, that's when my baby started struggling to live.

At the hospital they continued to do various testing to determine his organ functioning. After a few rounds of FFP (Fresh Frozen Plasma) they were able to get his liver back on track so things would clot. They were checking his blood gases so frequently they had to give him more blood. He was still on a vent - they were having to add nitrogen to it as to not flood his lungs. He was breathings sub-atmospheric air. We breathe 21% oxygen, he was breathing only 17%.  His heart rate of course was still elevated and they were having a hard time getting his heart and lungs regulated the way they would like.

His kidneys weren't having any output. He was on TPN. He had MRIs/Echos/Ultrasound of Head. PICC lines inserted, arterial line removed from his umbilical cord and moved to his arm. That is how they check the blood pressure.

The head ultrasound showed that there was blood on his brain. Brain bleeds from lack of oxygen and build up of lactic acid. They weren't sure how severe so they did an MRI. MRI showed grade three - but the pediatric neurologist said there was also tissue damage which is a grade four. He mentioned that he wasn't sure how it would affect him, that it is rare for full term babies to have this sort of ischemic issue. The pediatric neurologist wouldn't come out and say "stroke" or determine really how things looked. He just mentioned over and over that it is too early to tell what may happen but he is likely to have issues as a result. We won't be able to tell until we want him to start hitting those developmental milestones.

So that was like a kick in the chest, where you lose all your air and you can't breathe for a bit afterwards. I knew it was likely and had been warned, but that doesn't make it an easy thing to hear.

The very next day I met with the pediatric cardiologist who wants to perform the surgeries on little C. She is quite a trip to listen to. She mentions that because of his brain bleeds he will not be a candidate to start the 3 necessary open heart surgeries as they all require heart and lung bypass. With brain bleeds they are guaranteed to make it worse, so they are unable to do anything of that sort. She explains he will have to have FOUR open heart surgeries now - the first one is called a Hybrid. This one involves placing a stent in his PDA vein to keep blood flowing through there and banding the pulmonary arteries. This will essentially "buy" us a few months for his brain to heal before he will need the first major open heart surgery called the Norwood.

As she explains all of these surgeries and how they are done - it's amazingly scary to hear. They literally will rewire the plumbing to his heart - and in the end my sweet little boy will essentially only have a two chambered heart - and it will do all of the pumping of blood to the organs, as they will have the rest of the blood drain directly to his lungs, making that a passive blood flow. It is absolutely insane to think of what it is that they can do.

Anyways - the surgeon is still quite a trip. She sort of talks circles around me. She gives us two options for how to proceed with the Hybrid - either by stent placement or injecting something into the PDA vein to keep it open. She gives these options - then basically tells us to pick which one - giving absolutely no direction to take. She was almost unhelpful when it came to that.

She mentions also that each time he goes on heart and lung bypass it will affect his brain. She explains heart and lung bypass as "literally freezing your child until there is no activity in any of the organs" and states that kids after being put on heart/lung bypass do not have normal MRIs afterwards. Then she reminds us that he will need this three times, on top of whatever damage has already been done to his brain.

He has so many obstacles to over come, and he's not even three weeks old!

He has his first surgery tomorrow - the stent placement and banding of the pulmonary arteries. It is taking place in the afternoon and will last four hours or so. If you are free - please take a second to send up some prayers for my little guy and for the surgeons working on him as they place the stent, crack his tiny chest and work on his walnut sized heart. I pray for steady hands, optimal decision making with stent size and placement and for God's will to be done. Thank you so much for your thoughts and prayers!

Tuesday, July 9, 2013

Almost Losing My Baby to a Congenital Heart Defect...

I delivered Caysen via C section on Thursday, June 27th. He came out crying and hollering, making all kinds of racket. I had my friend in the delivery room to take pictures since Husband doesn't do well with blood and guts.

While the doctor was stitching me up and finishing, they brought my sweet baby boy over to kiss on the cheek. They mentioned he was having problems breathing and took him to the nursery. They told me I would not be able to get up for 12 hours and they would bring my boy in once he was doing better. They said he just had too much fluid on his lungs from being c sectioned out. Finally, 12 hours later at ten at night they mentioned that I could go in to see him and try and nurse. He wasn't going to be able to leave as they still wanted to monitor him and he was on and IV, so I spent the night going back and forth every three hours to see/feed him. All was well and he got to come to my room the next morning. I took care of him all day and all that next night in my room. At one point during that night when nursing he started breathing/panting funny. I called the nurse in to check him out, they took him to the nursery and again told me the same thing about his panting. It was related to the fluid on his lungs and using a supplemental nursing system as my milk hadn't come in yet. The SNS was causing too much liquid at once they said, and he was getting out of breath. I checked again the next day with the nurse, the lactation lady AND our pediatrician. All said it was normal and he was fine. 

Discharged home. That night he didn't sleep well, definitely didn't nurse well, maybe only once at night. Finally got him to eat around ten am. He started panting again. It didn't get better. I called his pediatrician, left a message. Called again and spoke to a triage nurse. She said get him in to ER or Urgent Care. Luckily I picked the ER. 

We got to the ER where they poked him at least ten times to try and start an IV. No luck. In our 45 minutes down there he was getting bluer, colder and began to cry a cry I had never heard before. An unmistakable cry of pain, a cry as his body was shutting down, but we still had no idea just how serious it was. 

They transported him to the NICU, and when they saw him they got to work right away. They came out after a bit to tell us just how critical he was. You could tell by the grave looks on their faces that he wasn't doing well. A nurse practitioner came out to chat briefly with us and then get consent for an umbilical arterial line, as they couldn't get stuff in him to save him yet. Ironically, the NP that was working and came out to see us? Was the same lady who was working the nursery at the other hospital where he was born three days earlier. She's the one who took him back to the nursery while he was having his breathing problems. She recognized us and was able to go back and share our story with the doctor without getting much history since she already knew it. Kinda crazy. 

They worked on him for a long time. The doctor finally came out to talk to us personally. She told us repeatedly, "he's very sick, he's a sick little boy". She told us they were doing tests to see what it was. Either it was a metabolic issue or heart issue is what she said. We waited while they ran tests and tried to reverse the damage of his little body shutting down.  His blood sugar was less than 4, newborns need 40-200. They had to start him on sodium bicarbonate to reverse all of the lactic acid build up. He  was out on a vent, monitors, with tubes and wires going everywhere. 

Finally the doctor came back to get us. she showed us how to scrub in. she took us back to his room where he looked so fragile and delicate. They sat us down with a cardiologist in the room while other nurses and doctors buzzed and frenzied about, charting on laptops, adding more meds, he was already on nine or ten. They tell us we can't touch him, he de stats. We stare at the baby we were just holding and cuddling a few hours before, unable to sort our feelings. 

The cardiologist begins to speak. She pulls out a paper on a clipboard and it has a heart on it. His little heart was broken and no one knew. Shock went through Chris and I, tears, anger, frustration, we ran the gamut of emotions while she explained to us the diagnosis. Hypoplastic Left Heart Syndrome. Our son was essentially born without a working left ventricle. What does this mean? What do we do? How did no one catch this my ENTIRE pregnancy? How did they not catch it at the hospital? So many questions, so much up in the air.

She explains he will need a series of three surgeries - all of which will take place by the time he is about three. She explains it will be a tough road but it is manageable. It is so much to take in. All the while, we are sitting in his little NICU room while nurses buzz about, doing lab draws, giving blood, chasing his stats to keep him stable.

Turns out his kidneys had no output. His liver wasn't allowing him to clot, his heart was all over the place working overtime and they were trying to keep his lungs from flooding - because his oxygen stats were 100 percent, the ER didn't realize that his lungs were overworking, but his heart was not getting blood out to all of his organs.

It was such a hard day. Chris and I left over 12 hours later, exhausted, emotionally and physically drained from all of the crying. To go from having a baby three days earlier to almost losing a baby three days later is something no one should have to go through. I can't even begin to describe how tough it was, and how it has been a steep and tough road since.

More to come...

Thursday, July 4, 2013

Last Preggo Update

I can't even begin to describe how crazy life has gotten lately. Let me backtrack to where I left off.

I got a spinal tap on Tuesday June 18th. After another episode of increased blurriness and brightness in my vision - my vision decreased to 20/70 in my L eye and to 20/40 in my right. They could only assume that the pressures in my brain had gone up and wanted a lumbar puncture ASAP. So, they told me they would get me in - if not my neurologist would get me in himself in the ER. Well, they couldn't get me on the schedule, so he met me at the ER and performed the spinal tap on me himself.

He said he expected pressures to be in the upper 20s, normal range is 10-20. He had to stick me twice, first needle was too small and didn't produce the fluid results. Second needle worked. Ouch. And then pressures were 12. Stumped my neuro. He drained enough cerebral spinal fluid to create a new me.  He pulled out his little black book of neurology, ordered a laundry list of lab work to check for bacterial infection. He ordered things like toxoplasmosis, cat scratch fever, all kinds of crazy stuff. 

I woke up Wednesday and went to work. Before long I couldn't sit up right without my neck stiffening, my head pounding and vomiting. I went home and rested. That day, Dean McGee Eye Institute called and wanted to set up an appointment for that day. They were able to fit me in on Thursday and I found a driver (my mom) who could take me since I still could not sit upright. 

Thursday we drove to okc. I rode in the back, of course that's not safe, but I had no other choice. Arrived and spent most of the exam laying in my side in an upright chair. The doctor there was amazing and came to the conclusion that I was losing lots of color and vision but he believed 80 percent chance it would return. He diagnosed it optic neuritis and said it was either brought on by pregnancy hormones or was auto immune that was brought out instead of suppressed by pregnancy. I continued to be miserable from headaches. 

Woke up early Friday and headed back to the ER right after shift change. They got me in right away where I requested an epidural blood patch to fix the headaches. They wavered a bit but had no other treatment options so finally agreed. An epidural blood patch is where they draw blood from your arm and the. Immediately out it in your epidural space to help "patch" the holes and normalize pressures in your brain. Immediate relief. I spent the rest of my weekend resting and gimping round. Since my back had been through a lot and I was 38 weeks pregnant I was pretty stiff and sore. 

My OB appointment was that Monday. I went in and talked to my OB, and told him everything that had gone on and how the vision issues were in fact continuing to get worse and were pregnancy related. He wanted to do an induction that night! After talking with him we managed to to arrange an induction starting Wednesday night. I went back to work and the more I thought about it, and knowing I wasn't dilated or effaced at all, and he was still way up in the rafters, I decided to just request a c section for Thursday. I mean, I had already been through do much that past week and my back was still killing me, I just wanted it to be less stress on everyone. 

I worked Tuesday and then started my leave in Wednesday. Camden and I had a special day together, he came with me to my pre op appointment at the hospital and we did east he wanted to do which was go to chicken fil a and play and go swimming. We had a good time, stayed up past nap, took a nap together and snuggled. It was fantastic. 

Little did I know the end of my week and the beginning of the next were going to be a life changer in the most unexpected way...