It has been difficult to try and update Miss Em's blog. Ever since she has begun itching our lives have been turned a little upside down. Emmery is 8 months!! Here are the updates:
Her Heart:
Last month we learned that her pulmonary stenosis has progressed. Basically her arteries leaving her heart that pump blood to the lungs are narrowed. So this causes her heart to work extra hard to get the blood out. Over time this can cause her heart to get hard. It's not an immediate concern but they would like to take care of it now because they said they tend to do better if it is taken care of earlier than later. They will be doing a catheterization of these arteries. Basically they go up through a leg artery straight to her heart. They use a balloon or stint to open these up. We are scheduled to have this procedure done the first week of January. We will be up at Dornbechers for three days. I'm am trying not to be anxious about this and Christmas is a good distraction.
Emmery sedated and getting her Echo
Last week we met with her GI to talk about her liver and get some labs done.
Her weight gain has slowed a bit. She is now at 13.3 lbs at almost 8 months so if she doesn't start gaining a little quicker then they may want to start a NG feeding tube. This goes up her nose down to her stomach to supplement her with more calories. We will know in February if this needs to be done. She has also become very very deficient in Vitamin D. We are starting an additional vitamin supplement to help with this.
Last week we also had a home nurse come to check Emmerys vitals, weight and watch her developmental milestones. She is provided through the county and helps connect us with all the resources available that we may need to care for her. It was so great to have someone here at the house to talk with us. She has over thirty years experience and has never seen an Alagille patient. She didn't know what it was and had to do her research, but she still was a great help.
How is Emmery doing?
Overall, Emmery seems to be doing ok considering what is going on inside her liver and heart.
The good things:
- She is rolling over and playing with her toys.
- She can sit up pretty well on her own which means being able to take a bath in the big kid bath!
- Her color seems to be getting better and I don't get as many "Um your baby is really jaundiced" comments.
- She smiles even when she is itching.
- She laughs and loves to play with her brothers.
- She says Mama!
- She has two teeth
The struggles:
- She still isery small for her age. She looks like she is filling out but she is very short.
- She doesn't stop moving. (I think this has to do with the fact that she is just always uncomfortable from this itch)
- She doesn't sleep for more than 30 minutes during the day without being held or bounced (Lot's of babies have a hard time napping so she could just be a more difficult sleeper on top of her other health issues.)
- Her vitamin D levels are extremely low that can cause other side effects.
- The itch. The itch. The stinkin itch. When we change her clothes she just lays there and rubs her little hand up and down her belly, grabbing, scratching and wiggling. She fusses and cries. It never stops. She is on a medication, Hydroxizine that is supposed to help relieve the itch and make her sleepy, but it only seems to take the edge off a little.
How are we doing?
We live day to day. I'm learning that we can't look too far ahead, but that is the most difficult part about this syndrome. Due to the fact that Alagille's seems to effect every person so differently, there is no way to know her future. This leads to a lot of wondering, thinking, worrying.... You get my drift. I try my best to research, learn and connect with others who know more about this. Sometimes it's just too much to try and understand, especially when it applies to your child. I have found that it is not good for me to do any research in the evening. This usually sends me into some sort of anxiety panic attack that my husband or a sweet friend has to talk me out of. It's the most conflicting feeling. I have a natural planner/controller gene in me that makes me try hard to understand as much as I can for her sake. But, this isn't some random patient. This is my one and only daughter. I read about horrible, horrible effects and outcomes of this syndrome and I am overcome with fear thinking about her having to endure this. Someone told me that I am a doctor for one... I'm trying to become an expert in her. It's too much for a mother to bear sometimes. How can you watch your child suffer and struggle their whole life? I have to work hard and pray hard to not let my mind go there.
I tried to explain to a friend what it is like right now for our family...You know when one of your kids or yourself gets the flu and it kind of throws everything off in the family. It makes things tough and stressful and you just can't wait until they are well so you can get back to normal life? You know that flu will eventually go away and that eventually they will stop puking and sleep but it just is crazy and stressful. It's just high anxiety type of situation where you are just looking for some kind of relief and normal. Well that's where we are at but the reality is that there is no end. This is our new normal. It's not just the itching but the preparing and understanding for what is to come down the road. This itch is just the beginning to the list of other things that can effect her little life. It takes a toll on the family.
But, there is HOPE.
The Lord is with us. He has been comforting and reminding us of our purpose in Him.
Our church just began a series called "Triumph in Trials". It has been a study that is speaking directly to our hearts. It's easy to get caught in the "Why do bad things happen to us?" attitude. We are being reminded trials are apart of our life. One big reason is to remember that this earth is not our final home. A funny thing happens when everything is out of your control and you have nothing left... All of a sudden God becomes real and alive in your life.
Everything in our life has changed; our health, our finances, our relationships... We have to completely rely on God.
We have been overwhelmed and humbled by friends and family who are supporting us.
We have been supported in all different ways..We've received meals, clothes for Emmery, financial support, and encouraging words, cards and messages. We have friends and family who help with the boys during doctors appointments, which is a huge help! I have a dear friend who has a child that needs lots of medical attention too that has lead me and encouraged me to be strong. I have THE best friends in the world that bring me starbucks or just listen to me blubber on about how hard this is. They pray for us and give us strength.
If you're the praying kind:
We are praying :
-She gains more weight so she doesn't need a feeding tube.
-Her Vitamin D levels increase.
- She has relief from her itch.
- Her heart procedure goes smooth and she recovers well.
- That we may have experience a peace during her appointments and surgery.
-That our family will stay united and that we will grow closer.
-That our boys won't be negatively effected and not worry.
Thanks everyone for your support and prayers,
Emmerys Mom
