Well, I clearly haven't gotten better at updating...

Holy mackeral, where does the time go?

Drew amazes me every day. He can tri-pod sit on his own for about 10 minute (one hand between his legs to hold him up), and sit unassisted for about 2-3 minutes. I think he could go longer, but he always laughs and waving his arms around, and loses his center of gravity. Then the face-plant happens. Which he also finds hilarious. He is also incredible mobile. He gets to where he needs to go! Mostly by rolling all around the room, but he can "army crawl" using his hands to drag the rest of his body along. That is much more tiring and not as fun as rolling, so its not used as often.

He is also obsessed with table food. Among the favorites are french fries, celery sticks, pickles, watermelon, and canteloupe. The fries are the only thing he can actual "eat" without teeth. The fruit goes into a mesh teether for him to mash and gnaw on his own time, and the celery sticks and pickles are fun to suck on. He is also IN LOVE with drinking out of cups. Not sippy-cups. "Grown-up" cups. And water bottles, and cans. If its in my hand, he wants it. And can do it! He still pretty much hates baby food. Because he can't do "tongue thrusts" with his adhesion, the food gets pushed up into his palate. He then sneezes, and well - pureed green beans end up on Mommy's last stain-free white tank top (ahem, today).

We found out that I have hyperthyroidism, which apparently isn't the most fun thing to have while pregnant. It accounts for my severe and continuing morning sickness (I'm at 19.5 weeks now, and still sick), my headaches, etc. I am going to see an endocrinologist next week to try and get on some meds or something to sort things out.

We also had our anatomy scan ultrasound last week. I really pushed to see if we could get a view of the palate, but unfortunately baby had other plans, and wouldn't cooperate. Because of that, and the thyroid issues, I go back in 4 weeks to check up.

I went in adamant that I was not going to find out if it was a boy or girl. Justin wanted to know, so we told the tech to write it down on a piece of paper. Baby would not cooperate, and after trying for the longest time, baby finally turned. Unfortunately, the tech did not tell me to look away, so I had a guess I kept to myself.

I asked Justin in car, and he asked what I thought. I told him I thought it was a girl, based on the picture. He wanted to know what made me think that. Well, honey - we saw a view from the butt between the legs - just like how we saw Drew's - only there was nothing there. Sure enough, he confirmed it.

WE ARE HAVING A GIRL!!!! We could not be more excited! Adelaide Aileen will be here before you know it. I guess I won't be so "boy crazy" after all! ;)

Time flies!

How quickly things have been moving for us! We had another AMAZING summer with Parker. I hate having to send him home to his Mommy's, because our house always feels so empty. Even with Drew now, I can't believe how quiet and boring the house is without that little ball of energy! We were able to get to the beach again, we went to the zoo, Justin was able to take him camping, and to an interactive children's museum... it was a packed summer!

As I mentioned in my last post, Drew failed his sleep study. Last week, he went in for his hearing tests. Apparently it is pretty common for children with PRS to lose hearing because of fluid build up. The test is 3 parts. In the first part, they insert an earpiece into his ear, and it does something to measure the timpanic motion of his eardrums when he hears noise. AKA, how much his eardrum vibrates. He got a big fat F in that department. Next, he sat in my lap with speakers on either side. The tech played different sound effects - soft and loud - to see if he looked to the correct speaker. Passed that with flying colors. Last, because he failed the first part, they put a scope with a camera into his ear canal to look at eardrum. He has massive fluid buildup in both ears, and when he has his palate surgery in December, he will have tubes placed in his ears to aid drainage, and prevent hearing damage. As of today at his 6 month appointment (holy crap!) he weights 18lbs and is 27inches long. He is transitioning into his crib from his Rock N Play, and from his infant carrier into a convertible car seat - Parker's. Which means Now its time to buy Parker a booster. They grow soooo fast!

Baby #3 is moving right along. I had my 17 weeks appt today, and it's heartbeat was strong in the 150s. I have lost 10lbs, and the Zofran still isn't working, but my doctors aren't concerned. Hey, I'm finally back to my pre-pregnancy weight from Drew! Haha. We go in 2 weeks for the "bog" ultrasound, but do not plan on finding out if its a boy or girl.

Justin was transfered to a restaurant in DC, so he's kept very busy and I feel like I never get to see him anymore! On the plus, I might be able to go back to bartending one or two days a week now!

Well, I think thats all for now - hopefully I really WILL get better at updating! xoxo

Hello, my friends!

Wow, it has been too long since an update.

In June, Drew went to JHH for an MRI. He was intubated in an OR/sedated, and stayed overnight. We got the results back and everything is normal. He also woke up one day, and decided he was going to take the bottle! He has rough days where the NG tube is needed, but 90% of the time, he is without it!

In June Justin and I also celebrated our 1st anniversary. We went camping for 3 days and had a blast canoeing down the Shenandoah River.

In July, Parker hitched a ride to MD via my brother/sister in law. They brought their daughter (also 3) and stayed for a week. I took Parker and Drew to the beach with my parents and younger sister. OBX was beautiful as always, and a weeks vacation was nice too :)

Drew also went to an outpatient facility in late July for another sleep study. The little booger only slept 2 of the 7 hours we were there. He failed again, so is still on oxygen at bedtime.

And our biggest news is that we are once again expecting! Parker and Drew will both be big brothers as of Feb 2010!

Where has the time gone?

Well, first we went 2 weeks without internet, then Justin broke our laptop, so we FINALLY just set up our desktop.

Drew got his MRI, everything came back normal. Parker is coming this weekend, so we are preparing for that! I am going to update in details about the MRI later, but I have dinner just about ready!

Oh, sweet relief...

Drew found his thumb! I no longer have to sit on the couch for hours at a time holding his pacifier in his mouth. Darn those latching/sucking problems!



JHH called to wake me up during our morning nap (geeeeeeee thanks) to let me know 3 possible dates they could schedule Drew's MRI. I told them all the dates were fine with my schedule, and to just work it out with ENT, and let me know. Hopefully I'll hear back soon - the earliest day they suggested was next Thursday!

It will be an overnight procedure, so I will get to spend another lovely night on a hospital recliner... but at least they have the best ice chips EVER! My favorite part about L&D, it never got old. :)

Fact: I am faster than 80% of all snakes.

Since being pregnant and now being a stay-at-home-mom, I have discovered a lot of TV that I never had any interest in before. Daytime reruns that I can catch up on during feedings (or when I'm just cuddling with my little bug on the couch) provide a vast array of tv I never thought I'd experience.

My new favorite shows:

The Office (Dwight Schrute is hi-larious)
Desperate Housewives
Regis and Kelly
Teen Mom/16 and pregnant


In other news, I have started swaddling Drew during the day. It instantly calms him ad he just looks around and smiles. I realllllly want to try a Woombie, but I don't know how it can be all that different than a regular swaddle.

Holy Houdini!

Well, as you may have noted in my last post, Drew has figured out his hands. He's constantly pulling and tugging on his oxygen/feeding tubes. I really have to stare at him ALL DAY and swoop down at a second's notice and untangle those teeny but highly efficient fingers from the tubing. It is giving me a complex, not to mention multiple coronaries.

Last night, when I put him to sleep, I swaddled him. I swaddled him tight, to bind his hands so I could rest easy. At 5am, he was still snoozing when I got up to pee.

At 8am I started his feeding pump, and laid back down to sleep (he was asleep as well). About 10 minutes later I heard some grunting. Normal for him, and I don't get him out of bed until he starts fussing, since he usually falls back to sleep til 9am. But even after the noises stopped, I couldn't fall back asleep. So, I put my glasses back on, sat up in bed, and SURPRISE!

While he was still TIGHTLY SWADDLED, he rubbed his face against the side of his Rock and Play until he rubbed off 3 layers of medical tape, and somehow wiggled the feeding tube all of the way out of his stomach, esophagus, and nose. Formula was spilling EVERYWHERE. And when I said "Oh, no, Drew!" ...he looked up at me and started to giggle. Like it was hilarious or something. But his giggle is the BEST sound ever, so how could I not start laughing too?

Mostly, I'm insanely impressed with his face-rubbing Houdini skills.

Put a new one in, and triple taped this one too. Crossing my fingers he doesn't rip it out.

Zoinks! Jinkies! ...and Scooby Snacks

Tummy time can go one of two ways in ths house. Either I put Drew on his little Buddha belly and he is giggly... or I lay him down and he screams like the world is coming to an abrupt end and he doesn't even get one last diaper change. How tragic for him.

So, I have been taking advantage of the boppy, since it missed out on the breastfeeding non-adventures. He likes the boppy, which is awesome. But for the last week... without fail... he has managed to ARMY CRAWL himself up over the boppy and like, a foot across the floor. It takes awhile, and usually ends with him frustrated... but seriously? He hasn't even rolled over yet! He's only 11 weeks! It is amazing to watch. He systematically wiggles one leg/arm, then the other. And he grunts and groans like a fat man in a pie eating contest the whole time too. But then... at the very end... he lifts up his head and smiles. My baby is a genius.



Afterwards I put him in his crack-swing, so I can get 45 minutes to pee, shower, and eat. I love baby crack. The swing, the tv, and our curtains rustling in a breeze (ok, rustling because the ceiing fan is on high) all fascinate him to no end. THANK YOU, ELECTRICITY!

He has also discovered his hands can DO things. Namely, pull out his oxygen and feeding tubes. Its gotten so bad we have started swadding him at night again. He also tries holding his bottle by himself. Which would be cute if he could. but he can't so he just gets angry.

AND, he is starting to sleep straigt through the night! I didn't get up with him at all from 11pm-8:45am last night! Yay for sleep!

In other news, Justin and I are very excited to say we have worked out our summer visitation and will be getting Parker from mid-July to the beginning of September. To prepare ourselves, I bought 2 new Scooby movies, a Scooby coloring book, and some "big kid" sippy cups. Yeah, as long as that little dude is around, its a Scooby-fest. He lives for Scooby. Or, as he calls him, "Booby-doo."

Ooops, I hear the call of my slave driver. AKA, Drew has woken up from the crack-swing induced nap.

We have progress!

YAY!

So, Thursday May 20th Drew had his 6week follow up with his pulminologist after being discharged from JHH. We loaded up the car, and headed to Baltimore. I drove, so of course Justin and I started fighting before we even got there. He is such a back seat driver when I know what I'm doing, and he falls asleep when I get lost. LOL.

Anywho, so we got there 5 minutes late after I had gotten all turned around (it wasn't in the main hospital, it was about 4 blocks away). They took us right back to vitals. Drew is 11 pounds and 7oz, and 22.5inches long. He is HUGE! I can't believe how much he is growing!!!

The pulminary fellow (no, not man. Fellow. As in she is doing her fellowship) came back to talk to us. We discussed how he was doing, and our concerns. She asked us about a billion questions, and had me fill out a "1 is none of the time, 5 is all of the time" questionairre about how Drew's condition is effecting my life as his care taker. Then she left the room to go talk to Dr. McGlinchy.

Insert battle royale here. Justin and I don't necessarily see eye to eye on Drew's progress. He has severe asthma (he technically died once from it) and has seen a pulmiologist for years. Ergo, he believes himself quite the expert. But I am home with Drew more, ad see different things. I.e, less episodes during the day (when I am home) and them really only occurring at night (when Justin is there to see them). Hence you can see why he thinks they happen all the time. But, he has taught me some things about breathing to look out for, so all in all, our knowledge combined makes us a good team.

So, Dr. McGlinchy and the fellow came back in (I swear I can't remember her name) to talk to us again. It was decided that we would take Drew off the apnea monitor, as it was alarming even when he was obviously breathing. However, they are changing the settings on his pulse oximeter to alarm at 90 now instead of 80, so it will be much more sensitive. He will remain on a 1/4 liter of oxygen via nasal canula, and of course, on his feeding pump as well. He will go back in August for another sleep study, and they are reviewing his LAST sleep study another time to see if he needs an MRI.

They also decided he has "silent reflux" which means even though he doesn't throw up/spit up, the reflux is still happening. So, we have started him on Zantac. Oh joy.

I am soooooo happy that we are heading in the right direction though! One machine down, and 3 to go! I cannot wait!!!

And on a side note, I am looking up plane tickets now to get Parker up here for the summer! And, today is Justin's, Jason's (his twin), and Isaiah (our nephew's) birthdays. So, a Happy 25th to the olders, and a Happy 1st to the younger! Love you all! Life is good :)

Mother's Day

Sunday, May 9, 2010 was my first Mother's Day. I got to spend the entire day with Drew, my parents, and my little sister (and her boyfriend). It was a very nice, relaxing day. We went to church, then had a little barbecue at my parent's house (Justin had to work all day).

I knew I wasn't getting a gift from Drew (erm, Justin. Drew doesn't have a job) but I was okay with that. We have more important things to be putting our money towards. But it really made me sit down and think: what is a mother?

The first definition I came across was "a term for the person having authority, status, and function as the female parent." Oh, okay, well thanks for clearing that up, Dictionary.com. The next was "someone that gives rise to or exercises protecting care over someone else." Much better. But how does this pertain to me?

I carried Drew for 9 months. And to be honest - while I loved him - I never really felt a "real" connection to him during that time. I loved every kick, and every hiccup... but it hadn't set in that it wasn't a cheeseburger but a baby in there. Then I went into labor. With every contraction I panicked a little more. I have to have a lisence to drive (and to be honest, I'm not even very good at that)... but they will just let me leave the hospital with a little, real PERSON?! Are you kidding me? How do you know I am equipped to handle that?! When I was told I was being rushed in for a c-section, I cried for MY lost experience. When I woke up and was told Drew had been taken to the NICU, I was kind of numb about it (although in my defense, I was high on morphine). But when I held that tiny little guy in my hands, I suddenly knew. This was it. This is where I was supposed to be. Through all the ups and downs of the hospitals visits, and through all the stresses that Justin and I face, I know that its all worth it.

I find myself a new person. The kind of person who adapts a Mickey Mouse-esque voice whenever I am trying to get my baby to smile. The kind of a person who can talk about a baby's bowel functions for an hour, and be proud and happy when he lets out a particularly big fart after a day of tummy troubles that left him cranky. The kind of person who can't think of a lullaby at 4am, so she paces the hallway singing "The Song That Doesn't End" (yeah, that happened last night).

All of my expectations of motherhood flew out the window the day Drew was born. And again when he was finally released from Hopkins. All I know now is that I am the kind of person who will put NOTHING before my son.

And thats the kind of person I want to be.

I had a plan...

That's right. I had a plan. I didn't plan to get pregnant, but when I found out I was, Justin and I sat down, and created a plan. We were going to have our healthy baby boy. We were going to use our wonderful tax return to take a vacation, pay off some bills, and have a nice nest egg. We were going to have a happy laid back life.

I read on another blog that if you want to hear God laugh, to tell him your plans.

How true is that? There is no real way I could have planned for this. I don't get my vacation, or my nest egg. The whole tax return went towards medical supplies, and Drew's hospital stay, and trying to stay afloat. My perfect baby - who is still perfect in my opinion - is not easy, or laid back. He requires every drop of my energy and attention. I have not even read a chapter in a book since he was born in one sitting. I barely eat (and still haven't lost all my baby weight -ugh) and peeing is like an olympic event - how fast can I get it in? I still have to turn on his feeding pump every 3 hours, and I haven't slept straight through a night in 9 weeks.

But you know what? I don't care. I had a friend tell me this past weekend that she looks up to me. It touched me, but it baffles me at the same time. Yes, my life is a little crazy. Yes, I've had to learn how to insert feeding tubes, and use apnea monitors. I've spent hours checking the levels of oxygen tanks, and watching his pulse ox levels drop into danger zones. But I don't know any different. And even if I did... would that change things? I don't think it would. And I don't think any of you would do anything any differently.

Yeah, my plans might have changed. Now I only plan one day at a time, and just hope to make it through without any major events. Now my whole plan revolves around keeping Drew healthy. It might be a crazy life, but its OUR life. And I love it. And thats all I care about.

We moved!

Man, life has been hectic! We moved this past week, from VA to MD. Its put us about 10 min from Justin's work, and about 30 from JHH. Both are blessings :)

Drew has really been doing well! We have finally gotten everything situated with the medical supply company, and Drew is thriving! At his last appointment, he was up 2 pounds from his discharge weight. 2 pounds in 2 weeks - not bad! I just hope that he's evening out now, cuz if he keeps up at that rate, I'll have biceps that put The Hulk to shame!

Going to my appointment next week to discuss IUDs. I see it as the only option, I never remember to take pills, and shots don't appeal to me. Neither does fishing a plastic ring out of my vag every 3 weeks. So here we are. AND, as a kicker, I got my first post-partum period last night. Now, there is something I haven't missed.

I also joined a weight-loss program. 17 pounds to go til pre-baby weight, and 26 til pre-Justin weight (hey, we enjoy eating out. A LOT.)!!!!! I am hoping to get into a bikini at least ONCE this summer. We'll see. :)

One week down!

Wow! The first week at home has FLOWN by. I cannot even believe it!

Justin and I are adjusting. Its weird, we went through a period after Drew was born where we were parents... but now that he's home, I'm a MOM. I don't know how to say the two are different, but they are. :)

Drew had a really good week. He's adjusting well, and gained a whole pound his first week home! YAY! We have also finally gotten everything we need from the medical supply company.

He had his first post-JHH pediatrician visit. He's doing well, and right on track. Yay!

Now, we've had such an incredibly difficult time with his machines at home. His apnea alarm goes off even when he is clearly breathing, his pulse ox isn't sensitive enough to pick up his respiratory rate, and forget me going out in public on my own. Four machines and a stroller? Yeah right. Justin and I went to the bank on Thursday, and even with the two of us, it was a joke.

Drew was also really constipated this week. Oh, that was a trial. He just yelled and yelled. Pedi said 1/2oz prune juie with 1/2oz water. You wouldn't (or maybe would) believe the opinions I have heard from other mothers about how babies aren't supposed to drink either. Its not like I'm giving him a bottle full! And besides, its what his DOCTOR said. So, shove it. He's finally pooing normally again, but is still really gassy. Hello, Mylicon!

In other news, its moving week! We will be out of our apartment on Thursday. I'm happy and sad at the same time. Big adjustments ahead!

Whirlwind Part 2

Well, things have been NUTS!

Justin and I were woken up to a phone call Thursday morning from the discharge nurse, asking what time we'd be in. We told her by 11am. Then we got a call from the medical supply company, asking what time we'd be back in VA, so they could drop off our equipment. We said by 4pm. We got up, showered, and went to go pick up our boy!

We got to the hospital, and Justin signed all the discharge paperwork, while I dressed Drew in his dinosaur coming-home outfit. Then we went over infant CPR, and the nurse said "ok, you can leave whenever you are ready! I am going to lunch, so I won't see you again!" YAY! We fed Drew, and were walking out of the room when...

Another nurse came running in, and told us the pediatric team was on their way down to see us, because his orders were changed last minute. WTF?! I pretty much just started crying, because I had a bad feeling. Sure enough, he failed his sleep study AGAIN, so they decided he aso needed to be sent home with an apnea monitor. And they could not get one delivered until Friday. Needless to say, we were both pretty upset.

We had already checked out of RMH, so we drove the long drive back to VA. Without our son. I can't describe the incredible heartbreak I feel every time I have left him. We went to bed, and woke up bright and early Friday to try again.

We got to the hospital, and they confirmed the apnea monitor and oxygen tank were on their way. They would be there by 1pm. 2:30 rolls around, and they are finally brought in. We hooked Drew up, put him in his Spiderman coming-home outfit (hey, the dinosaurs were dirty!) and at 4pm, finally pulled out of the JHH parking lot. With our son!

We got home, and let me tell you - it is a STRUGGLE to carry an infant, an oxygen tank, and an apnea monitor. And now, we get to add feeding pump to that list, because our rep showed up at our house! He brought Drew's feeding pump, enough medical equipment to last forever (ok, a month) and formula!

Oh wait... wrong formula. Way wrong formula. And we are missing a nasal cannula. And our full sized oxygen tank. And our NG tubes. So, he went back to the warehouse, and arrived at 1am (!) with our full sized oxygen tank. And... the wrong formula. And no nasal cannula. And no NG tubes. He said he's be back in the morning.

Well, Drew finally goes down at midnight. And his apnea monitor alarmed every 5-10 minutes throughout the night. I was in a dead panic (and am now dead tired), until 7am, when I realized we put his leads on backwards. Uhm, duh. Its only gone off twice since. ::Whew!::

We still don't have the correct formula. Apparently because its Enfamil 24/cal, its a "special order" so we will have to call the company (and not our rep) directly on Monday. Only, we only have enough formula to last til about 5am Sunday. I guess we will have to give him regular Enfamil from Walmart until Monday.

Well, he just woke up, so I have to run. But my boy is FINALLY home! :) :) :)

Whirlwind week!

Wow! So much has happened this week already, and its only Wednesday.

Drew's 2nd sleep study was Saturday night. When I got to the hospital Sunday, he was on oxygen. Apparently he had stopped breathing several times throughout the night. He is now to be on oxygen at all times :( This makes me sad, as we had been proud of the fact that he'd ony even been on "open air" but at least he's getting what he needs. Anywho, he obviously failed the study.

Easter was wonderful. Drew got 5 baskets! One from Mommy and Daddy, one from the Ronald McDonald House, one from Johns Hopkins, one from his roommates grandmother, and one from my godparents. Little dude is so spoiled! :)

Monday my godmother came to visit. We had a great time, and he loved the attention, as always :)

Tuesday we were taught on a babydoll how to insert his NG tube (feeding tube thru his nose). There was a cancellation, and he was able to get his 3rd sleep study done, to see how he did on oxygen.

Wednesday (today) we found out the preliminary results - he did much better! The oxygen really helps. It appears that on top of everything else, he has apnea. I got to insert the NG tube (really intense!) and get him all set up. We are being all set up to take him home with the feeding tube, and his own oxygen tank, and a pulse ox monitor. They should arrive tomorrow.

Best news?! He should be home tomorrow! YAYYYYYY!

Oh, and he's at 7lb15oz! Thats up 10oz from birth weight, and 15oz from his weight when he was admitted 3 weeks ago! LOVE IT!

Here's comes Peter Cottontail...

Drew's follow-up sleep study is tonight! Yay! It should have been on Thursday, but oh well. Hopefuly we still have the results Monday, but I doubt it. His pulse-ox is steady at 99-100 still, so I am thinking all will be well. I am hoping/praying/NEEDING all to be well. And then after tonight he is cleared for oral feedings. How tat will work is he will be given 80ccs (mLs) of formula (more on that in a minute) and 15 minutes to drink it all. If there is an left over after 15 minutes, it will be gavaged (fed through his feeding tube) so he doesn't burn more calories trying to eat than he is actually taking in. Once he can consume his bottles in 15 minutes, he will be cleared to go home (again, assuing he passes the sleep study). And I bet he picks up the bottle like nobody's business! He has been DYING for a paci to suck on :)

Onto my milk - there is none left. I am still on Reglan (prescription to boost prolactin - milk producing hormone), Fenugreek (herbal supplement to increase breast milk), and I am pumping with a $600 hospital grade Ameda pump. Nothing is working. I am drier than you can imagine. And yet, in God's twisted way of working the female body - it HURTS. My boobs are KILLING me. Which according to my LC (lactation consultant) is a good thing, because it means my breats are functioning (capable of producing milk) but that my stress level is counteracting all the other measures. Terrific.

I was cleared to do skin-to-skin finally though. Tomorrow I am going to take one of Justin's button-down work shirts and just cuddle with my boy. He sure does love to be held so I hope this is as successful as I hear.

Also, I have Drew's Easter outfit and basket all ready to go, so I can take to the hospital with me tomorrow. We will wait til Justin is off work to do the basket, but I will put him in his adorable outfit right away. Its white though - I hope he doesn't have any blow-outs!

I knew I wasn't crazy!

For the last 2 days, every nurse in hearing range has been telling Justin and I that Drew's tongue-lip adhesion would be removed this week. Uhm... no. We kept telling them not until his palate is repaired at 10mos, and we finally got confirmation from our plastic surgeon (he' out of town, they had to page him) that Justin and I were right, its staying in. However, they will remove the chin-bar that was put in place to prevent him from ripping out the stitches. So, no one will be able to tell he's got the stitches! Yay! His sleep study should be ordered, so it should be done tomorrow or friday, to get results monday or tuesday.

Grammy, Grandpa, and Aunt Ronda came to visit him today. He was chilling in his swing, and loved being cuddled and getting extra attention. He's such a sweetie!

In other news, my milk supply is still not where it needs to be. He was on formula for 24 hours while I tried to pump enough for at least a few feedings. It is just so hard.

Head vs Heart

I changed Drew's diaper before I left the hospital today, because he had obviously had a blowout, and I didn't feel like letting him sit in it until the nurse came in. So I un-swaddled him, undid his diaper...

...and Drew has a belly button! No more ugly stump, but a real belly button. Part of me thought "Well, thank God that ugly thing is gone" and the other part - the secret, sad, emotional part that won over - cried a little. I should have been there when it fell off. I should have been the one to find it, and throw it away (I really don't undertsand people who save them - barf!).

I just feel so unprepared. I have been a Mommy for 19 days, and I don't really think I feel how a Mommy should feel yet. I love Drew to death, and I want him safe, happy, healthy, home, and loved... but I don't feel like I know what I am doing. I don't know how to comfort him, or care for a circumcision while its healing, or how to bathe him... its a miracle I can change his diaper! And feedings? I don't have nearly enough confidence in myself when it comes to his bottles. Yes, the are weird and special, and work a bit differently than normal bottles... but I shouldn't feel NERVOUS about using them.

How can I ever have another kid? I STILL wouldn't know the first thing about newborn care.

I know that no first-time mother has really any idea what she is doing in the beginning. Or even repeat-moms, since all babies are different. But only the logical side of me knows that. And I've always been much better at listening to the emotional side of me.

Lazy Saturday...

...hanging out at JH with my littlest dude. Although I've been here over an hour, and he's been asleep the whole time. What a happy camper!

He was moved out of the PICU, and back to the Infant Intermediate Care Unit (I really just don't want to type "IICU" because it sounds like I am calling you gross, haha). He is doing AMAZING and his oxygen levels have not dropped below 100% (at least not any of the times I've been here). The nurses put him in his bouncer and turn on the vibrations, and he just sleeps the day away. Mommy wishes she could do that too!

I brought up the last of my freezer stash of breast milk with me. I was doing so well with pumping, and pumping more than he needed. But out of nowhere my supply has almost totally disappeared. Yesterday I pumped 60ccs the WHOLE DAY. To put it in perspective, he eats 75ccs every 4 hours. I have tried Fenugreek, I am drinking more water than I ever thought imaginable, I even got a prescription for something that stimulates milk production. I am just failing all around. But heaven forbid I sleep through a pumping session, because then I'll have leaked and soaked through my clothes, AND the bedsheets. Might as well just start wringing them out, it seems to be the only way I'll get enough milk to feed my baby.

Now, I'm not saying moms who formula feed are wrong - I am a believer in happy mommy = happy baby. But what would make THIS mommy happy would be breastfeeding. And since I clearly can't do that, I'd settle for a good pumping supply. I (personally) think formula looks too thick, and slightly gray-ish. Maybe my imagination, but oh well. I just don't want to feed it to Drew. I didn't get a natural, or even vaginal childbirth like I wanted... I don't have my baby home where he belongs... can't I catch a break and have a good milk supply? I'm hoping my supply comes back up soon!

In other news, Parker is on the road, being taken back to his mother. I already miss him. He was so out of sorts yesterday - but he always is when he knows he is going home to her. He hates leaving his Daddy, and he just doesn't understand. Granted once he sees his mom, he's fine and as far as I know, happy and transitions fine. But its the day or two beforehand when he knows he leaving that he's a wreck. Which just breaks my heart. I love him so much, and I really wish things were different. Hopefully in the next few years when Drew is done with his surgeries, we will be able to move to AR to be closer to him. That was our goal for this year, but clearly that option went out the window when we realized we needed specialists. And living so close to JH... its a blessing.

Geez, Drew is still asleep. Do they make bouncers for adults? I could use a good nights rest...

More good news!

Drew's Xrays all came back clear, and he is doing great on "room air" (no breathing tube). His oxygen levels are all at 95 and better! He was also pulled completely off sedation meds, and is alert and hanging out on tylenol! Although I did have to let the nurses know that Justin has severe tylenol-sensitive asthma, just in case. Did I mention he has a nurse at his bedside 24/7? How awesome is that?

Also, his geneticist called, and his Echocardiogram (an ultrasound of his heart) came back normal, as did his hearing. We are still waiting on blood tests (6-8 weeks) and Opthamology (eye doctor) though, to rule out genetics as the cause of Drew's PRS. It will be a relief to find out it was just a "fluke" (if you will), so he hopefully won't also have to deal with hearing/vision loss later in life.

Will the real Parker please stand up?

This kid NEVER eats. Unless it chicken nuggets. In a restaurant. Seriously.

Today he has had the follwing:

Breakfast - 2 donuts
Lunch - a turkey "mammich" and chips
Snack - crackers
Other Lunch - a peanut butter "mammich" and chips
Dinner - a bowl of Mac N Cheese
Other Dinner - a peanut butter "mammich" and chips

And now he's begging me for celery, but we don't have any. He also drank a glass of plain milk, and I've NEVER seen him do that. Its either chocolate milk, apple juice, or water.

Who is this kid, and where is the real Parker?

Holy Cannoli! :)

A good day!

Well, Parker and I gathered up all my frozen breastmilk, and Justin dropped us off at JH on his way to work. Parker fell asleep in his stroller, so I got to leave him with a nurse for 5 minutes so I could see my littlest dude. Imagine my surprise when I walked in, and his breathing tube was already out!

They told us it would be done aroud 4pm, and we were at the hospital around 245. He has been breathing good on his own so far, and after his xray tonight, they will slowly keep easing up on his sedation meds. Hopefully Drew will be alert this weekend!



Yeah, he still looks kinda rough, but he's doing fabulous! Mommy couldn't be happier (well, not counting how happy I'll be when he comes home!)

Other than that, I'm just hanging out with Parker today - he had a rough patch where he colored on the hardwood floors, but we cleaned it up, and moved on. Now we are watching the same Scooby-Doo movie for the third time today. He deserves it. Bonding time with "his Bean" (his name for me) cuz I'm his "bess fwen." How can you say no to that?!

A whirlwind of a week!!

Not even sure where to begin!

Monday we got a call from the Ronald McDonald House in Baltimore that a room had opened up for us - what a HUGE blessing. So, Justin, Parker and I packed up and moved in. It is a great setup, and such a gift to have this resource available to us.

Tuesday morning Drew went in for his tongue-lip adhesion. It went smoothly, and he was placed in the PICU (Pediatric Intensive Care Unit) to recover. The PICU is slightly less overwhelming than the NICU (Neonatal Intensive Care Unit), but at least Drew was alert in the NICU. Right now he is intubated (has a breathing tube down his throat) and is heavily sedated. He will stir/open his eyes... but is high as a freaking kite. Tomorrow they should be able to extubate (remove breathing tube) him, and slowly lessen up his fentanyl (pain med - comparable to but more effective than morphine) until he can just be on regular pain meds like tylenol. At that point they should be able to move him back into the Infant Intermediate Care so he can finish recovering, and complete his next round of testings. With a little luck and a lot of faith, we can be out of Baltimore in about 3 weeks!

Parker will be going back to AR (where his mother lives) this weekend. Its been hard, because he wants to see his brother in the hospital, but thanks to the lingering effects of the Swine Flu, restrictions are still in place. He just doesn't understand. But Drew will be home this summer when Parker comes back and they can hopefully get in some good bonding then.

Oh! I also had my 2 week Post Partum checkup with my midwives on Monday. I am still on lifting restrictions, and limited driving, but I am down 17 pounds, and only 10 away from my pre-baby weight!

Here is my little boy - right after his surgery :(

Big Budder/Eetle Brudder

We got Parker ad Drew matching shirts. Parker's says "Big Brother" and Drew's says "Little Brother." Of course, Parker says it much cuter, and proudly points to the shirts as he "reads" them.

My aunt is coming to JHMI today to pick me up and take me home (I have my two week post-partum check up in VA tomorrow) and is bringing Parker along. So, I packed the shirts for them to wear. They were supposed to wear them in Drew's newborn pics, but obviousy we aren't able to get those done right now. So, sadly they will be on my cell, and therefore bad quality. Luckily I got both outfits a size too big so they can wear them together this summer.

So excited to give the boys a chance to see each other again. We don't know when Parker is going home to AR, so it might be his last chance to see Drew. That makes me sad, but I know its better for Drew in the long run. I'll just upload the pic, and send Parker home with a copy :)

Mooooooo!

So, my Mom drove me to Johns Hopkins this morning to see Drew. After a slight adventure (traffic, detours, and getting lost), we made it. I was armed for an overnight stay - laptop, change of clothes, breast pump, and a cooler jam-packed with frozen milk. I was prepared, and on top of the game - I was told we'd have enough milk to last until Monday, so what I brought today (enough for 20 feedings) would be icing on the cake!

So, imagine my surprise when I walk into the room, and see the bottle Justin had been feeding Drew that morning... a bottle full of FORMULA! Uhm, hello? My baby does NOT drink formula. Apparently they ran out last night. My teeny tiny man has jumped from 40ccs a feeding to 75! What a hungry hippo.

So how do I spend my day? I pump. That takes about 30 minutes. Then I feed Drew. That takes about 30 minutes. Then I burp him, and try and get him to fall asleep. Another 30 minutes. I pee, refill my drink, grab a few bites of food... and then I pump. Repeat whole process.

Moo.

Drew's Birth Story (so condensed)

Drew’s due date was March 8th, 2010. Friday, March 5th I started having contractions. They were pretty steady at 7 minutes apart. They would last all night, only to disappear during the daytime. This also went on Saturday and Sunday night as well. So, needless to say, I was EXHAUSTED. Monday, my due date, the contractions were continuing at 7 minutes (but super mild) throughout the morning. We went to my 40 week appointment at 12:30pm, where I was 2cm, “effacing,” head down (as I had been since 30 weeks), and they stripped my membranes

Justin, Parker and I went to lunch, where contrax were still 7 minutes, but more intense. Still manageable (walking and talking, and driving) but definitely uncomfortable. After lunch we went to the grocery store. By this time it was about 3pm. After an hour of walking around grocery store (hey, I didn’t want to have to shop again for a LONG time!) my contrax were 4-5 minutes apart, and taking my breath away/it hurt to move. Jsutin had to drive home. We called the midwife, and she said to call back at 2-3 minutes. Pretty much as soon as I hung up with her, they moved into that range, so I called my mom, and she came to get Parker. We were at the hospital an hour later, and by this point the contrax were coming every 2 minutes, and I was trying not to scream through them. Was immediately admitted, it was around 6pm.

The nurse checked me, and I was at 4cm. I caved, and asked for the epidural at that point, because after 3 days of not sleeping, and the intense pain, I just wasn’t able to catch my breath between contractions. I got the epi at about 8pm. My spine is slightly curved, so it took the anesthesiologist awhile to get it placed correctly. The whole time I am hunched over, I was whimpering in pain – not from contractions, but there was something VERY solid in my ribcage, and it was almost more uncomfortable then the needles at that point.

Yay, no more contractions! About 9:45pm, the midwife came in to break my water. She did, and told me to not expect to deliver before 5am. So we called my parents, and told them not to come yet, that we’d call them when I was further along (they live 10 min away, and my younger sister would watch Parker while I delivered so my parents could be there). Midwife then did an exam, and immediately called for an ultrasound machine. I knew something was up, and asked why. She was hesitant to say anything, but finally said that she thought baby was breech. I was confused since he was head down that morning…. And for the past 10 weeks. Just as they wheeled a machine in, the doctor who owns my practice (a physician/midwife collaborative practice) walked past my room. He asked what was up, and came in. Looked at ultrasound, and confirmed that in the past few hours, my baby had indeed turned breech (yeah, that solid object in my ribs? A head). He looked at me and said “I’m prepping for a c-section now, I’ll be back for you next.”

Well, I immediately burst into tears, because that was the LAST thing I wanted. We called my parents, and they were able to make it just in time to give me a kiss. Justin suited up, and got ready to come into OR. The docs/midwives kept reassuring me that baby would be fine, and I would get to see him right away, and he’d come right back to our room, etc.

Fast forward to me in OR. The epi is working – I cannot feel contractions. I CAN however, feel the needle tests they do on the outside of the skin to see if I’d feel incision. And boy did it hurt. So I was told that I’d need general anesthesia. Cue tears. I knew Justin couldn’t come in at that point. I had to actually stop them, and tell them to remove my tongue ring – if they had intubated me with that in, that could have been disastrous!

Apparently there was a communication breakdown, and Justin was brought into OR mid procedure. The doctor flipped and kicked him out. Terrific.

The next thing I know, I am waking up and everything was foggy. But I DID understand that my baby was taken to the NICU, and that he was 7lbs5oz, 20.5inches. I was taken from recovery to Maternity, and DH went to NICU. I was pumped full of morphine, and stayed high for the next 2 days. Everything is still a blur. By Wednesday Drew was diagnosed with Pierre Robin Sequence, but the neonatologist had never treated it before, and wasn’t sure how to proceed.

We encountered many issues with the NICU at our hospital. They were unable to provide Drew with the Haberman Feeder (a special bottle for cleft palates) and my mother had to go to another hospital to get one. No one on their staff - save ONE nurse who looked about 16 - had any experience with PRS, and even that was limited. They did not do any testing normally associated with PRS and even let us know that out of all the babies in the NICU, that Drew was "of lowest priority." Good job saying that to his parents! Idiots.

He was released from the NICU to us on Friday, only to be admitted Tuesday March 16th into Johns Hopkins Medical Institute for testing and surgery. His preliminary results show he has failed his sleep study, although the final results won't be in until Monday. If he HAS failed, his team of specialists (Plastics, Opthamology, ENT, Genetics, Pulminology, Pediatrics, etc) will schedule him for a tongue-lip adhesion (yup, you heard right - they will sew his tongue to his lower lip) at that time.

If you are interested in learning more about PRS, here is one website you can check out: http://www.faces-cranio.org/Disord/PierreRobin.htm

And here is a picture of my beautiful son!