More Bad News

A couple of weeks ago we met with the doctors and decided to attempt a medication that would raise my heart rate in the hopes that it would have the same effect on Aubree. Unfortunately, we found out at our appointment yesterday that the treatment did not work. She is rapidly declining. Her heart rate has gone down to around 43 bpm and she gained nearly 3lbs of fluid in 10 days due to her heart failure.

Barring a complete miracle, we will not be bringing a baby home from the hospital with us. And we most likely will not get the chance to meet her alive.

We knew going into our appointments that we should be prepared for bad news. But I was not prepared to see with my own eyes just how bad she had gotten so quickly. The diagnosis from the doctors didn't change, and they didn't tell us anything we'd not heard before. But to see just how large her belly had gotten and how swollen her face was from the extra fluid was unbearable. I broke down sobbing in the conference room with all the doctors sitting with us around the table. Her decline was so rapid that they want us to be prepared to lose her at any time now. She had been able to hold steady for so long mainly because she was so little. But as we entered into the 3rd trimester and her body continues to grow on-track, she is quickly outgrowing the capacity of her poor, damaged heart.

I was unable to talk during the meeting because I was so choked up. Fortunately DH was able to put into words what I could not. He told the doctors our main wish at this point is to meet our daughter alive. They reassured us that this is a very common and completely understandable request. They didn't want to take her just yet because of the minute chance that she could pull through this, as taking her now means they would not be able to provide any interventions to her. So we are going to be monitored weekly to see how she's progressing and how I am progressing. Should she decline further then we will schedule a delivery to give us time with her. By some miracle if she makes it 6 more weeks then they could attempt to try a pacemaker and see if they can reverse the heart failure, provided she does not suffer other organ damage in the mean time.

But scheduling a delivery may not be up to us. Her heart could stop at any minute as it is already very weak. Her size could also trigger labor to start, as she's almost the size DD was when she was born and my body is measuring at 36 weeks. I am at risk now of going into preterm labor as my body thinks we are both ready because we are both so big. I've been having pretty consistent contractions for the past couple of weeks, just like I did with DD before I went in to labor. Aubree is not strong enough to survive even a very fast natural labor, so if my water breaks we have a very slim chance of being able to meet her alive. And with the hydrops making her body so large it could complicate labor for me, resulting in a c-section even if she has already passed.

When we came home yesterday I just sat on the couch in a daze for awhile. I felt like I had to start planning something for her, so I grabbed my computer and started to look for urns. I want something that looks like a piece of artwork and not the traditional clay or marble jar. I found a few that DH and I both liked. Unfortunately, as I learned today, Google is not always kind. While I was in the mood to look at these things yesterday, I was not prepared for the constant stream of ads on Facebook and other sites based on my search history from yesterday.

I really just want to check-out for awhile. To step away from this crazy life and have a second to just breathe. But that's not how it works. Life keeps on marching forward. So I keep plodding a long, just hoping that this will help get me through the worst of it and find some kind of rest on the other side.

Unglued

I went to a Bible study tonight with some ladies from church. The curriculum is based on the book "Unglued" by Lysa TerKurst. "Making wise choices in the midst of raw emotions." Those who know me well know that I am not an outwardly emotional person. I rarely cry, even in private. And I rarely get super upset. I am not even very outwardly happy when good things happen. Most of the time I maintain a pretty steady composure. So a Bible study on how to handle emotions didn't really seem like my thing. But I needed some girl time and I figured there's always something to learn, so I signed up to go.

I honestly didn't have a lot to relate with as I read the first lesson in the study. I am not one to blow up at my husband or my kid if I am mad. I tend to retreat somewhere to calm down, think through my reactions, and then deal with the underlying issue if there is one or get on with life if there isn't. I didn't think I would have much in common with the other ladies in the study either since we all seem to be in pretty different places in life. Still, we had a nice time talking this evening and I left feeling happy that I had gone.

But as I drove home and thought about our conversations and our lesson, I was struck with one big revelation:  

I am a horribly selfish person

This last week I've been dealing with an issue of someone hurting my feelings. Someone hurt MY feelings. See that, it's all about ME. Oh, I've not thrown a tantrum or blown up over it or stormed off to confront the person to work out the issue. But the feelings in my heart were still the same even if my outward actions were kept under control. I perceived someone's actions as being inconsiderate to my current situation in life. They inconvenienced ME. And now MY feelings were hurt, and I was upset about it.

ME ME ME ME ME ME ME!!

One thing I've come to realize over the past few years is that most people are thinking about themselves. It's not necessarily a bad thing, it's just the way people work. I don't think that people set out to intentionally hurt others (well, sometimes this happens, but that's another issue). No, what I believe happens most of the time is that people are just thinking about what they need and what they want. Just like I am. This person that hurt my feelings was focused on their own needs and not looking out for mine. And that's ok!! Because I am not the center of the universe!!! They didn't intentionally hurt me. I am the one that felt hurt when I was focusing on MY needs and not realizing that this person also has their own needs that have nothing at all to do with me. In this case, feeling hurt was completely MY issue to deal with! My bad attitude, my resentment, my mean thoughts.

Wow. That was quite a lesson there.

But there was still another one.

The ladies at this Bible study are not necessarily my regular group of friends. Not that they aren't wonderful people, I just didn't think we had much in common and we are in different places in life. How can someone who doesn't have kids relate to where I am right now with facing the potential loss of my daughter? How can girls still in college relate to someone who's trying to juggle working full time, parenting, and just all the stress of life? How can someone who is a SAHM relate to the balancing act of working outside the home and still having to take care of everything at home when I get back?

Yep. You guessed it. Another example of how I am selfish.

I was ready to disregard these ladies' stories because they didn't measure up to mine or I couldn't really relate to them. Until I heard a little voice in my head saying, "Just who the hell do you think you are?*" Who am I to say that someone's life experiences are somehow less than my own? Someone may not have experienced the same pain I have, but they have still experienced pain at some point. Someone may not have had all the different life experiences I have, but they have had their own set of experiences and insights they can share. Who am I to judge how "bad" or "hard" or "sad" or "easy" someone's life has been? Just because things are different does not make them superior or inferior. Ouch.

If I can let go of the focus on myself, then I can see that we have a great group of ladies here who all have something very special in common. We all share the same faith. I can learn a lot from these other people if I just stop worrying about what's in it for me.


*My mom may be the only one who gets that line. My sister once said this to my dad when she was only 3. Not funny at the time, but definitely a funny story now ;) Funny how God brings things up and uses them to help teach you a lesson about something else altogether!

Frugal Mom Hack - Reusing and Recycling!

Now that DD is two, we can leave the house without taking the whole kitchen sink along. But sometimes you still need a few "baby" things like diapers, sippy cups, etc.

While we were out a few weeks ago, we got a bottle of water like this:

The sport top was perfect for DD to drink out of and we didn't have to carry along a sippy cup for her :) But we can't always find bottles with sport tops. So once she was done with this bottle I kept the top before tossing the rest into the recycling bin. I sent it through the dishwasher, and now I can keep just the top in my purse. If we can't find a sport bottle for her, I can just use this top for another water bottle. Yay!!

We also found that the plastic containers from cups of gum make the perfect little snack holders! They are small enough for DD to hold well, they have lids that are attached (so no dropping the lid somewhere), and they fit into cup holders or purses easily. DH loves the Orbitz gum, so I just saved several of his cups once he was done. And gum is cheaper to buy in the cups too :)

Worth a try

I officially got transferred to care at Children's Mercy and passed my physical so I am cleared to deliver there when the time comes. We've made it almost to 28 weeks which is amazing! Right now we are trying a terbutaline treatment hoping to raise Aubree's heart rate enough to clear off the extra fluid. I hope it's enough to get her to the point where she can be delivered and get an external pacemaker installed. The treatment is honestly not very effective in babies with issues like Aubree's. But it is really the only thing we can try right now and it won't make things worse.

At our appointment yesterday she was measuring right on-track, except for her poor belly which is now almost 6 weeks ahead. Due to all the accumulated fluid she's weighing around 3lbs right now. We will know more in a couple of weeks hopefully after we get a chance to meet with all of the doctors and see what our plan of action could be. Right now it looks like we may schedule an early delivery in order to get her assistance as soon as possible since right now the risk of her being stillborn is very, very high. The longer she stays in, the greater the chance that she will pass away before delivery. I know it is still a long-shot, but I really would love to at least meet her alive.

Another Set of Eyes

Dr. Marx with Boston Children's Hospital contacted us yesterday. He had received our medical records and reviewed them. While he agreed that her outlook is grim, he wasn't ready to write her off completely like others have been. Right now he sees three HUGE hurdles to overcome:

• Her heart block. He didn't know if it was 2nd or 3rd degree, but the low ventricular heart rate is very concerning. There's no way to effectively pace a heart in utero, so she has to survive to term with a heart rate approximately 1/3rd of what it should be.
• Non-compaction of her heart muscles. Muscle fibers should be dense & compacted. Aubree's are spongy. So her heart simply can not get enough force to pump the blood around like it should because the muscles themselves are weak.
• Ascides/hydrops. Due to her heart not pumping effectively, she's in heart failure. This is causing fluid to build up in her chest and abdomen. There are treatments after she's born, but again it's most threatening now as there's no good treatment in utero.

At this point, it's all up to God and Aubree. There are no treatments we can do to help her right now. The fact that she's made it this far is a complete miracle. Should she made it closer to term to be born (32-36 weeks would be good, closer to 38 would be the ideal), then they could look at some interventions. The first being an external pacemaker to at least get the heart she has pumping at a higher rate. If that works, it would relieve the fluid build-up. But since the muscles themselves are weak there's a good chance this may not work.

An external pacemaker is only good for about 4-6 weeks. At that point a permanent one would need to be implanted and additional modifications made to her heart. Or we could see if she was a candidate for a heart transplant and wait for a completely new heart. Of course transplant brings along it's own set of risks and problems. Even a new heart wouldn't necessarily "fix" her as heterotaxy babies have issues with other organ functions due to the way things are mixed up within the body. Stomach, spleen, bowels, kidneys, and liver are all commonly affected and can't really be diagnosed until after birth.

Saint Louis is the closest facility that is capable of doing a heart transplant and they have an excellent track record. He recommended we seek them out vs. trying to uproot our lives and go to Boston. Dr. Marx also knew our current cardiologist as she had trained with him a few years back, and said that he would be in touch with her to share his opinions.

And so we continue our game of hurrying up and waiting. In two more weeks we officially transfer our care to Children's Mercy and Aubree can be born there. It's the only hospital in the region capable of handling her needs at this point. Today we officially are 27 weeks along. That's 11 more weeks than we were told was even possible. While she continues to defy the odds, always present on my mind is the fact that she could pass away at any moment.

So for now we have a plan for what to do if she comes before 7/29. On 7/29 we will re-work our plans, and it looks like things could change again if she keeps progressing further. Unfortunately those plans also bring along another set of tough decisions that we have to face. At each milestone in development more interventions become available. Advances in medical technology have given us incredible opportunities that also come with serious risks and consequences. And our hearts will be tried as we attempt to make the best decisions for Aubree that we can given the information and resources available to us.

But for now I will continue to enjoy her kicks and rolls. And the way she tries to climb up as high as she can under my ribs, even though it's leaving the top of my belly very bruised and tender.

Clinging to Hope

Aubree Grace. Her first name means "elf-power" or "supernatural power." I especially like that second one, because I honestly believe that she's only hanging on to life right now by supernatural power. The doctors still have no explanation for why she is still alive. Ten weeks ago we were first finding out about her poor broken heart, and facing the decision of whether or not to continue on with the pregnancy. We were told that she wouldn't last more than a couple of days because her situation was so severe. We made the decision to continue the pregnancy and to try to enjoy her life, no matter how short it may be.

But she's held on. She's growing, stretching, moving all the time. Each checkup we have the doctors are amazed that she's still here. Heterotaxy happens in approximately 4:1,000,000 children born, or less than 20 in the US every year. It is pretty rare. Without serious interventions, more than 85% of children with this condition pass away in their first year of life. There are very few places in the US that see enough cases to really treat these kids. From what I have been able to determine from my endless Googling, Boston Children's Hospital seems to be the leader in care for these babies.

The doctors at our local children's hospital are great. But I can't help but feel like we are inconveniencing them by continuing to request care for her. They just don't have a way to treat her here and it seems like their only recommendation is palliative care. I know her chances may be slim, but if we stay in KC she has no chance. I started to feel a desperate need to find someone who would be willing to see her as a baby that needed help, and not a hopeless case to just write off.

So we've started asking for second opinions from other centers that are leaders in pediatric cardiology. The first place we were able to contact was CHOP. The doctor there responded that he would agree with our cardiologist here and he would not be willing to take on her case. He told us it would be better for her to pass away since the challenges she faces in order to survive are too great. That news hit me pretty hard. It's one thing to know she's facing tremendous odds and that passing away is a very likely possibility. It's another to hear someone say that your baby would be better off dead than alive. Someone who is supposed to be the expert in treating these babies. I know it wasn't said maliciously but the words still stung.

Reeling from that, I began to search online for some kind of hope. I couldn't give up at this point. She had passed the magical 24-week mark and I knew that I had to fight for a chance for her as long as she continued to hang on an grow. I came across a group of Heterotaxy families (parents and survivors of Heterotaxy) on Facebook. And that was the point I officially let myself start to have hope for Aubree. There I found families who have faced nearly identical situations with their children. Children that are now past toddler-hood and thriving. I found stories of survivors that are my age, with careers and marriages and children of their own.

With help from the group I was able to get Aubree's information sent off to Boston for another opinion. I've been researching medications that can be given while I am still pregnant to help increase her low heart rate and to help prepare her lungs in-case she is born early. What I have found is there are options available, even though the doctors here told me there were none. The medicines may not be effective for every baby but the studies I read showed nearly 50% chance of improvement, especially in the ventricular heart rate, which is where she has the most difficulty. When the other option is to wait for her to die, why wouldn't we want to give it a shot? It makes me mad that we were not even given the information by the doctors treating us.

So we continue our waiting game. Waiting for 29 weeks to get here so we can get our official transfer to OB care at the children's hospital so she can be delivered there. Waiting on second opinions. Collecting medical studies and journal articles to discuss with the OB (earning my doctorate in Googling!). And making as many memories as we can with her in the meantime.

Making memories

Her feet in my ribs.

The way she scoots around so her butt sticks out on my right side.

The way she flips over and makes me feel sick as her elbows and knees press into my stomach.

The hard jabs that bounce off my hips or ribs and make my whole body shake.

The way she stops the second she hears her daddy's voice.

She loves ice cream and sweets. Especially Sprees (mommy's favorite!).

She does not like these fireworks.

Hiccups.

Kicking at the bed because she wants me to roll over.

Morning taps as I place my hands on her to tell her about what our day holds.

Calming down when her sister gives her a hug.

But kicking back when sister encroaches on her space as we read bedtime stories.

My sweet girl.

I only wish we had more time to make more memories.