Tuesday, May 20, 2008

update on little m

{this post was originally an email sent out as we learned about m's hearing loss}

Thank you so much for your thoughts and prayers for us and M this past few days. We feel very loved and supported from those of you who are both near and far. It has been a hard weekend. We went for M's hearing test on Friday, and after about two hours of testing, we got very discouraging news.

M was diagnosed with severe to profound hearing loss; the type of loss she has is permanent and is most likely (or at least as far as we know) just random. Hearing loss goes from mild to moderate to moderately severe to severe to profound. Profound hearing loss is what would commonly be known as deafness. Her tests show that she can't hear anything until the very top range of severe loss, and the lower range of profound loss.

She may have the ability to hear with very powerful hearing aids; if those do not work to help her hear, then cochlear implants may be a possibility. That's about all we know at this point as we wait for the complete test results and follow up. But to be honest, we are not even at the point where we care much about the specifics of how technology can help her hear. At the moment we are wrestling with many different emotions- from changed expectations of what life will look like to thankfulness that the screening caught her loss so quickly to complete sadness. Both Matt and I are pretty overwhelmed with sadness. It sort of feels like we got robbed of this joyful beginning part of her life. Instead of just enjoying our new daughter, we are scheduling doctor's appointments, handling insurance and specialists, researching hearing loss and learning an entire new glossary of terms. Most of all, we are incredibly broken feeling. So at the moment we are processing this, and coming to grips with a new reality for our lives.

We chose the name M for a very specific reason, and now it seems more fitting than we could have predicted. When I spent time in West Africa, part of the time was in M, the capitol city of Liberia, which had been devastated because of the awful Liberian civil war. My Liberian friends and those I met would always describe how beautiful the city had once been, and would speak with hope of what the city could become, even though it literally was falling apart. That image, of having great hope despite the surrounding circumstances, resonated with Matt and me. We wanted our child to be a person of hope and beauty even when that wasn't what life or the world looked like at the moment. And here we are. In a place that seems so dark at the moment. 

We hold this grief with the knowledge that even with M's hearing loss we are so blessed, gifted, and privileged with a delightful and perfect child. At the same time it does feel that our immediate little world is crumbling, and we bear the weight of so much sadness right now. With hope that we will move out of this place of sadness, we ask you to hold us and M in your thoughts and prayers. We are thankful to have so many special people in our lives who we know love us and will sit with us in this hard place.

Thursday, May 15, 2008

hearing tests for little m

{this post was originally sent out as an email and is pretty honest and raw.}

as some of you already know, our sweet one month old m did not pass her newborn hearing screening at the hospital or a subsequent one at a hearing clinic. tomorrow at 2 pm m is scheduled for an extensive hearing test to diagnose her hearing loss, if any. (we have already seen an ear nose throat doctor who said that the issue is not wax or fluid, and that her ears look great structurally.)

this leaves us with either option a. (our preference) that the screenings were overly cautious and that her hearing is fine or option b. that she has hearing loss anywhere from mild to complete loss. it looks much more likely that she does, in fact, have hearing loss, which we have been grieving, processing, denying, etc. for the last couple of weeks. 

i feel torn in asking for people to pray- i would love to ask you to pray for complete healing, and at the same time, i fear that we will be disappointed and crushed if those prayers are not answered. we know that if she is hearing impaired or deaf that there are many options and lots of technology to help her, and that her life will still be full and wonderful, but right now, we are just sad, anxious, and grieving that our daughter may have a life that looks more difficult than we expected. at the same time, we realize that she is a gift, and perfect, that her life has already brought us so much joy, and that so many people bear much harder circumstances than what we are facing. so our emotions and thoughts run the gamut.

that said, i guess we'll ask you to just pray in the same way that we are feeling. it may seem all over the place, but- we are throwing it all out there, even if some of it is contradictory. please pray: that if she does have hearing loss that God would heal her little ears, that monrovia's test tomorrow would show that she can hear, that we would know how to be good parents right now as we operate on minimal sleep and high levels of emotion and (for Sooz,) higher levels of hormones than usual, that we would take joy in all of the special moments we are having with her and not just be anxious or sad, that we would ask good questions and have good doctors, that our hope would cast out fear, that m would sleep through her test so that she doesn't have to be sedated, that if she does have hearing loss or is deaf, that we would be able to grieve that and then process our emotions in a healthy way, and that we wouldn't be scared.

Friday, May 2, 2008

our little family

i wanted to share with you what has been going on in our lives since wednesday. 

m did not pass the initial newborn hearing screening at the hospital, which we thought was no big deal because she was really fussy and awake when they tried to administer it, and because they told us at the hospital that it was very common that babies fail initially. WELL, i took her to get retested at an actual test site with an audiologist on wednesday, and she failed both tests they gave her in both ears. there is a very small chance that she still has fluid in her ears, which would cause her to fail and not hear, but the more we talk to people about it, the less possible that seems. it is at this point a very very high probability that monrovia has hearing loss- although we don't know the extent of the loss at this point. it could be anywhere from mild hearing loss to profound loss or deafness. 

she is really visually alert and aware, but does not respond at all to loud or sudden sounds around the house; they don't startle her at all and she doesn't ever look in the direction of a noise or a voice. today our pediatrician also told us that we need to be hyper aware of any signs of sickness in her, as i guess the kidneys form at the same time as the ears in utero, so often babies with ear problems also have kidney problems. we see an ear nose throat doctor at children's hospital on tuesday, and then from there they will do hearing tests to determine how severe the loss is.

i am really emotional, thinking through what this would mean for her life, especially if she has profound or total hearing loss. i am struggling with moments of feeling like if i had done something different during pregnancy that maybe her ears would have developed normally. and then i switch to feeling like she is perfect as she is, and maybe this is who God made her to be. i just feel like life is going to be harder for her, and that breaks my heart. anyway, i am trying not be worse case scenario, but as we continue talking to specialists and doctors, it looks like we need to be prepared for more rather than less hearing loss.
i'll keep you updated.