Monday, July 26, 2010

It's been so long

Wow, last time I posted a blog update was in January!! Boy do I suck as a blogger.. Ok to get you caught up on the last 6 months!!.. 

January:  Came and went with nothing really exciting happening.  Don't get me wrong, every day I wake up and Joey is still here is exciting, but it's just too easy to get caught up in the day to day routine of our lives.

February:  We did Joey's room.. I knew Joey wanted a ladybug theme (it wasn't my idea), so we checked out quite a few ladybug crib bedding sets and found one that she really liked at walmart.  Once the bedding came we set to work trying to design the room.  Bruce painted the room pink and green to match the bedding, and I had a blast at Hobby Lobby trying to find lots of ladybug items to enhance the theme.  Joey's God-Mother (Jennie) and my God-Children (Corey, Mykenzie and Evan) bought her the rug, mobile and wall hangings to match her bedding set.  I think we spent about 2-3 weeks in all decorating her room, but she still doesn't sleep in it (can't bear the thought of her being that far away from me in the middle of the night). Joey also started getting physical therapy twice a month

March:  Joey had an ABR (Auditory Brain Response, a sedated hearing test). THe results came back with mixed hearing loss in both ears.  Mild hearing loss in the inner ear, and moderate to severe hearing loss in the middle/outer ear.  We were referred to the audiology department at Children's Hospital for Joey to be fitted for hearing aids.  We also had our 1st appointment with an ENT, he thought Joey had fluid in her ears (which could account for the moderate/severe hearing loss in the middle/outer ear) and thought she might benefit from tubes in her ears.  At that time she was still too small to even discuss surgery, so we go back in August and will re-evaluate then.  For my 40th birthday (ouch, did I say that out loud?) I decided to get Joey's footprints tattooed on the top of my feet and her hands and wrists tattooed on my back.  If you can imagine, picture that she is standing on my feet with her arms around me hugging me (this way she will always have her arms around me).  I will post pictures once I actually get around to taking them (I know, I know, I'm terrible at keeping up with this stuff)

April:  Joey finally got her hearing aids, only to find out that they were way too loud.  I was hoping for a better reaction when we turned them on, but about 30 seconds into it, she started crying and fussing really bad.  We tried them at home for about a week, then had the Audiologist turn them down.  Tried them another week, they had to be turned down more, at this point the Audiologist realized that the hearing aids made a loud tone when turned on and thought this might be the issue, so she removed the tone and we tried them again.  She was a little better, but still not adjusting very well to them, so they were turned down yet again.  She still wasn't adjusting to them at all.  But we kept trying.

May:  Emma's birthday is in May and Joey's birthday is in June, so Michele and I talked about it and agreed to have 1 party for both girls, so my Mom could be here for the party.  It turned out better than I could have hoped.  We asked people not to bring gifts for Joey, just simply come and share her day with us, but people brought gifts anyway. One of our friends wrote this amazing poem about Joey and if he gives permission I will post it.  I couldn't help but look at the people that were with us to celebrate these birthdays and give praise to the Lord for bringing such amazing people into my life.  Still so touched by the love and support of these people.

June:  Joey's First Birthday!! I praise you Lord for giving me this precious gift, which is more than I could have ever asked for!!  I thought it would be neat if we could have a get together at the hospital with the nurses who cared for Joey after she was born.  I thought, what a better way to celebrate the miracle of her birth, than going back to where it actually happened.  I called the director of Maternity Services and she just took the ball and ran with it (Thank You Ellen!!).  She decided to make it a hospital event and put out a hospital E-mail, put up flyers, and even contact the local paper.  We had the party on June 18th (Joey was born the 17th), and not only were the maternity nurses there, but Joey's pediatrician came, as well as my OB, many hospital employees who had only heard of Joey came, and also a reporter from the Dahlonega Nugget came.  I'll attach the link for the story at the end of this post.  All in all, it was such a great day and I have to again give thanks to the Lord for such abundant blessings in our lives!! I think I've said it before, but I'll say it again, I can see God's hand in all of this, Joey has brought so many wonderful people into our lives that we wouldn't have had a chance to meet if it were not for her. 

July:  We headed up to Michigan to have Joey's Michigan birthday party on July 10th.  We also decided to have Joey dedicated to the Lord and have Jennie and Alicia named as Joey's God-Mothers.  I had mailed out many invitations and really only had a few responses.  We had expected (with family and friends, along with people who were casually invited) to have approximately 80 people.  Much to my dismay we had less than half of that number show up.  I was pretty upset about it for a while, but then realized that everyone has a role to play, some people's roles are shorter than others.  Some people come into your life for a season, and when their season is over there's no use in trying to extend it.  No hard feelings, no anger, just accept that their purpose in your life has been fulfilled.  Once I got that sunk into my brain, it was a lot easier to get over the disappointment.  Although, there's no excuse for family acting like that (sorry, but being family doesn't mean you get a free pass to act like an ass).  

That's it for the past, this is what's coming up:

Joey is having her ABR repeated, she is definitely responding to sound and voices (without her hearing aids).  I suspect that either the fluid in her ears was the issue with the hearing loss, or her ear canals have gotten bigger and allowed everything to start functioning a little more normally.  

We are also talking about meeting up with some other Trisomy families around Labor Day weekend in Savannah, I'm really hoping that will happen, would love to meet these families in person!!

I've also talked to someone about heading up a SOFT (Support Organization For Trisomy) Chapter in our area. I'm hoping to get that info soon, I'm pretty excited about being able to help support any one else whose facing this diagnosis.  I've become a lot more willing to talk to strangers about Joey having Trisomy 18 (most people have no idea what it is).  I've been finding a lot of comfort in being able to educate people on it, and also share with them what a miracle Joey is. If even 1 person walks away with a better understanding, then I feel like I've done my job!!  

Ok, enough for now.  I'll try to be back before another 6 months goes by.  Here's the link for the article in the Dahlonega Nugget:

Friday, January 8, 2010

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)

Saturday, December 19, 2009

December 2009

It's been a while since I've posted anything about Joey and I apologize to anyone who has been following her journey.  I have no excuse except that I have been experiencing depression which I have finally sought treatment for.  In case you are wondering, I am on medicine to help with the depression and I feel much better.  So here I am to update you on Joe's progress to date..

October:  Joey turned 4 months old on the 17th (YAY!!), we didn't do anything except spend the day loving on her (I think she likes that more than any celebration).  Joey's 1st Halloween was on the 31st (Duh), we dressed her as a Ladybug and of course the costume that I bought her was really big on her.  The smallest size they had was 0-3 months and she was between preemie and newborn sizes.  We went to Eric and Michele's and Joey and Emma (who was also a ladybug) went trick or treating together.  I suspect Joey could have cared less about trick or treating, but Emma had fun..

November:  Nothing exciting in November, just more of the same old, same old..  Joey's 5 month birthday was again just us loving on her.  Joey had a few days of being really crabby with excessive crying spells, this intensified my depression.  It was too a point where I couldn't enjoy the time I was spending with her, so I broke down and saw a doctor to ask for help.  The doctor agreed to put me on some medicine.  After a few days on the meds I could tell a difference not only in how I felt, but also in Joey.  I was able to comfort her when she was upset (something I had not been able to do for a few weeks). Since I have been medicated me and Joey have been having a much better relationship. I have come to believe that Joey sensed my depression and was reacting to it (and they say she will be retarded). She started to develop more of a personality.  She was getting more vocal, the smiles were getting bigger and more frequent as well.  We had Thanksgiving with Eric and Michele, which as always was wonderful.  I am first and foremost always thankful that we have been blessed with this time with Joey, she is such a miracle. 

December:  The last few days of November and the first few days of December, Joey was a bit fussy, was drooling and looked like she was trying to chew gum..  Naturally I thought she was probably teething.  I didn't think to much of it until she ran a low grade fever.  I still attributed it to teething, so I gave her Tylenol and teething tablets.  I don't remember the exact date, but I woke up in the morning and Joey's fever the night before was around 100, but in the morning her fever had shot up to 102.8.  At that point I knew it wasn't teething.  I made an appointment with her pediatrician for that afternoon, still thinking she just had some sort of bug.  I didn't realize just how bad of bug she had until we got to the Dr's office.  Dr. Corn (Joey's Pediatrician) came in took one look at Joey and ordered a pulse ox (for those who don't know, it measures the O2 saturation in your blood, normal is anything above 93, low normal would be 88-92, and anything below 88 requires O2, and anything below 70 is very dangerous if not treated right away).  Joey's O2 sats were in the 60's.  Dr. Corn said there were 2 possible causes for the low O2 sats. 1-because of her being sick, in which case antibiotics and IV liquids would be the proper treatment.  2-it might have been a cardiac issue, in which case nothing could be done except keep her comfortable and be with her while she passed away.  Dr. Corn put Joey on O2 in the office and Joey's color pinked right up, I hadn't realized how bad her color was until the O2 started working its magic. Even though Dr. Corn felt we were looking at the 2nd scenario she ordered Joey to be taken by ambulance to the hospital.  Bruce went with Joey in the ambulance while I followed in our car (he didn't know how to get to the hospital we were going to).

Once at the hospital they did some testing and found she had RSV and Bacterial Pneumonia (scenario 1).  I was relieved and scared. Relieved because there was a treatment for her low oxygen, yet scared because there was no guarantee the treatment would work.  They put Joey on Oxygen, but she only needed 1 liter (that was a pretty small amount and a good sign).  After they started the IV and gave her antibiotics, her fever was completely gone by the next day.  We still had an issue with her being dependent on the O2.  I thought Joey was going to have to come home on O2, but Dr. Corn didn't want to do that, since Joey wasn't on O2 before she got sick.  She wanted Joey to be weaned off the O2 before she was sent home.  They tried to wean her several times with no success, until the last time.  I realized every time they tried to wean her, they would simply rest the cannula (the tube under her nose that delivered the O2) on the bridge of her nose.  It got me thinking that may have been the reason why she wasn't weaning, that the cannula resting on the bridge of her nose was constricting her nostrils and reducing the air she was breathing.   The last time they attempted weaning I asked the Nurse to completely remove the cannula and see if that didn't make a difference.  The Nurse reluctantly complied with my request (she said something to the effect of "if it doesn't work, they will have to put the cannula back on again anyway")..  Guess what??  My mommy senses were working perfectly, Joey weaned off the O2 completely.. Dr. Corn was willing to settle for a low normal for Joey anything between 89-92, but Joey (being the miracle baby she is) decided that wasn't good enough for her and maintained her O2 Sat Level at 97/98..  We were all ecstatic.  Joey was discharged that night, she spent a total of 5 days in the hospital.  Bruce had to go to work that night, so I pretended Joey was staying one more night so we could surprise him.  I told him I would meet him at the house to pick him up after he got off work. When Bruce got home that morning I told him I had an early Christmas present for him and took him by the hand to Joey's bassinet where she was sleeping soundly.  He was so surprised, he asked me how I got her home (like I kidnapped her from the hospital)..  When I told him I wanted to surprise him, he hugged me and said this was the best Christmas present he's ever had.

Since Joey's stay at the hospital, she has bounced back 110%.  She's doing so good.  No more fever, she's in a great mood (most of the time), and now she's getting better head control and she is moving her arms and legs a lot more.  I think it's not too much longer before she is able to hold up her own head, but it doesn't matter how long it takes her to get there.  

Joey turned 6 months on the 17th and we had another quiet evening at home, just loving on her and playing with her.  She is getting more playful by the day.  

That's pretty much everything up to this point, I will try to post again after Christmas, but I make no promises.

Until then, thank you for reading and being a part of Joey's journey.

God Bless

Tuesday, October 13, 2009

Joey 3-4 Months

To continue where I left off from the last post:  

Joey had her first professional photo shoot done by Jay & Donna at Lasting Images while we were in Michigan.  The pictures turned out absolutely beautiful (I knew they would, Jay's work is fantastic). We left Michigan on Friday, September 25th. Our Parents had a hard time saying goodbye to Joey. My Mom actually tried to hide out with Joey in her bathroom, like I wouldn't find them (it was pretty sweet actually). For the most part our visit to Michigan was a great one. The only blemish in the visit was the hit & run we were victims of. We went to go visit the Neshewat Family at their new home in Bloomfield Hills, and on our way back to my Mom's house we were sideswiped by a a girl who was texting on her cell phone.  Once I realized that she hit us, I motioned for her to pull over (we were stopped at a light). Once the light changed, she drove off. Luckily, there were a few witnesses to the whole thing, one of whom was an off duty Police Officer.  The hit & run happened in Detroit, so we ended up going to the Detroit Police Station to file the report the next day. What an adventure that was (not a good one either).  But as I said before, apart from that incident our visit was a great one!

We made it safely back home from Michigan on Saturday the 26th.  It was such a relief to be able to sleep in my own bed for a change.  Joey however, must have realized she wasn't near her Grandma's anymore and wasn't too happy about that.  She was pretty fussy for a few days but then settled back into our routine.  

Monday the 28th Joey had her Barium Swallow and Air Flouro done.  The Speech Pathologist overseeing the Swallow study said she could see how Joey was aspirating on thin liquids when she was agitated.  Here came the dilemma; Breast Milk is thin so therefore higher chance of aspiration, yet it is most like amniotic fluid so her body can deal with it easier if she does aspirate on it. However; Rice cereal does not mix with breast milk and my milk supply was dwindling fast.  So our next option was formula, higher chance of aspiration with complications with plain formula and adding cereal to the formula meant higher chance of constipation and or tummy upset.  Seemed like 6 of one 1/2 dozen of the other, so I decided to stop breast feeding (pumping) completely.  I am happy to report that Joey seems to be thriving on the formula/cereal combo.  Her appetite seems to have increased, she is definitely eating better, and only had tummy issues the first few days on the cereal.

There was nothing spectacular happening with Joey and then I got a call from Dr. Corn (her Pediatrician) on Wednesday October 7th.  Apparently there was a miscommunication about the testing Dr. Corn wanted and what was actually ordered.  Dr. Corn wanted a modified upper GI and what got ordered was a modified Barium Swallow.  On a positive note, the Barium Swallow wasn't a complete waste, it showed how Joey was aspirating on thin liquids and that wouldn't be visible on an upper GI. So we have an upper GI scheduled for this Wednesday, October 13.  Joey also goes back to the Cardiologist on Friday the 16th, the will repeat her echo and hopefully be able to have some answers about the upper GI.

Then only other thing that is going on with Joey is that she is becoming more and more social.  She is cooing quite a bit, she smiles a lot, and my favorite thing is when I kiss her in the corner of her mouth she will give a huge smile.  She is looking at us more and more as we talk to her.  She seems to respond better to my voice than Bruce's (that's just my opinion).

That's about all for now, so until the next update....

Tuesday, September 22, 2009

Joey 3 months part 2

So we arrived in Michigan on Friday, Sept 18th.  The first place we stopped was at Bruce's mom and dad's house so Joey could meet her Grandpa for the first time.  I think it was more emotional for me than for anyone else.  Bruce's dad was so sweet, he did want to ask to hold Joey.  Phyllis (Bruce's mom) was sitting in the rocking chair just loving away on her and Joey was sleeping so peacefully in her arms.  Fred (Bruce's dad) was sitting on the couch staring longingly at the the two of them, I could tell he wanted to hold Joey so bad, but he didn't want to wake her up.  After much prompting I was able to get him to admit that he wanted to hold her and rock with her in the rocking chair, so Phyllis and him switched places.  He looked like he was in heaven holding is newest grand-baby, it was so beautiful.  And of course since I didn't have a camera, I didn't get any pictures..  I have since rectified that and bought a camera on Friday evening. After leaving their house we went to my Mom's (they actually live less than a mile away from each other) to unload the car and get settled in (we are staying with her while we are here).  My mom was pretty excited to see Joey again and Joey got to meet her other Grandpa (my Mom's boyfriend) for the first time as well.  Friday was the day for Grandpa introductions!!

Joey's Party was on Saturday, Sept 19th.  It turned out better than I could have hoped.  Quite a few people were sick & thankfully they were respectful enough to call and let us know they weren't going to be able to make it.  There were also quite a few that couldn't get out of work, but we are working on arrangements for a visit with them.  The disappointment was the people that didn't show up and didn't have the courtesy to at least call (I thought of these people as family, but this has made me think otherwise).  The bright side is that many people came to Joey's party and even though we asked them not to many o them brought lovely gifts for Joey..  My God-Parents made a trip and drove quite a ways to be there (probably a good 2 hour drive for them).  I hadn't seen them in many years (probably 15 years or maybe more), so it was wonderful that they came to be a part of Joey's celebration.  Most of Bruce's family (he has a big family) came as well.  Of course the important people from my Michigan family were there (my mom, my niece, and my best friend, her husband and her kids).  There were also many friends of ours and our families that came as well, so all in all it was a pretty good turn out and I think everyone got a chance to meet Joey and hold her at least once.  I hope everyone was able to enjoy themselves.  Joey was very cooperative and didn't fuss at all (I think she slept most of the time). I think I saw her for maybe 5 minutes from the time we arrived until the party ended. 

Sunday went by pretty quickly, we went to church on Sunday with my best friend Jennie and her husband Matt. Their pastor has been praying for Joey since we first got her diagnosis, so it was nice to be able to introduce ourselves and Joey and put faces to his prayers.  We were glad to be able to tell him in person how grateful we are for all of the prayers made for us and Joey.  He was so nice, he put his hand on her head and said another prayer for Joey, it was very moving.  After church we went back to Jennie's to spend the afternoon with her and Matt and Joey had her 1st real smile!!  I was talking to her and she looked right at me and gave this really sweet, toothless, kind of lopsided grin.. It was so beautiful I actually cried.  I didn't think I was ever going to see her smile and it was so overwhelming to be given such a precious gift.  Most parents of a newborn can think ahead to their baby's first smile, laugh, steps, & words, but as a parent of a Trisomy 18 baby I am always praying for just 1 more minute, hour, day, & week. To get a smile was more than I had prayed for, God continues to amaze me with the blessings we are continuously receiving through Joey.

Monday was another day for introductions, we visited 2 of my previous employers (Dr. Neshewat and Jay the photographer).  We managed to surprise Dr. Neshewat by having his staff tell him there was a different patient in the room we were in.  Bruce thought Dr. Neshewat's sixth sense would tell him I was there and that we wouldn't have him fooled for a second, but we managed to surprise him even though Joey was being pretty vocal while we were waiting.  Jay wasn't at the studio, so we went to his house to see him.  He wasn't at the house either, but his wife Donna was home with their 3 kids, so we went in and visited with them for a few while Jay was on his way home. Bruce's brother Mike came to my Mom's later that evening to spend some time with us, he looks so awkward holding Joey, it was so cute.

That's pretty much everything up to this point, there will be another post as our visit continues.  

Until the next post....

Friday, September 18, 2009

Joey 3 Months

Not too much to blog about, Joey is still doing pretty much the same.  Her last weight check on Sept 9 she was 6 lbs (I may have already mentioned that).  She is getting more opinionated daily (I have no idea where she gets that from). 

Desperate times have called for desperate measures.  In hopes of possibly getting her to stop wanting to be held all the time, I bought her a bouncy seat that vibrates (and of course, she hates it).  My next attempt was to buy her a swing (the one Michele loaned us doesn't work).  I decided to get her a portable swing so it could be moved from room to room and also come with us on our trip to Michigan. Hands down the best $60 I ever spent, she loves it!!! Thank God!!

Speaking of trip to Michigan, Joey has been surprisingly cooperative about the whole thing (so far), we are half -way there and she hasn't really fussed or complained too much up to this point (she's sleeping now).

The only real major news is that Joey has been approved for SSI and her payments will start immediately.  Thank you Jesus for looking out for us and thank you to everyone who prayed that we would be able to quickly get the assistance we so desperatly needed.  Just one more thing to prove how God is working miracles in Joey and us.

Enough for now, I wll add to the blog when we arrive in Michigan.  Joey is going to meet her Grandpa for the first time and I am sure they are both really excited (Bruce and I sure are).

Joey's 3 month celebration is Saturday the 19th, so I will be blogging about that as well.

So until the next update.

Monday, September 14, 2009

Weeks 10-12

Not much new on this end. Joey has gained more weight, she is now up to 6lbs (what a heifer!!). She is still getting up every morning around 3 am (what a joy that is!).

Joey had a follow up appointment with the cardiologist, there's nothing new to report there. The Dr said her EKG looked ok, and everything sounded ok, so we didn't need to do another Echo. The interesting thing is that he didn't think the Hypertrophy was due to the Trisomy, he said it could be due to the gestational diabetes or possibly even from the vessel/connective tissue that may be surrounding the trachea/esophagus. If it's from the diabetes, it should resolve itself by her 3rd or 4th month of age. If its from the vessel/tissue surrounding the trachea, it should resolve itself after that is surgically corrected. So all in all it was pretty good news..

In addition to the weight gain, Joey finally made it out of preemie diapers and most of her preemie clothes. She's now into newborn diapers and clothes (although with the clothes it depends on who makes them). She also outgrew the toy Moses Basket she had been sleeping in, so I had to buy her a real one made for real babies (she loves it)..

Joey is starting to get a little more vocal when she's not screaming for food or a diaper change. She's starting to make really sweet cooing sounds, and she is also starting to really smile. It's just a little smile and it's very quick so I haven't been able to get it on camera (yet) but it's the most beautiful thing I have ever seen.

That's pretty much the past 2 weeks in a nutshell, I love the fact that there isn't anything exciting to write about, I think it's a good sign. We are getting ready to take a road trip back to Michigan so Joey can meet the rest of her family (I am so not looking forward to the car ride with her), we will be leaving Thurs. the 17th (Joey will be 3 months old that day), so we will be having Joey's 3 month celebration up there.

Weeks 8-10

Ok, not a whole lot new and exciting to report. Joey had a pediatrician appt. on Aug 21st and weighed 5lbs 10oz and was 18 1/2 inches long. Her Dr. said she was pretty happy with Joey's growth, she is following the growth rate of a normal baby but on a smaller scale (not sure if I explained it properly). We had been trying to get her to take 2 or 3 oz of milk per feeding but haven't had much luck. It takes her quite a while to get 2 oz in and sometimes she just won't take it!! She has also slowed down on the amount of feedings per day, it used to be every 3 hours, now its 4-5 hours between feeding (unless I want to sleep and then its every hour, but only a little bit at a time). She is also starting to develop colic (oh joy!!) and bouts of constipation. I can only pray that these will pass as she gets older.

Joey had her cardiologist appt on Aug 27th. She was not happy at all about the EKG and was even less happy about the echo. She was fussing and squirming so much it made her heart look more enlarged than it actually is. After she settled down a bit and was taking a short catnap, they re-did the echo and got a better picture. She has Cardiac Hypertrophy (much less severe than the Hypertrophic Cardiomyopathy he thought he originally saw), and there may be a vessel surrounding the trachea which is making it difficult for her to breathe. Doc wants her to have a barium swallow to get a better look at the trachea, the course of action will be determined by the result of the swallow.

We have an appt 9/1 to apply for social security benefits for her, so that should be an adventure. We already applied for Medicaid for Joey and the caseworker (God bless that woman!) put a rush on Joey's app and we should have an approval sometime this week.

We are now down to the last few preemie diapers and I am tempted to keep one (an unused one of course) with her memory box. We are going to try newborn diapers when the preemie's run out, but I'm not sure how they are going to fit her, we shall see!!

And finally, we had a 2 month celebration for Joey, it was wonderful!! It was not a big party but the people that mattered were there, and I couldn't be happier that they were able to share such a special day with us.. So thank you again to those people..We love you..

Well that just about covers the last 2 weeks, if I forgot anything I will come back and update the note.

Weeks 4-8

Joey has been growing like a weed (at least it seems that way to me), she is still in preemie diapers, but has outgrown some of her preemie clothes (yay!!)

My mom came into town on Aug 5th, she's been helping out a lot with Joey, so I can actually get some sleep

On August 7th I took Joey for a weight check. She was getting a bit too long for her car-bed and I had a feeling she was big enough for a "big girl car-seat", sure enough our little peanut weighed 5lbs 3oz. It took the nurse about 45 minutes to get Joey fitted into the car-seat, and then it took me another 40 minutes to figure out how to anchor the base onto the back seat and how to lock in the seat into the base. It ended up that the nurse didn't fit Joey properly, so I had to have Michele fit Joey (did I mention that I am thankful for her??). But it all worked out good and Joey is getting used to her car-seat.

We went to WIC on Aug 12th and Peanut is now up to 5lbs 5oz and is 18" long!! She continues to amaze me!!

On Aug 14th I noticed her belly button was sticking out about a 1/2", this wouldn't have freaked me out too much, except that it was a bluish purple color. Of course I panicked and called the Dr. We were headed out to Pigeon Forge to meet up with my best friend (Jennie) and her kids (Mykenzie and Evan), I needed to make sure Joey was going to be ok before we went anywhere. Dr. said it was just a hernia and is common in all babies, the color is because Joey's skin is fairly thin, so we were just seeing the blood vessels. Good news is that Joey went up to 5lbs 6oz. Dr. told us to try and increase her intake to 3 oz (she was on 1 1/2 per feeding) per feeding. Past few days Joey has been taking 2 oz per feeding, but we will keep trying for that extra ounce!!

Spent the 14th, 15th hanging out with Jennie and the kids. I took pictures (which I will upload as soon as I can). The kids were so excited to finally be able to meet Joey, it was fantastic!! It might be just me, but it seemed like Joey was happy to meet them too.

Birth-4 weeks

Joey spent 6 days in the hospital, she didn't require much in the way of special care. She needed to be put under the warming lights every once in a while, and the nurses had to show us how to get her to drink (she was a lazy eater) as milk as possible in as short amount of time as possible (she has outgrown the lazy eating). She was too small for a normal car seat, so the hospital social worker got us a car bed. Joey was discharged from the hospital weighing 3lbs 7oz, from what the Dr said that itself was pretty amazing, since most babies lose an average of 10% of their birthweight in the 1st week. By her 1st checkup (9 days old) she was back up to her birthweight

Joey's 1st few weeks went by pretty quickly in a fog of post-partum blues, exhaustion, fear of losing her, joy that we still had her, and uncertainty about the future. Lucky for me my best friend and my mom were with us those first few weeks to help out (I think I would have gone insane without them).  Also lucky for me, I have an amazing sister in law who got my house baby ready while I was in the hospital with Joey.  If not for Michele, Joey would have had to sleep in a shoe box and we would have had to use Bruce's shirts for diapers.

By Joey's second check up (when she was 16 days old), she was up to 3lbs 11oz.  At her 3rd check up (she was 26 days old), she was up to 4lbs 5oz.  She was eating well, I could let her eat on demand, and was overall a very quiet baby.  SHE IS AMAZING!!

The connective tissue that was "glueing" her eyes shut is completely gone on her right eye, and is getting thinner on her left eye. Everyday she can open the left eye more and more.

We have only had 1 episode of apnea and Joey brought herself out of it, she stopped breathing for 22 seconds on Jul 9.

She failed the hearing test at the hospital when she was born, but I am not convinced she is completely deaf, I think her hearing is probably greatly diminished. Her vision is questionable as well, but it is probably too soon to tell how much vision she has.

So far no major problems, her heart seems to be normal (they do hear a grade 1 or 2 murmur, and we are still deciding if we want to do an echo) or at the very least only slightly abnormal. She had a kidney ultrasound which came back normal.

We have had lots of people praying for Joey and God has been listening, so please keep the prayers coming.

Sunday, September 13, 2009

From Conception to Birth; October '08-June '09

After years of trying and praying for a child, Bruce and I had pretty much given up hope of having a child of our own, until I found out my insurance would cover fertility treatments including IVF (In Vitro Fertilization).  So after a few cycles of hormones and 1 failed insemination attempt, we tried a cycle of IVF.  Much to our surprise we received a phone call on October 16th (about 10 days after our fertilized eggs were implanted) that I was pregnant.  From that point on we were holding our breaths waiting for a rug to be pulled out from under us.  That moment came in January 2009.  

Due to my age (I was 38 when Joey was conceived), my doctor left in my hands if I wanted to do any specialized/invasive testing (Amniocentesis, Quad Screen, Etc). We decided to go ahead and meet with a specialist to have the testing done so we would know ahead of time what, if anything, we were dealing with.  

I had a level 2 ultrasound on December 24, 2008 and there was evidence of a possible chromosomal disorder and/or heart problem. Because I was only 12 weeks pregnant we would have to wait 3 more weeks to do an Amnio (the earliest they can be done is 15 weeks), so the Amnio was scheduled for January 13, 2009.

On January 15, 2009 my world came crashing down on me.  My Doctor called me with the Amnio results, it was Trisomy 18 and that the diagnosis was considered incompatible with life.  Having never heard of Trisomy 18, I immediately went online to educate myself as much as possible. The information I found only devastated me further, it was all so grim. Reading stories of children that didn't survive the pregnancy or the delivery was extremely upsetting to me.  We met with the Doctor to discuss the diagnosis face to face.  At that time we had 2 options, terminate the pregnancy or carry to term (or as close to term as possible).  There was no hesitation when we decided to carry to term.  We knew that there was a huge possibility that Joey wouldn't survive, but we weren't going to be the ones to make the decision about when her life would end.  We left the decision about Joey's life in God's hands.  We prayed that we be allowed enough time to be able to say goodbye when the time came.

Since we made the decision to carry to term that meant we would be having ultrasounds monthly to check her growth, as well as her heart and kidney function.  My OB was kind enough to agree to let me come every two weeks for a heartbeat check.  I would be a wreck for a couple of days before the appointment.  Every 2 weeks I would brace myself for the possibility that Joey was gone, and every two weeks I was given the gift of more time.  To me her heartbeat sounded like hope. Don't get me wrong for every moment I had that I felt truly blessed to have such a precious gift, I felt cursed that I would have to watch my baby die.  I had more than one occasion that I felt I must have done something really wrong for God to punish me in such a way. 

Weeks went by and the pregnancy progressed pretty normally, except for developing Gestational Diabetes and that I didn't feel movement until I was about 30 weeks along.  It was such a relief to feel her moving, but then there were times when I wouldn't feel much movement and I of course would get scared (only to be reassured by the heartbeat check or the ultrasound).

As we got closer to our due date, we made arrangements with our OB to be induced a week early so our families could be with us for Joey's birth.  Not knowing if Joey would make it and if she did not knowing how long she would be with us, we wanted Joey to know as much of her family as possible for whatever time she had.  We also had to come up with a birthplan.  The birthplan stated how much resuscitation we would allow Joey to have, how long would we allow heroic measures to be applied, and what were our wishes for Joey's remains.  That was one of the hardest things I've ever had to do, instead of planning a baby shower, I needed to plan for the death of my baby...

I was 3 weeks away from my due date when we were told I had developed Pre-Eclampsia and that we needed to have Joey that day (this was on June 16, 2009). We had a few hours to go home, pack some stuff and notify our families that we were headed to the hospital to have Joey.  Most of our families were still in Michigan and it is a 12-14 hour drive from Michigan to Georgia, so all we could do was hope and pray everyone would be there in time to meet and possibly say goodbye to Joey.

I was admitted to the hospital on June 16th and they started the induction at around 9:00 pm.  After a few hours on the Pitocin IV, Joey's heart rate started dropping, so they stopped the IV and changed my position.  After a few minutes off the IV her heart rate came back up, so they started the IV again.  Joey's heart rate dropped again shortly after they started the Pitocin again.  At this point our OB told us that he didn't think Joey would make it through another round of Pitocin, so we all agreed that we would do a C-section the following afternoon. 

June 17th arrived and they took me back into surgery.  Now the fun was going to begin.  We had an amazing team of Doctors, Nurses, and Surgical Tech's to make sure Joey's arrival would go as smoothly as possible, but I don't think anyone was prepared for how complicated things were going to be.  Apparently, Joey had not descended into the lower half of the uterus like a normal baby would.  Because she was up so high, the Doctor had to reach up further to get her.  But not only was she up high, she had decided she wasn't coming out without a lot of coercion.  The Surgical Tech had to push on my belly to try and move Joey down further, while the Doctor was trying to pull and yank her free.  Because of the anesthetic and the meds I was given for nausea, I don't have a great concept of time here, but it felt like it was taking a very long time to get her out.  Even though I had an epidural and couldn't feel anything, I could feel immense pressure and pulling sensations in my chest while they were working on freeing Joey (it felt like they were pulling my heart out of my chest).  Finally Joey was free and against all odds we heard that first cry.  I didn't think I was ever going to get to hear her cry, I was filled with so many emotions at once; elation, fear, relief, and above everything else so much love for her I thought I would burst.

Joey arrived into this world on June 17, 2009 at 3:22pm.  She weighed 3lbs 9oz and was 15 1/2" long.  As if her arrival wasn't miraculous enough, Joey required nothing more than normal newborn care at birth and even during her stay in the hospital after her birth (more on that in the next post).

Looking back through the pregnancy and delivery I can see God's hand in this though the entire process.  I had stated before that there were times that I felt I must have done something really wrong to be punished like this, but that feeling disappeared and was replaced with overwhelming gratitude that I was chosen to be a part of this miracle.  

From the moment we received the diagnosis, we have been surrounded by more support, prayers, and love than we could have ever asked or hoped for. Even more astounding was how the support, prayers, and love seemed to multiply when Joey arrived. God has blessed us indeed.