Bye, Bye Bottle

Two weeks ago we woke up and decided no more bottle for Aaron. We've tried the sippy cup before but he absolutely refused to take it. This day was different; we were determined. When Aaron woke up, it was the first thing we offered him. This was something we hadn't done before. We usually would try it in the middle of the day and at that point he had already had his mouth on a bottle. But, this worked like a charm and he hasn't looked back since. We are still working on getting him to hold the handles but that'll come with time.

All table foods. No more bottles. Our little boy is growing up!

SAHD

About a month and a half ago, Clayton decided to start staying home with Aaron. Since he accumulated all the hours he needed to get his electrical license, he wasn't as eager to be driving over an hour each way to work everyday.

Clayton being a stay at home dad was one of the best decisions we've made for Aaron. Although he's been sleeping through the night since last September, he never had a predictable bedtime or feeding routine. He was always thrown off when we would pick him up from my parents' house and bring him home. He'd just want to hang out with us since he wasn't with us all day. Now, he was in the same environment all day and could just focus on a routine. Within a few days, he was consistently sleeping and waking up at the same time. Even if we were out of the house (at dinner, a weekend trip to NJ, etc), he'd still stick to his schedule. And, there were so many improvements in his therapy. He no longer had to fight wanting to play with his cousins during therapy at my parents' house. He was home and all was quite. Aaron could focus and he did!

Clayton also took the time to start some home projects. He installed an over the stove microwave/hood (we had a regular hood and counter microwave which took up too much room). In addition, he painted a wall in Aaron's room chalkboard black (for vision therapy) and hid all the wires from the wall mounted TV to the wii/dvd player/satellite receiver/stereo system behind the wall so it's all neat. Clayton also got a gym membership and started taking Aaron to the pool 2-3 times a week. Most importantly, he passed his licensing exam and officially became a licensed electrician!

Clayton stayed home up until last week when he got a call for a job 5-10 minutes away. It's a company that does residential solar installation. Clayton's never done residential professionally or solar installation so he couldn't pass it up. Besides, this was the shortest commute he's ever had. So, now I'm staying home with Aaron for a bit while I find something closer. God will work something out, he always does.

Ready to Ride

Look out, Lance Armstrong!

Cerebral Palsy

Aaron was diagnosed with CP back in June. This was by far one of the hardest appointments we've ever had. The diagnosis itself wasn't completely unexpected yet it was so overwhelming to hear. There was something about those words coming from a doctors mouth that was so foreboding.

The day was exhausting, too. We had two doctors appointments a couple hours apart so I pretty spent the whole time between them crying in the car and texting family to let them know the latest news. No one, including me, really know what to say. And, what was said didn't seem to be helping. Clayton didn't even go to work that day. We just hung out as a family.

I don't remember praying as passionately as I did that night since the day Aaron was born. I needed help and motivation to feel like I could get through life. I don't even remember falling asleep but I did.

The next morning, Aaron was up before I was. When I went to get him from his room, he was laying there playing and he smiled right up at me when I appeared at his crib. Nothing was different than every other morning he woke up. He ate the same, laughed the same, slept the same. Nothing was different. His diagnosis from the day before lost all meaning. It was just a label. A way for the doctors to put him in a category they could understand and treat. For me, it is something more localized to pray about.

Since then, and as always, Aaron continues to get better and stronger every day. He is able to sit up by himself for very long periods of time. Usually he just topples over when he is laughing too much from playing! His left hand and lower half have been feeling more and more relaxed. And he has almost completely switched over to chunky, crunchy, tasty table food (he's even been crying for actual food when you try to give him a bottle or just pureed baby food). And we can only thank God for these huge advances that he's made in such a short amount of time.

Soooo.....

So, we bought our first house! It's been just over a month and we are settling in very nicely. We actually saw it on a whim the night before my surgery in April. We fell in love as soon as we set foot in the front door and put in an offer the next day, which was immediately accepted. It's amazing how well things work out when they're meant to be. We actually started looking at houses well over a year ago before we even moved up to VT and nothing worked out. Even the few we did put offers on we had no luck, due either to bad inspection reports or sellers unwilling to negotiate at all. But this was the house waiting for us!

It's a cute little cape in a newer development so it's only 5 years old. It's just under 2,000 sq ft and has 4 bedrooms and 2 full bathrooms with a full basement. We can totally be here for a long time. Of course, Clayton's got some big plans already reeling in his head.

The day after we closed on the house, Clayton graduated from the NJATC. And just this past week he finished up the hours he needs to get his electrical license! This has been 5 years in the making so it is quite an accomplishment. I'm so proud of my journeyman.

I will post pictures of the house soon.

Making Mama Proud

It's never too early to start good oral hygiene practices, especially when two more teeth have made their way in! It's actually almost scary how intently he's brushing...

Zzzzzzz

Aaron had a sleep study conducted at the end of April to try and figure out why he's been needing oxygen while asleep. It was actually done in a two-room hotel suite, which was pretty cool. Clayton had one room all to himself while I slept in bed with Aaron. He pretty much only got 4 hours of solid sleep. The rest of the time he was pulling the cannula out of his nose and wrestling with the techs as they tried to put it back on. But, 4 hours was plenty for them to analyze.

Last Tuesday we saw his pediatric pulmonologist and were able to read the report from the study. Initially, his doctors were all concerned about central hypopneas in which the brain isn't sending proper signals to breath deep enough or at all. But, the study showed that Aaron had obstructive hypopneas! So, there is nothing wrong with the signaling, there's just something there that is blocking his air. All I could think was, "Thank you, God!" When faced with two mountains to climb, this one seems way more manageable! So, we are off to see the ENT in June and hopefully be rid of the stupid pulse ox machine that beeps incessantly through the night!

Oh, and they weighed and measured him. My little snuggle bug is 19lb 10.8oz and 28.5in long!

It's Gone!

I came home yesterday from the hospital sans fibroid! The surgery went well. It took longer than expected (5 hrs instead of 3) because it was bigger than they thought. Turns out that the fibroid was much bigger than my uterus itself. And, it was located completely in the top (fundal) wall of the uterus. It didn't penetrate into the cavity so they only had to cut through the outer lining of it. They are still recommending c-sections for future births because of how much they took out. But, the robotic procedure worked very well and I only have 5 tiny incisions instead of a giant one. I am quite sore but that's what prescription pain meds are for. I still can't pick Aaron or anything heavy up, which is the toughest part. A few weeks of rest and I should be back to normal! Thanks for the thoughts and prayers.

4 Months Pregnant?

Don't worry, I'm definitely not pregnant. Although the current size of my uterus has lead many medical professionals to think that.

So, I had an ultrasound at the beginning of January and the fibroid is just as big as it ever was. The consensus: get it out! Although there isn't much research stating that uterine fibroids lead to premature births, when my OB discuessed my case with a room full of collegues, they all agreed that mine did. I received a shot that day of Lupron to hopefully shrink the fibroid 30-50% and make for a less invasive surgery. Essentially, the shot stops estrogen production for 3 months, putting me in a medical menopause and giving me some pretty nasty hot flashes.

I had my pre-op history and physical a few weeks ago and my doctor said the fibroid feels smaller. So the plan is to start with a robotic myomectomy and move to a classic c-section incision if they need more access. With the robot, there will be 5 small 1cm incisions around my abdomen. In the one right above my belly button, they will put a camera. Instruments will be placed in the other 4 sites and the surgeon will be controlling them from a station in the operatory. Pretty crazy. They will then section the fibroid out and use something likened to an "apple corer" to free the fibroid up and suck it out one of the small incisions. If this wasn't being performed at DHMC I'd have reservations. If all goes well I could be back to work and my normal routine within 2 weeks. If, however, they can't get to it all with the robot, they will make a c-section incision along my bikini line. With that procedure, I will be off my feet for 6 weeks. I can't even pick up anything more than a milk jug.

Needless to say, we moved into my parents house for the next few weeks, since I won't be able to take care of Aaron. Today, I am on a strict clear liquid diet. And, I had to do a "bowel prep" with magnesium citrate. I even had to leave work early today because my terrible migraine turned into wretched vomitting because I can't take any medication for it. Fortunately, I am first on the schedule for surgery tomorrow so it will all be over soon.

I am praying the the robot works. But mostly that God is with me and the surgeon keeping us all safe! I will update soon.

Speed Racer

Over the last few appointments in 2009, Aaron's doctors where going back and forth between him needing a helmet to correct his plagiocephaly. The main reason for not fully recommending it was because his face was symmetrical and it may correct on it's own. But, it was something that really bothered me and I always stared at while holding Aaron. Besides, we had tried various different holding/sleeping positions to try and correct it but Aaron always managed to turn his head to that same spot every time. So, when they suggested we meet with a pediatric plastic surgeon just in case, we made the appointment as soon as possible. Usually, they hold group appointments with a few families but through a strange course of events, we ended up with a private visit with the doctor. It was great! I got to ask all the questions I wanted and the doctor spent a lot of time with Aaron taking measurements. His diagnosis was that Aaron was just on the cusp of what is considered minimal for insurance coverage, which is usually pretty strict. In other words, Aaron didn't neeeed it, but we might want to consider the helmet so it will be "one less thing to worry about" in the future. After some thought and convincing of Clayton, we opted for the helmet. Although he didn't absolutely need it, I didn't want to regret not doing it 5 years down the line. This was the only time we could do it since Aaron was nearing 1 year old and his fontanelles would be closing soon.

We met with an orthotist who cast Aaron's helmet. It was the saddest/funniest appointment ever. The orthotist had to place layers of fabric soaked in plaster over Aaron's head (covered with a tight sock with an opening for his face) for 10 minutes or so before removing it. Aaron was so upset and hysterical crying. That's the sad part. But, he looked sooo cute with the helmet mold in place that I couldn't help but laugh. It was over before the 1o minute mark and as soon as the bottle hit Aaron's lips, he was content again.

Two weeks later (March 2nd), he received his helmet. The orthotist suggested to ease babies into wearing it full time over the course of a week so they get used to it. Amazing Aaron got used to right away and was wearing it full time the day after we got it. Two weeks ago (March 30th - 4 weeks wearing full time) we went in for an adjustment because it as getting really loose and the orthotist was very pleased with Aaron's results already. Despite the recommended treatment of 4-6 months, Aaron probably needed a few more weeks and he'd be done! Clayton and I are so pleased with the results as well. Aaron's flat spot is no longer there. He's got an almost perfectly rounded little head! So, here is our little speed racer:

One last thing I want to mention about our appointment with the plastic surgeon, because it made my day then and still makes me smile when I think about it now. After all the medical talk was done, the doctor said he's met lots of mothers of 24-weekers and that there is always a "look of anguish" on their faces. He said that I didn't have that look at all. After smiling and looking at Aaron peacefully sleeping in his stroller I told the doctor that prayer definitely helps and that Aaron didn't deserve any of that. He's the most amazing thing in my life, how could there be any anguish associated with him? Then he simply said, "You're a good mom," and smiled. What he observed in the short time we were together meant so much to me...and it still does! God is so good and I am so thankful that people can see his strength in me through all of this.

Happy Birthday!

Last year today, God blew breath into Aaron in a bathroom stall and our lives changed forever. Happy 1 year birthday to the most amazing and precious miracle in our life.

We love you, honey bear. Thank you for fighting for us. We couldn't imagine our life without you and we thank God for every day that he gives us with you. Here's to many more birthdays to come.

Happy Hippo

How much fun could a purple vibrating hippo be? Just watch!

No Longer a SAHM

Part of the reason I've been super bad at updating is that I am no longer a stay-at-home-mom. I will be starting my 3rd week at a full time job tomorrow! I recently changed offices because the dentist I was previously working for wasn't as ready to retire as he thought he was, so he couldn't offer me more days. Working one day a week was really nice at first while we got adjusted to VT life and any appointments that Aaron may have needed. But, 4.5 months into it, it became really dreadful to go to work. That one day would haunt me all week long. Besides, since the other doctor was still working, there weren't really enough patients to keep me busy. So, I started looking for another job. There were a few offices that offered me part time positions. But, considering my experience with the previous office, I decided to take a job an hour away that was full time. Despite the drive, the job is pretty great. I'm making over 42% more per day compared to the other job and seeing a full schedule of patients 4 days/week! The staff is really great, too, as is the other doctor I'm working with. He loves oral surgery and endodontics so he's been showing me a lot of stuff I wouldn't normally be doing. I actually look forward to going to work and doing what I love doing and have been trained to do. And, working full time is really great for keeping Aaron on a schedule.

I hope this video makes up for the lack of posts. It's Aaron trying to feed himself. He's actually doing a pretty good job!

We Have a Tooth!

Can you see it?

It's the lower right central incisor and the one to the left of it isn't too far behind! Aaron had been "teething" for a few months now but I knew it was really coming in because earlier last week he got a very bad runny nose. No other symptoms of a cold, just a runny nose. About 2 days ago though, we were able to feel it. It's A-dorable! Here's to more teeth!

I Forgot to Mention...

At Aaron's development appointment the first week in January, the doctor mentioned that he was gaining too much weight! Can you imagine that?! Those words are music to the ears of a mom of a 1lb 14oz baby! We had already cut his 30 calories/oz formula concentration to 28 calories/oz so we went ahead and cut down to 24 calories/oz after that appointment. And now, Aaron's eating about one-third of his food as solids which we aren't concentrating at all. So, today he weighed in at 16lbs 1.9oz. A whole 6oz since his discharge from the hospital last Tuesday (15lbs 12oz), which is still toward the upper limit of what he should be gaining. This kid is so amazing. Oh, how I love him!

Development Assessment

At the beginning of January, Aaron had a follow-up appointment with a developmental pediatrician. We had first seen her back in August. Anyway, our PT joined us for this visit which was great because Aaron got hungry halfway through and didn't want to do anything other than eat! She was able to attest to all that he really does when he wants to.

The doctor was very impressed with Aaron. He looked very healthy and well. He was being such a flirt and couldn't stop smiling at her voice. She then played with him a little bit and tried to get him to do a few things that babies his age (both actual and adjusted) should be doing.

Her assessment was that cognitively and socially, Aaron is pretty on track. He is laughing/smiling appropriately; he is cooing, screaming and blowing bubbles. And, he listens so intently. She could tell he was thinking about the new voices.

In the motor department, although he has been reaching for things, bringing them to his mouth, and using both hands, etc., Aaron is pretty behind, mostly due to his delayed vision. She could tell that he definitely has some tracking and focusing going on, but overall his vision is not where it should be for his age. Most of the time, if you put an object in front of the child, he would reach forward for it. Aaron doesn't do that yet based on site alone. He will if you allow the object to make noise. He also isn't too fond of tummy time because there is no visual stimulation for him to look up. Instead, he gets his fist in his mouth and chomps aways! It is these things that are hindering his motor advancement.

Her suggestions, to start therapy with the Vermont Association for the Blind and Visually Impaired (VABVI). She believes that Aaron has Cortical Visual Impairment (CVI) and starting therapy as soon as possible is the best way to enhance his vision. Also, we are trying some new gagets out; mainly a corner seat with a table to help him sit up on his own and play sitting up and a tummy wedge to encourage him to do tummy time.

Other than that, she said to continue doing what we're doing becasue Aaron is doing amazing! Oh, and he weighed in at 14lbs 10oz. At discharge from the hospital last week, he wighed in at 15lbs 12oz!

ALTE

Apparent Life Threatening Event. That's what got Aaron admitted to the hospital for 3 days and 3 nights.

Last Saturday night (January 23rd), we were hanging out at my parents house. It was a very good night. Aaron was eating solids so well and went to bed early. We had a good dinner with Tetta, Gidu, my aunt and uncle, and twin cousins. It was a full house. Aaron woke up asking for more food so we figured it was a good time to head home, which we did. At home, he took a few more ounces of formula and laid down. Then, Aaron started a cry that we've heard on numerous occasions before. It was his "I ate too much and my tummy hurts" cry. Usually, we try to burp him and he spits up a whole bunch of food and immediately goes back to sleep peacefully. This time, that didn't happen. Aaron just kept crying and crying. Nothing was coming out even though it seemed like he really really wanted to get something out. He was crying so much that his skin started to change color. It was a this point that we called 911. I was freaking out while Clayton was on the phone. I did the finger-sweep to see if there was something blocking his airway. There wasn't. I tried to suction out his mouth, I got nothing. Aaron's lips started to turn blue and I cried. There seemed like there was nothing I could do get him to stop and I thought we would lose him. After all we went through, this was it.

All that fear and desperation put me in a dark place and thankfully I came to my senses. I got on my knees on the bathroom floor (where we usually go when Aaron wants to spit up since it's a lot and getting it in the tub saves on clean up), and held Aaron out in my arms and prayed. I said, "God, Aaron is yours. Please heal him." I repeated this a few times and then just hugged Aaron. By the time I got to my feet and walked out into the hallway, Aaron was fine. Sucking on his fingers, like he usually does. Looking at me like I was crazy. I looked at him and couldn't help but laugh and ask him if he was serious. Mind you, all this happened in a matter of minutes, before EMS even got there. So, Clayton, Aaron and I went downstairs to wait in the living room for the EMS. They came and checked Aaron out. I promise, I think they thought we made the whole thing up because they couldn't stop commenting on how good he looked. His skin, his temperature, his heart rate. Everything. Except the wheezing they heard in his lungs. With his history, their first thought was RSV. Oh boy!

So, we were off to the hospital. Luckily, Aaron was very stable and the ride was much less stressful than it could have been. It was about 10:30 pm. We got to DHMC and all kinds of tests were run to figure out why the ALTE occurred. Blood was drawn, a catheter and an IV were placed. A chest xray was taken. We waited around for quite some time before they decided to admit us while they figured things out.

We got up to the pediatric floor at about 2 am. Aaron was miserable. His eyes were red and he was just so cranky. He eventually fell asleep at 3 am. Clayton went home to take care of Hurley and get some sleep, since there really isn't room for 2 parents to sleep. Aaron did well overnight, but he needed some oxygen to keep his sats up.

Sunday came around and most of the test results were already coming up negative (thank you, Jesus!!!). They still couldn't rule out RSV or other infection because the chest xray wasn't that good. Although, doctor after doctor commented on how much clearer his lungs were sounding. Eventually, RSV was also ruled out. So, at this point, there was no "real" reason why the ALTE occurred. In efforts to get him home, we did explain that about 3 hours before the event, Aaron ate twice as much solids in one sitting as he usually does all day long. So when it came time for bed and he realized he ate too much, it was really difficult to get it all up. The wheezing in his lungs was summed up to him aspirating some spit up during the incident because everything sounded absolutely clear now. But since Aaron needed the O2 overnight, they decided to keep us another night for observation.

Then it was Monday. To further rule out any possible cause, a cardiologist and ENT came along. The EKG wasn't so bad but Aaron was just so miserable during the ENT exam. They sent a scope down his nose to check if there was any narrowing in this throat that made it difficult for him to breathe. The exam was so terrible I had to leave the room. I've been able to see Aaron through lots of difficult exams but this I could not handle. The doctor found nothing. At this point it was clear that the ALTE occurred because of reflux and, although Aaron needed O2 while sleeping, I insisted I wanted him home while the O2 was delivered to our house. He just wasn't comfortable in the hospital and neither were we. Nothing was found that could explain the ALTE and Aaron had gotten back to normal within minutes of the onset of the event. They asked us to wait just one more night and the O2 would be delivered to the hospital instead of our house so we could "practice" using it. After 4 months in the NICU, we needed no practice using an O2 machine and pulse ox. Clayton actually spent that night with Aaron because I had a job interview on Tuesday. It was the first time I left the hospital since getting there Saturday night. After sleeping in a sleeper chair for 2 nights, our king bed was a very welcomed blessing.

Clayton took the day off from work on Tuesday in case Aaron was discharged while I was interviewing. This wasn't really necessary since we didn't leave the hospital until 4 pm! We were able to leave with the oxygen and had a small tutorial on the equipment. It was funny because Clayton and I knew more about those machines than the tech who delivered them. But, we humored the hospital staff and listened.

We were home by dinner time and we set Aaron's room up. Six months after coming home from the hospital with no machines or monitors, we now have an O2 machine and pulse ox. Needless to say, Aaron hates the cannula being taped to his face every time he sleeps, but he needs it so we do it. We don't know how long he'll need it or why he even needs it all of a sudden. We're praying for a quick resolution.

So, other than the ALTE on Saturday night and needing O2 to sleep, Aaron is back to his amazing little self. My two lessons from all of this: 1) Thank God for prayers, and 2) God always manages to save Aaron in bathrooms (ok, maybe not as funny as it sounds in my head, but, definitely true!).

Sorry I've been a bad blooger. So much has happened since I last blogged and I promise to write all about it. I will write a series of enteries devoted to each happening so it's not one giant entry with a months worth of updates all over the place. Stay tuned! And always pray!

Giggles

Thought you might like this. It's a few seconds of Aaron laughing, which is the cutest thing ever, before taking a serious turn and trying to eat his bib!