Love the newest video! With each new picture, video or update on your Caring Bridge page I just fall in love a little more.
I don’t know how I missed this thread for so long, but this is just the most devastating thing I’ve ever read on this board. I’ve got a 1-year-old who spent some time in the NICU as a newborn, but I know that’s only a fraction of the heartache you’ve suffered. Bearflag70, you and your family are in my thoughts and I’ll be helping out financially any way I can. I’m following your little one’s progress every way I can think of (subscribed to this thread, bookmarked your CaringBridge site, and subscribed to your YouTube channel), so here’s hoping you have plenty of good times to share with everyone here who cares for you.
Well, isn’t she just beautiful?
Isn’t it amazing how the short time that you’ve spend with Getty has caused you both to completely change your outlook on life? How you’d gleefully give up all those things that used to be so important in order to spend more time with her? It’s so paradoxical that even though she can’t lift her little head, she wields such power over you: Who else could prompt you to walk away from your career, give up your home, empty your savings, and make a deal with the devil exchanging your life for hers, if only you could…but this little baby? Who you didn’t even KNOW a few months ago?
Such is the beauty and immense power of love. Know that the love you feel for her will ALWAYS outshine the pain. That is Getty’s gift to you, one that will sustain you in your darkest hours.
Peace to you all.
I read all the updates and adore pictures of your Beautiful Getty. ( I just adore, adore her name.)
I’m bumping this to let everyone know there are three new Getty pics on the caringbridge page. They’re kinda cute, I guess, if you like that sort of thing. ;-D
Getty is one of the most adorable kids I have ever seen. Can I send her a hug through the internet?
owl hat!!
she seems soooooooo very happy about her hat.
Her owl collection grows. It’s great!
There was an article in Sunday’s Parade magazine about a woman with SMA type II ( I think) who gave birth twice via cesearian (under local anesthesia for fear of ending up on a respirator she’d never be able to get off of again).
It was both interesting and heartbreaking, to contrast her story of hope with the diagnosis you have been handed.
Bearflag, I went to school (Middle School-College) with a girl with SMA, and she lived to be about 23 years old.
Recent medical analysis having visited the neurologist, radiologist, speech therapist, gastroenterologist, nutritionist, and pulmonologist:
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Pulse Oximeter (pulse, respiration rate, blood-oxygen levels): NORMAL
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Pulse Ox. in a standard infant car seat: NORMAL
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Barium X-ray Swallow Study: NORMAL
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Nutrition & Digestion: NORMAL
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Respiration: NORMAL
Essentially, she’s normal in every way except (1) hypotonia (general floppiness); (2) lack of reflexes; (3) twitching tongue; and (4) slightly weak cough.
While we don’t need any special equipment just yet, time will tell. We will get the car bed fairly soon to replace the car seat as we don’t want need it before we have it. We don’t need an in-home Pulse Ox yet. We will also need a stroller that lays out into a bed to avoid respiratory problems when sitting upright.
The only monitoring we need to do for now is (1) a Pulse Ox every 4 weeks or so, on loan from Kaiser; (2) take her temperature every couple of days, as a fever is an early sign of having aspirated food; (3) make sure she doesn’t choke when she eats; and (4) make sure she poops at least once a week.
We’re going to get her a flu shot and some kind of immune system booster shot to get her through the winter. If she gets a cold, things can potentially go downhill fast.
Overall, she seems just about a strong as an SMA1 baby can get at age 5 months. Some SMA1 babies are in serious condition or gone by this age. The rare case is an SMA1 baby living into young childhood, adolescence, or even adulthood without a ventilator.
That sounds as good a news as it can possibly be… hugs to you, Mrs Bearflag and little owlet… ( I bet that young’un absolutely enchanted her docs, am I right?)
They adore her.
Can’t say I blame 'em!
sounds like she is a stable little owl. hopefully she will stay stable for a good long while.
did she wear her owl hat? who can resist her in the owl hat?!
Also sending my thoughts and prayers.
I do like the owl hat.
I love how she has the serious hat, and the silly hat! She’s ready for anything!
Couple questions, if you don’t mind. Will Getty ever be able to sit up or even hold her head up? Is the condition something you will have to worry about in future children? Have you discussed having more children? How are you moving through the grieving process? Your wife is very open with her grief and how she’s doing on the caringbridge site- I know many men are more reluctant to open up, but are you doing okay?
No problem.
Probably not. All her signs look good right now, such as swallowing, breathing, etc., so I asked the neurologist if she could possibly get stronger with natural growth before she gets weaker due to SMA. He said probably not. So, she’s probably locked into a certain level of strength, but as her body grows, her strength won’t be able to keep up. She could end up with a 2 year old body with the strength of a 5 month old baby.
Yes. If both parents are SMA carriers, which we obviously are, then there is a 25% chance any given child will have SMA. Unfortunately, our little owl was in that 25%. SMA is not part of the standardized prenatal testing. I have 4 nieces and my wife has 1 nephew. They are also possible SMA carriers and they may need to test for SMA if and when they have kids of their own.
However, now that we know the risk, we can test for it at 10 weeks pregnancy if we decide to have a child in the future. If the embryo comes up SMA, then there is the option to terminate the pregnancy. I know of one couple who went through that exact scenario and now have a healthy child. I hear there is also a way to grow test tube babies, run an SMA test on all of them, and use an embryo that is SMA-free.
Yes. It’s something we would like. My only concern is that I’m 40 already.
I don’t know. Fine, I suppose. It’s not pleasant but I’ve come to accept where we are and do my best to get on with life, albeit a modified life. We’ve come to realize that we need to give our girl our best, and we can’t do that if we allow her SMA to overwhelm us.
I’m ok, thanks. I’m trying to get caught up on my work and get some cash coming in. It’s difficult to focus and there’s a heap of things to do outside of work that demands my attention as well (car repairs, banking, bills, calling creditors, Little Owl doctor appointments, etc.)