Saturday, May 30, 2009

Mom in People mag!

Mom wrote a letter to People magazine regarding their story on micropreemies. Her letter was not just published, but it was featured!

Click for larger version:

Friday, May 29, 2009

Ups and Downs

Last weekend we hit rock bottom. Loki crying all day Saturday, mom crying part of the day, and dad? Well, dad was not crying. Loki was not eating well and not sleeping. The night had been horrible and during the day that juts continued.

Generally Loki takes two naps a day in my arms lasting from about 30 minutes to an hour each. When I put him down in his bed he wakes up within ten minutes, usually, and if not tended to quick enough he starts crying and does not quiet down until being held again. As you know, one to hours a day of napping is not enough for a baby. In addition, he does not sleep more than approximately a total of six hours at night. You would think I would know how to go about this after working with parents on sleep training for I don't know how long. One complication here, the good old letumcry trick does not work. Loki does not fall asleep within 30 minutes of crying, no matter how exhausted. Driving around does not do the trick, he just cries a little louder, and taking a stroll with the stroller is not his choice of relaxation either. Because Loki is too little already, we cannot let him cry too long because he looses too many calories. So, we have not been able to find the happy amount of tears before falling asleep yet. Thus, I walk around keeping the little monster asleep several hours a day. He also needs to fall asleep like that at the end of the day. Once asleep after 8 pm I can feed him and put him back in bed, usually without a problem. Strange little fella!

Eating, well....... We have been all over the place with that one. Last Saturday, as I said, we hit an all time low. Loki was constantly uncomfortable, very fussy, was hungry but did not drink. He arched his back, kicked his legs and hit his fists in frustration. Obviously the Prevacid was not working yet. I had not given him rice cereal for a few days because he started to dislike it. Since our new goal for eating was "have fun with it, whether you gain or loose" we decided to not push anything on him. An aversion to the bottle and pacifier is enough aversion for such a little guy. I think both dad and I finally realized that either he is going to gain weight, or he is not. Making him struggle as much as we have was not really helping the little booger.

However, didn't mean we could and should not reintroduce the rice cereal. So I fed him from a spoon on Monday, and all of a sudden he decided to be a big, cool baby boy. He ate 20 mls of breast milk with rice cereal and fortifier three times that day. Exclamations of praise and joy were probably heard three blocks away. Oh my, was I proud.

For now Loki has decided to just be inconsistent about the whole thing. One day he loves the cereal, the next not so much. We give it to him alternating between a little cup with a nectar or honey like consistency, and the spoon when the cereal is almost puree like. We practiced the cup first with our amazing Occupational Therapist Heather, for whom he drank a whopping 30 mls! So, some days he eats wonderfully well, the next day he hardly eats at all. But, he has eaten enough to have gained 4 ounces, which moves him up the preemie chart to the 10th percentile, and helps him inch away from a feeding tube and scary diagnosis of failure to thrive. Hope, hope, hope is felt again in our household.

In the mean time Loki is just developing up a storm. We have had several laugh/giggle attacks, where neither him nor I knew what we were laughing about. Actually, maybe he knew, I just didn't pay attention. Anyway, it is cute to hear him giggle, especially since we still have to work for it. He talks all day long, wonder who he got that from? With a remarkable variety of sounds. His favorite is hey hey or hi. But he also says aaiaaaiaai, sounding like an old Italian woman whose kids aren't listening to her. He said ahum twice, awie awie (pronounced rather French), and he certainly likes to practice his gadee gadee gadee or neeneneneneneee (that is the Dutch boy showing signs of disapproval). Anyway, I am interpreting up a storm, but hey, I don't sleep, I am rocking the little guy 20 hours per day and feed him at the same time. Seriously, I believe I have that right until Loki tells me otherwise! I promise, I will listen to him carefully for the signs.

Loki is quite ambivalent about the cereal:


Uhm, not so ambivalent anymore, time to stop:


Loki and Auntie Em, don't they look great together?


Loki discovering cause and effect with his wonderful early interventionist Barbara. Boy he was tracking that ball well:


Uh, mom, seriously, what are you doing?

Friday, May 22, 2009

Feeding, yes again feeding

Wow, how often can one write about food, eating, feeding, being fed, drinking, breastfeeding, milk etc. Apparently many times. Because, and I apologize, I will write about Loki's feeding struggles once again.

Hooray, Loki is fully breastfed. I am very proud of this and hopeful that we will make it through next winter. However, also breastfeeding is not comfortable to Loki. Approximately 1/3 of the time he really enjoys snuggling up, suckling and getting his tummy filled. Unfortunately the remaining 2/3 is drama. Or I should say DRAMA with all capitals. Loki has reflux, or at least that is what we think. Thus, he has a lot of pain and discomfort during most of his feeds. He sees the breast, is excited, opens his mouth, starts suckling and all of a sudden cries, arches his back, kicks his legs etc. This pattern happens again and again and again. He spits up, fortunately not that much, and throughout the day we constantly hear him swallow away whatever just came up. Since we are still on a 10-11 time/day feeding schedule, I spent a lot of time with a grumpy little guy. Finally today I gave up and just gave him a bath instead. More relaxing for both of us.

It is sad and frustrating to see him go through this. Wanting to feed my baby is such a primal and basic feeling. I want him to enjoy food as much as I do and I want him to have a positive association with breastfeeding. Oh, and of course I would like to see him gain weight. He did, but only 2 ounces (60 grams) in 11 days. This made him drop from the 25th to the 5th percentile on the preemie weight chart. This means 95% of preemie boys are larger than he is at this age. That is not good news. If he keeps dropping, and cannot stabilize, a feeding tube will not be out of the question. However, too early to worry.

We are trying a new medicine since Tuesday, but so far no luck. On one of the preemie sites I heard though that Prevacid can take a while to start working. In addition we started with rice cereal right before a breastfeed. The problem here is that Loki starts crying when he sees the bottle (smart guy, recognizes the bottle), refuses to swallow when given with a syringe and is not quite mature enough to get it with a spoon. The idea is great though, the thicker liquid is harder to spit up and the rice cereal will neutralize the stomach acid. I just keep offering it to him several times a day hoping that soon Loki will pick a preferred method and enjoy the new food.

On a happier note, Auntie Emma (my friend) stopped by with yummy, yummy food and a set of good books for Loki, from Finnie, including finger puppets. It was wonderful to see her and Loki was all smiles for her. Little flirt he is!!! (photos follow)

Wednesday, May 20, 2009

Video: Talking and other new habits

Loki has several new habits. He likes to lay on his back and hold his legs straight up, or kick them back and forth. He likes to put his fingers - or entire hand - in his mouth and lick. And he likes to 'talk.' Loki makes cute little babbling vocalizations. Of course, when we get out the camera, he usually stops. This video captures a few moments, although they are far from the best.

The last of the four segments in the video was a surprising moment with Mom. She sneezed, and he laughed. So she starts the video camera and fakes sneezing. He responds, but he is unsure whether to laugh or cry. He makes a laugh sound, but without a smile. We found it to be quite a funny segment.

Monday, May 18, 2009

7 months

Loki's chronological age is 7 months today! It is amazing! He is still such a tiny little guy, growing fatter though. Eating has turned into a dance fest. Loki eats best when I strap the feeding pillow around my waist and move around the house, singing softly or making "sh sh sh sh" sounds. I must look like a fool for whomever catches a glimpse of this weird spectacle. He still eats between 10-12 times a day, these days rarely ever taking a bottle. Since he likes the same routine with sleeping, you can imagine how much time I spend with my Brest Friend strapped around me. Loki has been getting better in sleeping in his own bed though. The last few nights we have had approximately 1.5 hour between feeds, when he is actually sound asleep. It is great spending this time hanging out with my adult husband. Actual grown-up talk has become an oddity in this household with Loki having tons to say about what is going on throughout the day. Needless to say, those naps are sooooo very welcome and appreciated.

On another note, Oma (my mom) left yesterday and it has made the house feel empty. She spent almost seven weeks here, and it has worked out remarkably well, I must say. My mom is a humble person and does not quickly jump on top of us or Loki. So despite my lack of sleep and thus shorter fuse, we have all gotten along very, very well. She has helped us out tremendously! She's kept the household running and made sure food, drinks and babysit was always a "please" away. I am really missing her already!

Finally, we are going to move out of our wonderful apartment and neighborhood by June 6th. This is a somewhat unexpected decision but seems to the smart thing to do with me being at home with Loki. We absolutely love where we live, but are excited about the place we will, most likely, move in to. It is a very fancy apartment building with bigger, brand new apartments. It has a heated swimming pool, jacuzzi (hot tub), gym, common outdoor patios, and theatre room. Thanks to the current economic situation (and a subsidy) we are able to live in a bigger apartment for less money. We will know for sure sometime this week. Obviously, we are also very intimidated by the move. A lot to accomplish with not that much time to spare. It is going to be interesting, moving with a baby......

Trying out my new hat, matches Oma's hair and glasses:


Look, I am getting taller (or longer):


On a hike with the family:


Sleeping in the carrier:

Wednesday, May 13, 2009

Giggles, hearing, and guests

Here are just a few quick updates:

Loki laughed for the first time! I missed it, but the report is that he let out a cute little giggle.

Loki had his hearing test yesterday. As Mom wrote a couple weeks back, he had been surprisingly unresponsive to certain noises, and we did not know if it was a biological or behavioral issue. This test checked to see if his ear hairs, middle ear, and nerve were detecting sounds - and they all were. Thus, any continuing lack of reaction is a problem with processing, not the physical hearing.

The parents of our close friend Elizabeth paid us a visit on Monday. Living on the east coast, they have become big fans of Loki via this blog, and were in town for a special occasion. It was already very, very kind of them to take the time to bring us food and say "Hi" to us and Loki. But some unexpected developments during their brief time here in California made us appreciate their visit all the more. They even brought Loki a gift: A new copy of a children's book from the 50's about a pigeon living in San Francisco. And the Chinese food they brought was delicious. A photo is below, although it is a bit blurry.


Feeding at the farmers' market on Saturday:

Monday, May 11, 2009

Moederdag / Mother's Day

Our first Mother's day was wonderful. It was very special to celebrate this day for the first time as a mother with my own mom, Oma. The day started of a little grumpy for me; I really am not sleeping much. Dad was very forgiving though and made breakfast. Both Oma and I received gifts and cards. I even got two cards from Loki. It seems he has pretty good handwriting already! Loki's handwriting, interestingly enough, resembles both Nana's and Oma's handwriting. Wow, genetics shows up everywhere! We then took a stroll to the farmer's market, where Loki was able to process a full feed for the first time outside the home. Dad had booked a massage for me (using a gift certificate from a friend) and we wrapped up the day with some great sushi. All quite festive, I must say.

It is amazing to me that, a year ago, I was still longing to become a mother, not yet knowing I was pregnant. In fact, we had started our process to adopt a baby. Loki was, and still is, in so many ways a surprise and surprising. For many years, I was focused on becoming a parent, and did not want anything more than to hear the laughter and crying of a baby - our baby- in my life. It is a lot of what I hoped for and, sorry for the cliche, much better than that, sleepless nights or not. Weirdly enough, I do not feel that it took much to get used to being Loki's mom. Somehow, from the moment I saw him, I felt MAM (MOM) in every cell of my body. I knew this little guy belonged with us, in our family. Although nervous about his medical well-being, I have never felt very nervous about being his mother. I knew him and I know him. I love calming him when he cries, and I love cuddling up, feeling his warm head and cool cheeks against mine. My heart melts when I see his beautiful smile and when he clenches on to our shirts with his little hands. Loki is such a wonderful human being with a most gentle yet feisty character. He wants to be held when falling asleep and loves to be bounced and pat when eating. The little guy is entertained when we stare at him in awe! He is even cute when he screams his lungs out just because he needs to process the day, when he does not want to eat the bottle, or when he can't fall asleep.

Loki is beautiful; he is sweet; he is courageous. He is happy; he is strong; and he is a good communicator. He develops new skills in the blink of an eye and he matures visibly when we are looking at him. And yes, he can be a handful at times, and we are exhausted at the end of each day. Loki can be grumpy and sad; he wants to be held all the time; and he has a hard time sleeping during the day. But he is our wonderful happy, grumpy, smart, screaming, laughing super baby.

No matter how hard I try, words can never fully describe all the amazing feelings of love and awe I have for this little human being. He is who he is, and that is so incredibly perfect to me. I am so very, very proud to be Loki Sky's mammie.

Sunday, May 10, 2009

People magazine on micro-preemies

For the Dutchies reading, People magazine is a weekly that mainly has celebrity news and gossip, but also a couple "human interest" stories of inspiring (uh...) people. This week, it featured six adult micro-preemies. Here is a scan. As always, you can click on an image for a larger version.









Happy Mother's Day; Lots of smiles

It is already Mother's Day where most people read this blog. Obviously, this holiday has taken on a new meaning for both of us because we are parents, particularly because Loki has needed extra attention. Besides the medical portion, the great majority of this attention has been provided by Mom, due to her biology (milk!), skills, and initiative. I simply cannot put into words how grateful and impressed I am with her effort and dedication. For now, the least I can do is wish her a happy first Mother's Day

Loki went to his general pediatrician on Friday. His weight increased 6 ounces in the 8 days since his previous visit (up to 10 lbs, 8 oz, or 4.76 kg). That is about the ideal rate of weight gain. If this continues, then the breast feeding will be a success.

But feeding continues to be difficult. Loki gets about eleven feedings per day, at least nine by breast. That's not too simple. Mom now sometimes has to swing and bounce and feed him, simultaneously, with a pillow strapped around her waist. And the bottle feedings are becoming more difficult. Sometimes, Loki screams quite loudly at the mere sight of the bottle. If we could choose, we would certainly pick for Loki to prefer breast over bottle. But a stronger bottle aversion would mean that only Mom can feed.

[Loki will have his appointment with the gastroenterologist on June 18.]

On top of this, Loki does sleeps well, nor enough. Particularly during the day, he has a difficult time napping, and requires lots of holding, especially by Mom, to get him to sleep. Loki has become quite the "Mama's boy."

Mom and I went out to dinner for our first time together, out of the house, without Loki, since he came home. We ate wonderful Mediterranean food on the front patio of a nearby restaurant. It was great to do so. But Loki stayed awake "talking" with Oma instead of sleeping.

In addition to the specialists (three per week!), Loki had a couple of extra visitors this week. Amber - one of his primary nurses from Alta Bates - stopped by, as did Graciella, Mom's former colleague. As usual, Graciella brought over many gifts. Loki very much enjoys the stuffed octopus, which he grabs from his seat and squeezes, and pulls to him. (Photos below)

We bought a glider chair, one that soothes Loki by moving side-to-side. Although it is very ugly, it seems to help getting him to sleep.

Loki's behavior continues to develop. He looks at sound and makes eye contact much more easily, and smiles a lot. I have been trying to capture smiles in photos. Some are below.

The ugly but comforting glider:



With nurse Amber:


With Graciella:


Hiding behind the octopus from Graciella:


Oh, hi!


Giggles:


Happy with Oma:


Sleepy with Oma:

Monday, May 4, 2009

Updates and Explosions

Loki, daddy and I (mommy) were sleeping in on Sunday morning. Sleeping in basically means hanging out in bed with some coffee, bread and the little guy happily looking around. Just being lazy is so lovely. Dad was playing a fun game with Loki, where Loki was being rocked back and forth on dad's bare stomach while daddy would enthusiastically exclaim "wheeeeee, wheeeee." Both men were enjoying the game until it was time to hand the little guy back to me for food. Dad moved his hands up and noticed a dark brown, wet, warm and oozing substance sticking to his hands. YIKES!!!

Loki had not been able to poop on his own for a while. Around 5:00 am I massaged his belly, put a warm pack on it and went back to bed after some milk. Well, dad's enjoyable game obviously helped Loki with his regularity. BIG TIME!!!

For those who dare, here is a picture! click here.

This past Monday Loki had a renal ultrasound after which he was seen by his Urologist Dr. Baskin. The very good news from this visit is that Loki's kidney looks like a normal and healthy one. We won't have to come back for another year!!!!

Since Friday Loki is also drinking a bit better. It's with ups and downs and I (mom) am very nervous about being too excited, but he did gain 2 ounces (60 grams) between Thursday and Tuesday. Hopefully this Friday we'll see even more ounces packed on to his tiny body. Loki really enjoys drinking from the breast, but still has many episodes of arching back, most likely due to reflux, and crying. The bottle is less and less interesting to him and causes gagging. We can not give him much fortified milk this way, but we are hopeful he is still improving his titty tricks.

Loki gave a fantastic performance during his early intervention session today. He showed the very early signs of deliberately causing an action. Barbara, our wonderful E.I. seemed as excited as I was. It is so fun to see my own baby work through the skills that I have helped others with for so long. He pushed a button with his hand, then actually listened to the music he caused and did it again. Of course he does not have an understanding of cause and effect yet, but we could almost see his brain cells multiply. He is just amazing to me. Our genius even made a little table toy swirl around purposefully. He payed attention to toys he did not even seem to notice last week, tracking and remaining focused for very impressive lengths of time (like, more than a few seconds).

Anywho, just being a proud, doting mommy! In our pediatrician's words "delicious baby."

p.s. the cards are almost all written and we've started sending some out. Please be patient! Especially Dutchies. Yours will be sent by my mom, Oma, when she gets back to NL. She is BTW rocking our household as I feed our dude more or less non-stop. We will most likely not eat anymore after she leaves. Nor will we have toilet paper, somebody to pick up the phone, buy soy decaf latte or sew new pillow cases. The floors will be dusty and dirty, the couch covered in cat hair, and the dishes piling up. Oh well........

(Despite what is listed below, this was written by Mom)

Two videos and two photos

Loki smiles, talks, and even laughs a bit while Mom is on the telephone:


Loki's major accomplishment:

Check this out:


Now, what's on the telly?:

Friday, May 1, 2009

Photos

Oma en kleinkind:


All done! Now tired:

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.

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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.