Friday, October 19, 2012

Saturday, July 28, 2012


I'm sure most expectant mothers are crazy busy with last-minute preparations during the last few weeks of pregnancy. As I enter into that last stage, I can't help but wonder what things I'd be stressing about and scrambling to get together if I wasn't in my situation. Would I be obsessing over every tiny detail of the baby's room? Would I be making my poor husband slave over steam-cleaning the carpets one more time? I sure hope I get that opportunity some day, but this time I'm making different kinds of preparations.

That awkward moment...

That awkward moment when you realize you've actually just typed "cremation for babies" into google. Yes, this is one of the things I've had to begin planning for. I had a moment where I just felt so sick that that is even a thing one would google. It's surreal, mind-boggling, I don't know even how to describe it. But it's something that has to be done. I don't want to be trying to scramble and figure out these details at the last minute when it actually happens. I am a control freak and compulsive planner anyway, I have to get this out of the way now. So now it's all I can think about until it's settled.

I mean where does one even begin? How do I pick a funeral home/crematory? How much is it going to cost? It's not like they have life insurance for babies, what can help pay for this? What are all my options? Luckily, Lynn over at the pediatric cardiologist has been AMAZING. I don't know if this is a standard thing that I should expect, but either way I feel that she has gone absolutely above and beyond for us. I expressed that I'd been wondering about this, and she offered to do some research for me. She put me in touch with a few different funeral homes, one in Gilbert that is privately owned and operated. She found out about their cost ranges and what is involved. She made some phone calls and put me in touch with a few local charities that help cover these types of costs. She also overnighted me a child loss bereavement package from the Banner Desert, with tons of resources to help cope. I can't express how much weight has been taken off my shoulders that I have some place to just start. 

I called one of the volunteers for the charity the Nick and Kelly fund, and she is going to email me a packet to apply for that opportunity. I just figure every little bit helps. Next week I'll have to make some calls around to the funeral homes and try to solidify one to provide services for us. We'd like to get him cremated and keep the remains in an urn. Then we have to figure out what type of urn we want. So, it's baby steps (pun intended) but I am getting there bit by bit.


Another thing that I need to start putting thought into is memory-making. I don't know how much time we'll get with him so I know that we've got to make the most of every moment. What do we want those moments to consist of? What experiences do we want our baby to have during his short time here? Is there certain music we'd like him to hear? Do we want to take him outside to experience the sunshine and fresh air? I want to breast feed him, change him, burp him, see him smile, laugh, cry. I want him to see us and know that we're his mommy and daddy and we love him so much. I want each of my family to get an opportunity to meet him and for him to meet them. I hope we have time for all of these things. 

Some of our co-workers gifted us a kit to make a necklace out of the baby's thumbprint. Another gave us a hand-knitted hat and set of booties. Still another made a hand-stitched onesie with "Baby Van Zant". The cardiologist office also gave us a set of booties. There will I'm sure be tons of pictures and video. That reminds me of something else I need to coordinate. Yet another co-worker, and Lynn also, gave me the name of a charitable organization, Now I Lay Me Down to Sleep. They have volunteer photographers who take baby pictures in the hospital, at no cost. Coincidentally, my good friend Jeremy had already referred me to them, as his sister is one of the volunteers. I keep putting off contacting her because I haven't felt up to dealing with that yet, but, it's getting down to the wire so I better get on that. It's just amazing how many people we've got looking out for us!


No More NSTs

They've stopped doing the non-stress tests and instead now we are just doing biophysical profiles (BPPs) twice a week. He wasn't doing well on the NSTs and the next step is a BPP anyway so in an effort to save me some stress the doctor decided it's best to go straight to the BPPs every time. He continues to pass those, which is comforting. 


We had a growth scan on 7/23 and as I suspected he is tiny. He's fallen below the 5th percentile :(.  In 3 weeks he only gained 9oz. Babies should be gaining an ounce/day at this point. The app I have on my phone says at week 37 the baby weighs around 6 1/3 lbs. My poor baby probably won't even make it to 5lbs by the time he's born. I mean it makes sense. His heart is not able to get proper nutrients around to his body so he's just not growing. It's just so sad. The only comforting thing is that the doc said that considering everything else he is facing when he's born, this doesn't really add a whole lot of extra stuff that I should worry myself about. I suppose it's better to have a smaller body that he will have to try to sustain on his own. Maybe it will give us more time? I don't know. . .

Delivery Plan

I think I've got a definitive answer that based on how he's doing now, I'll be allowed to go into labor spontaneously and labor/deliver naturally, proceeding to emergency c-section only if the baby starts to show signs of distress. But it sounds like based on their past experience with babies with heart defects, they believe I will end up having a c-section. I suppose I'll just have to give up worrying and wondering about it at this point. It's out of my control. I just want to do whatever will get him out alive. The other day they told me that if I have a c-section, once he comes out and they quickly get him dried off and stuff, he'll be right back by my side right away. My fear that he'll be whisked off and taken somewhere else away from me and I'll be stuck alone and wondering what is going on, has been quelled. 


Since I have a history of high blood pressure I'm really paranoid about getting preeclampsia. Now that I'm near the end of the pregnancy my BP has been high - not too much higher than normal for ME but it's still worrying me. I give urine samples all the time and there's never any protein so far so that is good. But the other morning I woke up with my hands swollen, face a little swollen, feet swollen which I've been having but not first thing in the morning. I'd been nauseous all the day before and been tossing and turning all night with some abdominal discomfort which I couldn't figure out if it was heartburn or, maybe it was contraction pain maybe I was going into labor??? I was just getting myself all worked up and over-analyzing every little thing. Then by the time the alarm went off I discovered all that swelling. I didn't have a headache or vision problems or anything though. But I just knew something was off.  I stayed home from work and made a dr. appointment. 

By the time I got there I was feeling a little better and the swelling had gone down a bit so I kind of felt dumb but I know it's better to be safe than sorry. They took my BP and it was the same as it was when I'd taken it at home earlier, 140/97, so that's pretty high. But I had no protein in my urine. Still they are having me do a 24 hour urine collection and I'm going later today to drop that off at the lab and give blood for more testing, and I'll have those results on Monday. Today when I woke up I could see my knuckles and veins in my hands again so I don't know what my deal was yesterday. Oh and while I was there they checked my cervix and it's still totally closed. So at least for a few more days I won't start to worry that I'm going into labor with every little twinge that I feel lol. If it does happen, we have the hospital bag pretty much packed so at least that's ready to go!

Preparing for a rest

Next week will be my last week at work and then I'm taking vacation until I deliver. Although I love my job very much it's just getting so hard to get through each day that I'm really looking forward to just staying home and resting. Knowing me I'll probably be bored and wondering what is going on at work anyway. But I know this is the best thing for me, I know it will be good to just take some time before all of this starts to go down. So this last week at work will be crazy trying to wrap up all the little loose ends and make sure everything is set to run smoothly after I'm gone. Did I mention before that I'm a control freak? It's hard to leave things to other and trust that they'll be done "right" when I'm gone but I've got to just give it up and give in. It's hard though. :)

Reaching out/thank you

I just want to take a moment to thank everyone for their love, support and encouragement through this. Every little text or comment really helps. More days than not I find myself crying off and on for hours and when I do make the effort to reach out, you guys always end up coming through for me and making me feel better, and I'm able to make it through another day. I need to reach out more, I know. It's hard for me, I don't know why. My co-workers have been so great too! My super-supportive boss coordinated a covered parking spot for me! When it comes to my work I know he doesn't expect 100% from me right now but he's also not coddling me either, which is appreciated. Another co-worker took me to my doc appointment one day when I realized I just probably shouldn't be driving myself in this condition (and Steve can't always leave work). Another coordinated meals for us for when we are on leave. It feels good to know that everyone cares about us so much.

Ok. Time to go now, and try to make it through another hour, and another day. Thanks for listening, everyone.

Friday, July 13, 2012

Done But Not Ready

***If this is your first time here, you can read the back-story under the heading above, A Tiny Heart.***

Non-Stress . . . Ha!

I go a few times a week to my OB to get a non-stress test (NST) which basically measures the baby's heart rate and how it responds to movement. It's kind of ironic that it's called a non-stress test because lately they have sure been causing me a lot of stress. The first several times he did well but then one day he didn't, and they had to proceed to a biophysical profile ultrasound (BPP). I was worried about what that might mean but he passed the BPP with flying colors, as usual, so that made me feel better. Then it happened again the next time I went in for the NST so they started scheduling me for the BPPs anyway just to make sure I'd be on the books for it and I wouldn't have to wait around for availability (we were there for 2.5 hours that day).  

So although he always passes the BPPs it seems that his heart rate is not as reactive as it should be which, I guess is to be expected considering everything. When he moves his heart rate should increase in response to the increased demand for blood and oxygen to his body, but it's not. Just further proof that he is going to have a hard time once he's out in the world. BUT yesterday he passed the NST and didn't have to have a BPP, so, I don't know. That's the thing, I just don't know for sure about anything these days. I know I'm going to have him but I don't know when, I know I'm going to lose him but I don't know when. I know it's going to be hard but I have no idea if I will pull through or fall apart.

A Tiny Baby

At my last growth ultrasound we found out that the baby's size/weight has dropped from the 30th percentile (from the last time), to the 14th, which is a big jump. Again not something to be surprised about but I'm just worried that at the next one in a few weeks he will measure below the 10th percentile which would fall below what is considered the normal range. He is going to have enough problems when he comes out he doesn't need low birth weight to be added into that. So it's just upsetting. My poor little guy.

A Good Day

This week we had our pediatric cardiologist appointment which is always nerve-wracking because we could find out that the baby's heart has gotten worse, or he has started developing hydrops, etc. This time the doc did not find anything much different than the last time, so that's good news. Even the clot in his left ventricle had not gotten any bigger. The only thing was that he said due to the evidence from the NSTs that the baby's heart is not very reactive, that is further indication that he would not do well during the labor and delivery process. So, further indication that I will have to have a c-section. I wish it didn't have to be that way but I certainly want to do whatever it takes to ensure that he makes it out alive. 

I had also invited my parents to the appointment, so they could see what the fetal echos are like, and get a chance to talk to the doctor. Only my dad was able to make it. My doctor is really great, and after talking to him I think my dad feels just like I do that I am in very good hands. He has had negative experiences with doctors in the past so I was glad that he could see I have a good one.  His name is Dr. Stock of Arizona Pediatric Cardiology Consultants and he and his whole team are so wonderful and caring. I would recommend them to anyone. 

Time is Flying

Today I hit 35 weeks which means only 5 weeks to go. Actually it means that it could be any day now. It honestly scares. the. shit. out of me. I'm not ready for this to be real! (Uh, not that I'll ever be ready.) I'm sure most pregnant women are nervous and scared about delivery day but . . . this is a little different to say the least. I'm not nervous about remembering everything in my hospital bag, I'm not scared of the pain. I'm pretty much sure I'm having a c-section anyway. But that also means I'll be stuck on the operating table for at least 30 minutes after he is born, getting stitched up and all that. What if he doesn't make it that long? This is, right now, my biggest fear and I can't even continue writing about it because I'm starting to cry.

Reality is starting to set in. I feel that I'm starting to unravel. I couldn't even go to work yesterday or today because my anxiety is so high. I just can't stand the thought of going through another day pretending everything is ok. I have this weird clash of emotions going on inside me, of not wanting to see or interact with anyone, but also not wanting to be alone. What do I do? People keep telling me I'm so strong . . . I really don't think so. I'm scared that this is it, I'm done. I've crossed over into crazy land and I don't know how to get back. 

Sunday, July 1, 2012


If this is your first time here, you can read the back-story under the heading above, A Tiny Heart.


At our appointment this week with the cardiologist they found a clot in the baby's left ventricle that wasn't there last time (2 weeks ago). This doesn't really mean anything except to confirm/support the previous findings that his left ventricle really wasn't doing much of anything. So the clot is evidence that the blood is just kind of sitting in there, coagulating. There's not really a danger of the clot coming out of the ventricle because well, if blood can't even make it out, how will a clot? There is a possibility of it growing so large as to start coming up out of the ventricle and it could start to block the atrium, but the doctor didn't make it sound like that was something that he was worried about at this point. Additionally, due to lack of use, the aorta where it comes out of the ventricle has become very small, kind of atrophied I guess. But, he has not yet developed any signs of hydrops, which is what his cardiomyopathy can progress into, and which would mean that his heart has declined so much as to begin to affect the other areas/systems of the body, and then I think they would want to take him out. So, overall this week it was good news, he's still doing good, which means that he gets to stay inside for now! 

Nature is Amazing 

It continues to amaze me how nature has created such a perfect environment to sustain life. Event with a heart that barely functions, somehow our little guy continues to grow and thrive, being connected to me. Each time we get an ultrasound to check his "biophysical profile", he passes with flying colors! My amniotic fluid is great, baby is growing on schedule, he's SO active, just movin' and groovin' all the time in there! It's just so mind-boggling that he is fine right now in every way, except his poor little heart just won't be able to sustain that once he comes out. It almost makes this harder to take, than if there were also other things wrong with him. Someone hurry up and invent an artificial womb! We'll just connect him to that once he comes out, and he'll be fine. :) 

Technology is Amazing

Yesterday we went to get a 3D/4D ultrasound. I thought it was important to try and capture as many moments and memories of him as possible. (Especially with the possibility of him not even making it out, this might be the only way to see him live in action.) I just couldn't pass up the opportunity and I found a great place in Chandler called Stork Vision, and it was only $169, so not too bad. What a cool experience this was! My mom, dad, sister and brother where there, in addition to Steve of course. We got tons of great pictures and video of him! It's crazy how realistic the photos are, it looks like just a regular picture of a baby almost. We got to see his little hands and feet (feet look just like dad's), he smiled a bit and even opened his mouth/moved it around almost like he was talking. It even looks like he has a dimple! I'm so glad we were able to have this experience and share it with my whole family.

Getting Harder

Although I still feel that I am doing amazingly well coping with this, it continues to get harder and harder every day. I'm constantly stifling the emotions that are persistently welling up inside me. I don't really know if that's the best thing to do or not, but it's what I'm doing. It's getting harder and harder to focus and concentrate at work as my mind wanders . . . even at home, I find that I can't even pay attention when watching a tv show or movie, so I just end up not watching it. I'm in desperate need of distractions, but nothing will work anyway, so I just sit there being numb and blah. I kind of feel like I'm sitting in front of a tsunami just calmly watching it inch closer and closer, and waiting for it to envelop me. I just hope I don't drown when it gets here.

Saturday, June 23, 2012


Today I created this blog and wrote my story so far, found under the heading above, "A Tiny Heart".