Okay, Please also read the next post below after you read this, it is new, I just posted it, but had to add in some information for the sake of keeping ya'll posted, so I'm posting this one...yes, extra reading, a big fat double post woohoo!
1. Oliver went to Neurologist this week. It was just the six month assessment. I had a little trouble driving the same route as to the hospital, a little pre appointment anxiety. Ollie of course is normal. He is ever so slightly "stiff" in a couple areas, but nothing that even warranted a referral for physical therapy or anything like that. Basically he is really good at rolling on his right side, but doesn't like to roll to his left, he can, he just doesn't like to. I think the right is just faster for him and since he's practiced so much, it's preferred. He also tends to keep his hands on the floor by his head when he's on his back. I have to remind him they are there and to use them. He also doesn't touch his hands to his knees or his feet when he is on his back or lift his head to look down his body. Some of this is because he is 19 pounds and chunky and wears cloth diapers which are a little bulky and make it hard to lift and hold leggies. Some of this is from being strapped to boards or sedated in the hospital and not building those first early movements. Some also is probably a bit delayed as his last week or two in womb he was holding very still and unable to build muscle strength. Now since his appt, he has on three occasions rolled to the left on his own will. He has also bent his knees up while on his back although hasn't touched them, or held them up for long, but he bent them up. I am certain he is just a tad slow on these developments and continue to encourage him daily. From all outside eyes he's as normal as can be, these are certain things that we scrutinize and watch for with eagle eyes. I fully expect them to dissolve within weeks at most.
2. Baby Grace. She had a barium swallow study done which is basically a live moving xray of her drinking a bottle. She is aspirating (breathing) her formula into her lungs. They believe this is likely due to that weakened vocal chord and from all the intubation and repeated intubation. There are two options: one is to go home with a feeding tube thru her nose and give her body time to heal itself. The other is a surgery to place a feeding tube in her belly so she can heal. They are waiting on the doc to let them know what it will be. Of course Kristen and Greg really want the nose/least invasive option and to skip a surgery. But, the beauty in this is, they know without a doubt this is what caused Grace's latest hospital stay. As this problem is resolving, so are all her other issues.
3. I got an email today from a sweet friend who walked in my shoes a bit (as far as NICU trauma goes) and reached out to me during Oliver's ordeal. Her name is Ronda. I could not ignore this email, and I had to link this families blog to mine. I will be watching and praying for this new baby friend... I only hope by asking all my friends to help (by prayer if nothing else) that it can bless someone else as I was blessed during our most difficult time. I can only pay it forward now...here's copy of the email if anyone wants to read it:
And please remember, this is from a friend of mine, it was not a spam email...
Dear friends:
If you have received this you either know us personally or someone you know does.....we are the family of Charlie Rose Mortensen, born July 21, 2008. Baby Charlie came into this world appearing healthy and happy and loved my many. Within one week our lives would forever change. Charlie was rushed to the hospital after turning blue and was diagnosed as having Shone's Syndrome which is a form of heart disease that has two main features. First, there are multiple problems with the left side of the heart, which receives blood from the lungs and pumps it to the body. The valves and passageways are often too small or blocked. Second, the abnormal areas on the left side get worse over time. This second aspect of Shone's Syndrome makes it very different from most other types of congenital heart disease, which may be equally severe at birth, but do not progress over time.
Baby Charlie has already had the first of three open heart surgeries with the second to come soon at UC Davis. Baby Charlie has not left the hospital between surgeries although that is what we originally expected. She has coded, been off and on a heart/lung machine and a ventilator throughout the last few months. Her most current struggle is her liver function.
She is now stabilized and we are happy to report is a smiling, lovely 4 month old baby.
Her life has been so significant to all of us...we have learned to love more and appreciate life to the fullest. For such a small, blessed little girl she has had the fight of her life already. Her parents, Shelly and Mark, have weathered this incredible journey with such passion and determination that we are in awe of their strength.
Asking for help is always hard to do but we believe that we can make a difference for this family with your help. Therefore, we are asking for these four things, any one of this will help the world be a better place: 1. Foremost, love and cherish your family and live life to the fullest; 2. Pray for Baby Charlie; 3. Please donate $5 to her fund; and 4. Forward this email to anyone you know and ask them to do the same.....
Our goal is to have 10,000 people send in $5 to Baby Charlie and her parents. We would love to ease the financial burden on Shelly and Mark. Shelly will not be able to work for years while Baby Charlie is preparing for her 3rd surgery. She has not left the hospital or stayed one night at home since July.
If you are interested in donating, please send a $5 check or use paypal on the website (we would take larger ones, too) to Shelly Teal (memo line Charlie Rose Fund) to:
Charlie Rose Fund c/o Shelly Teal
951 Reserve Drive #100
Roseville, CA 95678
For more information about Baby Charlie visit: www.charlierosefund.com or www.charlierosefund.org. We are going to update the site weekly with her condition and progress.
We know in our hearts that Baby Charlie will survive but we just want to help make their life a little easier.........we appreciate any contribution whether spiritual or monetary you will invest in this amazing little baby. We believe this email will make a big difference to them. From the words of Mother Theresa "We can only do small things with great love"
Love and thanks,
The Aunties and Uncles of Baby Charlie
Jay and Kelly Resendez
Jill and Josh Milnes
Logan Ryan and Lisa Teal
Jill and Tag Gorman
PS....we would like to thank the amazing author, Elizabeth Gilbert who wrote "Eat Pray Love" and has inspired this email......without her we would not have realized that part of our helplessness in this situation might be cured with just one email to our friends and family......
****We have notified www.snopes.com in anticipation that this will land all over the world so that you know that Baby Charlie and her struggles are real and that this family is truly in need of both your prayers and help***
***************************************************
Now, I'm not too rich, but I managed to squeak out five bucks. In the 21 days that Oliver was in ICU it cost us our entire savings of two thousand dollars-not to mention about 400.oo that was donated to us. Just to get to and from the hospital, pay for food, and keep bills afloat due to a few weeks of no income. And let me tell you, we squeaked by and are still making up for it months later. I cannot imagine going on month five as this mama is still in the hospital....five bucks is not a whole lot to me now, but in her shoes, its a meal, or a gallon of gas, or that much less of an electric bill waiting in the mail at home...I hope and pray her medical bills are already covered!
Thanks to all my sweet friends and family with big big hearts! May God be watching and may you be heaped with blessings this holiday season-but mostly with the blessing of health!
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