Yikes…sorry for the delayed posting! Things, of course, have been busy here 🙂 On Sunday Sydney had an apnea spell which resulted in us taking her to the ER. Once we got there, the doctors did NOTHING for her, not even listen to her lungs or anything. We took her home and her heartrate hovered at 200 the rest of the day. I called our nursing agency and asked if we could get full-time nursing so our awesome caseworker came out and stayed with the girls overnight and we have had somebody here full-time since then. The problem is that we could hear her on the monitor when she started choking (choking on her own spit causes her to have these spells), but by the time we heard her she had worked herself up and wasn’t able to settle down. So, now a nurse is on them the entire night to keep them suctioned just in case.
I didn’t want to post anything on here about our nurses, but we have a rotation of about 6 people right now so nobody will know who I am talking about. We started with a new one today and I really really like her…very relaxed and down to earth. One of the day nurses that was here before her was replaced because she was not making me very happy. I won’t go into detail, but let’s just say that she gave Jake a 4-6 week timeline and I thought it was none of her damn business to be saying stuff like that. Before she had our case, she had never even heard of SMA1!
Both girls are on continuous morphine now so they pretty much sleep the entire day. They even sleep while they are eating. I am relieved because they seem comfortable and their oxygen and heartrate levels are good, but at the same time it really upsets me because I miss my babies and their little personalities. I haven’t seen Carynne smile in about 4 days because even when she does wake up she is pretty drugged. This isn’t how I want to remember them, but I’m trying to do what is best for them so it is a double-edged sword.
Brook – I somehow came upon your blog. Your daughters are beautiful. I’m so sorry for what you are going through. No words. Just thoughs/prayers from a cyper reader.
Hi,
I came upon your blog and have read of a similar story of a girl with teh same diagnosis it may not be as terminal as you thought read there website and her father is always open to emails http://asonginthisworld.blogspot.com/
http://www.asonginthisworld.com/
You girls are beautiful by teh way
I am a fellow twin mommy from The Bump. I think of you and the girls often. I can’t even begin to imagine how tough this all must be. You are such a strong woman and amazing mommy. God bless you, your husband and those gorgeous babies.
Hi Brook,
I’m sorry to hear the girls are sleeping a lot. Lazy bums! 🙂 I hope you get some more smiles soon.
And good for you for getting rid of that nurse! Hmmph!!!
Thinking of you and the girls so often…
Brook,
You are amazingly strong… Hang in there…. My thoughts are with you during this tough time.
Lindsay
http://www.rememberingavi.blogspot.com
Hi Brook. Glad that you have the around-the-clock help now and also that the one nurse is gone. Your family is in my prayers.
Brook,
As a fellow mommy from thebump, I can tell you we are all praying for Sydney, Carynee and your families. No words can take away an ounce of your pain, but please know our hearts break with you.
May you enjoy your times as a family and may the nurses bring you much needed comfort. Always in our hearts.
Hi Brook – I’m so glad to hear you have nursing help! It’s an awful and helpless feeling when medical issues arise and you’re home alone!
I’m sure it’s hard to see the girls sleep so much, but yet know they are comfortable so double-edged sword is right!
You’re doing an amazing job. We are all so proud of you.
~sweater
Hi, I came accross a link to your blog and have been following your posts. My husband and I are praying for your family, and especially your beautiful little girls everyday. I am glad to hear about the 24 hour nursing. Hopefully you will all be just a little bit more comfortable.
Praying to the God of miracles for a miracle for your little ones…
Katy (in California)
I am glad that you have help and I am thinking about you often. You are a very strong mommy and they can feel how much Sydney and Caarynne are loved!
Brook,
I’m happy that you have help and that they girls are comfy, even if it is bittersweet. I’m here for you.
*hugs*
Kalki
I came across your blog and I want to say that your girlies are beautiful. I am praying for your family. I cannot begin to imagine what you must be going through. I hope your dad and girls have comfort and you have the peace that passes understanding.
~Hugs from Tennessee~
I have been trying to type this for an hour now, and I can’t stop crying. Your story has touched me so deeply. I lost my son Nathan to SMA 1, 5 yrs ago. He was one day short of 7 months. He would have turned 6 on Sunday. The pain is deep and indescribable for one precious child, I can not even imagine loosing two. I have 4 more children that are SMA free. My last 2 are b/g twins. Your family will be in my prayers. If you would like to have someone to email with, feel free to email me at usmcmckenzie@hotmail.com. I am so, so sorry for your losses. I have not cried this hard in a long time. Your beautiful little girls touched so many people in their short lives. You will never know the impact that they have made.