Christmas and New Years

Joey's 1st Christmas was AMAZING!!  1st of all we were all just so unbelievable grateful that she was still here with us.. We couldn't ask for a more precious gift!!  Joey continues to bless us daily with the miracle of her life.. I make no exaggeration of what a miracle she is, her recent bout of Pneumonia and RSV is proof of that.  I truly believe her recovery was nothing short of a miracle and God's will being done.


So we spent Christmas with my family (my Mom came down here for Christmas)..  She was so unbelievable happy for most of the day (when she was awake).  My plan was to give her spoons and bowls so we could start spoon feeding her that day, but of course I left the spoons in her Christmas stocking, so we tried the spoon feeding the day after christmas (more on that in a few).. Back to Christmas.


I spent about 6 weeks working in Christmas projects for our families (MIchele, Aimee and Bruce were very helpful with this project)..  I made scrapbooks for the parents (which turned out amazing if I do say so myself).. They were a big hit all around..  I told my Mother-In-Law (Phyllis) that she had to wait to open her gift(s) until the family was all together so everyone would be able to get a look at the book and enjoy it together.  I also made her promise that she would call us before she opened the package it came in.  Although we couldn't be there to celebrate Christmas with them, being on the phone with them while they opened the box made it sort of feel like we were there..  I also made cement molds of joeys foot prints for the parents, Eric & Michele, Jennie, Dr. Corn (pediatrician), Dr. Brown (the Obstetrician who delivered Joey) and we kept one for ourselves.  I also made Jennie call me when she opened hers so in some small way I could be there with her.  I had a lot of help with the molds, Heather and Josh came over and we had sort of an assembly line going on.  Josh mixed the cement and poured the molds.  Heather would hold Joey so I could place her feet in the cement and then run to the sink to wash her feet in between each mold.  After her footprints were set into the mold, Heather took care of Joey while Josh helped me embellish the molds.  They are truly another one of God's blessings in our lives.


Now to the really good part, I framed the pictures that each of our parents had taken with Joey when we were in Michigan in September.  Phyllis and Fred of course loved them, and most of the family got to see them as well.  I also sent 5x7's for each of Joey's uncles and Aunts.  Joey and I were pretty excited to see my Mom's reaction to her gifts.  My Mom is notorious for getting emotional and teary eyed over thoughtful gifts, so I thought we were going to be dealing with Niagara Falls.  I gave her the gifts in a specific order, I started with the foot print molds, (she giggled and raved about how cute they were).  I made her wait a little longer, and then gave her the pictures.  Success, we had tears, but not the big fat tears running down her face.. The pictures I gave her were not only the pictures of her and Joey but also a really beautiful picture of Me and Joey looking at each other.  She absolutely loved them, and was pretty choked up over it, but little did she know I was saving the best for very last.  I waited til everyone else had opened their gifts and then gave my Mom her scrapbook.  She went crazy(er) for it!!  Didn't I tell you Niagara Falls?  Yeah I was pretty happy with her response.  The time and effort I put into the book(s) was well worth it and I would do it all over again.  I was so happy to be able to give Joey's grandparents a way to be a part of Joey's progress since they can't be here every day to see it for themselves.  So here I was thinking I did great and then my Mom tells me there's a gift for Joey in Eric and Michele's garage.  I was puzzled, why the heck would there be a gift for a baby in a garage??  I go out to the garage and my Mom and Ron (her boyfriend) bought Joey a crib!!  Not only that Eric and Michele bought Joey a crib mattress!! I had been saying that I thought Joey was just about ready for a crib, but trying to be practical had talked to hospice about getting Joey a used one.  I love my daughter with all my heart and soul, but couldn't justify spending so much money on something I wasn't sure she was going to get to use or maybe not get too much use from.  So needless to say, I was moved beyond belief (yes, I almost cried).  That was absolutely the best gift (besides Joey's life), and completely unexpected.  In all honesty I think my Mom topped my gift (but don't tell her I said that).  The crib is so beautiful and pretty soon Joey is going to have her own room to sleep in.  I have been putting if off for way too long.  I have decided even if she only sleeps in it once it is worth everything we put into it.  Ok, I think I'm done with Christmas, lets get to the spoon feeding and New Years.


So the day after Christmas we attempted (much more successfully than I had anticipated) Joey's first feeding by spoon.  We pretty much just mixed a thicker version of her formula/cereal combo that she gets by bottle.  Much to my surprise, she didn't gag, fuss, or throw up!!  She ate a few bites, and I think she was kind of baffled about the whole spoon in the mouth thing, but she was a trooper!!  We had been doing the spoon feeding once a day for a few days until Bruce shoved the spoon in too far and Joey choked a bit.  She was so mad and was crying so hard, her whole body was purple.  I managed to get her calmed down, but the next few attempts at the spoon were a complete failure, so I've decided to leave it alone for a while and try again in a few weeks. I'll let you know how that goes.


New Years:  Nothing major happened on New Years, except that Joey was with us to ring in the new year (but that's kinda major isn't it?).  She was our first kiss at midnight and I wouldn't have it any other way.  And what a Happy New Year it is turning out to be!!


So here we are a week into the new year and we have made some decisions regarding Joey's care.
1st we are going to get her involved with an early intervention program down here called Babies Can't Wait.  They will provide her with physical and occupation therapy, as well as any therapeutic devices she may need (glasses, hearing aids, walkers, etc) .  I've already made the initial phone call so hopefully by the end of January she will be involved with them.
2nd since we are getting involved with early intervention, we will no longer be working with hospice.  I'm a bit sad about this, since they have been so wonderful and supportive to us.  We love the Nurse Donna, we have discussed at great length our wishes for Joey regarding resuscitation and they have been fantastic about it.  Our Nurse brought us a bag/mask for Joey as well as a DVD that teaches infant and child CPR.  What a blessing they have been.  They willingly modified the DNR we have for Joey so that it fits with our plan (which, in case I haven't stated yet, is 15-20 minutes of CPR with Bag/Mask ventilation, 2 rounds maximum of each, if Joey does not respond to our efforts we are just going to hold her and be with her while she passes. We want her passing to be peaceful and don't want strangers handling, poking, or prodding her during her final moments.  However; if Joey responds to our efforts, no matter how slight the response, we will call 911 and hope and pray EMT's or Emergency room personnel will be able to revive her.  The one thing we have remained firm and consistent about is NO MECHANICAL VENTILATION WHATSOEVER..  We do not want her hooked up to a machine.  I'm sure there are people who may not understand this, but Bruce and I feel it only delays our grief and keeps Joey from being with Jesus.  I think it would be very unfair to her to keep her from being with Jesus, and since he has given us so much time with her, when He calls her home I will not keep her here). In case you can't tell I feel pretty strongly about this!!
3rd we are going to do our best to live each day with Joey to its fullest.  No matter what happens today, tomorrow, or in a year from now, we are going to give her every possible opportunity to have the best life she can have for however long she has it.


I have talked about Joey's passing so much, and I'm not trying to be morbid, but I am trying to be realistic and yet hopeful at the same time (kinda hard).  The reality is babies with Trisomy 18 don't have a normal life span.  Even if Joey's life span is only a year, or two or twenty, there are no regrets here.  She is and always will be our miracle and a testimony to God's blessings and His love.  The hope is that Joey will be one of the few T-18 babies who defies the odds and proves that prayer, hope and faith weren't wasted.  (Don't get me wrong prayers, hope and faith are NEVER wasted)..


Well enough for now, I will post again soon, but it might not be until February when Joey is 8 months old, but who knows I may get motivated and be back before then.  By the way Joey will be 7 months old on the 17th of January..


Til the next post, thanks for reading and being a part of Joey's Journey (even the smallest part counts)