Monday, March 30, 2015

THE WOES OF VUR

There's nothing worse than when your child is ill or injured (apart from the more morbid scenario that I cannot bring myself to type). It's heart wrenching to see your child in pain and easier to feel pain yourself.

We knew from the 36th week of gestation that our little Luca had hydronephrosis and from his 3d week of life that he had VUR. For the first two months we had him on preventative antibiotics but as he had stomach upset and a persistent yeast infection and we were giving it back and forth to each other from nursing and as we were afraid of the longterm consequences of daily antibiotic use, we decided to stop giving him antibiotics when he was two and a half months old. We had hoped that by diligently cleaning him, we could avoid an infection, but this weekend, our little ray of sunshine fell ill and it was confirmed to be a urinary tract infection- which with his high grade reflux (between stages IV and V) we know has reached his kidneys.

When you know your child has a condition - such as Luca's VUR - you base everything around the condition. We use cotton diapers so that we know when he has peed and more importantly, pooped, so that he is changed as quickly as possible. Our child has never spent more than 2 minutes in poop and that is probably quite an exaggeration as thankfully he has never pooped in his sleep and we are ever ready to bathe and change. Our policy used to be that we would bathe him every time he pooped, then we decreased our war policy to only bathe when poop reached his penis and if not, to simply diligently wipe. I now worry that the decrease in bathing procedure may have led to his infection so we are going back to bathing each time there is any poop. I wish there was a protective shield that my son could wear so that when he pooped, none of it would touch his penis, but of course no such poop shield exists. What material would it have to be so that pee could seep out but no bacteria from faecal matter would enter and that it would be comfortable and breathable and not cause skin irritations? I don't know, but I am going to try an added cotton layer on the front from now on. The bastion diaper - tying a cotton diaper the usual way and then placing an extra layer of cotton at the front. I do not believe of course that cotton is impervious to bacterial contact but I do believe an extra protective layer may help. Whether I will be able to dress him like that without him complaining is another matter....

Any time our kid gets sick or looks like he is getting sick, we are immediately concerned that it may be a UTI. The poor kid. We are always sticking the thermometer up his but and inserting the catheter in his penis. Two weeks ago Luca got sick for the first time. It turned out to be an ear infection but due to his VUR, we had to rule out a UTI. So when he had a high fever, we had to test his pee. Babies don't pee into a cup of course so we had to play the waiting game with the baggie inside the diaper. Unfortunately my son peed right before they applied the bag and as he was ill and had no appetite, he refused both the breast and the bottle. After five hours of holding out and still no pee, with the possibility of a kidney infection worsening, I caved in and allowed a catheter. I cried when they couldn't even a get a drop - the kid was dry. They gave him an injection that would attack both an ear infection (as some puss had been observed and this was more likely than not the guilty party) and a kidney infection and we played the same waiting game the following day. This time I refused a catheter and decided to wait until the morning as he already had antibiotics working for him from the infection. To our delight, the fever went and he was all better. He was poked & prodded for nothing.

Yesterday morning, however, he had another high fever and of course we immediately had to assume it was a UTI. This time we bagged him at home, applying alcohol before we did so and hoped that he would pee and we would obtain a negative result so that we could go home. Unfortunately, we received a positive result and had to catheterize him. Baggies have a very high false positive rate as it is very difficult to sterilize and avoid any bacterial entry with them, however much we wash the baby and our hands. While a positive baggie cannot be trusted, a negative baggie can. Unfortunately for us, it was positive. Our poor son is just 5 months old and we've had to insert a catheter in him 4 times. This time the catheter at least got some urine but unfortunately it was positive. We gave him the injection right away and today he is much better and has no fever.

Now we have to decide whether to put him back on daily preventative antibiotics. The good news is that his liver has kicked into gear and we can now use narrow spectrum antibiotics with less consequences. We already provide him probiotics so a low dose may not kill all his gut bacteria. There is no guarantee, however. We are also worried that longterm use could lead to resistance. Moreover, the literature is divided as to whether longterm preventative use actually prevents recurrent kidney infections. I think for now, we'll continue without but if he gets another infection and in a relatively short period, we will probably relent and put him on the narrow spectrum ones. It's a choice we don't want to make, but unfortunately, that we must - at least until his flap grows sufficiently to prevent reflux.

The next decision would be whether to have surgery and when. We haven't looked into that as of yet as he is too young and had been asymptomatic. Now, we cannot say that, but we hope that this was his first infection and his last.










Tuesday, March 17, 2015

WHERE YOU SIT, IS WHERE YOU STAND

It took me four months to allow someone that is not family to look after my son. My concerns were threefold. One, I was worried that they would not look after him well. I imagined a sitter reading a book or on her phone, just rocking his stroller, while he caked in the sun, until he screamed from the screeching stains of his diaper. In particular I was worried - in fact - let’s call a spade a spade- freaking the fuck out - that he would not be cleaned and changed adequately and would get a urinary tract infection. I know that when anyone in the family watches him, we watch him like hawks and surgically clean him, knowing that we cannot risk a UTI as for him this may lead to a kidney infection due to his reflux. Besides, even if we didn’t have to worry about kidney failure, how could anyone love him as much as his family? Second, I understood getting a babysitter as failing in being a mother. Currently, as I am working part time, I understand my “job” as looking after my son and from that perspective, I understood hiring a babysitter as failing in this employ. What kind of mother am I to leave my son with a stranger? Third - and closely connected to the second reason - as I work from home, I thought that I should be able to work and look after my kid. 

I stubbornly held on to my resolve, so much so, that my husband made an urbansitter account and made an ad for me. Once some girls responded, he asked me to only have a look at their profiles. Concomitantly, I was breaking down in my attempt to work and look after my son at the same time. I would nurse through conference calls (still do!) and go through my weapons of mass diversion. Drafting was more difficult, however. I needed both hands to type and I could never completely focus on an agreement or on a motion, even if he was asleep, knowing that he would wake up in half an hour and wondering if he was OK. In my attempt at diverting Luca so I could work, we bought a series of contraptions, so that the living room looked like an interior playground, until we found one that he enjoyed for a longer period. Even with the help of my inanimate sitter, I had trouble working. I felt guilty working and not playing with him and it would shatter my heart in bleeding shards when I glanced over and saw him look at me. At other times, he would be completely preoccupied with his bouncer - swinging to and fro (he loves the standing ones, hates the sitting ones) and spinning the wheels in front of him or chewing on a grainy animal beside him - and I would be entranced, watching him. How can a parent not be enamored watching the first activities of their child? What is his little brain thinking right now as it spins the wheel? Spin, spin! At last, I caved in. 


The first time a sitter came, I was so nervous that I didn’t go anywhere and consequently got no work done. The poor girl. I watched her like a hawk and introduced her to the rules of the house - how to put on cotton diapers. To wash him after he poops. How to prepare the bottle etc etc I also chatted with her when he was sleeping and by talking to her and seeing her play with him, I saw what a great person and sitter she was- she really seemed to have such a great time with Luca! - that I was comfortable enough to leave and work elsewhere the next time and actually got a lot done. Having a sitter has been a saving grace. I am getting my work done and not falling behind and I have even take some time for myself, using the time the sitter is there to go to yoga and my bar classes. The house is cleaner and I can clean while the sitter plays with Luca too. Most importantly, even though I have less time with Luca, I have more quality time with him as I can actually focus on just him and enjoy being with him when we are together instead of constantly fielding calls from clients and opposing counsel and dangling a toy in front of him as I focus on my screen and my call, working for my client and not for my son.

Tuesday, March 3, 2015

THE SIGNS ALONG THE WAY


Our little one is blossoming each day. It’s amazing to watch. Already, we have noticed that at four months, he appears to understand many words. He knows when we’re about to go for a walk, about to take a bath, when we’re about to feed and change his diaper. He also appears to know his name - when we shout out Luca, he turns to face us (and usually smiles - we believe he loves the sound of his own name and takes ownership of it!). I also note how his face explodes in a burst of a brilliant smile when I tell him I love him- whether I tell him in English or in Serbian (I use both languages interchangeably). I wonder whether he is comprehending the words or whether he is registering our tone and facial expressions. Possibly, it’s a combination of of words, tone, expressions and particular gesticulations and/or motions we do. For instance, when we speak of his diaper, we are checking his diaper or carrying him to the changing station. This would signal to him that his diaper is about to be changed, even if he did not comprehend the word “diaper” or any word associated with a diaper change. This reminds me of a study (I believe it was referred to in Oliver Sacks’s “The Man Who Mistook His Wife For a Hat”) that showed when we understand language, we are comprehending a lot more than words. We are conscious of tone, expression and other signals that aid in our understanding. If you’ve ever learnt a second language as an older child or adult, you will remember that you can get by with a few words and understand the gist of a conversation with such a cadaverous understanding of vocabulary and syntax by utilizing knowledge of tone, expression and other emotional signals. When the part of the brain that registers language in the sense of pure vocabulary and syntax, is damaged, most of these injured people can nevertheless go about their daily lives barely noticing hardship as they will utilize their comprehension of these emotional signals and by so doing, sharpen their register and become even better at their comprehension. So, while patients with such injury could communicate near to or at the same level as everyone else - they cannot comprehend spoken language with no emotional cues (i.e. a recording by a computer).

I was at first hesitant to speak both languages to my son and resolved to only speak one. However, in particular as his father does not understand Serbian, I naturally fell into a pattern of speaking both languages to him. I worry that by doing this I may retard his lingual development, even though I never speak both languages at the same time (or if I do, I will say a few phrases in English and repeat the same in Serbian). My husband and his family speak Greek to him on occasion, to add to Luca’s lingual melange. Recently, we have added another language to the mix - sign language. Hopefully, he will pick up all three languages and then utilize the three to sprout his knowledge of other languages, having a foundation in tongues derived from Ancient Greek, Old Slavonic and Norse/Latin. The grammatical complexities of Greek and Serbian (for instance, the Serbian use of seven cases, an extremely difficult concept for a foreigner to grasp and the reason my husband’s ambitious and enthusiastic excursion into the language soon petered off) and the versatility of English should (hopefully) provide him a solid base for grasping various different groups of languages. I’ve found however that the more languages you learn, the easier more languages are to grasp. We are all born polyglots (didn’t Chomsky prove that there is a universal grammar and that we can soak up any and all languages at birth?).

Recently, we’ve started utilizing sign language with our son. I was wary at first, believing that it may retard his verbal development (apparently a common fear). After reading up on the subject and being introduced to many arguments as to why sign language in fact accelerates verbal development and even reading - for you can introduce reading by introducing the signs of the alphabet and then simple three letter words that may be easier to grasp than purely visual learning (although I would think that this would depend on the particular child’s learning propensities and mechanisms), I decided to explore it. I was not so much persuaded by the argument of improving my son’s lingual ability - both hubby and I were a little wary of accepting all the arguments in favour of sign language that we read in sign language books (after all, while it may be worthwhile for the fox to eat all the chickens, one would hardly accept the argument without some skepticism from the fox itself, no?)- but by the fact that it fostered your child’s independence and expression. Even if sign language retarded lingual development - and that’s a big if - no one out there is arguing that it prohibits it or even impairs it permanently - only that it may slow it down to some extent and in the end everyone ends at an even level. In that case, I would much rather my son communicate with me sooner even if thereby he would communicate with me later with words. Whatever his comprehension, his vocal chords will simply not allow him to speak the words he knows in order to communicate with us. He may however be able to sign much quicker. I absolutely cannot wait for the day Luca signs “milk” or “diaper” or dare I even write “love” - my heart would summersault! 

We can already see that Luca wishes desperately to communicate with us and becomes evidently frustrated when he is not able to express his intention to us. He is a very vocal kid. He babbles constantly and experiments with different sounds. I have very little worry that learning sign language would in fact retard his development in any way. Another particular benefit for us, is the ability to utilize the same sign for English, Serbian and Greek. By doing this, we hope to foster his understanding that he is learning three different languages concomitantly. While we are using ASL, which is particular to the United States so that Serbian and Greek sign language are different and we are most probably teaching him the wrong signs for these sign languages, our intent is not in making him a polyglot in the sign language arena but in fostering our communication. For instance, if later he can sign “eat” and we have learnt the signs for say, different fruits, I can ask him what he would want, and he would have to think what he wanted - does he want an apple or a banana? This not only fosters communication and expression, but his independence and assertiveness  By allowing him to express what he wants and providing him a means to think of what he wants, we would be strengthening his character as he would not only be passively receiving what we give him and merely reacting to his environment but actively engaging with his environment - which to some extent, he already does. We would just be adding more fuel to his fire.