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.

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.

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.