How have I changed?

How have I changed?

But first, Zoe is now on her THIRD antibiotic. When her labs were worse on Monday, the team consulted with Infectious Disease and decided to try another, in case the one she was on was making her liver react. This one is apparently processed differently-through the kidneys instead of the liver. I am concerned we are going to get rid of ALL of the bacteria in her gut and want to give her yogurt and probiotics so I will definitely be asking about that. In the past, I’ve been told NOT to do probiotics because of bacteria and the way her bowel is sewn to her liver and the potential of the bacteria reaching her liver and causing cholangitis. I am also so scared about creating the perfect conditions for CDIFF, but praying that won’t happen. This antibiotic is twice per day instead of 3 or 4 and that is GOOD for us. She had a grey poop today, and that is concerning to me.

We will have labs drawn Monday to see what is going on. She did look terrible yesterday, but has been pleasant. We are all squared away for First Steps and will start physical therapy on her birthday! (I CAN’T believe she is almost 1…talk about a blur!)

At this point, I’m not sure if cirrhosis is causing all of her numbers to act up or if it is truly a reaction to the antibiotics. If labs continue to worsen, I wonder if they will switch us again? Have us come in? Pull the PICC and see what happens? We’ll see.

Now, how have I changed?

Of course I have been pensive throughout all of this.  Being thrown into a crisis and unexpected situation after thinking that life was going in a different direction has most definitely changed me and us. Like I mentioned in another post, Seth and I both agree that this situation has changed a lot about our family, our priorities and our perspective on many things. One major way it has changed Seth and I is in accepting and receiving from others and as my therapist says, “letting others show up for us.” Being resourceful and independent people, this has certainly been a lesson in allowing others to help and support us in various ways. I think many people would feel like we do, not wanting to burden others with our situation.  We will always want to be the kind of people that show up for others and will instill that value in our children. 

One way I know I have changed is in questioning myself as a mother. Yes, I do question many decisions I make as a mother, how could I not?!  I have changed in that although I may question the decisions I make, I don’t question whether or not I am a GOOD mother. The beginning of all of this was sooooo hard for me to work through.   I had a VISCERAL feeling that something wasn't right with my newborn baby and I pushed it aside.  Right before my very eyes she was so sick, her little body starting to shut down!  I suddenly started questioning everything about my motherhood.   Did I get so caught up in the move that I delayed taking her to the doctor?  Did I hesitate taking her in because it irritated me that people commented on her color, when to me she looked ok, was eating and pooping normally?  What did I do or come into contact with during my pregnancy that caused her to have a liver disease?  The thought of losing her made me look back on the kind of mom I have been with the boys...feeling guilty for silly things like not keeping baby books. (silly, yes, but my mind was ALL over the place)  

Seth and I have talked through it a lot, and we wouldn't have done anything differently and the outcome probably wouldn't be any different either.  6-8 weeks is the range that people usually notice that something is "off" with this disease.  Yes, the earlier they can do the Kasai procedure, the better, but you never know how their bodies and livers will respond after.  There isn't a known cause of this disease, only theories and not enough funding for research. (I have big plans for you, biliary atresia research!)  One doctor told me that one mom she met questioned herself too, wondering if it was drinking Diet Coke during pregnancy that caused it.  (It wasn't)  

Even so, as a mom I beat myself up over all of it and have had to (and am still) working through it.  And the truth for many of us moms is that nobody will be harder on us than we are on ourselves. There was all of this, on top of life drastically of 3, moving, staying home, lots to juggle, dropping the opportunity for a second career to combine with a skill set I already have. And now SOOO many details and phone calls and appointments to keep track of, most which I do not get a say WHEN they occur and managing that with our schedules. Hard.

An extra sting came when during this time I felt most vulnerable it was mentioned to me that at some point on my journey of motherhood somebody who I considered to be a friend (who, looking back was an acquaintance) asked somebody else if they thought I was a good mom.  I have no idea why. Was it because I worked?  Was it that I didn't SEEM like a good mom? Did this person just want to gossip? (I mean, we ALL do in one way or another...)  Why did it bother me and affect me like it did?  Is it because we have those reactions to people when we recognize in somebody else something that we don't like about ourselves?  That was a big moment for me.  Even when I am questioning it, I know I'm a good mom, and if you are reading this and questioning your motherhood, you are also a good mom.  That person is a good mom and I forgive that person.  It did change me though. Since we are all human and do judge others on some level, this has taught me to want to lighten others’ burdens and be less judgmental.

The truth is, I LIKE to work.  I LIKE to be busy.  I LIKE to juggle a lot at once and have always been that way. On crazy hectic days where I don’t feel like dealing with things (like our snow day yesterday), yes, you bet I would RATHER be around other adults at work!  I don’t make apologies for it because that is the reality of it all and it doesn’t mean I’m not a good mom, it means I am a normal person.  All of this has definitely had an impact on my identity.  I am working on being more present in the moment with my children and family, being ok with being less busy, trying to have complete surrender in this situation.  It's not that I WASN'T present before Zoe, but his has given me a different perspective.  Seth says much of the same.  I do still miss things pre-biliary atresia, but I know this is making me a better person.

It’s a lesson in balance.

My new hobby of wanting to take pics of my family for my "blography"  has turned into a family hobby.  They are building me props!

We finished it after the boys went to bed.  We literally were sitting there watching paint dry and talking about how we've changed. 

Want to kiss me?  I have had a hard time too...

Is it a kissing booth or is it a grocery mart?

Or is it Keegan's tool shop?

Lastly, SPECIAL THANK YOU to Seth's work, Pepper Construction and my work Sorenson Video Relay Service for being extremely understanding and flexible with us.  


  • Ali Camp

    I love this reality of motherhood. I stopped at the Diet Coke part of the story and sat knowing that it was me that asked my doctor that question about my daughter Grace. Dr. West was our surgeon and I remember feeling so guilty and frightened to ask. I have had to accept that there is little known about this life and family altering journey that we call Biliary atresia. I love my daughter each day and rise feeling blessed that God gave her to me and Brian to love and cherish. Her brothers have had it rough affects everyone and in such different ways. I can remember my oldest saying to me one night after the hospital that maybe that is why God gave you jack(her twin brother) so you would always have a piece of her on this earth. He was 4 at the time and I just knew in that moment that I had the greatest gift in him. He has been truly a big brother that has shown up for his younger brother in countless ways when mommy and daddy couldn’t be there. You are a good mom. I am a good mom. And most importantly we are better people for having been changed by this. We love more tenderly and we know God’s grace and mercy. I continue to pray for Zoe. ??

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