So we've had some things going on the last couple of weeks that we've kept pretty personal but I wanted to write about it because I want to remember what we've been feeling.
Six weeks ago this sweet little girl joined our family. We love our Sarah so much. Before you are discharged from the hospital one of the things they do is perform a hearing screening. Sarah didn't pass in her right ear. They had us schedule a follow-up appointment with the audiology department three weeks later.
We weren't really concerned about this. Jacob also didn't pass his initial hearing screening in the hospital. We went to the follow-up and he passed and we never worried about it again. Apparently it is fairly common to not pass your initial screening because there could be fluid in the ears still. So we weren't really worried, especially since we had already gone through it with Jacob.
On October 1st, we had our follow-up appointment. Luckily, I had my friend Heather watch Jacob so it was just Sarah and I. We went and they hooked Sarah up and began testing.
Once the testing was over, the audiologist began to talk to me. She told me that Sarah didn't pass the test in her right ear again and we would need to do another follow-up. She assured me that it was most likely still just fluid in her ear that hadn't drained yet and that there was no need to worry. Of course though - I was worried. She told me that it could take up to three months before the fluid drained and so until then there was really no need to worry and we would just keep having follow-ups until it passed.
I left this appointment definitely more worried than I was before but still not that bad. It was probably just fluid and it would drain and all would be well.
We had our second follow-up two weeks later on October 15th. This appointment I had both of the little kiddos with me. I wasn't really too nervous or anything because Jacob had always been really good at all of my pregnancy appointments.
They took us back and hooked Sarah up once again and we began the testing. I could tell something wasn't right. They asked if they could take her across the hall to try a "different" test. They did and when they came back they said that she still wasn't passing. The worry really settled in. They left to go see if a specialist could come in and look in her ears to see if they could see any fluid or infection. We went and waited in another room. The specialist was not very friendly and quickly came in and checked her ears and said that he didn't see anything that would indicate why she wasn't passing but stated that it is very difficult to tell anything with a newborn's ears because their ear canals are quite different at this stage.
The audiologist then said a phrase that immediately gave me a lot of anxiety, "Let's sit down and make a plan." I feel like this is the phrase you hear in movies that immediately follows up some horrible diagnosis. She said that we needed to act fairly quickly. She wanted me to make an appointment with Sarah's pediatrician to have her tested for cytomegalovirus (CMV). I was completely unfamiliar with this virus. She said that it's actually very common but if you get it while pregnant you can pass it on to the baby and it can cause permanent hearing loss. She said this appointment would need to take place within the next two days.
She also said that she wanted us to come back in a week to do a three-hour extensive screening to help diagnose what is happening.
I was devastated. The appointment ended up taking over three hours. Jacob had been a gem until about the last hour (but who could blame him - we were ALL done being there). I kept it together and got home and quickly gave Jacob some lunch and put him down for his nap.
I then held Sarah and just cried. I felt like fear was totally taking over. All I could think about was what if Sarah is deaf. How different her life would be. How different all of our lives would be. I then started blaming myself. What if I did have CMV when I was pregnant. Did I cause this to happen? I was confused that just two weeks ago I was told not to worry and now we were making "a plan." How did things get so serious so quickly. I felt very alone.
That night I received a message from my pediatrician that she had heard from the audiologist and we needed to call and schedule an appointment. She said that she wasn't going to be in for the rest of the week but that someone else would be able to help. She said that Sarah would need blood drawn and a urine sample to test for the CMV.
We got an appointment two days later. When we got there everyone seemed really confused as to why we were there. The first person that met with us was a resident and I told her that all I was told was that she needed to be tested for CMV and that they said they needed a blood and urine sample. I told her the reason was because she had failed her hearing tests. Again, they all seemed really confused.
After examining Sarah they just kept saying that she seemed perfectly healthy. I told them that I agreed! Finally, they went and got the attending pediatrician and it turned out to be our pediatrician for Jacob. We thought she had left because when we had Sarah they gave us to a different pediatrician (that I didn't like nearly as much) and I was so grateful to see her.
She came in and I explained what was going on again. She was frustrated and said that this seemed like a major step. She then explained in more detail what CMV is. She said that there are many symptoms of CMV and Sarah is displaying none of them other than the potential hearing loss. She felt like the audiologist was unnecessarily getting us anxious by performing these tests. She was trying to get a hold of the audiologist to talk to her directly because she didn't want to do these tests on Sarah if she didn't have to.
She was unable to get a hold of the audiologist and we decided to just go ahead with the tests. They put a urine bag on Sarah and sent us down to the lab to get her blood drawn. Once we finally got in there the nurse said she felt "uncomfortable" taking Sarah's blood. Apparently Sarah got my veins because she said she couldn't find a good vein and wanted us to come back in an hour when another nurse would be there. Of course, by this point, Sarah is wailing and Jacob is growing very concerned for Sarah and just kept trying to give her her binkie and saying "Saree sad." Breaks my heart.
We go back to the room with our pediatrician. They take off her urine bag and we decided to not go back for the blood sample. They say that they will contact us when they know the results. Another three hour appointment.
I asked Mark if there was any way that he could take off time from his rotation so that he could be with me for her extensive screening appointment. I felt like I needed the support and wasn't sure if I would be able to keep it together if the news were bad. And luckily, my friend Heather was able to watch Jacob for us again.
So on October 23rd we had Sarah's extensive screening. They took us back into a special room and again hooked Sarah up and began testing once again. After hours of testing we sat down to "talk." Our audiologist began with going over the timeline of how things have gone. She told us that Sarah's case has been confusing. Because initially she was failing in her right ear for both the hospital and first follow-up visits but then at her second follow-up visit she failed in both of her ears.
I definitely do not remember ever being told that she had failed in both ears. Which in a way I was grateful for because I had already been in a dark place after that appointment it would have been much worse had I known that.
But after she told me that I was so concerned. It sounded like she was losing her hearing in both ears very quickly. It was because of her failing both ears that caused "the plan" to be made. She then brought out some charts showing how the ear works and what could be causing her to fail the tests.
She then concluded that in her opinion she still thinks it could be fluid in her ears. Apparently the fluid can move between the two ears which she believes is why Sarah is now failing the hearing test in both ears. She wants us to wait a month and then come back for further screening.
To be honest, I don't know what I am feeling at this point. The audiologist showed us some charts as to where Sarah's screening is and she isn't deaf. She actually is right below the "normal" line in both ears. Which the audiologist says is part of the confusing thing because she's just barely in the "concerned" area but she's not in the "okay" area either.
It's been hard and confusing wrestling with different emotions. Of course I have tried reminding myself over and over again that there are so many harder things that parents have to see there children go through than this. But it's still hard. I also really try and remind myself that this could still just pass. She can very well just be having a hard time draining the fluid from her ears. And once it drains she can pass and we can move on.
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| Sarah in her hospital gown at the pediatrician. |
Going through the anxiety of all of this has shown an interesting light on our marriage. After I came back from the second follow-up visit and was so scared Mark was amazingly calm when I told him. He just simply said he had faith that she would be okay. I admired him so much at that moment. I had been so overwhelmed with fear that it completely overpowered my faith. Since then I have been so much calmer. I feel more at peace with where things are and with where they could go. I feel like whatever happens will happen and we will be able to get through it together and be stronger for it.
All I can say now is that I love this sweet girl. I feel like I say it a hundred times a day and that's still not enough. She is perfect. And whatever happens we will be all the stronger for this experience.
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