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.

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.

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.

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.

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.

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.

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.