Prepare for the Rapture

It has to be coming soon. Duke won a football game. Can you believe it? Way to go Blue Devils!

Duke - 31, VCU - 7

One Month Old

Tonight's weight: 1275 grams (up 7 grams)
Oxygen: Room air most of the time. During feeding 25 - 26%
Still cute as ever and loves to be snuggled.

P is for Pirates

Way to go Pirates!

ECU - 27, V. Tech - 22

My poor baby is having a rough go at it in the TCN. I'd like to refer to it as the Totally Crappy Nursery. Since he's been there I haven't felt the warm fuzzies like I had when he was in the NICU. That's not to say he hasn't had good care, it just hasn't been as stellar as before. Thankfully Zachary had one of his old NICU nurses yesterday and I ran into our muy favorito nurse tonight and she told me she checks on him every day. Tonight I'm comfortable with Zachary's nurse. She was his nurse last night.

Where shall I start? Well, the whole bassinet debacle has ignited a whole host of issues. First, Zachary should have NEVER been moved from his isolette to a bassinet. This is the first snafu and a major one at that. The general criteria for moving a baby to a bassinet is he/she needs to be around 1,500 - 1,800 grams. Zachary was 1,322 grams. He is holding his temperature quite nicely, so thankfully that wasn't an issue. Right off the bat, he needed a nasal cannula as soon as he was moved from the isolette. We STILL have this blasted thing and now he needs just a smidgeon of air pressure to keep his lungs open/full. We haven't needed any type of assistance in this area for a couple of weeks now. Today they had to up the oxygen because he was having a few more desats. Oh and he's lost weight 2 days in a row. We're now at 1,268 grams (2 lbs 13 oz). I spoke to the nurse practioner today to voice my concerns and she was very apologetic and is a very sweet gal, BUT this is my baby we're talking about and as far as I'm concerned needs to be treated as if he were royalty. They still can't seem to figure out why he's having one too many desats and bradys. Right now he doesn't have an infection, which is fabulous. They are moving towards the direction of reflux. By all means, please do what you need to do to get it under control. I'm sure I'm not really expressing everything I find slightly wrong with the TCN, but like I said, I'm not getting the warm fuzzies for the overall picture.

His nurse tonight told me his next step/move is home. I like her train of thought. She told me she's going to get me prepared to be able to handle Zachary when he goes home. When she's working I don't have to ask to hold him. I can come right in and get him without running it by anyone. She's going to give me the 411 on bathing him this Monday. I feel comfortable with the care she gives Zachary. Maybe she'll redeem the TCN for the Perry family.

Sorry to be such a downer and negative, but this week hasn't been sunshine and puppy dogs for me. Pray this weekend turns out better for Zachary and us.

Song From Love Fest 2008

Enjoy as much as Heather and I did. FYI - He has a buzz cut now that suits him quite nicely.

Snafu in the TCN

Little guy is still doing well (thankfully). His nurse this a.m. moved him back to an isolette. He was holding his temperature nicely, but she was worried he would work too hard to keep his temperature up and in return lose weight from exerting energy to stay warm. He still has his nasal cannula, but hopefully that will be removed soon. His x-ray yesterday showed a little fluid in his lungs, which isn't uncommon for preemies. They are treating him with diuretics to dry out the fluid. Hopefully we can combat the water issue soon. The sooner we do, the sooner the nasal cannula comes out. The water in his lungs may be the main contributor to his oxygen desaturations he's been having lately. He's not having a ton, but a couple extra here and there. Nonnie all but lost her mess this afternoon. She's rather upset with the nurse from yesterday. Moving Zachary to the bassinet was very premature and she's not convinced her actions didn't set Zachary back. Watch out Duke. Nonnie is on the war path.

All in all Zachary is still doing well. Hopefully tonight we'll see some improvement from the diuretics and a nice weight gain.

Smorgasbord of News

Today was a very GOOD day! Zachary hit 4 weeks today (1 month technically on Saturday). I received the most wonderful surprise when I went to see him this afternoon. We have traded out the isolette (AKA Zachary's Playground) for a nice bassinet. Instead of sleeping in the buff/diaper he had on a t-shirt, he's up to 1334 grams (still 2 lbs 15 oz) and his feeds have gone back to 2 hours on and 2 hours off. My little man never ceases to amaze me. The only down side is he has a nasal cannula, but it's only pushing out oxygen at 23%. Room air or what you and I breath is 21%. He's not too happy with this nasal apparatus, but it will do for now. It's so nice to walk in his room now and pick him up without having anything obstructing my way. I have the preemie onesies in the wash. He will be dressed in style (Thank you RegEd for the baby gifts) starting tomorrow.

I have more to write, but I'm exhausted. John Mayer did not disappoint tonight.

Milk it Does a Body Good

ETA: I just spoke to Zachary's nurse and my boy is up 73 grams today. He now weighs in at 2 lbs 15 oz. Go Zachary Go! I guess my lastest obsession with rice krispie treats is paying off.

It must be doing Zachary a lot of good! Last night his weight checked in at a whopping 2 lbs 13 oz. We are so close to 3 lbs I can taste it. I called a little while ago to check in on him, but his nurse had stepped out. I do hope he's gained at least an ounce today.

The lactation consultant came in today to check in. She told me within the next week or so we're going to work on getting Zachary ready to nurse. She wants me to kangaroo hold him as much as possible to get him used to the skin to skin contact. She also recommended having him use his binkie as much as possible and especially when his feeds are going. Right now his feeds are rolling continuously. I'm very excited about this next step. I'll be glad when the pump and I can part our ways. I feel like I'm glued to this one piece of machinery all day long. Purely a labor of love.

While we're on the subject of love, today Zachary and I read Guess How Much I Love You (Thank you, Teresa). I do believe my little guy enjoyed our story time today. Tomorrow's story time will be Andrew's favorite book, Snuggle Puppy.

We're movin' and shakin' folks. I know we still have a long road ahead of us, but we're making great progress, which is all I can ask for.

TCN

Dr. Z just called to let me know they would like to move Zachary to the TCN (Transitional Care Nursery). I was fully expecting her to say the ambulance was waiting to take him to Wake Med and she was giving me my courtesy call. I was waiting for the ol' bamboozle move. Thankfully she didn't pull a big one on us. We are pleased with the move to the TCN. This a big step for Zachary. Hopefully he'll continue to do well. If for some reason he doesn't adjust to the TCN they can move him 10 feet down the hall and not across county lines. Think of all the money we're saving Blue Cross by refusing to move him to Wake Med. They should be sending me a thank you note with some $$$. I just saved them hundreds. Pray our little guy continues to do well. I'm nervous about this move.

Zachary Update

ETA: As I walking out tonight from visiting with Zachary, I was chatting with his nurse about how well he's doing. Dr. Z (have I mentioned her before???) stopped us and asked Stephanie (muy favorito nurse!!!), "Have you mentioned anything?" Now, it doesn't take a rocket scientist to figure out what she's talking about. Stephanie very diplomatically and politely said, "No, I believe that is something you need to handle." Needless to say I got the "We'd like to move Zachary" pep talk tonight. In my most polite tone I let Stephanie and Dr. Z know that I felt the same way I did 2 weeks ago and wasn't kosher to idea of moving. I also apologized to Dr. Z for making her the middle man (even though her boss put her there first), but she needed to go back to "the man" and let him/her know I would like to chat/meet with him/her to discuss this issue. Stephanie suggested we have a group discussion to talk about things and understand all aspects, opinions and point of views. Whatever will get my point across is what I want and immediately works best for me. Of course Nonnie is LIVID and ready to do battle. I pity the doctor who tries to sell the load of bunk to her. Pity.

I got to hold Zachary for 2 hours tonight. We cuddled some kind of good tonight. He's doing really well aside from the gas he was passing. Already acting like a true man. Sheesh! Have I mentioned how incredibly cute he is?

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I forgot to post latest stats. At this point I don't know if his weight is right or not, but we're going to go with it.

Zachary got a new isolette this week. It doesn't look any different than the one he had previously. It's just new and fresh. This occurred the day after the minor setback of the week. Anywho... the day after the setback Zachary supposedly weighed in at a whopping 1205 grams. Of course I don't believe that is correct. On Tuesday he only weighed 972 grams, they starved him for one whole day and then proceeds to come in 233 grams heavier? Not buying it. On Friday he weighed in 25 grams less at 1180 grams and last night he rolled in at his largest weight yet at 1211 grams. I know, I know, stop talking to you in grams. He currently weighs in at 2 lbs 10.75 oz. We're not sure what to believe. Was the previous isolette wrong or is the current isolette wrong? His nurse definitely thinks he's larger than 1,000 grams. Who knows?!?! I'm going to go with it until they tell me otherwise.


Can you believe I still don't know how long Zachary was at birth. I keep meaning to ask, but forget. Shall ask today during my visit.

I got to hold my little man again yesterday. I'd love to put him in my pocket book and haul outta Duke, but then again that might not be one of my more brilliant ideas. I changed his gross, poopy diaper and the gag reflex kicked in just as it did with Andrew's poopy diapers. Such a labor of love. My little guy experienced his first throw up episode yesterday too. They had to stop his feeds for 4 hours to make sure all systems are go. They were and are and started feeding him again. His feeding tube is in his nose and I'm not a rocket scientist, but I can tell you that probably won't work very long. He was pulling at it last night, I can't imagine the shape of it today. I look forward to the day when he can feed without tubes. Who knows if he'll ever nurse, but at least he'll get to taste what he's eating.

Pump time is over. I'm off to the hospital to enjoy hours of pure cuteness.

I'll post more tonight.

The Cruel Things We Do

This is what Toys R Us will do to your child. Witness for yourself the mental breakdown Andrew had yesterday when we left. Why, I'm sure you're asking? We told Andrew that we would buy him ONE toy for being smart while we searched for (what we believe does not exist) Spiderman shirt in size 3T. Knowing full well if we take him down the Spiderman aisle things could erupt into WWIII, we park the cart at the end of the aisle and bring him choices. We don't even skimp on the choices either. Finally after many rounds of choices Andrew picks a motorcycle Spiderman. He is content with his choice until we get to the check out. Against our better judgement we proceed to purchase said toy and head for the car. It goes from bad to worse in a matter of a millisecond. Robbie reminds Andrew over and over the toy will go back if he doesn't straighten up (see below for further proof). He doesn't get it together, throws a couple of toys, his shoes, his socks and eventually resorts to screaming at us. In I go to return the toy. Five minutes later I walk out with our refund and Andrew is still fuming mad. Remind us next time if we think going into Toys R Us with a 3 year old is a brilliant idea THAT IT CLEARLY IS NOT.

"No, don't look at me Mommy!" "Stop laughing at me!"

"You're such mean parents!" "Take that! (as his sneaker launches into the front seat)

Cutie Pie Pics

All Systems Are Go

Zachary truly is my wonder baby. Today we are back on feeds and pretty much back to the way things were. The doctors are going to monitor the amount of added ingredients they put in his milk. It's possible some of the components of his rocket fuel are not agreeing with his system. His tummy xray looked great and showed no signs of problems. His tummy is measuring 21 cm, which is where it was a couple of days ago. They did test for infection and the results came back negative. His nurse said she could tell when the milk hit his tummy because he zoned out and went to sleep. Right now he's bundled up in his isolette enjoying a nice cold tube of milk.

Each day he looks better and better. His skin color is gorgeous, his head is nice and round and feels like velvet, his nose is the classic definition of a "button" nose, his lips are ruby red, his eyes the bluest of blue and he's mine. I don't know how I got so lucky, but I am.

Happy Friday everyone!

Setback

Our little guy hit 3 weeks yesterday. To mark this momentous occasion he decided to put on a nice chunk of weight. Last night when we called to check on him he weighed a whopping 978 grams (2 lbs 2.5 oz). We can see birth weight in sight. That was until today.

We went to check on our little guy after lunch and were very surprised (I guess we should know by now that things can flip on a dime) to see an IV in our little guy's arm and the doctor waiting to talk to us. The cliff notes version is Zachary's tummy has become distended and rigid. They pulled him off his feeds and placed him on IV fluids. His respiratory rate was starting to not look so hot, which his nurse said was partly b/c of his tummy being big and pushing up on his lungs (pregnant moms will know what I'm talking about). Thankfully he wasn't put on a nasal cannula. If his tummy continues to get bigger they will test for infection. When we left him his tummy had gone down 1 cm. He was up 2 - 2.5 cm, so we're making progress. Pray he has a bad case of gas and blows out his diapers tonight. When the doctor came to check his tummy Zachary let some gas go. We don't even want to explore the idea of Zachary having NEC. Even though this is really minor compared to what some kids are dealing with, it's a big deal to us since we've been on the "low maintenance" plan.

He still gets cuter and cuter every day. Hopefully we won't experience too much weight loss tonight. I'm pretty confident he'll lose since he's been off milk today. Needless to say he wasn't too happy about that. He let out a couple of good cries, which pains my heart, but hey, it's giving those lungs a good workout. Have I mentioned he LOVES his binkie? He works his binkie over some kind of good. Sound effects included.

I have a ton of pictures to post, but have been too lazy (more like busy) to get them all downloaded. I feel like I am tied down to the pump 24/7. By the time I finish it's time to hop right back on. My freezer is getting full. I guess it's the least I can do for my bugaboo.

Picture Update

Just spoke to Zachary's nurse. My little man is up to 913 grams tonight. Last night we had a nice big weight loss of 58 grams, but tonight we gained that amount plus some. Way to go Bugaboo! We've been CPAP and bili light free for a complete week now. His nurse told me that he's on "rocket fuel", which is milk plus protein, lipids, and a whole host of other things. We are determined to fatten him up!

Heck No We Won't Go

It's been a couple of days since I last posted and I bet you are all chomping at the bit to know what's going on in our world. Right??

Zachary is doing really well. He has been CPAP and bili light free now for a whole work week. He's even managed to gain some weight. Last night was the first time we had a small bit of weight loss. We're hovering around 1 lb 14 oz and 1 lb 15 oz. We are SO close to 2 lbs. His sweet little head is nice and round now and soft like a rabbit's foot. His little arms and legs are still thin, but in due time we'll have them chubby. They've increased his food again and added a little protein to it.

I'm sure you're wondering why the title.?.? Well this week Dr. L (she shall remain nameless) decided to pop in and inform me that they would be moving Zachary to Wake Med by the end of the day. Keep in mind I've never met her before and not once has anyone approached us about the possibility he would be moved. He's doing really well and pretty much they need spare beds. I don't have a problem eventually moving, but my child has not been a complete week without the bili light or CPAP, he's not even up to birth weight AND I know not one thing about the doctors or care he'll be given at another hospital. He just hit 30 weeks and as far as I'm concerned isn't enough to even be considered for moving. My mom and I let the doctors/nurses know that we are not comfortable with the move and want him at Duke until he's a little older/bigger. It seemed to work on Wednesday. Wouldn't you know I get a call while I'm at work yesterday from Dr. L letting me know that Rex has a bed for Zachary. Do these people not talk amongst themselves??? Again, I told her I wasn't comfortable with this scenario and I stated my reasons why. I don't think she was listening to me. It just so happens we've made friends with a couple of families here. Baby G was doing well and was sent to a local hospital. Within less than a week that sweet boy was back at Duke with a respiratory issue. I'm not saying that couldn't happen here, but I am saying I don't want to risk the chance of that happening to my child. I'm content with the level of care we are receiving and how well he's doing. I'm not looking to fix what's not broken. My mom decided enough was enough and asked her boss to contact the attending physician. Needless to say we aren't going to be moved any time soon. Our feelings were presented loud and clear via Dr. C and I believe we've been heard. I'm open to moving him in a few weeks, but I still feel he's a little too young and fragile to be moved to another facility. The very reason we came to Duke was because the other facilities could not handle the level of care we needed should he born early.

For today we are nice and cozy at Duke. I'm watching my little monkey sleep as I type. Cute as a button and looks very much like his big brother. I've got a mass of pictures to post. I'll try and do that this weekend.

Andrew and I have date night tonight. He wants to eat Japanese and watch a movie. How'd I get so lucky?

Right Now

I'm sitting in Zachary's room watching him sleep. He is cuddled on his tummy with one arm by his head and the other tucked under him. He started out with his head facing me, but now it's facing the other way. I didn't even see him move. The lights are off in his room and if the isolette was a little bigger I'd climb in there with him and nap.

I wish you could see this little bit of perfection, all 1lb 13oz of perfection.

I'm in love...

Push Present

My 3 favorite boys surprised me with a beautiful gift this past weekend. Even Zachary at the sweet age of 1 week has impeccable taste! Good job Perry boys! I am the proud owner of the silver cable disc necklace with diamonds. Of course Robbie had to add in that he would have had to refinance the house to buy me what I really want. I say that isn't so. Guess I'll have to push out a few more babies to work my way up to the next piece of jewelry.

Progress Report

Update: I just spoke to our favorite nurse, Stephanie, and Zachary is doing really well tonight. They increased his feeds again AND he's up to 816 grams (1 lb 13 oz, up from 1 lb 11 oz). His bili # was 4.2 this morning. He has a couple of dips in his heart rate but immediately self corrects. He's definitely a tummy baby. Believe it or not, my boy lifts his head up and turns it from one side to the other when he's on his belly.

My little man has been making great progress lately. We have minor setbacks here and there, but overall we are movin' and shakin'. We have been off the CPAP for a couple of days now. Zachary is a much happier patient when his face is free of all objects. We were off the bili light for a couple of days as well, but on Sunday he had to go back under the blue light. Needless to say he wasn't happy wearing his blue light goggles. Our biggest setback is gaining weight. One day he'll gain a half oz and lose a full oz the next day. There is a direct correlation between wearing the CPAP and/or goggles and his weight loss. He thrashes around like a wild man when he has either or both of said objects on his face. All of his movements guarantee he'll be down a few oz. Today he was off the CPAP and bili light, so I've got my fingers crossed for a nice weight gain.

Zachary is on full feeds now. He hasn't had any IV fluids since Saturday. All of this good news equals his PICC line being removed. I didn't even notice yesterday when I visited that the PICC line was gone. He little arms are free of all lines now. He has his feeding tube and that is it!

I got to hold him again on Saturday for almost 2 hours. I believe holding him is my favorite hobby. Staring at him is a favorite of mine as well. It is safe to say I am head over heels in love.

Now You See It, Now You Don't

Can you tell me what's missing in the 2nd picture?

Atta Boy

Zachary had another good day today. He had to go back on the CPAP yesterday, but that's to be expected. He made it 16 hours without the CPAP on. He had a couple of heart decelerations and the nurses decided to put the CPAP on again. Needless to say Zachary was not happy with this decision. He really hates the CPAP and fights it a good majority of the time. I just spoke to his nurse and she thinks he'll be able to come off the CPAP tomorrow/Friday since he had a really good day today with his breathing, heart rate, oxygen saturation, blood pressure, etc.

His bili # dropped dramatically today. Tuesday his bili # was 8.4 and today his bili # is 4. He's below the "average" bili #. It's possible he'll be able to come off the bili light tomorrow. If they can take him off the light they can start to bundle him better and cut down on the amount of moving and thrashing, which has resulted in weight loss. They've increased his feeds to 10.6cc, so hopefully he'll start to fatten up those legs and arms. He's down to 712 grams (~1.9 oz) tonight.

All in all Zachary is defying the odds and thriving quite nicely. Robbie and I are very proud of him. Every time I see him I fall in love more and more.

I don't have any new pictures. I'm hoping to get some of him without that blasted CPAP.

Keep those prayers coming. They are working!

I'm off to catch a few hours sleep.

Love,
Mama Perry

Kanga and Her Roo

Today was a very special day for me. I got to hold Zachary for the very first time. Zachary went without his CPAP from 9:00pm (Monday night) till 1:00pm today. Since he was free of the CPAP mask his nurse thought today was a good time for me to hold him. I couldn't agree with her more. For one hour I got to Kangaroo hold my sweet little man. I fell in love with him all over again. For one hour he and I caught up on some necessary Mom and Me time. I'm looking forward to many more days of Kangaroo cuddling.

I Love My Binkie

Photo Sharing - Video Sharing - Photo Printing - Photo Books Watch very carefully and you can see Zachary going to town on his binkie.

Then There Were Four

I still can't believe I gave birth to a beautiful little boy this week. My time being pregnant was cut short by one full trimester, which is a bummer, but things could be a whole lot worse. Robbie and I still have to pinch ourselves when we visit Zachary (Zach according to Robbie) to make sure we're not dreaming.

Zachary continues to do very well. He's still breathing on his own and hasn't required any assistance since birth. That alone is a huge accomplishment! He still has the CPAP (continuous positive airway pressure), which "delivers pressurized air to the baby's lungs. The air may be delivered through small tubes in the baby's nose, or through a tube that has been inserted into his windpipe. CPAP helps a baby breathe, but it does not breathe for him. The sickest babies may temporarily need the help of a respirator to breathe for them while their lungs mature." (http://www.marchofdimes.com/). Over the past 4 days the doctors have been able to lower the pressure Zachary receives. He started out with a level 6 and is now at 4. They have started him on feeds, which is another step in the right direction.

We called his nurse this morning and he's tolerating the feeds very well. It's a good thing too, my milk cup runneth over! Again, another huge praise. I really don't want to use donated milk or formula unless we absolutely have to. (NOTE: I am not one of "those" gals who thinks women who use formula are bad moms. I used it with Andrew and he turned out better than fine. He's absolutely perfect!) I'd like to give Zachary every bit of extra help that I can. With his feedings going well we've been able to pack on 100 of the 238 grams he lost in the first few days. He dropped from 2 lbs 3oz down to 1 lb 11 oz, but as of last night he was back up to 1 lb 13 oz. I told him on my last visit that thin is SO not in right now and he needs to fatten up. We need him to go from the micro preemie diapers back to regular preemie diapers.

Zachary's bili #s were creeping up, which is normal. He's being treated with phototherapy to help reduce the bilirubin levels. He has to wear a special mask on his eyes to avoid damaging them. His levels reached 10.1 on Thursday night/Friday morning, but when we went to see him yesterday morning they had dropped down to 8.7. The numbers are still a tad high, but we'll take 8.7 over 10.1. We'd eventually like to get closer to 5 or so. I'll be glad when we get to the "comfort" level (if there is such a thing) so we can take his goggles off and see his beautiful face.

One thing we know for sure... Zachary HATES being on his back! He does everything in his power to wiggle over. I have another tummy baby on my hands, which suits me just fine. He is so restful when he's on his tummy and has his legs and arms tucked under him. The nurse gave him a binkie on Friday and he has gone to town on it. It's absolutely precious watching him suck on his binkie. The nurse gave me a blood pressure cuff and binkie to put with his baby book. I'll take pictures and post so you can see how little they are. Zachary taking the binkie and doing well with it means a lot more than just comfort for a fussy baby. The fact that he can suck and breathe at the same time are great for feedings that will eventually come from our time together or via bottle. It also means he's breathing and his lungs are doing just what they need to without any help.

The care we've received from the nurses and doctors at Duke has been phenomenal! We already have fallen in love with his nurses. They are so patient with us and all of our questions and have taken very good care of our little guy. I think they've fallen in love with him just like we have. It's not hard to do if you could see and meet him. He looks and acts just like his big brother! Andrew went to meet Zachary yesterday and handled everything very well. He was very excited to see him and didn't freak out by his size or all the paraphernalia around Zachary. I didn't get pics of Andrew visiting Zachary, but I will next time. He looked mighty cute in his kiddie gown he had to wear.

I'll try to update everyone on his progress each day, but please forgive me if I get behind a day or two. We're swimming in waters we've never been in before and it will take us some time to get acclimated to our new lifestyle. I'll be spending most of my days at the hospital. I'm going to work from there when I'm not with him. There will be days I'll venture into the office just to feel normal again and work.

Please continue praying for Zachary, his doctors and nurses and for us. It's truly God's goodness and mercy that has gotten us this far.

Much love to you all,

Mama Perry