Tuesday, August 30, 2011


I haven't been posting because I feel like a fraud.

In my last real post, Thursday night, I wrote how I intended to make "me time", how I was just going to plan it and make it happen because I am worth it.  Unfortunately, I was quickly reminded the next morning of why I don't normally have me time: the Dancing Queen's precarious health.  We spend so much time on doctor's appointments, therapy, procedures, etc, that "me time" is swallowed up by being a "normal" family, work, and sleep. And I can't just make "me time" happen unless I forgo sleep (much like I am doing right at this moment).

That is why I feel like a fraud. I promised to myself only a couple of days ago that I was going to make time for me and the very next morning, the promise was broken. I don't know how to rectify this or if rectification is necessary, but I do know that I don't feel right.  I feel guilty for declaring that I enjoyed the time away from my kids because for a moment I didn't realize that the Dancing Queen wasn't doing well (because I didn't see her for a couple of days). I feel guilty for making myself a promise (that was told to the world no less) and know it can't be kept (not with DQ home from school two days, three appointments this week alone, then school starting next week).

And maybe "guilt" isn't even the right word. But I don't feel right about my "me" post, but I also feel like I was right in the sentiment behind it. I am worth "me time". I am more than just my family and work, but in order to keep it all going, I have to continue putting myself further behind.

I also don't feel right about wanting to take time away from my kids and taking care of them because it is not their fault either. As much as I didn't ask to be the parent of a special need's child, the Dancing Queen didn't ask to be born with a horrific set of conditions that threaten her life and make everything more difficult, even the easy stuff like, breathing and eating.

And so I feel like a fraud. My statements on this blog last Thursday, while heart-felt at the time, were not quite right. And this blog is merely an extension of me, so I have felt not quite right. I am not that together. It is not as easy as scheduling "me time".

Sunday, August 28, 2011

Saturday Afternoon

 This is what a Saturday afternoon is all about!

Thursday, August 25, 2011

Me Time

We got a surprise this week. My mom came to watch the kids on Tuesday when the Dancing Queen couldn't go to school because of her fever the night before and at the end of the night, she took the kids home for the week.  (Their cousins are in town from out of state and she wanted them all to spend time together. And she always dreamed of being a full time baby sitter for her grandkids, just as my paternal grandma did for us.)

Anyway, I found myself sans kids for several days. The Mad Scientist and I think it is probably the longest we have ever been away from the Dancing Queen.  (She has been knocked unconscious for much longer periods of time, but we were still by her side.)

It was nice. I was able to sleep in later in the morning and get to work earlier. And the only thing keeping me awake at night was myself. There was no crying, no nightmares, no worrying that the kids are too cold and wondering if I should check on them.  It was very freeing.

The best part of it all was getting up in the morning and having the house all to myself. I made coffee and sat at my computer, reading what I wanted without interruption. It was so very wonderful.

Of course, I have been going through kid withdrawl and I am beyond excited that my kids will be home tomorrow evening. I miss them so much, especially when so many heart kids are going through very rough times. I just want to go to their room right now and hug them like I do every night, but they are not there.

Still, this time away from my sweet babies made me realize that while I have been very good about getting myself out of the funk I was in earlier this year, I still have a long way to go in making time for just me. I've been better. This blog is good for that. I take time to write posts when I need to get my thoughts out there.  But, I still don't have enough time set aside for me to be me. I don't normally have time to sit back and enjoy my coffee. I'm either guzzling it on the way out the door, leaving it untouched on the counter, or drinking at my desk at work.

The biggest difference that I noticed with the kids gone is that I feel less guilt. If I take the time to check my email or read the news in the mornings, I usually feel guilty because I should be spending that time with the kids or I should be making their breakfast so we get out the door quicker, so I get to work quicker, so I get home quicker and actually manage to see the kids before they go to bed. But this week, I didn't feel guilty because the only thing I had to do was get myself to work and back. I still saw the Mad Scientist. We had some nice dinners together.

The moral of the story is that that I am tired of the guilt. And tired of no me time.

So, when the kids come back, I intend to change my attitude about myself. I am worth more. And being a working mom doesn't mean that I have to put myself last on the priority list. If I prioritize myself and know I have time set aside for just me, then I think the rest will fall into place.

If I schedule "me time", just like I schedule everything else, I should be able to make it happen. If I know there will be me time, I won't try to continuously sneak in a minute here or there to be me. I can enjoy my time with my kids because that is kid time. I can work when at work because it is work time. I can fully be with my husband when I'm with my husband because it his time. And when it is my time with just me, everyone else can fend for themselves. I think that sounds fair. I am worth it!

What do you do to not lose yourself as a mom?

Please, Help Me!

I started this blog as my place to let it out. To yell at the world since there were no blogs that I could find with other heart moms who work full time as a lawyer.  Nobody else was trying to balance with all of the extra stuff that I have going on. I had no intention of getting followers or any such stuff. This blog was purely my outlet.

All of that remains true. I have no intention of trying to take my blog to the next level, of putting in the enormous energies required to build a huge following or of marketing myself. But, I have learned that there are a lot of moms out there that I connect with, even if they are not heart moms or they don't have a job or they are not even moms at all. I really enjoy meeting people in the blogosphere and social media.

I really enjoy blogging too, but I want to connect more because that is what is exciting.  I created a Facebook page so that I could more fully interact with people outside of comments to the blog (which are not all that interactive--need to work on better comment functionality when I find time).  Facebook is working very well for the purpose I intended.  However, there is one big, huge problem with the Facebook page: I am compulsive.

174597_20531316728_2866555_nWhat does that have to do with Facebook, you ask. Well, it is simple. In order to have a proper Facebook name for my page, I need to have at least 25 people like me. I only have 20. And the compulsive side of me is driven crazy that there are a bunch of crazy numbers at the end of my Facebook page. I mean look at how ugly this link is: http://www.facebook.com/pages/Funambulism-for-Beginners/178233102225008.  I really just want to name it something easy to remember and not quite so random. So, can you please help me out and like my facebook page if you haven't already? And if you have already liked the page, ask a friend to like it for me. If you don't want to see my posts, I won't be offended if you hide me. My compulsive side just can't handle looking at those crazy numbers any more! And once I am able to change the name, I'm sure Facebook can't take it away, so you can unlike the page and I'll be fine with that too.  The numbers have been driving me batty for over 4 months.

(And now I will lose some of my followers because they realize I am a wee bit crazy and I'm okay with that cause I am a wee bit crazy.)

Anywho, since you all know I'm crazy now. I also joined twitter because a lot more conversations take place on twitter than on Facebook. The Twitter address is lovely: http://twitter.com/MomOnALine and even better is the simple @MomOnALine. See, no silly numbers to muck the whole thing up, but I still have problems there as well.  The problem with Twitter is that I don't have a ton of time and always feel like I'm jumping into somebody else's conversations and don't know what to do or how to do it. Can any experienced tweeps help me out and tell me what I should do?  Would lists help? I'm not certain of their particular purpose. Are they to help others find like-minded individuals or are they for something else? And how do I stop people from posting to me with sales junk? (I've been blocking them.)

I know if I dedicated a good amount of time to tweeting, I could get it. But, I don't really have the time to dedicate. Perhaps that means I shouldn't tweet? I don't know. Can you help me?

Evidently, I'm a social media dweeb and I need help!

Please like my Facebook page by following the link below:


And if you are on twitter and want to tweet me advice, I can be found at the link below or @MomOnALine:

Wednesday, August 24, 2011

Wordless Wednesday: Polar Bear Beach Party

Here is the answer to last week's quiz. I know it stumped you all because I only got two answers (-;

On Saturday, we celebrated TRex's 5th birthday at the beach with a polar bear beach party!
Sand toys for all of the kids!
Amazing polar bear cake made by my sister, the Editor! (I made the swimming polar bears.)

A sword! TRex got 3, so everybody could be a pirate!

We couldn't get the candle to light.
Playing with the gift he wanted his "entire life".
DQ the pirate!

Tuesday, August 23, 2011

Super Hero Dreams

My son is fascinated with super heroes. At five, he doesn't know much about them, but hears about super heroes from his friends, he has seen The Incredibles many times, and he has spider man pjammies and a wolverine toy given to him by friends a while ago. That is the extent of his knowledge.

But even with his limited understanding, he still knows that super heroes don't exist in our world.  He is certain, however, that they live in another world. (Just as he is certain the dinosaurs are not extinct in another world and the cartoons on tv live in another world.) As TRex sees it, we could meet the super heroes (and dinosaurs and Jake and the Neverland Pirates), if we just visit their worlds. TRex knows that he can't get to those worlds (yet), but it doesn't stop him from believing in super heroes.

So, as we shopped for birthday party supplies, TRex told me of his plan. He and two friends intend to become super heroes when they grow up so that we have super heroes in our world. That way, there will no longer be bad guys.

TRex's fear of bad guys doing bad things to us is also a constant theme these days.  I don't know what these bad guys are or what he is afraid of specifically, but he is doesn't want the bad guys in our house or around us or in our world at all.

And despite his overwhelming fear of most everything, my son wants to grow up to save our world and rid us of all bad guys. He has decided that the military, FBI, and police are not adequate to take care of this task because they are already in our world and bad guys are still here.  He is certain we need a super hero and since nobody else is doing the job, he will do it.  TRex is does not know what super powers he will need to achieve his goal, but he thinks being able to spit webs would probably help.

If anyone can be the super hero for this world, it would be TRex. His empathy makes him want to help. Always. He always wants to ease pain when he knows about it--even if he causes the pain.  When fighting with DQ, if he hurts her and she cries, usually, his first response is to try to comfort (doesn't normally work because DQ is pissed off).  TRex has a strong sense of fairness and fights for what he thinks is right.

I know TRex would make a great super hero. I won't tell him it's not possible. I'm not about to shatter his dreams (much like I never tell the Dancing Queen she is not going to grow up to be Thomas the Train). I want TRex to hold onto the idea that he can defeat all of the bad guys and make our world better for as long as he can. I hope to give him the tools to make his dream a reality (well, maybe not the spitting webs out of his body part).

Will TRex be able to get rid of all the bad guys? Probably not, but one person can effect positive change in their world. And if TRex wants our world to look a little more like the worlds of his imagination, where no bad guys exist, I want to help him do that.

Think about it.  If we all decided to be super heros and did our part to rid our world of bad guys, peace might not only exist in the imagination of a five year old.

Sunday, August 21, 2011

It is exhausting

Yesterday, we celebrated TRex's birthday. As I alluded in my last post, I was very busy all last week with work and preparing for that party. I promise, I will post pictures and show what fun was had. But that will have to wait until later.  Today, I'm exhausted.

I'd like to say I'm physically exhausted from my crazy busy week at work, lots of extra time spent on putting the birthday party together, little to no sleep, and the zillion extra obstacles sent our way (like a dead battery when all we wanted to do was get the melting down children home or arriving home find trees on top of houses and people looking around lost--remnants of a huge storm that luckily did little damage to us). I'd like to say that is what has me exhausted. It did. Last night. I couldn't keep my eyes open to eat dinner. I was bone tired, but slept well for the most part.

None of that plays a role in this exhaustion. Today, I'm mentally exhausted. Today, is one of those days I want to roll into a ball in the corner and cry.

Yesterday morning, on the way to TRex's birthday party with Ma, the Dancing Queen vomited in the car. We didn't think much of it because we all thought it was probably excitement for the party. It had been built up huge all summer. And DQ did have a slightly runny nose while we were there, but we were swimming. That happens.  And she seemed totally fine otherwise. She ate (that's huge), she played, she had so much fun.

We started to get concerned near bed time, but DQ was fine. We checked her ears. They were fine. She slept fine. But, this morning, DQ had a runny nose. We went to breakfast at our favorite place because our house was empty of food. DQ took her first sip of juice and we were done. I tried to run out of the restaurant with her, but we didn't quite make it. Maybe 10 feet from the door, all of the mucus came up and out over my shoulder, down my back, and a little on her. We ran into the rain, DQ crying and upset.

An hour and a half later, we were home, playing and I went to move DQ's hair from her face. I couldn't. Her ear drum had exploded again. There was blood and gunk streaming down her cheek and into her hair where this morning it had been fine.

The Dancing Queen has an ear infection. Again.

Perhaps this seems tiny to you dear readers, but to us, this is just one more in the a long line of ear infections. DQ saw her ENT not but 6 days ago. The last ear infection from a couple of weeks ago was so bad that it burst a hole in her ear drum and knocked her third set of tubes out. The ENT ordered us to keep her ears healthy until he saw her again in 6 weeks when he would planto put the 4th set of tubes in in less than 2 years. I guess we failed there.

We have lived this same scenario: the vomiting, the ruptured ear, the pain, the crying, so many times. I no longer have count.  The Dancing Queen has been on antibiotics continuously since October 2010 (and before then, fairly regularly as well, but I use her last open hear surgery as the cut off since she was healthy then). For a couple of months, there was talk of putting her on IVIG (donated immunoglobins to up her immune system), but her immunologist changed his mind and didn't think it would help. Now, DQ just goes through course after course after course of antibiotics. And her left ear drum continuously gets damaged. And my poor baby cries because of the pain and she cries because of the things her illnesses deny her.

Today, she cried her heart out because she wanted to eat at our favorite restaurant (even though she wouldn't have eaten a thing). We had promised. We were there. We had to leave. And DQ knows why. She feels like she is being punished for being sick. We try so hard to not let her feel that way, to let her know we are not angry and that leaving is not a punishment, that we will go back when she is feeling better, but she is 3 and doesn't understand. My heart breaks a little more with each of these instances because as she gets older, she understands more and more.

I've watched my daughter endure so much pain, so much suffering, so many tests, procedures, and surgeries. I've held her as she vomited continuously because her digestive system was too slow because of heart failure. I've held her down so she could be poked and prodded. I've signed off on slicing her open and spreading her ribs. I've stood there looking at her scared eyes as dozens of doctors and nurses have worked over her body. All of that was so very hard to do, but each instance was finite.

With these ears and this pain and suffering, it is continuous cycle. It is always there. How much longer can we last? How much more can a little girl take?

A week ago, I found the notes that were taken during the multidisciplinary conference right after we had been given DQ's initial diagnoses. In those notes, the geneticist wrote that hearing loss is common for people with DiGeorge Syndrome due to boney anomalies in the ear or frequent infection.  Frequent ear infection. Is hearing loss next?

When will the Dancing Queen catch a break? Can't we have one month without pain? Can't we go three weeks without antibiotics? Can't she feel good for a moment?

Friday, August 19, 2011

Quiz Time

I've been planning and planning, getting stuff together.  It has been a lot of work. Anyone have a guess what I've been doing? I'll give you a couple of hints below (and if you are friends with me in real life on Facebook, don't ruin the guesses cause you already know). And at some point in the future, I will reveal where I've been spending my time (outside of work, cause I still go there most of time).
Hint #1
Hint #2
  Hint #3
Hint #4
Any guesses?

Tuesday, August 16, 2011

Take Me Back Tuesdays: TRex

Five years ago today around 7:00am, I headed to my obstetrician's office for my weekly visit. I was 37 weeks pregnant in what had been a very healthy, normal pregnancy. I had felt no labor pains, shown no signs of impending labor, so I went into my appointment thinking it was same old, same old.

I stood on scale, peed in a cup, then they took my blood pressure. It was high, really high. So, they had me lay down for 10 minutes and took my blood pressure again. Still crazy high. Then I told the doc about the headache I had been experiencing for the previous couple of days. I was immediately sent to the hospital for observation for preeclampsia.

I was just being observed though, so I told my husband and mom not to come. Good thing they didn't listen because by the time my husband arrived, I was admitted, started on magnesium, and being induced. I was petrified and then I was just hot (from the magnesium) and miserable.

Pitocin was started around noon on Wednesday, August 16, 2006. By 7:00 p.m. that night, I had had nothing to eat or drink since 7:00 am, I was on complete bed rest, I was starting to have induced contractions, and I was incredibly hot. My family surrounded me, waiting for the arrival of my son. We were told he would arrive no later than Friday morning.  He had different plans.

By Thursday afternoon, I was only dilated 3 cm, but they gave me my first epidural because the pain was so intense. And I was still so very, very hot from the magnesium. On top of all that, I developed an allergic reaction to something and my face swelled up like crazy and I remember I kept scratching my eyes. I looked like I was totally beaten up.

By late Friday afternoon, I was still only dilated 3 cm, had had at least one more epidural. I hadn't had anything to eat or drink (save a few ice chips) since Wednesday at 7:00 am.  I hadn't left the delivery room table since Wednesday at 11:00 am and I was terribly weak and exhausted.  Then, I started to have pushing contractions.

The pushing contractions continued through Friday night and Saturday morning. Yet, I was only 3 cm dilated. Around 4:00am, baby TRex started to go into distress from all of the banging on the closed wall that was cervix. The pitocin was stopped. Thankfully, TRex recovered and my doctor asked me if I wanted to continue trying for a natural delivery or have a c-section. Despite being very weak, I chose to continue the pitocin. Less than half an hour later though, I could no longer do it. I had nothing left. 

TRex was born via emergency c-section the morning of Saturday, August 19, 2006. The Mad Scientist was immediately able to hold him and love on him. He held baby TRex up to me so I could kiss his sweet little head before I was whisked away to recovery. 
It's been five years, but I remember so clearly sitting in the hospital with my sweet boy for the first time. I am so grateful for such a wonderful little boy. I would gladly do it all over again, magnesium, pitocin, and all, just for him.

Monday, August 15, 2011

Every Heart Has a Story: Pulmonary Hypertension

My first time in the cramped, dark office, I was eight months pregnant, listening to him explain truncus arteriosus, the congenital heart defect they thought my unborn baby had, and the surgery she would undergo to help her survive.

My second time in the office, I was in a wheel chair, having recently given birth. My baby, the Dancing Queen, had just had her first heart catheterization at one day old and he explained to us the heart defects she actually had (tetralogy of fallot with pulmonary atresia) and the surgery she would need at three days old.

My third time in the cramped office, he was letting us know that he had no answers. He did not know why DQ was not getting better, why she was still so sick several weeks after surgery. He explained that he may have to go in and replace the shunt he had placed, even though he'd never done it before. He had no answers . . .

So, a year later, when I entered his office for a fourth time, with my one-year-old on my hip, I was understandably shaken. I sat on the worn couch, looking out the window, hoping not to cry. Today, I can't remember if I did cry or not, but what I do remember is his answer to my question of whether DQ would have more energy, eat better, be more like an average kid after her surgery. His response was "no". He said she was already a pretty active child and likely wouldn't have the 180 turnaround that so many other parents saw with their children. I chose not to believe him. I wish I would have.
DQ a week before her surgery in 2009.
In April 2009, a 13 month old Dancing Queen underwent her "full-repair" (patched the huge hole between her two ventricles, shaved her stiff and thick tricuspid valve, widened the pulmonary arteries, and patched the aorta so it didn't open above the outflow and the inflow of the heart), but the surgeon merely called it a tune-up. If only I had heard that statement for what it really meant. I assumed the doc called it a tune-up because the homograft they used to connect her heart to her pulmonary arteries would need to be replaced, not that she would need any other type of surgery. And even after DQ was in the hospital for 3 weeks post op, was on a ventilator for a week, and had to be re-intubated after the vent was first taken off, I still thought she was going to be amazingly better after her repair. I held an amazing optimism.
DQ immediately post-op April 2009
Instead, after getting home, DQ remained fairly weak and actually got worse. She spent a lot of time that summer in the hospital, sick. Finally, in August, it was determined that DQ had pulmonary hypertension (elevated pressure in the pulmonary arteries, which was causing her heart to work extra hard, damaging it, and causing damage to her already small pulmonary arteries). I didn't know much about PH at that time, so I googled it. That was a bad idea. (Much of the data on the general web about PH gives grim prognoses--less than 2 years to live after onset.)  After reading a couple of pages, I stopped, too scared to even think of the possibility. I held onto the one positive nugget I found: if the underlying cause can be corrected, PH can go away. I figured the docs would determine why her CHDs were now causing PH. DQ's cardiologist had mentioned that DQ's right pulmonary artery had pinched down following surgery and that could possibly cause the elevated pressures. She did indicate that would be highly unusual, but I ignored the doubt and hung on to only positive possibilities.
DQ learned to stand in a hospital bed in June 2009 at 16 months old.
In July 2009, DQ perfected standing in a hospital bed.
In September, DQ had her fifth heart catheterization and the doctor ballooned and stented her right pulmonary artery where it had been pinched. It was believed at the time that the simple stent had reduced DQ's pulmonary pressures. We were told for the first time after that cath that DQ had moderate pulmonary vascular disease. Her pulmonary arteries are like a tree without leaves rather than a tree with leaves as they should be. We were told the stent, with the increased blood flow, should help those PAs grow along with lowering the pulmonary pressures.

A follow up echocardiogram confirmed the lower pressures. I was ecstatic at the numbers. I held on to those beautiful numbers, waiting for the miraculous turnaround. But all that I saw was DQ not doing well. She continued to do worse. I kept having to call the cardiologist because DQ was swollen. We kept having to up her diruectics when the numbers said there was no need for the medicines. Yet, I still let myself believe the positive.

In December 2009, DQ saw the ENT because she kept getting ear infections. The ENT wanted to place tubes, but needed cardiac clearance for the anesthesia. It was at that appointment that we learned DQ still had pulmonary hypertension (the previous echo had been wrong). It was at that point that I could no longer hide behind the positive.

DQ's cardiologist explained that DQ's PH was likely caused by the pulmonary vascular disease (hypoplastic distal pulmonary arteries) and, accordingly, could not be treated through any means currently known to science. She suggested we see DQ's pulmonologist, but left us with a grim reality.

The next week, DQ and I waited two hours to see the pulmonologist. When he finally came in, he listened to my story, and said he had nothing. He ordered DQ to be placed on oxygen at night to help her lungs get a break, but he gave me no other hope. When I asked him the prognosis, his response was "you already know how bad this is. I have nothing more to offer you." Needless to say, our holidays were not that great in 2009. We grieved a lot and spent a ton of time together as a family, loving our very sick little girl.
This picture was taken the day after meeting with the pulmonologist. Ma tried to help distract us with cookies! Or was she just trying to soak up as much of DQ as she could? I think it was both.
While the holidays had a very grim shadow, we did still have some fun.
When I wasn't spending time with DQ, I was making calls. I was searching the internet. I was posting requests. I did everything in my power to find every pediatric PH specialist in the country. I contacted them all. Almost all of them responded to me with a fairly uniform answer: "PH caused by pulmonary vascular disease cannot be treated."

By the end of January 2010, I was desperate. I left messages for DQ's cardiologist, but the messages never seemed to get through. So, I finally sent a fax to DQ's cardiologist with a huge list of questions. Within an hour, she called me back. An hour later, DQ had a cath set up for the next week. The local docs were no longer going to give up on my girl and I wasn't about to stop trying to save her.

At the beginning of February, she had her 6th heart catheterization. The docs learned that DQ's lungs responded to nitrogen, so they started her on revatio (a.k.a. sildenafil, a.k.a. viagra). But, she developed pneumonia and stayed hospitalized for 10 days. Upon discharge, we weren't given any promises and were told good luck.
DQ in the hospital after that February cath and pneumonia. Here, she is watching "Cars" or "Baby Signing Time", her favorite videos then and now.
Through the next several months, I continued to search for another answer, as we grew more and more tired from having to give Revatio three times a day, meaning staying up until 11:00pm every single night to give the final dose of the day. And yet, each time DQ went to the cardiologist, nothing would change.

Finally, in April or May, as I stood by DQ's hospital bed (respiratory virus), my cell phone began to ring. It was a PH specialist from California. He was the first doctor who did not dismiss DQ's case as hopeless. He offered to see her.We just had to get her healthy, keep her healthy, and find a time to travel.

We waited and waited and finally, DQ went to see the PH specialist the end of July 2010. She had a cardiac MRI and examination. After it was all said and done, the PH specialist stated that DQ's pressures were likely originating from her heart because of her valveless conduit and a pseudo-aneurism in her conduit (things we knew about for over a year). He also explained that it was typical for someone with DQ's mix of CHDs to start declining without real explanation or solution, but just not usually as quickly as she had. Usually, the decline starts in the teenage years. He suggested that DQ's best possibility was replacing the conduit with a valved one. He didn't think that would solve everything and may not work at all, but it was the only idea. He pushed to have the surgery completed within a month so hopefully DQ's damaged heart could start to heal.
Just arrived at our hotel after a long flight.
Enjoying an ocean view.
My sweet girl, chillin after a long day at the ocean, following two very long days at the hospital.
Upon our return, I spoke with DQ's primary cardiologist.  She didn't think surgery was going to help DQ either, but didn't think it would hurt. She had no other ideas and left it up to us, saying she would support either choice. We opted to talk with DQ's surgeon, but he was on vacation.  So, we spent August on pins and needles, not knowing what to do.  Should we put our child through another open heart surgery? If we do it, will the local surgeons agree with it? Should we have the local surgeons operate if they agree, but don't believe it is necessary? Should we have the surgery done in California, so far from home with doctors and nurses we don't know and don't know DQ? There were so many unknowns and one sick little girl.

Finally, the surgeon talked with DQ's primary cardiologist and indicated that he thought DQ should have surgery. He would do it and he would put DQ on his calendar, but first we had to come down to his office, that same cramped room with the same worn brown couch, for an examination.

And so, I entered that cramped office once again in late summer 2010, still not knowing whether the surgeon agreed to the surgery because we were going to do it anyway or if he believed it was the best option. I wasn't going to hand my baby over to anyone who didn't believe in what they were doing, even if I had trusted them over and over before. Fortunately, we left knowing that everyone was in agreement.

On Monday, September 20, 2010, I handed my sweet toddler over to the surgeons once again. She left me, drugged out on versed, thinking her pacifier was a riot around 7:40 am. Seriously, she was waving it in front of her face, giggling. Around 9:45am, we were told the surgery was starting. It takes a good two hours to get all of the lines in and anesthesia properly complete. It took over an hour to get through DQ's sternum because of all of the scar tissue she had from open her chest multiple times. She went on the heart-lung bypass machine around 12:30 pm and came off around 4:00pm. At 7:00pm, they came to get us so we could watch our girl on her way from the OR up to the PICU. I gave her one more kiss.
Playing in pre-op.
Giggling at her pacifier, doped up on tons of versed.
It took 11 hours in the OR to make our miracle happen. What wasn't evident from images produced by numerous echocardiograms, heart catherterizations, and an MRI was that DQ's tricuspid valve had a huge hole between two of the leaflets, her PFO remained open (small hole to upper chambers of the heart), and the stent that had been placed in the right pulmonary artery the year before, was blocking blood flow to the left lung. On that Monday, my favorite surgeon fixed all of those things and he replaced DQ's right ventricle to pulmonary artery conduit with a valved, porcine (pig) conduit.
DQ immediately post-op, September 2010.
My baby was able to come off of the ventilator the very next day! She was home by that Saturday. She was miraculously better! So much better than anyone had hoped.
A couple days post-op, looking ready to go home.
Exactly one week post-op, home and doing well.
Eleven months later, DQ's pulmonary pressures have decreased. They are still higher than normal, but no longer dangerous. She is still dependent upon a lot of medications that the docs wouldn't expect, but since they help her, we continue their use. DQ's last echo was a couple of weeks ago and her heart has continued to get smaller (a very good thing) and the leak in her tricuspid valve is almost non-existent. These are all signs that surgery was a success and my push to find answers so worth it. My baby's heart is the best it ever has been and will be.

The surgeon did explain that there is nothing he can do for her distal pulmonary arteries though. That he cannot make them branch and grow. And unlike most cases, DQ cannot have more stents inserted into her main pulmonary arteries to make them bigger so that the distal arteries can grow. Placing any stents will only cut off blood flow to the other parts of DQ's lungs because of their odd placement.

So, we hope with time and better health that DQ's pulmonary arteries will grow on their own. But we were warned that if they don't grow more than proportionately, we will be in the same place again, but without anything to fix. At some point, without extra growth, DQ's pulmonary arteries will no longer be able to sustain her and the pressures will increase again because her heart will start working harder to try to force blood to the lungs to get oxygenated better. And at some point, she will be desperately sick again. I'm holding out hope for new technologies and medications.

Practically speaking though, I am enjoying my time with my beautiful daughter, soaking her up. Trying not to let her precarious future take away from her love of life.
Dancing Queen in August 2011.

The Dancing Queen's story from conception and my post from last year's Every Heart Has a Story can be found on the navigation bar at "Dancing Queen" and a fuller description of her heart defects is on the navigation bar at "I'm a Heart Mom". I also maintain a carepage for DQ that is just about her health and specifically her story. If you want to know more or want to follow DQ, send me an email at momonaline (at) gmail (dot) com.

Finally, if you haven't stopped by Stefenie's blog and read the other heart stories posted there, please do so. Or, if you are a CHDer or a family member of a CHDer, write up your heart story, and link-up with the rest of us.

Saturday, August 13, 2011

Momentary Relapse

I had a set back on my journey to emotional stability today.

Perhaps its because I'm tired and stressed, but I totally lost it this morning.

I cleaned out my van last night because my mom and I are swapping cars for the next two weeks so she can cart around 4 kids at once safely, car seats and all.  Anyway, I have a center consol that tends to get stuff placed in it. I found over half a dozen hospital "parent passes", old eye glasses in a case, wrapping paper and scissors (yes, I am that person who wraps gifts in the car on the way to an event), kid CDs, oodles of receipts, some jewelery, and pictures of the kids with Santa from 2009, amongst a lot more schtuff.

I brought the Santa pics in and showed the kids this morning. TRex immediately asked if he could see Santa now. I said no, but when we go to Give Kids the World Village in December, Santa will be there. I told them it doesn't matter when we go, Santa visits the Village once a week because he knows special kids go there.

And, as I thought to myself  "special kids who may not see another Christmas", I lost it. Totally lost it. In that moment, all of the work I had done, all of the time spent realizing worrying over worries doesn't help, all of that was gone. And in that moment, I was so afraid my baby would be gone too.

Luckily, life intervened and the need to give DQ her morning breathing treatment before she went to swimming class trumped my free falling emotions. I quickly regrouped and got back to business.

It's been an hour and I'm feeling better. I feel in control again, but I have this nagging thought just lingering in the back of my mind: Those feelings that I thought I had control over are still very close to the surface. I'm still recovering. And I probably will be for the rest of my life.

So, perhaps it wasn't a set back on my journey, but a lesson in how far I still have to go.
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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