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....

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.

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.

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.