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...

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...

36 weeks: a BIG update

Preggo Update -- LOTS going on. A WHOLE LOT. This post was typed about a week ago as tons more has happened since then. Will post more when I feel up to it!

 

So, the weekend of Memorial Day Weekend, I got a bad badheadache. It started on Sunday. I had a headache that whole week, that would NOT go away. I started to get worried when Thrusday my vision changed. It didn't improve Friday so I called my OB. He prescribed something for the headache and then I woke up Saturday with no headache finally, but my vision was still messed up. And when i say messed up? Like not fun. You know how you go outside and you come back in and everything is bright and blueish while your eyes adjust to the light? It was like that. Correction: is IS like that. Still. It also had tiny blurry spots oin my tight eye. Saturday I got in to my optomitrist so I could get things checked. He could see something going on but wanted to try least restrictive first, so he started with just lubricating drops for two days. No changes. So by Monday he put me on steroid eye drops every three hours.

 

Fingers crossed that would work.

 

And it didn't. Went back to my optomistrist on Tuesday. He was worried with how things look and set me up with an appointment with an ophthalmologist. I saw him by that friday - as I happened to call and see that they had a cancellation. Luckily, they got me in, told me there was definitely swelling on my optic nerves. Consulted with my OB and sent me for an MRI that day. 

 

Yep, an MRI at 36 weeks pregnant. Not so much fun laying on your back. Then the nice lady covered me up with a blanket which would be a nice gesture to anyone UNPREGNANT but instead I was burning up.

 

So I don't hear anything from the ophthalmologist until Monday. He calls to tell me the MRI is clear. I even had them check for the Sheldon that I had a while ago. No sign of him either. So they assumed that the pressure on the opic nerves is from Idiopathic Intercranial Hypertension. Ophthalmologist wants me to see a Neurologist. Had that appointment approximately 2 weeks after my eyesight changing for the first time.

 

And the doctor spent quite a bit of time with me. He recommended a spinal tap to decrease pressure, see if vision problems resolve and then to be put on a diuretic to keep the cerebral spinal fluid from builidng up again before delivery. It sounds like if I wait until delivery to have a spinal tap (before epidural) they are worried about lasting damage to my optic nerve. I will say, I do want to see again. Doctor mentioned he had seen plenty of people with this during pregnancy, but has never seen anyone present with this so late in their pregnancy. So, who knows.

 

Going to see where a spinal tap takes me and then I will be on the diuretic for a few months to be sure that I don't have this build up again and follow up with a neuro-ophthalmologist in okc. apparently there are only three in the atate, thats where they are located. Whew, lots of doctors appointments and bills. Crazy talk!

 

I have learned lots of things through this experience. In placing my faith in God, trusting that things will work out, not letting fear creep in, and most importantly, NOT taking things for granted. I am so blessed. I sitll have a healthy baby inside, I may not see clearly, but I can still see. I can't imagine how hard it is for peole that can't.

Here's my update:

 

How far along?: 36 weeks

Maternity clothes?: yes, for sure. All over please. Brought out my big "tent" shirts.

 

Sleep: not going so smooth. I hear EVERYTHING like normal on top of waking to pee at least three times a night. I can't turn over without waking up either, I usually sleep on one side until I goes numb, then I wake up to turn.

 

Best moment of the week: Picking a final name for 2.0. Being that much closer to full term!

Movement: Yes. Less than normal though, I think he's sleeping alot.

 

Food Cravings: Nothing in particular these days. Not like before. I really wanted Mexican food one night, so I got that.

Gender:  All boy!

Belly Button: Still popped and stretched thiiiiiiiin.

What I miss: Walking normal, turning in bed without having to wake up from my sleep, clothes fitting, working out, being thinner.

 

What I am looking forward to: Seeing again.

Weekly Wisdom: Having an MRI while 36 weeks pregnant is NOT comfortable, but can be done.

Big C Update: He still waffles between wanting to call him the other name or the ne we think we finally decided on. He prays for him on his own and will still kiss and huh him. Hope he's ready! 

Tornados.

All of these tornados lately have been pretty scary. Thursday night, we watched one form RIGHT over our house before heading a few miles away to the Blue Bell Creamery 

and towards more family. It was stressful, scary, and intense.

Friday night the meteorologists kept saying things like "the atmosphere is ripe" and that they expected it to be like Moore all over again. So stressful to hear.

The tornados moved in of course, where more of my family lives. You never like hearing them say "massive tornado on the ground" over and over. It was another stressful night sitting on the edge of our seats, waiting to hear from family, waiting to see if the tornados were going to move into our area.

I just have a message for the weather - I am SO over it. Playing hide and seek from the weather, the fatalities, Oklahoma needs a break! Husband drove to a town hit two weeks ago by a tornado the past two Saturdays to volunteer his time and help with cleanup. It's such a mess, so torn up, and there is still so much to be done. Some people literally have nothing.

It really makes you count your blessings, be thankful for all of those times we have escaped unscathed. We will not let the weather keep us down. And we will continue to help those locally who need it.

And? We may ponder the cost of purchasing a storm shelter.

33 almost 34 weeks : A Survey

How far along?: 33 weeks, 6 days according to my count. :)

Maternity clothes?: Yes, definitely yes. Please.

Sleep: Some nights good, some nights horrible! I had issues with nightmares a few times. I would wake up at three in and morning and then toss and turn for two hours until my alarm goes off. I feel horrible after a night like that. They were pretty unpleasant dreams about suicide and murders and gross stuff like that. Then like two days ago I slept all night and didn't even have to get up to pee.   

 

Best moment of the week: going to the doctor and hearing that 2.0 has turned and is head down (again!). So excited that he's facing downward.

Movement: Yes, finally a lot more now. Now that he's getting bigger and fluid levels are staying the same, I can definitely feel him more.

 

Food Cravings: Nothing really sticks out in particular. I'm not near as hungry these days (thank God - I've already packed on PLENTY of weight). It doesn't take a lot to fill me up these days, trying to enjoy that so I don't balloon up even worse.

Gender:  All boy!

Belly Button: Out on top, and stretched verrrrrry thin. In fact, I don't know that it can stretch anymore, that bad boy is shallow!

What I miss: Walking normal. Exercising without getting so winded or abdominal muscles sore. Fitting into clothes. Not having people make comments about how big I look, DAILY. Sheesh.

What I am looking forward to: Meeting this boy! I can't wait. I'm feeling so big that I can't wait to drop the weight and get moving. Let's do this!

Weekly Wisdom: Get to bed on time, cause sleeping will just get worse!

Milestones: being head down! yay!

 

Big C Update: Camden is doing great. He prays for baby brother all on his own now, he likes to kiss and hug him in my belly.  He knows what things will be for baby brother. He helped me to register at Target and Buy Buy Baby and enjoyed picking out things for baby brother. I can only hope and pray he will be a good accepting and helpful big brother!

Recently...

My boy. He was blowing dandelions and got it in his mouth! Not too thrilled about it either!

His favorite thing to do is "blow blow" with dad. He will talk about it for days and days!

My boys. With another boy that will be here soon to love on!

The Family Addition::How Does the Love Grow?

Using my rearview mirror the other day I looked back at my little boy in his car seat, chattering away about the red, yellow and green lights. It struck me how big he looked. So tall, his face thinned out, I noticed there's not much baby chub left on his face. His shorter hair after a haircut made him look that much more grown, the adorable little sparkle in his eye as he talks to me and catches me sneaking a glimpse of him in the rearview. It struck me, hitting me like a ton of bricks and almost taking my breath away, that he won't be my baby much longer. It won't be too long before there is an infant seat next to him. Until he has to share his Daddy's and my affection with another human being. He will have half the attention, half our time, and I worry that half the love isn't enough.

I know that people say your love will grow. It will multiply and there will be plenty to go around. That doesn't change the fact that I worry how that's possible. It's one of those things that it's hard to believe until you experience it. I'm sure it will be fine and my fears are unfounded, but that doesn't make it seem any easier.

Things are so cozy as our family of three. We are able to take turns parenting through the tantrums and fits as needed in the evenings. We can share responsibility of bathtime and teeth brushing giving the other person a reprieve. Once Camden is down we are able to spend time together or one of us gets the evening to hit the gym. We have our routines down, our parenting styles meshed - and here we are about to change it all with the addition of a newborn that will suck the time out of both of us and the sleep out of at least one of us. ;)

Will my adorable big boy feel neglected? Will he still get all the 1:1 time with each of us that he needs and craves? I feel so busy sometimes now, I know things are going to get much, much busier. But, all for the better and in the best way possible.

But it doesn't keep me from wondering how on earth it's all going to work out. I pray God will calm my fears, expand my love and especially my patience as I help my firstborn work out his little emotions regarding his changing status in the family. I pray He will give Camden a sweet big brother's heart full of love and adoration, and that this transition would go better than I could ever imagine.

We will find out in eight weeks or less!!