Sunday, February 14, 2010

The Good and the Ugly (video and photos)

February is "national check-up month" for Loki. Just to give you an idea: he goes to feeding clinic twice, has occupational therapy at home once and a Synagis shot once. He was seen by his nephrologist Dr. Lo and ophtamologist Dr. Good. He will see Dr. Tsai at the gastroenterology clinic at UC San Francisco as well as Dr. Baskin his urologist at UCSF. The urology appointment will be preceded by the beloved kidney ultrasound. Lastly, he has a date with Dr. Daly at the infant follow-up clinic at Alta Bates in Berkeley. (This means the second round of the Baley Scale of Infant Development).

First, the best news is that Loki is rapidly gaining weight. He is up to 20 lbs and 14 oz (9.48 kg). According this growth chart [PDF] of very low birth weight premature boys, this puts him at the 75th percentile! What's more, this group includes babies born as large as 1500 g (Loki was 610 g) and 37 weeks gestation (Loki was 24 weeks). So for a 24 weeker, Loki should be even higher than the 75th percentile.

Thus far, we have mostly good news from Dr. Good and a mixed bag at Dr. Lo's office. Dr. Good witnessed Loki's lazy eye, but is not convinced something needs to happen immediately. Apparently, unlike most situations, in case of strabismus, preemies are at an advantage. Former preemies are more likely to overcome a lazy eye without an eye patch or glasses. For now, we'll just see Dr. Good in three months.

The good news from Dr. Lo is that the protein level in Loki's kidney has gone down again, from 0.8 to 0.21. (We are not sure of the untis; perhaps mg/dl?) Any protein leakage from the kidney indicates some sort of inflammation. In Loki's case, the cause of the inflammation stems from the trauma his kidney endured during its failure in January 2009, the three surgeries, and the dehydration over summer. Thus, his kidney is still recovering, which is great to know. Any leakage above 0.2 for adults and 0.5 for children is treated with medicine. However, treatment is usually not started until children turn 12 months because of its impact on kidney growth. Fortunately, Loki has steered away from another medicine in his diet, at least for now.

Less good news is that Loki's kidney will always be at risk. For whatever reason, I had hoped to hear one day that Loki's kidney is functioning normally and the many jars of antibacterial gel could be thrown overboard or at least could be cut in half. This is not and, unfortunately, will never be the case. Dad had always understood this, but somehow I had thought that maybe, perhaps... who knows?.. he would grow out of this. Dr. Lo emphasized the need for Loki to be tested for kidney functioning the rest of his his life, even if all tests come back within normal for 5, 10, 20 years. As she described it, "a kidney like his, having endured this much trauma, will always have less reserve and never be completely free of risk. Most likely, he will have issues with his kidney at some point in time." Goodbye bubble... hello anxiety.

A single, imperfectly functioning kidney works overtime and tends to shed more fluids than a healthy kidney. This increases the risk of dehydration. Loki's urine was too concentrated. Dr. Lo unfortunately had not informed us earlier that Loki needs to take in approximately 25% more fluids per day than a typical child, at least for now. This seems easy. It is a very tricky balance, though, between keeping him hydrated by "pumping him up" within the three hours that a typical feeding cycle takes, and at the same time preventing him from throwing up because we go to fast. We have recently been quite successful. Until he is toilet trained, we just have to write down the number of wet diapers. Once the boy uses an actual toilet or potty, she mentioned we may need to measure Loki's urine output. This will provide us with a more exact idea on how much extra his kidney needs in order to function properly.

The long term implications is what upsets me most. The anxious mind that rules my life now and then immediately took me to some horrifying places. Can you see an ever more independent Loki thrilled by the power of manipulation and resistance? "I am not thirsty! I am not going to drink!" His scared mama looking at him with teary eyes begging him to please, please, please take a sip! It's also disturbing to think about school or daycare settings where a substitute forbids him from drinking during class because "nobody is allowed to drink." I have had many imaginary conversations with these subs already during late night hours, and oh my, they had better watch out. Dr. Lo agreed that it can be very challenging to get enough fluids into a child. I am afraid that we have many more emergency room visits due to dehydration ahead of us. Every time Loki gets dehydrated--and we have seen how easily this happens--there is more damage to the kidney.

Finally, I am worried about what this means about building up Loki's immune system. Dr. Lo explained that Loki will need flu shots the rest of his life, as a true flu really strains the kidney. However, flu shots are not a guarantee he won't ever catch the bug. Although he needs to get common colds in order to become resistant to viruses out there, a regular cold often comes with a cough. A cough increases symptoms of GERD (more reflux), and more reflux means higher risk for dehydration. You can see my head spin in circles, I assume?

The simple reality is that Loki will go to school and catch colds and even flues. He ain't no Bubble Boy. On the other hand you will hear "please use the hand sanitizer, wash hands upon entering, and please don't visit when you have a cold or flu" many, many more times. Yes ,we are slowly entering into a space where Loki visits friends and mouths their toys. We have outings to public spaces where Loki is exposed to public germs. Unfortunately we are going to be a bit more cautious than a typical family. And honestly, I think that bites!

To close this post on a more positive note, Loki's development is incredibly fun to watch right now. After the last procedure he regressed quite a bit, which was scary to watch. Recently, it's all starting to look much brighter and Loki is especially working hard on his receptive and expressive language. His vocalizations are somewhat behind his adjusted age of 12 months, but he is starting to get the hang of language signs. Although not always accurate or quite consistent he uses more (=I want), eat, all done (=I really don't like that), dog (=all mamals), fly (=everything that moves), jump (=frog or stuff falling down) on/off (=lamps), open and shut. In addition Loki has renewed is love for sticking out his tongue; he points at his feet, hands, hair, and nose; and he "puts" cream on his tummy. He points at most objects and people he sees frequently and he feeds his doll Ole with a spoon. Loki's gross motor skills are a little bit delayed, although he is very skilled at crawling and cruising around furniture. He does not show any interest in walking when his hands are being held. The little guy pulls in his legs and starts screaming when we try to encourage him to take a few steps. I wonder sometimes whether he is a little intimidated by his new, impressive weight.

Lots more to say but the post is long enough as it is!

Thanks to those who were able to hang in there for the whole ride.


The three clips in this video requires some explanation, as most dialogue is in Dutch. (If you get this by email, you can watch the video at the blog.)
  1. Talking with Mom, Loki knows to shake his formula. She asks, Is it food? He puts it in his mouth. She says that it goes in his tummy, and he puts it there. When she asks, Where is your hair?, he crawls off and (eventually) gets his comb. He then correctly gives the locations of his feet and hands. But when asked about his nose, he goes for the ear. Finally, when Mom says the Button Buddy is for his tummy, he puts it there.
  2. Loki shows off his ability to make a "raspberry" sound. After Mom points out that is what his farts sound like, he signs for washing his hands, which may be because he pointed to some antibacterial gel. Please note that this is not my real laugh; I am intentionally being goofy here.
  3. Loki "eats." This part is somewhat long and boring, but we want to show the limits of his eating. He is so much better than a couple months ago: He happily puts food in his mouth and chews. But notice that, over the three or four minutes, he actually swallows very little.



Rebecca, Margaret, and Loki on top of San Francisco's Twin Peaks, looking toward Oakland:


Rebecca and the big boy


Playing with the twins:


Hug from a twin:


With Mom on the Berkeley pier


Hanging back from the Ergo carrier:


Swinging!


Off to the beach with Mom:


Strolling:


Picnic on the university campus:

12 comments:

Cheryl said...

Hey, I'm first again--my insomnia is paying off! I too have come to realize that some of Brianna's issues will be lifelong--she lives with terrible backpain when she is lying down, she has some residual emotional stuff that crops up unexpectedly at times, she is struggling a lot with her drawing/pencil grasp, etc...so nothing is perfect. And we've never talked about my grandson, Lucas...he has croup from reflux, and at age 3, stopped breathing on his way into the ER. It also happened once on the freeway...he also has a life threatening peanut allergythat is terrifying because he can stop breathing in a few minutes when exposed, travels with his epi pen, and inhaler everywhere...yet is basically a healthy, strong child. Kristin describes feeling much as you do here...at first, she hoped the problem would just be something he "grew out of", but just this week, another scary episode--and he's 8! the spaces between hard times are less, and in general, he is doing great...but this chronic medical stuff is a huge weight to carry for parents. I take these calls all the time about schools not following through, etc...sorry to ramble on and on, but I just want to say that you are not alone, and honestly, worrying about every aspect of your child's development, health, education, future comes with the territory...but I also SO understand the hope that at some point, the worries will be over...he looks so wonderful, and is so responsive and smart...give all the things that COULD have gone wrong, he is doing so very well...and I know that comforts you. Hang in there.
cheryl

Piapie said...

It is strange to see short sleeves and green grass given that we are all bundled up and surrounded by snow on the opposite coast!! I can't get over how big and happy Loki looks. What a charmer!

marieke said...

O I can imagine your thoughts going around in circles, have imaginary conversations, (I'm your sister and do the same!. It must be hard to see the other truth in Loki's life. I say the other because he-is- the- most- adorable- smart and funnie kid!! Thats also the truth. So happy he develops good. Hang on ok? Big hug, you are doing so well. XXXX

Greet said...

lieve Kathalijn, wat een lang verhaal, wat een zorgen om dit jongetje, het doet me pijn, maar wat heerlijk dat je in het Nederlands op de video praat, heerlijk, ik vind hem slim en erg leuk. gezellig was het weer, veel liefs en je ziet er goed uit deze keer Greet

fransje melief said...

Hey Lijn,
Wat een leuke video! Wat fijn dat ie ook echt Nederlands leert. Ik kan me goed voorstellen hoe je angsten de overhand kunnen nemen, zeker als je zoiets dat je een beetje hebt verdrongen, net hebt gehoord. Loki is wel een heel sterk mannetje, dat kun je zien vanaf hier. Ook super dat zijn ontwikkelingen zo goed gaan. Het ziet er naar uit dat we hem zeker gaan zien dit jaar! Veel liefs, Fransje.

Elaine Stiles said...

I sympathize immensely with your vicious thought cycles. We have been so lucky with M&M, but one never knows if their problems now will slowly go away or grow into more of an impediment as they get bigger. I sometimes think if Madeline hits her head one more time from her lousy balance she's going to get permanent brain damage and if I was any kind of mother I'd buy her a helmet already. But then there are the good and pretty normal times that make you forget about all that and think "I'll deal with that when it actually happens." I love those moments!

Mom said...

Elaine, I so recognize the thought of "If I was any kind of mother I would....." I agree, the moments I can let go and know we'll deal with it whenever it comes, feel liberating. Simple fact is, we do not know the future and we can not constantly focus on preventing what may possibly happen. I guess Cheryl's comment is a testimony of that!

Suzan said...

Lieve mom,
Wat een ongelofelijke zorgen allemaal! En die reflux, gaat die wel over als hij ouder wordt? Ik vind echt dat jullie het geweldig doen! Dat jullie ondanks alle zorg die Loki nodig heeft, toekomen aan het begeleiden en stimuleren van al die vaardigheden. Dat hij ongeveer net zo ver is als een kindje dat niet vroeg geboren is! En nou maar hopen dat hij niet al te koppig zijn eigen wil zal gaan tonen. Ik zal heel veel wensen voor jullie doen, voor het geval dat het helpt. Heel veel sterkte! Een hele dikke zoen, ook van Phileine

Heleen & Frits said...

All of a sudden we knew why this kid is so special: he has hearts in his eyes! See the picture hanging from the ergo carrier! No kidding, kid!
Love you even more!!!!!

graciela said...

HI Baby Loky,

It is great to seen how much you have grown and how many words you are able to understand in both languages. Hurray!!!!

Congratulation mom and dad.

We love to have a play date sometime soon with Isabella and Dany. Actually Dany is incharge to mention baby Loky on our daily prayers.

Lots of love. Gracie

Mama said...

We love Kat's Dutch narration on Loki's videos. Your sweet voice uttering Dutch encouragements comes to me throughout the day. Its so exciting to observe Loki's quick mind responding to your questions. We loved watching him take animals out of his little playhouse at your direction. Keep the great pictures and videos coming. Its our favorite form of family entertainment!

Anonymous said...

I missed the video the first time I read this post, and I have to say - what a great video! I love the part when loki steps up to grab his comb and when he touches his ear. too cute! he looks so much like Jesse right now. crazy! I am so happy he's doing so well. xoxo courtney

About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.

In August 2010, he and his parents moved to the Netherlands.

Read about his first name.
Read & hear about his middle name.
See photos.
See videos.

Subscribe via email

Enter your email address:

Delivered by FeedBurner

Loki's Holiday Gift Drive

Please consider donating to Loki's Holiday Gift Drive for the Alta Bates Summit Medical Center NICU. You can donate by Paypal or credit card here:





Click here for more information, including how to pay by check. For all posts on the Gift Drive, click here.