Saturday, April 18, 2009

I know, I know. It's been a while. Kim put up these pics long ago and I haven't carved out the time to populate the space in between with narrative. In the last post I mentioned that we made a little move down south to the Tampa/ St Pete area. Well, that didn't last long. Long story short, I took a position in the Albany area and we decided to re-re-locate to our home in Alplaus, NY. So, we're back. For the moment, Kim is staying home with Mikaila. Mikaila came back from Florida (via plane, in the midst of the swine flu epidemic by the way) with what I would characterize as moderate separation to sever separation anxiety. Kim can't leave the room for 2 consecutive minutes without inducing a panic. Her anxiety manifests itself in many forms, most of which are not particularly convenient for us. However, they all pale in comparison to our current sleeping arrangements. You see, Mikaila simply will not sleep in her crib. Frankly, she won't be left alone for any significant period of time. So, she sleeps with us in our bed. Kim finds it cute. I, on the other hand......... well, I'm not so pleased. We hope to develop and execute a transition that gets her back into her crib shortly.





Looking at the pictures though it seems I should provide a bit of detail on her time in Florida. We drove down to Florida, Mikaila, Grandma Ducky and a trailer in tow to begin a new life in Florida. The plan was for Kim to begin work, Davia to watch Mikaila and for me to head back to Albany to get the house ready to be put on the market. I did a bit of networking down there to develop opportunities but just as I was gaining some traction down there, I received a job offer in the Albany region that I had to take. So again, long story short we decided to head back north leaving the fun and sun of Florida behind. However, much fun was had in the intervening months as evidenced by some of the photos herein. Mikaila went to the beach, had her first boat ride, swam in the pool, went out to eat often and for the most part, got a chance to interact with a world that she had only observed through a window. The kid gloves came off in Florida: we took her out to eat a dozen or more times, took her shopping, to a bar etc. She has had some of those same experiences since her return but it all began in Florida. Many thanks to Kim's brother Mikie and Denyve for there overly generous hospitality. They opened up their lovely new home to us and we certainly could not have done it without them.






















When we left the Albany area, Mikaila was struggling to keep herself stable while sitting up. While in Florida, about two weeks after our arrival, she began to crawl thereby dramatically changing the dynamic for those in charge of her caregiving. A mobile Mikaila is much more difficult to deal with. One must account for her whereabouts at all time.


On Fathers Day, she began to walk and our lives have been forever changed. We will post photos and videos


I'm now finishing this post the morning of September 16, many months after I began. I will follow up with another very soon. Enjoy the photos, videos and pyrotechnics.
















Mikaila Kissing Herself in the Mirror





































Mikaila Just Starting to Crawl



































Mikaila Kissing Tigger













































Mikaila Horsey Ride

































Mikaila Walking

































Mikaila Crawling Through Her Tunnel

Tuesday, March 24, 2009

Happy Birthday Mikaila!











Wow! It's hard to believe it's been a year since we welcomed little Mikaila into this world some 12 weeks earlier than anticipated. If you will recall, although she arrived on March 24, her original due date was June 18. We received so many inquires as to Mikaila's status in the early moments that we decided to start this blog to serve as a mass communication mechanism. I believe this blog has served it's purpose faithfully with the only limiting factors being the talent, time and inclination of the writer.
We had a very small family get together on Saturday to celebrate the first anniversary of Mikaila's arrival. She received a ton of fun presents, many of which were related to the sun, sand and fun of the beach. You see, we are making a little (probably temporary) move to the Tampa/St. Pete area, in the Gulf Coast of Florida. Sorry to those that are hearing this now but we have been working through several opportunities, many of which are still in play so we wanted to keep our options open until we were forced to make a decision. Back on point....... She scored a ton of gear, from bathing suits to sun dresses, sandals and sun hats. She also received a blow up pool, floaties, shovels and pails..... Let's just say she did well. We'll add pictures before we hit the road for Florida tomorrow night. For the time being, we will be staying with her brother in St. Pete.
Today, we took Mikaila to see her doctor for her one year/9 months adjusted visit. As always, he was very pleased with her progress and noted that her growth curve, although uniquely hers, mirrors the slope of the normal curves. She posted a weight of 14 lbs 12 ounces and her length is well within the normal range. Two shots were administered to her leg. She was a real trooper but she has been very cranky this evening, likely a consequence of the shots. The vigor I referred to in the opening moments of the very first post has never waned.
Mikaila had her 9 month developmental assessment about week ago. In virtually every regard, Mikaila meets or exceeds her developmental milestones. She does lag a bit in one area; gross motor skills, manifested most obviously in Mikaila's inability to crawl. It seems that Mikaila is content to dive and roll for objects she desires, with little concern for how long it takes. She never feels compelled to expedite her quest by attempting to crawl. We are working on it and will work even harder now that we have a cool and cushy play mat, complements of cousins Chrissy, Jay and Elise.
I apologize for the brevity of this post but we are leaving tomorrow and I have yet to pack any clothes. I'll try to do a follow up post in the next week. Cheers.

Tuesday, February 24, 2009

Tribute





It's been an emotional week for us.  Kim's grandfather David Jutton, affectionately known as Grampie, passed away last Tuesday morning.  He truly was the patriarch of the family and his absence in the short week since his passing, is already palpable.  Kim's mother Davia officiated a wonderful yet tear-filled service on Sunday and the equally emotional burial on Monday.  Gramp faithfully served our country during WWII and as such was honored with a soldiers burial.  The Honor Guard presented Davia and her sister Sandy with folded flags as Taps played in the background:  A ceremony befitting an exemplary member of the greatest generation .

During the service, I had a moment of clarity; something told me that I had to update the blog with new content.  I can't quite put my finger on it.  Perhaps it was the fifteen or so followers of the blog not so subtly hinting that they still check the site regularly to find nary an update.  No, that's not it.  I wonder what it was.  Anyway, I shall attempt to remedy that today.  This post will be a tribute to Gramp.  Sadly, we don't have many pictures of Grampie and Mikaila but we will post what we do have intermingled with the content that follows.  We will also post several more recent pictures of Mikaila as there isn't a ton of news to report.


Mikaila is up to 14 lbs.  Although she is still well below the curve for even a baby of 8 months (her adjusted age, she has actually been with us for 11 months) her curve seems to be following the slope of the typical curves.  We tend to not worry to much anymore about how much she is taking in and now have redirected our efforts toward increasing the percentage of her intake that comes from solids.

A few weeks ago, we moved Mikaila from the bassinet to her crib.  That move coincided with our move back to our bedrooms.  I may have mentioned that I did some work on our floors over the holidays and as such we had to move our bed down to the living room area.  We finally moved our bed back to our bedroom which necessitated moving Mikaila upstairs.  She was roughly 11 months old at that point so it was long overdue.  For the last few months Mikaila has kept us up at night.  Kim and I take turns getting up to comfort her back to sleep.  She seemed to have turned the corner a few weeks ago only to regress in the last several days.  We've heard that sleep issues may be a recurring theme.  I hope they're wrong.


Babbling

From the get go, Mikaila has been both communicative and expressive.  Through a series of screams, grunts, facial expressions and arm movements, Mikaila has always been very effective at getting her point across.  Mikaila has taken her communication skills to a new level in the recent months as she has proven to be quite the babbler.... just like her mommy.  








Pardon me folks.  I had to tend to a nose bleed administered by my loving wife.  Back on point, babbling is a precursor to speaking.  Mikaila has said both Dada and Mama although we aren't sure she really knows what they mean; at least I'm not sure.  She seems to be on the brink of speaking.  At times, she attempts to mimic the words we speak by manipulating her lips as we do.  We'll let you know when she actually strings words to together and knows of what she speaks.

Crawling

She is in a similar spot as it relates to crawling.  Although she really doesn't crawl yet she is very close.  She can hold herself in position without a problem and her hips now allow her to keep her legs from splaying.  At this point she tends to rock herself forward.  She does struggle, however, with shifting her weight.  The Physical Therapist worked with us on how best to help Mikaila and we will continue working with her.  Frankly, I think Mikaila would rather walk than crawl.

Teething Still




It doesn't seem possible and I wouldn't believe it if I weren't living it but Mikaila has yet to have a tooth pop through.  Most avid followers of this blog know that Mikaila has been teething for months.  By months, I don't mean two months.  I'm talking many months.  Her gums are white so we know they are coming but when they actually break through is anyone's guess.

Quick Study

In recent months she has also taken to studying everything she touches or sees.  I think she is less interested in what things do than how they do it.  That explains her preference to mimic our facial expressions when we talk rather than creating the sounds that come out of our mouths. These tendencies show in her interaction with toys.  When given a block for instance, she tend to study each side.  The same can be said for Mikaila's hands.  She finds her hands fascinating and stares at them while flexing her fingers and shifting her wrists.  Perhaps she'll be an engineer or maybe an inventor?  I'm just happy that she's intellectually curious.

Birthday

We will be celebrating the one year anniversary of Mikaila's birth on the 24th.  It's hard to believe we've been at this for a year.  She really has had a remarkable course and we feel blessed every day by her health and progress.  We don't have any elaborate plans for her birthday- we have lived like hermits for the last year fending off invaders with germs- but we will probably do something.  We will be sure to post pictures.

This post has been sitting for a while unposted.  Kim and I have had our hands full so we haven't been able to cobble together the pictures of Grampie and Mikaila.  However, I want to get this post up to appease the followers.  We will add pics shortly.  Enjoy.




Thursday, January 1, 2009

Happy New Year



Well, pull up a chair.... we're gonna be a while.  Kim has given me a blog-related honey-do list, the likes of which... I'm gonna stop with the hyperbole before I get in trouble.  So, let's just say Happy New Year!

To catch up, Mikaila had her Developmental Pediatric evaluation at a corrected age of 16 weeks-it must have been in October.  Her Cognitive/Adaptive skills were solidly at 18 weeks. Her Gross Motor Skills were solidly at 18 weeks and her Fine Motor Skills were at 20 weeks.  At that point, her language skills were comparable to that of a 24 week old and her Personal-Social skills measured between the 18 and 20 week level.  The doctor's only concern was understandably Mikaila's issues related to her feeds.  She recommended increasing the frequency of the visits by the feeding specialist.  We will do a follow up visit with the developmental folks 6 months from the October appointment.

You're going to notice a bunch of pictures that do a much better job of capturing Mikaila's beauty.  No, I haven't been practicing my photography.  Rather, Kim's sister Kelly brought in a photographer as a Christmas present and she did a great job.  We took a ton of shots in several outfits- my Study resembled backstage at a variety show- but the results were clearly amazing.





Halloween was interesting.  She had no less than 3 costumes to wear- Exhibit A, the Pumpkin thing below.

We slowly began introducing solids into Mikaila's diet in the fall and she seems to be making slow but steady progress.  You may recall that we began with a very exciting blend of rice cereal and breast milk.  That just sounds scrumptious, doesn't it.  Say it out loud, rice cereal.  Yum.  We moved from there to bananas and then avocado.  She really enjoyed the bananas and seemed to be liking the avocado until she developed an allergic reaction.  So, unfortunately, avocado is out. At this point, although her diet is still primarily comprised of breast milk, she does take in solids 2-4 times each day.  Likes: Butternut Squash, sweet potatoes, bananas, applesauce, long walks and sunsets.  Dislikes: Chicken, peas, mean people and war.  She has also had carrots, green beans and prunes.





I mentioned Mikaila's feeding issues.  She certainly has progressed a bit but her issues persist.  She has been on Zantac for most of her life to counteract the effects of acid reflux.  A few months ago we began exploring other options with her pediatrician in an attempt to advance her progress.  Dr. Miller prescribed Prevacid.  Initially Mikaila actually regressed so Dr. Miller upped her dosage. In parallel, Mikaila continued to see the feeding specialist (Gina) assigned by Schenectady County Early Intervention.  Gina believes Mikaila's feeding issues are related to some underlying medical condition causing discomfort and recommended we see a specialist.  We were referred to Pediatric GI Specialist, Dr. Qualia, and paid him a visit in November.  He was happy with Mikaila's weight gain and didn't think invasive tests were warranted at this point.  Dr. Qualia did express some concern with Mikaila's recently upped dosage of Prevacid and mentioned evidence in studies of bone cancer with extended over usage.  Fortunately, Mikaila was only on the high dosage for a week so we really aren't concerned.  After the visit, we severely reduced her Prevacid intake and her symptoms returned so we ended up going back to Zantac. Got that all?  We'll be following up with Dr. Qualia again later this month.




Baby Tricks

Mikaila has developed physically quite a bit since my last post.  She has been rolling from front to back for a while and recently began rolling back to front.  She can sit up unsupported for stretches while playing with a toy but falls over if she looks up.  She isn't quite mobile as of yet but she is making an effort to crawl.  We'll continue to work on that but I think she may be more comfortable on her feet than on her hands and knees; frankly, I think she is frustrated that she can't walk now.  Just this week I was holding Mikaila on the floor on her activity mat.  She was sitting but decided to use the arms of the mat to pull herself up to a standing position.  She held the position for a while unassisted.  Occasionally, Mikaila will reach for a hand that is held up to her simulating a high five.  Kim and Kelly insist she is completing a high five, others are skeptical. 





Misc

Mikaila's Physical Therapy occurs monthly. Her PT, Karen, has been very pleased with her progress  and indicated on several occasions that Mikaila is developing normally on her own so there is no need to focus on development of any particular muscle group.  She has been teething for months now but to this point, nothing has popped through.  Her gums are very bumpy but then again, they have been bumpy for months.  Perhaps she'll skip the baby teeth and go straight to adult teeth?  I'm on board; it will save us a few bucks in quarters under the pillow.

The visiting nurse still comes to the house monthly but the nurse has changed.  Her original nurse was transferred to another position. Since November, Mikaila has been given an RSV shot to reduce the chances of contracting respiratory syncytial virus, a debilitating respiratory virus that is particularly troubling for premature babies.  The visiting nurse administers Synagis at her visits and will do so through March.  Mikaila doesn't care for these shots.  Neither does her mother.

In the last few weeks, Mikaila has begun waking up often at night.  A few times each night, we'll hear Mikaila screaming and have to go pick her up and walk her for a while.  I should add that we have moved our bed and Mikaila's bassinet downstairs to the living room as we complete refinishing about 700 sqft of our hardwood floors.  So, when she yells, we hear it.  Actually, when she moves we hear it.  Last night, I had to walk her from 11:30pm to midnight and 1:30-3:00 am.  Kim got up with her at 5:30 and stayed up.  The night before, I was up with her from 3:30 am on.  Let's hope these events are anomalies and do not constitute a trend.

Mikaila's eyes are currently green although that may not last long.  Kim has big blue eyes and I have brown eyes so where they end up is anyone's guess.  Kim seems to think the shape of her eyes come from me.  Perhaps so but I think the size clearly comes from Kim.




Christmas

Mikaila celebrated her 9 month birthday on Christmas Eve by opening presents with my mother and step-father.  She actively participated in the opening of presents particularly excelling and reveling in the tearing of wrapping paper.  It seems she enjoyed crinkling the tissue paper in the gift bags far more than the presents themselves.  Mikaila scored a pretty impressive haul between Christmas Eve and Christmas Day with Kim's family.  Among the presents under the tree; her first pony (pictured), a dozen or so outfits, swaddles, blankets, toys and stuffed animals.







Mikaila had her 9 Month Pediatrician visit this week.  Dr. Miller was pleased with her progress and indicated that her weight gain was within the acceptable range.  She currently stands at 12 lbs 14 ounces.  Although she is still significantly below the curve, the slope of her curve very much mimics that of the ones above her.  Translation, her weight is still very low but her growth is very much in line with that of a typical infant.  Kim and I were quite amazed with where Mikaila now stands with some of the other metrics.  It seems Mikaila's growth curve for both her height and head circumference has intersected with the traditional curves for 9-month olds.  She caught up.  I guess she's just lean.  You should see her abs!

That's about it for now.  I'll try to do a better job of keeping up with the blog.  Translation, Kim vows to step up the badgering until I comply.

I hope everyone had a enjoyable and safe New Year's Eve and that 2009 brings you all of the successes you covet.




Wednesday, September 24, 2008




It has been a while but I'll do a quick update for those of you that are still with us..... Radio silence................................

Mikaila continues to give us troubles with her feeds. Each day is a struggle and unlike the previous days. We have yet to see a pattern emerge. One day, she will shun breast feeding. The next, she will fight the bottle yet embrace the breast. Smart girl. We do have a feeding specialist through early intervention that will visit every 4 weeks. She is well intentioned but I'm not sure we have learned anything substantive. We'll keep at it. Her growth has been ok. She gained 5 1/2 ounces in the past week. At this point, anything more than half an ounce per day is acceptable so 5 1/2 ounces in 7 days is pretty good.

We had our second eye exam today for little miss Mikaila. They were looking for development with the blood vessles in the eye. As was the case during her original visit her eyes were perfect. We didn't get any indication of the strength of her vision.

Last week, the folks at Anthem finally came to take away the oxygen canisters and monitor. About freakin time! She had been off of oxygen for months yet we couldn't rid our lives of the monitor. We hope the lack of monitor will eventually translate into more sleep.

We added a few pics and a short video. You will see or should I say hear on the clip that Mikaila is very vocal. Enjoy.


Sunday, September 14, 2008

Update

The feeding specialist paid Mikaila a visit mid-week to assess her feeding issues. We have been able to get Mikaila's feeds back into the acceptable range but she still fights us more often than not. My hope was that the specialist (through early intervention, Schenectady County) would arm us with tools and techniques to re-train Mikaila to welcome and enjoy her bottle. The specialist observed Mikaila take a bottle and of course she took it without issue. She did push the nipple out at one point mid-feed but she took it back in after a burp without too much of a fight. This is not typical behavior. We generally have to coax the nipple into her mouth and constantly reassure her along the way. If Kim administers the feed, I have to be at the ready holding Mikaila's hands to avoid her knocking the bottle out of her mouth. I also generally move my mouth as if I were taking a bottle as Mikaila often will mimic what she sees. Back to the specialist. After observing her feed the specialist came to the conclusion that Mikaila's issues are likely not medical. The far more likely cause is an aversion resulting from negative feeding experiences; her formula and milk allergy that led to very uncomfortable reflux and substantial spit ups.

We really didn't get any techniques from the specialist. She did recommend that we change up our patterns. Mikaila often will get upset and sometimes hysterical when we put her in position to eat but before we even introduce the bottle. The specialist mentioned that we might change her position. Also, we have noticed that when Mikaila gets very upset often the only thing that will calm her down is swaddling her. When she gets hysterical she will not eat so we need to be more proactive to avoid her reaching that state. She generally eats without issue when she eats moments after awaking from a nap. We have been using that to our advantage as well and she validated that thesis. The take away is that we have to keep her calm and only introduce the bottle when she is calm.

When Mikaila went to the doctor last, she weighed 9 lbs 9 ounces. Some five days later, she still weighed 9 lbs 9oz. However, her feeds following the doctors visit had been very difficult and at the same time we were trying to get her re-aclimated to breast feeding so her lack of weight gain is not surprising. Two days later she had gained 2 more ounces placing her at 9 lbs 11 ounces on 9/11. Her feeds have gotten better since then so we do expect her to begin gaining weight again. Getting back to her doctor's visit, the doctor wasn't concerned with her weight. The trend was still acceptable so we will continue our current course of pure breast milk. At this point, 1/2 ounce per day is more realistic

I think that is about it. We'll add a few pics in a bit.


Wednesday, September 3, 2008

Quick Update

We took Mikaila to see Dr. Miller today to get a check on her weight. She has been on breast milk sans formula for two weeks now. Although she posted only moderate gains (she is now 9 lbs 9 oz), the doctor was still pleased with her progress and assuaged our fears related to the reduction in calories. The latest research indicates that developmental vulnerability of very low birth weight babies is far greater pre-due date. Since Mikaila is 2 1/2 months past her due date, this is likely not a concern. Dr. Miller gave us the go ahead to continue her on pure breast milk.

If you will recall, we took her off of the formula for a number of reasons: She was struggling with her feeds often at once showing indications of hunger but not wanting to eat. She also was projectile vomiting several times each day. We eliminated the formula from the mix and eventually added it back. When we did, she showed classic signs of a milk allergy. Yada, Yada, Yada, she went back on pure breast milk and the spit ups virtually stopped.

We have a feeding specialist coming next week to assess Mikaila's problems taking the bottle. She comes next Wednesday. We'll post an update if she is helpful.

I should note that Mikaila decided that she would put a halt to her aversion to breast feeding today taking four feeds directly from the source. We hope this is not merely an anomaly but rather indicative of a trend in the right direction. She hadn't breast fed in over two weeks so this is very good news.

That's about it for now.

Saturday, August 23, 2008

It's been a while





Mikaila has had an interesting journey of late. Her feeding issues persist though they have improved considerably. She has seen the wife of our primary pediatrician (she claims to be a doctor as well although I see no evidence)and we have come away unsatisfied. Per her instructions, we put her on another formula- one that essentially predigested. They refer to it as being hypoallergenic. Well, Mikaila couldn't stand the taste (or smell for that matter) of the new formula. Frankly, we smelled it and it is none to pleasing. I don't blame her. She wouldn't take more than an ounce of that crap at a time. We discontinued use of that garbage within a few feeds. When we called the doctor, we were told to switch back to the original, milk-based formula. We were not in support of this idea but we decided to give it a try. At this point, Mikaila had been off of the milk-based formula for four days (we had a several days of straight breast milk mixed in there). When we reintroduced the milk-based formula, she showed signs of a red, blotchy rash on her cheeks and chin. Classic sign of an aversion to milk. It seems our milk allergy theory has some credence. We called the doctor yet again and they suggested we go back to the hypoallergenic formula.

Wow. Take a breath. I'm sure I missed something there but I'll keep going. In the eight days in between doctors appointments, Mikaila gained only 2 ounces. She had been gaining an ounce/day so 7 grams/day just doesn't cut it. Not only was she struggling with her feeds but she was spitting up a ton, further compounding her issues. The visiting nurse showed up on Thursday and we showed her Mikaila in action. Although she is taking her bottle quite a bit better than she had, she still is struggling and did so as the nurse looked on. As a collective, we made a decision. We decided to stick with breast milk for a few days to calm down her tummy. Although the calories are reduced with the absence of the extra calories, we were confident that she would at least keep her feeds down. Soon we will slowly reintroduce the disgusting, I mean hypoallergenic formula- maybe start with a fraction of the prescribed amount to acclimate her to the taste.

Kim's sister Kelly mentioned that Early Intervention, a program we benefit from, has a feeding specialist. After consulting the visiting nurse we decided to inquire as to availability. We spoke with Ellen, our Early Intervention coordinator, and scheduled an appointment for September 10.

Her recent diet of pure breast milk has really improved her feedings. Mikaila hasn't had a spitup in two days and has slowly improved her acceptance of the bottle. She still will fight the nipple but we well past the instances of 45-60 minute feeds. However, we recognise that she really needs the extra calories as she is now roughly 9 lbs and she will be 5 months old tomorrow.

We did the second overnight oxymetry on Tuesday night and we think it went much better. That is to say, the machine seemed to perform as it should, unlike its predicessor. We expect that the data will support a decision to get rid of that fricken monitor; the bane of our collective existence.

I think that's about it. I'll add a few pics later.

Saturday, August 16, 2008

A little better

We visited the doctor on Thursday to get a diagnosis of Mikaila's issue. Unfortunately, Dr. Miller was not on duty so we had to settle for his wife. Fortunatly for us, his wife is in fact a doctor. Or so we are told. After a semi-thorough evaluation, Dr. Elmer detected what she thought was some redness in her throat. Her diagnosis was Coxsackie Virus. We disagree. Among the symptoms of Coxsackie other than an irritated throat are fever,blisters on the extremeties and in the mouth. She has none of these. There is no antidote for Coxsackie; you simply have to let it run its course. She mentioned Tylenol to help with the uncomforable throat.

The theory we currently subscribe to is quite simple. We think her reflux manifests in frequent and often substantial spit ups/throw ups. Throwing up can lead to an uncomfortable throat. I remember from my college days. The stomach acids that assist in the digestion process can do a number on the throat. She has figured out that pain comes during and shortly after taking a bottle. Although less glamorous than Coxsackie, this diagnosis seems more plausable given the symptoms.

She has been slightly better today taking her bottle. After taking only 13 ounces on Thursday and 15 on Friday, she is on pace to fall within the acceptable range of 18-27 ounces today. We still have to fight her to get the nipple into her mouth but the battle typicaly lasts only 10-15 minutes or so. Still less than ideal but much better.

In support of our theory (admitedly proffered by both grandmothers) we have decided to try her on straight breast milk. One characteristic of many members of Kim's family is lactose intelerance. They don't care for lactose and they won't stand for it. The formula is milk based so she may be reacting poorly to the dairy in the formula additive. Although she is taking only 50-70 mls at a time she hasn't had what we consider to be reflux related spit ups today. Her two spitups were a direct result of her fussing with the nipple in her mouth and gagging. Before this episode, she was getting 80-100 mls every 2.5-3 hours (although we would let her sleep as long as she wanted overnight). Today, we have been feeding her whenever she will take it. She is getting less at each feed so occassionally, we feed her an hour after the last feed.

I failed to mention that she was weighed at the doctor's office. She weighed 8 lbs 15 ounces. She gained a scant 2 ounces in 8 days. Although upsetting, the number isn't surprising given her reduction in intake and frequent spit ups.

So, we are still somewhat confused and a bit concerned but encouraged that she is at least showing some progress.

We'll post an update when we have more to say.

Monday, August 11, 2008

Problems with the Bottle

We have run into a bit of an issue with Mikaila related to her feeds. For some reason, she shows no interest in her bottle while at the same time exhibiting gestures indicating that she is hungry. Quite the conundrum. She will show clear signs of hunger- mimicking nursing, nibbling on our clothing (or occasionally on my nose)- but when presented with a bottle, she pushes it away. She'll push the bottle away with her hands, turn her head or once the nipple is in, she push back with her tongue. Often times she will cause herself to gag and eventually spit up. Eventually, we are able to get her to take the bottle and she is without exception pissed at us when we stop her feed to burp her. Her feeds now take 30-45 minutes when they had always taken 15 minutes. We have no idea what is going on. She has never had a problem with taking a bottle. This occured somewhat out of nowhere.

I should add that she did have her 4 month shots a few days before the issues occurred. These shots can often lead to grumpiness and fever but these symptoms seem different. When I called the doctor and spoke with the nurse they concluded that she was either suffering the effects of a stomach bug or reeling from the shots. We don't buy it. She isn't feverish at all and her diapers have been consistently wet. So, I will be calling tomorrow and I will not be speaking with a nurse. If we learn anything, I will post it in the next few days.

Last week the physical therapist made a cameo. I was way off. There were no squat thrusts and nary a flab jiggling machine to be found. She instead focused on baby massage. Him was taught the various techniques that will aid in her muscle development. After she gets a rub down, Kim puts her in the hot tub for a soak and then a quick steam followed by a fruity umbrella drink to keep her hydrated. The massage should also help to desensitize her to touch. She no longer kicks if her feet are touched.

Someone had asked if Mikaila was beginning to take to her baths. She actually has. I'm not sure she loves bathing yet but it no longer causes her distress. She seems to have accepted baths as a part of her routine.

Mikaila has been making some very cute noises. She seems to be finding her voice. Kim took a few short video clips so enjoy. Beleive me when I say that they don't quite capture the real thing but for now will have to serve as a proxy for the real thing.

We are still doing the due diligence on her feeding problems. If you have any suggestions we are willing to entertain theories.

Last thing, other than her displeasure with her current bottle, she seems very content and exceedingly cute. Off the charts cute.


Monday, August 4, 2008

Long overdue update.


I know, I know. It's been a while. We may have lost our audience. Let's see if we can lure a few of you back. Mikaila has been doing very well. She has been off of oxygen for 4 weeks now (I think)and really hasn't had any respiratory issues. Frankly, I'm not sure where precisely the canula is so let's hope her good fortune continues. We spoke with Dr. Schroader about her overnight oxymetry. If you will recall, the first attempt didn't go very well. Understand that the issues were technological. Each time she moved, the sensor failed to register an accurate reading. Dr. Schroader insisted that we should redo the overnight test in 3 weeks. Add the almost 2 weeks to get results and we are looking at another month with the monitor.

Mikaila was weighed last Thursday and she registered 8 1/2 lbs. We haven't weighed her since but she is likely approaching 9 lbs. At this point, Mikaila is getting 80mls every three hours. We tend to give her extra in the evening; for example, we fed her at 5:45 this evening and she eagerly gobbled up 100 mls. At night, we tend to give her a bit less (from 50-70mls) and let her sleep 4-4 1/2 hours. She still tends to spit up from time to time but that didn't slow down her recent, although admittedly brief, growth spurt.

Although our energy levels are at close to all time lows (we still average about 4 hours each night) we have ramped up our home improvement efforts. There is a significant project in the offing, one that requires immediate attention given Mikaila's pending mobility. Some time in the next few months I will be soliciting the help of my step-father Bill, and will pull out the carpet in the family room/dining room/living room area, leveling the subfloor and laying hardwood flooring- 1000 square feet of it. That is some project but the carpet is simply unacceptable. Thirty years of filth looms deep in the dark recesses of that carpet. We can't have Mikaila crawling on that disaster of a carpet. It has to go.

The physical therapist will make an appearance tomorrow. She will put Mikaila on a strict regimen of calisthenics comprised mostly of squat thrusts and that flab jiggling machine from the 1940's. Actually I'm not sure what she will do but I guess I will find out.

I hope this little fix appeased your Mikaila jones. More later.

BTW - we tried to upload pictures but the site is apparently having technical difficulties. We'll try again tomorrow.

Tuesday, July 22, 2008

Overnight Oxymetry and Hearing Screen results

I guess we owe you a few updates. We did an overnight oxymetry on Saturday night. The machine employs a flawed technology. Each time she moved, wiggled or scooted, the machine registered a false reading. Unfortunately, Mikaila is a very wiggly sleeper so the data is a bit messy. If they are unable to affectively scrub the data, we may have to do it again. We kept the other monitor going simultaneously and of course she was satting in the high 90's the entire time. The reality is she has been off of oxygen for almost 2 weeks now. We just want the monitor to go away so that we might get a bit of sleep.

The other nugget of info you may be anxiously awaiting word on relates to Mikaila's hearing screen. If you will recall, Mikaila flagged her hearing screen at the NICU. She had a scheduled re-screening today at 3 back at Albany Med. Her left ear passed very quickly. The right ear was a bit more of a challenge. The monitor had gone through roughly 7500 iterations when the person admistering the test went to find the audiologist. Before she left she indicated that Mikaila was likely to fail the test with her right ear and that she wanted the audiologist present to explain the implications. However, while she was gone, Mikiala passed the test. It took over 10,000 iterations (she passed on her left with just 1000) but she passed. One more worry to cross off of the list.

Before we left we decided to pay a visit to our friends at the NICU. Nurse Amy had just left but we did get a chance say hello to Dr. Rios. He was very please with Mikaila's progress and had no doubt that she would continue on what he said was a remarkable course. Nurse Lanette, one of our favorite nurses, was there as was Katherine. They were excited to see little Mikaila and couldn't believe her size. We will have to make another appearance to allow Amy to get a peek at Mikaila.

That's about it. There is a scheduled outage in a few minutes so I will have to end this post.

Friday, July 18, 2008

No more Oxygen... I think.

Sorry again for yet another lapse in posts. I often find it difficult to find the time and energy to collect my thoughts and recount her recent activity. I will again vow to TRY to do a better job of updating this blog. I know that Mikaila has many fans that like to know what is going on with her day to day.

Mikaila has been off of oxygen for 9 days now. I’ll take a moment for you to internalize that information, disseminate to those within earshot, and engage in whatever celebration ritual endemic to your heritage. I’ve always been partial to the Jig but the Icky Shuffle is a close second. Ok, we’re back. Dr. Schroeder, her pulmonologist, ordered an overnight oxymetry. If all goes well, and we fully expect it will, her oxygen tanks and monitor will be a thing of the past. The folks that provide the equipment should arrive at the house in the next hour or so to deliver the special oxymeter.

The early intervention people paid a visit this morning to plan a course of action for the next 6 months. They were astounded by some of Mikaila’s abilities and accomplishments. For instance, Mikaila, when placed on her activity mat, will try to crawl toward, and reach for some of the objects attached to the mat. The reaching apparently is a 6 month skill. For the record, Mikaila’s corrected age is one month as her due date was exactly one month ago. They were very please with her overall progress and indicated that there really wasn’t anything that needed monitoring. However, given her birth and medical history, all aspects of her development should be systematically reviewed. We will have a monthly visit from a physical therapist and have access to specialists should any issues arise. They won’t.

About 20 minutes after the early intervention folks left the house, Mikaila executed another maneuver that is truly remarkable. Kim had placed Mikaila in her pack and play on her stomach. Moments later, Kim heard Mikaila fussing and looked over only to see Mikaila now lying on her back. Again, she is not supposed to be able to do this.

That’s about all I have for now. Kim uploaded a few pictures for your viewing pleasure.


Monday, July 14, 2008

Mikaila has been off of oxygen for five days now. We haven't placed the canula in her nose for even a moment since mid day on Wednesday. I spoke with the lung doctor and he was quite pleased. He suggested we do an overnight oxymetry and ordered the device. We should have it either tomorrow or Wednesday. If successful, the monitor and oxygen tank should be out of the house in short order.

Thursday, July 10, 2008

Quick Update

Mikaila is progressing well. Her canula remains off for most of the day- we keep the oxygen tank on at its lowest setting and have the canula at the ready to avoid severe desats. At this point, Mikaila really only desats during a diaper change. However, even in those instances, she recovers very quickly. I have a call in to the lung specialist to see when we can get rid of the oximeter, canula and tank.

Mikaila has had a number of split-ups of late but her growth remains fairly consistent so we are chalking it up to what we know to be an immutable fact: sometimes, babies spit up.

That’s all I have for now. I will try to get back on the horse and post more frequently.

Friday, July 4, 2008

7 lbs 1 ounce

We weighed Mikaila prior to her 8pm feed and she registered 7 lbs 1 ounce. Her pace slowed in the last 10 days or so creating a close contest. Congratulations to Diane. When I have the bottle in hand, I can either send it or bring it with me on my next trip to Rochester. I tend to come to town at least once a month. Enjoy.

Happy 4th of July!

Happy 4th of July everyone! Mikaila may get a chance to see her very first Alplaus 4th of July Parade as it proceeds at a snails pace past our house; the route is not at all surprising given Alplaus’ designation as the smallest population in a zip code within the continental US. It is hard to get around Alplaus without passing our house at some point.

Today we celebrate our declaration of independence from the Kingdom of Great Britain. However, from this point forward, for the folks that frequent this blog, the 4th of July will hold another, perhaps less important significance. This evening, we will weigh Mikaila to conclude our little contest. We haven’t weighed her in a number of days so at this point, at least as far as we know, the winning number is still up in the air. We will weigh her in the buff after a diaper change and before her meal at 8pm.

I’ll do a quick update on Mikaila’s oxygen requirements. At this point, we can keep the oxygen off when she is sleeping comfortably. To be specific, if she is fairly comfortable following a feed, we can turn the oxygen off until she needs to be changed prior to her next feed. She always desats during changing; even when the oxygen is on. She doesn’t care for it. Frankly, it isn’t my favorite pastime either. She has gotten to the point where we can feed her without the need for supplemental oxygen fairly frequently. We are close. I can’t imagine her needing the oxygen beyond next week but I should reiterate that progress in this regard is far from linear.

I broke out the camcorder this morning that we bought for our wedding 2 ½ years ago. We bought this device in the place of hiring a videographer thinking we would use it later in life. To this point, it has been collecting dust in the hutch. The short videos we have posted on the blog have come from our camera. Our camcorder was fairly bleeding edge when we bought it; I believe it was the first camcorder to feature a hard drive as its storage format. I took a short clip this morning of Mikaila sleeping on my mother but before I post it, I will have to figure out how to convert it into a usable format. It records to a .pgi file- a format I have never come across.

More later. Enjoy your day.

Monday, June 30, 2008

Quick Update

The early intervention team made a cameo this morning to get a baseline for Mikaila's development. Given her low birth weight, she automatically qualifies for this service through Schenectady County. Not surprisingly, Mikaila scored remarkably well in her evaluation. Although Mikaila is more than 3 months old, developmentally she is evaluated using 6/18, her due date, as her birth date. Again, no one that frequents this blog would be surprised to hear that Mikaila fared extraordinarily well for a baby of 12 days old. She has always been very advanced. However, we were very happy to learn that she compared favorably with the average 3-month old as well. They will continue to monitor her progress monthly in part to assuage our fears but mostly to catch any potential issues early.

My mom is now in town helping out. As you would suspect, she was in utter shock when she saw Mikaila again after 6 weeks or so. Mikaila has probably doubled her weight since then. She was in agreement that Mikaila's true cuteness can not be captured on film. We are giving her the crash course on Mikaila care. She will be here helping out for the remainder of the week so hopefully, Kim and I can get a little sleep. We are definitely on fumes.

Saturday, June 28, 2008

Sorry for the delay

I have taken a bit of heat of late for my failure to post an update since Monday. Well, let's remedy that, shall we. Mikaila's oxygen requirements are fading by the day. Last night, when I returned from my long day in Pennsylvania, while holding Mikaila I took her off of oxygen for more than 90 minutes. She was in fact still satting in the mid-90's when I had to turn it on for her diaper change and bottle. She should be off of the oxygen completely in short order; perhaps in the next week or so.

We weighed Mikaila this evening; she posted a modest gain from Monday tipping the scales at roughly 6 lbs 10 ounces. Her weight gain is anything but predictible. She continues to be a voracious eater so I really have no explanation for her modest gains in the past few days.

Mikaila is on a different monitor now; one that tracks her oxygen saturation and heart rate through a probe that we attach to her foot. The chest probes are a thing of the past. Two wires down one (and one tube) to go. We have had problems with the new monitor as it often fails to pick up a signal. Mikaila will be satting in the high 90's and all of a sudden, the monitor will give off its brutally annoying sound. Fortunately, or unfortunately for us affected by the sound, it typically is indicative of nothing related to Mikaila. It simply doesn't work propperly. We get preciously little sleep as it is. We certainly don't need electronic monitors exascerbating our sleep deprivation. We're doing quite alright with that ourselves. The very strange man from the respiratory company stopped by today with a replacement cord. Let's hope the cord was the culprit.

That's about it for tonight. I really didn't sleep last night other than quick snoozes in between the monitor alarms so I might go up stairs for a quick nap. Kim will hopefully post a few pics later this evening.







Monday, June 23, 2008

I'm up so why not post an update

Well, it is 11:45pm and I have a ways to go before I am relieved of duty so I figured I would post an update on young Mikaila's progress. We had a routine visit today with her pediatrician, Dr. Miller. We are very fond of Dr. Miller. He has a very pleasant way about him and he comes highly recommended from friends of friends and the team at the NICU. Dr. Miller was quite pleased with Mikaila's development and did his best to assuage all of our recent, somewhat ill-advised fears; are her legs a bit bowlegged, stuff like that. She was weighed at her visit today in the buff after a timely and significant bowel movement. Mikaila tipped the scales at a robust 6 lbs 6 ounces. Keep in mind, this is an unofficial weight for our purposes but significant none the less as she has gained 18 1/2 ounces in the last 14 days.

Mikaila's gifts continue to pour in; just today, she received a very cool motion glider from my aunt Cheryl. She seems to really enjoy it. Last week we received a personalized book from some friends. Yes, Mikaila's name is actually integrated into the book. How cool. Frankly, I shouldn't name any of the gifts as we have survived by the good graces of the friends and family that had the kind of foresight we clearly lacked. We have purchased very little at this point. Other than her crib and an air purifier, I think all of the items we use to care for Mikaila have been gifts. Thanks to all.

I will name one other very cool gift. The Boyle clan led by Grandpa Mike made it their life's mission (at least for the day) to source and purchase the ultimate jogging stroller. Perhaps they are trying to tell me something? Well, they found it. A Jeep jogger with all of the amenities. I mean, all of the amenities. This thing has it all- 18 inch tires, a roll cage and a built in mp3 interface with integrated speakers. No, I'm not joking. This thing is bad ass. Pardon the profanity. Call it a shout out to the recently late great George Carlin. We have had to make modifications to accommodate Mikaila's stature (or lack there of) but it really works quite well. When I say modifications, I'm talking breaking out the sewing kit to temporarily shorten a strap, a blanket to sit on to raise her to the appropriate height etc. I can't wait to take her out on the bike trail later this summer. I can tell you, I need the exercise.

I'll leave it at that for now. Good night all.