Move over Dick Clark...

Par's ready for 2008!

Par spent most of the day eating and sleeping. This evening he has been content sitting in his boppy on the sofa watching football with his dad and trying to put his fists in his mouth. He has not yet been successful, but boy--this kid does not give up easily! He's been making a lot of cooing sounds/noises--it is nice to hear things other than crying, grunts, hiccups & poots.





Tiffany has been giving Par a little more attention today--several times she came to sniff his feet while Par was eating. She doesn't seem jealous--sort of curious now--don't worry, we aren't leaving Par alone with her--we know dogs can snap.

Par requested that his mom and dad hang out at home with him tonight for his first New Year's celebration. We are more than happy to--we might be lucky to have Par sleeping through the night a good bit, but we aren't and so we are both pretty tired. Is this what it is like to be parents? Wow...we feel so old.



We were all set to just "hang out" when we got a call saying that Par had been asked to be the New Year's Baby at my parent's house. After all the stuff with the Gainesville Living Nativity, we knew this was just what our little boy needed. He made a perfect New Year's Baby--but was absolutely pooped when we got home.



We thank God for 2007. It has been a pretty incredible year--this time last year I couldn't have even imagined what we've just been through--and now, on the other side of it, I am trusting God for what He has in store for us in 2008.

We pray for Par's friends and we thank them for their friendships with their parents.

Happy New Year!
Love,
Liz, Rusty & Par

Sweet Sunday

Par went to church for the first time today--he wore his Sunday best (the most precious baby blue daygown) and was perfect the entire time (except for the 2 times I had to change his smelly-poopy diaper so as not to offend those around us). We sat in the back and scooted out before everyone else to protect Par from any nasty germs. We don't plan on taking him out regularly--just to church--and only if we can do it this way (in and out without chatting with people afterwards).





Par was tired and so he took a nap on and off with eating in between--this whole "home" thing is hard work and I think all three of us are finding the adjustment hard (totally worth it, just hard). I can tell it will get easier every day--we just have to get into our groove.

Par was a bit fussy...




So we gave him a bath and he completely calmed down and just enjoyed getting washed and lotioned afterwards. We took his nasal canulla off for the bath (don't worry--it was like 4 minutes) and so we took some pictures--just adorable.

Par is doing well. He seems to be breathing the same as in the NICU (sometimes a little fast)--his appetite seems good. He goes through a lot of diapers and we seem to have done laundry about 5 times since we've been home! Not only are we blessed to have our precious Par with us, but he really is such a good baby.

Please pray for Par and me to get into sync with the breast feeding--the big change has not lent itself to an easy transition for this--although I know we'll eventually get the hang of it.

We continue to seek God's will and timing for our son, as well as for ourselves. We want nothing more than to cavort around town showing off our son without his oxygen tank--but we know that God has important things planned for us during this mini-hibernation. Our prayer is that we will be able to discern His will and act accordingly.

Please join us in praying for Par's friends--they are constantly on our mind.

Thank you for your continued support and prayers. Praise God for the love He shown us through our friends and family.

Love,
Liz, Rusty & Par

Lazy Saturday

Wow...the past 48 hours have been amazing. Part of me can't remember life any different than it is now--and part of me wonders how people do this without a 2 month tutorial before taking your baby home. We have the advantage of knowing how much Par "can" eat, how many times he "should" poop and how long he "usually" sleeps--so we have something to gauge how he is doing--I couldn't even begin to imagine how a new parent just figures it out.

So much has happened since we left the hospital. For the first 4 hours Par didn't make a peep--he just panned his head from side to side--taking every thing in. The drive home was long--but Par did great! He slept a good bit--I'm sure the hum-drum of the car was a peaceful sound (reminiscent of the sounds from the NICU). As I said before, we arrived into Birmingham around 12:30 AM. It was so nice to drive on familiar streets knowing we were almost home. When we turned on our street we noticed baby blue bows adorning each mailbox--I looked at Rusty and said, "Wow. There sure have been a lot of baby boys born on our street!" I was tired--now I know how ridiculous that comment was--the bows were for Par! Every mailbox on our street and the streets leading to our house was adorned with a baby blue bow to celebrate Par's return to Birmingham. It was so touching--we are so blessed to have had such a warm welcome--even in the middle of the night.



My brother Joe and his wife Julie came over with their 2 year old, Elizabeth to welcome us--and take the pictures of us walking in our house for the first time with our son. We had only lived in this house for 6 weeks before we left for Gainesville, so it is like we are in a new house--and as I write this, stuff is all over the place--hopefully the clean up fairies will come while we are sleeping tonight.

Friday morning we were up early to head to Par's first pediatrician appointment at 8:45AM--as you can see, he was so scared that he would be put back in the hospital that he went undercover(s) to hide--but Dr. Farr wasn't fooled and found Par. He gave Par a good "tire kickin' and then sent us on our way.



We hurried home to meet Orlando, the respiratory therapist who was dropping off Par's oxygen tanks. He showed up with a concentrator--but we had been told that Par had to have a tank--so we had to call Kerry at Shands and figure out what to do--Kerry handled it for us--and by the end of the day we had a bunch of tanks--and the concentrator was gone. We are very happy with the tank situation because we don't feel tied to one room--we are free to go inside and outside and from room to room.

Of course, our family (my mom & dad and rusty's mom) intermittently came by to see Par--as you can imagine, they were just dying to see him in person. It was nice to have someone to hold and love on him while he was awake so we could attempt to start unpacking and putting stuff away. My grandmother was sweet enough to bring us a yummy dinner for our first night home. We got a lot taken care of (which is a nice relief)and so later that night we had my cousins stop over to have a peak at precious Par. They all washed their hands, sprayed their hands and then finished it off with a handful of Purell--I think they were more germ free than most hospitals by the time they saw Par! We look forward to the day when we can pass him around to every one.

We gave him a bath to wind down from the day--he loved his bath and it was nice to be able to cuddle with him for a while afterwards instead of having to hurry to put his leads back on as in the NICU. He ate and then fell asleep for a while. He woke up as on cue to receive his medicine at midnight. We all went to sleep for about 3 hours and then we all woke up for Par to eat. We all slept late and took our time getting out of bed this morning--it was so nice to cuddle with our family--Tiffany included.

Today has been even better than yesterday--Par has been very laid back and eating well. I wore him and his oxygen tank around the house while I unpacked--he slept soundly in the pouch--a great gift from the NICU is that Par can sleep through anything. Even so, we put him in his crib tonight for the first time--thinking he could get a peaceful nap in before he eats again (he was crying like he was really tired)--it was too quiet and he was upset so of course I scooped him up. I am wearing him now as I write the blog--I love having him right next to me--I think I'm going to be the one to have separation anxiety when he leaves for kindergarten...






I can't believe I'm already home--it still seams surreal to me--I honestly feel like I just found out that he has CDH. But looking back, I feel good knowing that I wouldn't change a thing about each step we took--going to Gainesville was the best thing we could have done.

Please continue to pray for all of Par's friends and their families--Jasmine called me today, please pray especially for her as she continues to deal with her great loss.

We are so glad to be home.
Love,
Liz, Rusty & Par

Is it morning yet?

I know I said I would update in the morning--but is it morning yet?

Par has been a perfect angel--he's been sleeping, eating, pooping--just like he was in the NICU--and he slept a long time during the night--we had to wake him up this morning! Rusty didn't sleep much at all--he kept "watch" over Par and me--making sure nothing happened to us. And me, well--I didn't realize how difficult it would be to take care of Par and feed him AND to continue pumping--I know it will get easier to manage as I start breastfeeding more and more (because then I won't need to pump). Par likes his home and his "sister" Tiffany (Tiffany refuses to acknowledge Par at this point).

Words can't express how thankful we are to God for leading us to Dr. Kays and Shands/UF--the nurses and staff made our journey easier to make--giving comfort, reassurance, and the occasional comic relief. Thank you for giving us our little boy to take home.




We continue to pray for Par's friends and praise God for their friendship and their progress.

Thank you for being a part of our son's recovery.

Love,
Liz, Rusty & Par

We are Home!!!!

We left Gainesville around 3:00pm and made it to Birmingham about 12:30AM--Par is doing great. We are pooped! We will update in the morning with more info and pictures once we get back from the doctor. Thank you for your continued prayers.
Love,
Liz, Rusty, Par & Tiffany

On the 2nd Day of Christmas my true love sent to me...

Two portable oxygen tanks for our Par Rich in a pear tree!



That's right! We had 2 tanks delivered to us in the NICU and the instruction on how to use them today...why, you might ask? Because we're going home tomorrow!!!

We are ready. We feel very confident about taking Par home and caring for him on oxygen. We already have doctor appointments in Birmingham set up for Friday and we are planning to return to see Dr. Kays in 6 to 8 weeks (per his request). We praise God for such a quick journey--we know it is only through Him that we are leaving tomorrow with our precious baby--glory to God for our miracle!






Today was pretty exciting considering this big news. We think Par knows something is up... Dr. Kays came by to see Par--he said he was doing great and agreed that it is time for us to hit the road. He said Par would stay on oxygen definitely until our next visit--and 6-8 weeks should give Par plenty of time to gain strength and the ability to breath without help. We can't thank Dr. Kays enough for all he has done for us.



Our nurse had Par do a "carseat study" today--that involves Par sitting in his carseat for an hour while still hooked up to see if his numbers stay up--he passed! Obviously that would have posed quite a problem if he hadn't passed!







We had a celebration/farewell dinner with Josh and Tina tonight. This was planned previous to us knowing we'd be leaving--but the timing is perfect--they have been such wonderful friends on this journey here in Gainesville and we look forward to seeing them when we return in 6-8 weeks.

We asked the nurses to be a little more lenient with Par and Ella tonight--considering they won't see each other for a while--I know Par has been reprimanded many times this week for crawling over to Ella's side of the NICU(gasp!)--but I think it is only fair to let them have fun on Par's last night.



We don't know exactly when we are headed out of Gainesville--but we will definitely let you know when we have arrived home to Birmingham, Alabama!

Please continue to pray for Par's friends and specifically for there progress and God's perfect timing. We thank you for your unbelievable support to us during this incredible journey. Your thoughts, prayers, notes, emails, phone calls, etc. have meant so much to us--you've been a huge source of our strength.

As I finish this--I realize this is my last blog update from here in Gainesville--it feels like yesterday that I just arrived here--ironically I have the same feelings about leaving as I did about arriving--this is definitely bitter-sweet. As much as I hate to admit it--Gainesville has become our home and there are comforts to it at this point (uh--Shands Hospital and Dr. Kays to name a few)--so Birmingham will be another adjustment for us--but I'm sure it won't be too difficult.

Goodnight...

Love,
Your Homeward Bound Family--Liz, Rusty & Par (and Tiffany)

On the first day of Christmas my true love sent to me

A Par Rich in a pear tree!!!



So, my favorite Christmas present this year (aside from Par) is the pear tree my aunt and uncle gave us. We don't know where we'll be planting it--but I can't wait--I'm looking forward to the year I can send out a card with our little Par actually climbing in our own pear tree.





MERRY CHRISTMAS!!!! Today has been such a blessing--we woke up late (obviously)and then rushed in to love on our precious little boy. He had just woken up when we arrived--perfect timing to feed him. His nurse was wearing antlers--she was very sweet--it must be hard to care for other people's children when you have your own at home--we really appreciate all the people who worked last night and today to help take care of our little Par.



Rusty and I gave Par a special "Christmas bath"--which really isn't any different than any other bath, except today is Christmas and it was especially drafty in the NICU, so Par was a little chilly--but he still enjoyed it, as always. And as always--we took a ton of pictures--but we won't bore you...









Later, Boo came to collect on her Christmas present and held Par for about 2 hours--he was very good for her--and it let me have time to go spend some time with Sally--and get a little hit of caffeine to help with the day.



Par ate, slept and pooped like a good little boy--he was pinned down by one of Santa's helpers that apparently fell out of his sack last night. Rusty and I got into the NICU just in time to save him.




Par is doing really well--we can't wait to hear what Dr. Kays thinks (he returns tomorrow)--and we are really excited about the thought of coming home--we get confirmation on the day tomorrow--so please pray that everything will run smoothly. We continue to pray for God's timing and patience.

We pray especially for Par's friends and their family today--a NICU Christmas isn't easy--but we know it will make all the rest even sweeter when we spend them at home.

May God bless you and your family on this holy day--Praise be to Jesus Christ, our Lord.

Merry Christmas,
Liz, Rusty & Par

Our Baby's First Christmas Eve...

...was just lovely.



Today we spent time with Par then the four of us had a fantastic Christmas dinner in the hotel. Afterwards, Rusty and I stopped by to see Par on the way to mid-night Mass which was actually at 10:30pm. After midnight mass we went to wish Par a Merry Christmas and give him his first Christmas present. He was more interested in his bottle than he was the present.

Earlier, we met with the discharge coordinator--she gave us CPR lessons and lessons on how to give his medicine. We also tried o take him off oxygen today but it was just too soon--his saturations hovered in the mid-90's--they need to be 98 or better. So Par will be going home on oxygen. Par is still gaining weight--even with the breastfeeding--and with discharge in the future, they discontinued his fortifier that was in his bottle--hopefully he's getting enough calories now. It looks like Thursday or Friday is the big day...we'll know for sure on Wednesday.



When we returned to the hotel (1:30AM) we had dessert and opened presents with Sally and mom. Needless to say, it is WAY TOO LATE right now...around 3:30AM...We continue to pray for Par's friends and their families. Rusty and I wish everyone a Merry Christmas!

Love,
Liz, Rusty & Par

Christmas Eve Eve

Par had a rough morning--we had told him Santa was coming to visit him--he thought we meant today--when he found out it wasn't today--he was very upset.

Par's oxygen was weaned today--yay! They weaned it to 100--if he continues to sat well (between 98-100) then they will try him at room air in a day or so. This shouldn't be any hold up on leaving--either we go home on oxygen or we go home not on oxygen--either way, we go home--it is so close.

Remember the last week of school your senior year of high school--that is what it feels like--I still have to leave Par each night and the nurses are still "in charge" of him--but soon enough we'll be FREE--I think even Par can feel something coming.



We thought Dr. Kays was returning today--but he isn't back until Wednesday--we hope he has had wonderful holiday (and that he'll hurry home to kiss us goodbye!)

Today was just another day of eating and sleeping--and looking at the cutest baby in the world! He did really well eating--it is hard to believe he ever had trouble--he is a pro now--still the hungry hungry hippo!



Of course, we continue to pray for Par's friends and to thank God for every blessing--including the gift of knowing His Son--we wait in joyful hope for the celebration of our Savior's birth.

May God bless you.
Love,
Liz, Rusty & Par

He got the part!!!!

The shepherd boy is sick-- so Par has been called in to replace him--he has been wearing his costume all day--and practicing his lines...

"Look, up in the sky--the Par of Bethlehem" (I don't have the heart to correct him--it is because we sing "Twinkle Twinkle Little Par" that he is confused)

Par's oxygen was not weaned today (disappointed) but he had a great day and I hope that they will wean it tomorrow. There wasn't anything that kept them from weaning--it was a different nurse practitioner today and she just wasn't comfortable weaning it without watching him herself for a day--she is just being cautious--we are glad she is looking after his best interest--we are being patient--another day won't hurt him (or us!).

He has been eating well--the nurse this morning commented on how much happier he seems on the "on demand" eating plan--as far as I can tell, he has a good appetite and is keeping ahead of his minimums--I hope this sticks.

Par had a bath today--his nurse said it was time...thankfully Par still loves them! I think he likes them because he gets another view of the NICU--he is so curious about everything--keeping him visually stimulated is quite a chore--he constantly wants to be turned, propped, etc. for different views.



We worked on his standing skills today--he loves his boppy and I put him on it for some tummy time--immediately he started pushing up with his legs with a lot of force--he was pushing himself into the standing position! The best part of this is the grunt that comes with each push up--precious!



Word is out on the street about Par's departure--his NICU 3 nurses have been dropping by to see him and make me promise to come visit when we have his doctor's appointments (we'll be coming back in 6mos. and then once a year for appointments with Dr. Kays) So--although it changes each day according to our nurse or nurse practitioner--the consensus is that we will be discharged sometime before New Year's--but again, that could easily change tomorrow--we are still just praying for God's perfect timing.

Rusty's mom is heading back to Birmingham tomorrow and my mom and sister are heading down here tomorrow for Christmas--we pray for save travels for both of them.

We thank everyone for the prayers--please continue to pray for Par's friends.

Much Love,
Liz, Rusty & Shepherd Boy Par

The difference a day makes...

and of course, lots of prayers.



I learned something important this morning--pray without ceasing and speak up for your child. Par's NJ tube was removed shortly after I arrived this morning, the nurse practitioner changed him to "eating on demand" and he had is MRI done at about 6:30pm this evening. I really don't know what to say. I went back and read my last post--it couldn't be any clearer how our Father really does listen to His children--we just need to ask and trust Him. Praise God for His endless blessings.

When I got there, our nurse had indicated that she had heard the discussion about the NJ tube and that they thought it should come out. Then the nurse practioner was called away and so the order was never written. That was disappointing--until our nurse said that we can't help it if he pulls it out himself...he extubated himself, he took himself off CPAP--it seems only fitting that he would pull his NJ tube out too (he actually pulls on it A LOT!) Unfortunately (or fortunately--we wouldn't want his nurse in trouble) he wasn't able to get it out...but thankfully the order finally came and so the tube came out--instant relief for our precious angel!





Par also had his hearing tested today and passed with flying colors! We are thankful but we aren't surprised--Par is SO alert and curious about every sound--he is great about turning towards people when they are talking and making eye contact--he looks so interested it seems like he has something to contribute to the conversation.



The nurse practitioner said she would probably turn his oxygen down to 100 tomorrow (keep praying) and see how he tolerates it--she indicated that he has a good chance of going home without oxygen (yay!) but still on his lasix--Dr. Kays tends to feel more comfortable knowing there is some form a lung treatment (the lasix is a dieuretic that helps keep fluid off his lungs).

We feel completely overwhelmed by everything that happened today--and Par is completely pooped, too! He loves his new eating schedule--you can tell he is way more relaxed now---even just after 12 hours. Glory to God for His gifts!



Please continue to pray for Par's friends--we ask that God will overwhelm them with His goodness and love.

May God bless each of you.

Love,
Liz, Rusty & Par

Papa-razzi

Happy 7 weeks Par! Thank goodness the Papa-razzi was there to capture a billion pictures of our little baby boy!

I was frustrated again today--I don't know why I have been two days in a row--I am so thankful for how far we have come--I guess we are just so close and I am growing impatient as Par's mother. At this point, there is less dependence on the doctors and nurses and more dependence on the parents when it comes to how Par is doing. I say this because he has less of a need of medical treatment and more of a need for stimulation, love, holding, etc. from people who will be caring for him. So it is frustrating when Par is doing great with eating and the schedule they have for him seems to set him up to fail. For instance, he is scheduled to eat at 8,11,2,5--but he actually prefers to eat every 1.5 hours during the day and every 4 hours at night--I see this clearly, but there haven't been any changes made to accommodate his needs. I have tried to express this before and I did it again today. I have a feeling this time my thoughts will get to the right person. We'll see tomorrow.

The thing that set me off this morning is the NJ tube--I want it out because I can tell it is causing issues with his eating--he knows it is there and he seems frustrated by it when trying to breast feed (it seems to get in the way more then). When I asked about it being taken out (because I thought it would be gone by now) the doctor said it would probably be taken out sometime next week, but that she'd talk to the rest of the team about it. When I asked about it being removed tomorrow, she laughed and basically said when pigs fly. Par wants to know what the hold up is.



She also delayed Par's MRI for next week instead of tomorrow. At this point, we know we will not be home for Christmas. It is sad but I am glad to know that now--I can just focus on helping Par eat. Our new hope is New Years.

I was stressed today, but I still enjoyed being with our precious son. He ate well and slept a good bit. His 2pm feed was interrupted by his echo cardiogram. Strangely, the guy who did it walked up and said, "Well hey there Par! I have a friend named Par" I couldn't believe it--I was almost certain we had the only one--but nope--there are others out there--and his name also came from his initials.




Par's Gigi arrived today about 5pm and got to FINALLY see Par in person with his eyes open. He was busy eating but gave her some lovin' a little later. I was supposed to breastfeed at 11pm tonight but Par was hungry at 10pm--so I gave him a pretty big snack. I knew he would probably last longer than 11--and then I didn't know how he would even do (because he would be so tired)--plus, I didn't want to be driving home at 1am...so I left and they gave him a bottle. I can't wait to be home so I don't have to make these decisions that make me feel so guilty!

We received a precious gift from the March of Dimes today--it was an ornament made into a Rudolph out of Par's own footprint. This was done for all the NICU babies...how embarrassing that our son's monkey foot print barely fits on the snowflake!




We continue to thank God for his precious gift of this amazing child! Praise God for his gifts of love! We also lift up Par's friends and pray for their progress.

Thank you for all of your thoughts and prayers.

Love,
Liz, Papa-razzi Rusty, & Par