Tuesday, March 31, 2009

Surgery details, feedings, more guests

Below, I describe the two procedures which will be done to Loki during his surgery on Wednesday in San Francisco. I warn you that the details are a bit icky.

But first, a note on feeding. It seems to us that Loki's feedings are actually getting more difficult. When we feed him, Loki gets quite upset, squirming and grunting. This contributes to his feeding taking so long: about an hour to and hour and a quarter each time. This, and some other symptoms, lead us to believe that Loki has gastroesophageal reflux. We'll discuss this with his regular pediatrician next week. There is a chance this is related to his hernia, so perhaps things will change after the surgery. Otherwise, one thing at a time...

Mom's mom ("Oma Heleen") and step-father ("Opa Frits") have arrived in the US. Of course, they are very excited to see the little man, whom they last say soon after he was first born. But first, they are visiting relatives of Opa nearby. Part of the reason for this is to be sure they aren't bringing any germs. The last thing we need is for Loki to get sick right before his surgery. They will be here for quite some time, regardless.

On to the details: As I described at the time, when Loki's ureter (the tube from the kidney to the bladder) was repaired, a stent was left in. A stent is a device that keeps his ureter from collapsing as it heals, by providing some structure and support. Now that the ureter is healed, the stent must come out. Of course, if it were to come out the same way it went in - through the wall of the ureter- then the ureter would need to heal again, requiring a stent. What to do?

The solution is to use a wire to go into the penis (ouch ouch ouch), through the bladder, and up the ureter. The stent will be grabbed and pulled out (ouch ouch ouch). Needless to say, Loki will be unconscious as this occurs.

Meanwhile, as I have also described before, Loki has an inguinal hernia. In this, the bottom of the abdominal wall has ripped, allowing some intestines to slip into the scrotum. This is common in preemies, as their bodies are not prepared for gravity without the support of amniotic fluid. In Loki's case, his hernia is big. How big? Click here if you want to see a photo of my son's genitals. (He will thank me for this when he is a teenager.)

During the surgery, an incision is made on each side of his scrotum. The intestines are pushed back into the abdomen, and an artificial net is sewn into the abdominal wall to keep everything up where is should be.

When we last spoke with the doctors, they gave the impression that these surgeries were relatively routine. The greatest risk is a complication from the anaesthetic. We were told that Loki will probably only stay at the hospital 24 hours after the surgery.

What is strange is that, despite having Loki in the hospital for so long, it is now rather disturbing to imagine him in a hospital bed, connected to lots of wires and tubes. We've become quite adjusted to having him in our home, as tiring as that may be.

Saturday, March 28, 2009

Sun and milk (photos):

The weather is amazing here right now. Although we don't have more then a minute here or there to go out and enjoy it, we thoroughly do enjoy when we have the chance. Loki is just chillin' in his stroller or the carrier, looking around for the first few minutes, after which he dozes off while sucking on his pacifier. It is a nice treat to stroll together, the three of us, matching the demographics of young parents with hip strollers in our neighborhood. Because of course we consider ourselves to be remarkably hip, young parents :-)

Not much has changed this week. It is a little bit easier though, to have Loki break out in a big grin while singing a silly song or performing a silly dance. We feel like fools sometimes, working so hard to charm our tiny dude into smiling a few seconds. All the frustration around hours of shoving milk into his mouth disappears when we see his toothless smile. As his daddy says "he is a cute little fart, that makes our hearts go flutter, flutter, flutter." He is partially joking, but the essence is true or course.

With regards to the meds to increase milk supply, we truly appreciate the concern and support we have received around this. We do not take the risks of this drug lightly and have spoken to several medical, and non medical specialists, about this. In fact, I am not even taking Tylenol in order to keep the milk as clean as possible. I am taking the significantly lower dose, for much shorter time as suggested by the lactation consultants. It is 1/4 of the suggested amount and time as the doctor's prescription. Loki is drinking a tiny bit from the breast on a daily basis, but the vast majority of the milk is pumped and will be dumped. Although Loki has gotten 5 months of breast milk already, and will have at least 5 more to go, just from the freezer, the goal is to get him through next winter on breast milk. The chance he will end up in the hospital with respiratory issues is much, much smaller as long as he drinks my milk. His immune system is more compromised than that of a typical baby, which will be the case for the first few years of his life.

The good news, Loki is slowly getting a better grip on the whole breastfeeding situation. We are hopeful he will be on mostly breastfeeds in a month or two. Which is by the way a completely random guesstimate.

Two handsome guys:


And again, two beautiful men:


Eating while swaddled equals containment and sweat:


You should see my parents behind the camera, trying to make me smile:


Okay, here you go:

Tuesday, March 24, 2009

Twins

As Loki slumbers on my lap I take the opportunity to write a quick post.

We near five and a half months of pumping milk and three months of breastfeeding practice. All of a sudden Mommy's boobs are not so happy anymore and have decided to produce less and less.......and less milk. Apparently this is quite common in situations like ours. If Loki does not breastfeed well by his third month corrected/adjusted age, there is a pretty big chance he will not be able to learn breastfeeding at all. In addition, if by month 6 of pumping the milk supply is not sufficient, it is hard to maintain a supply at all. However, rather than settling for this fact, we pumped it up a notch. Literally and figuratively.

As the Special Start nurse phrased it: "we are going to trick your body into thinking you have twins." That is a wonderful idea of course. I pump a minimum of eight times per day. In addition, we are still aiming for ten Loki-Breast connections per day, although realistically this comes closer to seven or eight sessions. Of course, the bottle is offered seven to eight times a day as well. Days here are pretty milky, to say the least.

Unfortunately the plan is not working well. My milk supply is not really coming back. I have tried a great variety of herbal supplements and teas, which initially did help. So the next step, since giving up is not an option quite yet, is the hard-core drug Reglan. This drug has a pretty scary list of side effects from simple diarrhea and fatigue, to symptoms of serious depression, anxiety and suicidal tendencies - in the mom, not the baby, that is. So, we'll keep a close eye on me this time, and Dad promised to rescue me if I end up wandering around like a zombie, disconnected from reality. I am not too worried though. The more serious symptoms are less common and disappear soon after quitting. If this does not work I am probably just going to have to accept that I did what I could and there is not much more left to do to get the milk factory going again. But, I am hopeful for now. Especially since Loki has gained weight consistently for approximately two weeks now.

Our little dude had his second round of shots today, and as usual with unpleasant medical interventions, he behaved like his heroic self. He screams for a few seconds, looks at me with a puzzled somewhat disappointed face, and then just cuddles up happy with all the hugs, forgiving me for the pain I had him go through. Well, obviously this is my interpretation of the whole situation. He has three colorful band aids on his chunky, and I mean CHUNKY, thighs. He weighs 9 pounds and 7 ounces. Wow........

Mommy and Loki taking a bath:



Waiting in the doughnut for breakfast:


Suckie duckie is waiting with me:


Me and my twin:


We do look alike, they say. Just as handsome as I am:

Monday, March 23, 2009

Appointments

Tante Marieke and Oom Martin are back in The Netherlands, and they are greatly missed already. They spent the last few days of their vacation here with us. Upon their return from their climbing adventure at Joshua tree, Loki greeted his Auntie with a huge grin. This little guy knows how to charm Tante Marieke into getting him lots of gifts. At least this is the effect his sweetness seems to have on her.

Loki has gained weight and we are very thrilled about that. On Friday he weighed 9 pounds and 1.5 ounce (4.1 kg). The long feeding sessions are starting to pay off. We hope to soon see a change in how rapidly he is able to take in his milk. Spending approximately 12 hours a day just on getting the little guy to drink is pretty exhausting and is starting to show it's wear and tear on our energy. Especially since Mom's milk supply is going down, everybody would benefit from Lokers drinking from the breast.

On another note, we see Loki reach new developmental milestones regularly. He plays with his tongue in a way we have not seen before. In addition, when Dad holds Loki in prone position (tummy) on his hands to "fly around the room," Loki is able to hold his head in midline quite often, rather than dropping it down to inspect the floors. Finally, little Mister Sky bears some weight on his legs when held in a standing position. He sometimes even bounces on his legs while expressing his excitement.

The surgery is rescheduled back to the first of April. We are happy to have his hernia fixed, and somewhat hopeful that this will help him feel less uncomfortable.

In the mean while Loki and Mom just move from appointment to appointment. Just this month we have had 17 doctors', nurses' and other specialists' visits. This comes down to a little more than one meeting every other day. Most of those are in the home fortunately, although the ones outside give a nice break during Mom and Loki's long, long hours inside the house. One can imagine though, that with the long feeding sessions, there is not much else Mom and Loki do but feed and visit with specialists. Thus the unanswered phone and email messages, since Loki does not like to eat while too much talking is going on.

Photos will follow soon.

Thursday, March 19, 2009

Five months! Smiles! And a clarification

Yesterday, Loki turned five months old. Of course, he is more like a seven week old baby. However, he now just looks bigger and older than when he first came home. He is up to 8 pounds, 13 ounces.

Loki has new skills. As shown below, he has become quite good at keeping his head upright. He can even hold up his head, leaning on his arms while lying on his stomach on an incline. He is also beginning to smile in response to us, when we smile and make friendly, happy baby talk.

In fact, a couple days ago, we were both on the couch, and Loki was on Mom's lap. She was trying to get him to smile. He did so, with a big happy grin towards her. He then turned his head to me with his big smile, and then back to Mom. It seemed he was showing off a bit. Of course, Mom and I melted.

Loki's third - and hopefully final - surgery has been delayed until April 15.

Mom's sister "Tante" Marieke and her boyfriend "Oom" Martin are back for a few days.

My post from Sunday evening seems to have created some inaccurate impressions. So let me be clear: Mom does more than her share of the work. I regularly offer to help more, and she typically declines. Yes, I am tired, and raising a baby - especially one with greater needs such as Loki - is tiring. But I certainly get more sleep than she does. In so many ways, including her dedication, enthusiasm, energy level, and ability to take on so much responsibility while sleeping so little, I could not ask for a better mother to my child.

Wednesday, March 18, 2009

Video Hiccups

This is a few weeks old, yet very cute!
Daddy likes to give Loki a good pat on the back to make him burp!

Photos

Soon a little bit more about all the exciting new skills Loki is mastering. For now just a few photos to demonstrate.

All of a sudden leaning on his arms, holding his neck up while looking around:


Very proud mommy:

Tuesday, March 17, 2009

Video: Loki is entertained

Monday, March 16, 2009

Sleeping in

FYI, sleeping in on the weekends for mom means sleeping about one hour after having been awake from 3:00 until 8:00. It feels more like an afternoon nap. Nevertheless, it feels great, and I am very grateful that dad allowes me this time.

Gradually, a routine; surgery date; photos

Loki has been home almost a month, although I could not imagine him at a hospital. Mom and I are settling into some degree of a routine, as is Loki. During the weekends I wake and take care of Loki around 8 am, and Mom tries to sleep until 9, when she must pump. During weekdays I go to work unless Loki has had a particularly rough night, in which case I give him his 8 am bottle as well. Loki is always awake between 3:00/4:00 am and 8:00 am, during which time mom breastfeeds, gives bottle feedings and attempts to comfort him. Before at least five of the bottle feeds mom spends approximately 20 minutes to work on breastfeeding. During bottle feedings she usually pumps milk as well. I give Loki his last two bottles of the night, which usually keeps me awake past midnight. During weekend days we alternate feedings and household tasks.

Much of Mom's and Loki's time is taken up by visits to doctors and from nurses. I think there are four appointments this week?!

Through all this, we still struggle to feed him enough. He is gradually putting on weight, and is around eight and a half pounds. The exact weight depends on which scale: the doctor's, the home health nurse's, or ours. But on all three, his weight is increasing, although not at the ideal rate.

Loki's third and final surgery is scheduled for April 1 at the hospital in San Francisco. In this procedure, the stent which was left in will be removed, and his hernia will be repaired. He will probably spend 48 hours or so there. Coincidentally, in the US (not sure about the Low Country) that date in April Fool's Day, in which people play jokes on one another. Hopefully Loki - the Trickster - won't try to be too funny.

Below are some photos. I hope to have a new video tomorrow.

Loki under the ceiling of infinite entertainment. Check out the shoes!


Pull my finger! T-Shirt says "Yes I can!"


He is presently sleeping in a portable playpen next our bed. The playpen has an elevated sleeping surface inside, and a changing tray on top (where the bear is). The sleeping surface was is slightly sloped to help with his digestion. (Down is under the tray.) Recently, his sleeping movements have changed, and he quickly rolls down the slope. We took away the wedge, but Loki still moves around and always ends up halfway under the changing tray.

Friday, March 13, 2009

Fashionable little dude (photos)

The shirt says: 50% Papa and 50% Mama is 100% Ikke (I). Mh? Maybe 80% Papa and 20% Tante Marieke?


I still really like sleeping. Just not getting enough of it because eating takes too long:


He is a boy, the shirt (from Oma Heleen ) says so:


Really, I just want to sleep:


Look at that top, made by Oma Edith (Muus and Lova's Oma):


The hat comes from Oma Heleen as well. And the pants? Fashion King and Queen of the Lowland, Muus and Lova, wore these before:


I am cute, right?


Meeting our upstairs neighbor, Loki takes a good look:

Tuesday, March 10, 2009

Eating (photos)

Loki is eating a little more. At the 9:00 pm feeding yesterday, he ate a whooping 104 mls. This is usually the hardest feeding of the day, so Dad and I were hardly believing the energy with which he put back all that yummy food. Unfortunately most of the "more" is still by bottle. It is still quite a struggle to convince the little guy that eating by breast has many, many extra benefits. For example, it is always available at the right temperature and it is easier to gage how much he gets. Oh well. Hopefully continued practice will pay off.

The good news: he gained ten ounces in eight days, as per doctor scale. He weighs in at 8 pound 5 ounces. Although still looking tiny, the fat is finally starting to move to other places than cheeks and hands. Maybe soon he will fit some of his cute 0-3 months outfit, rather then disappearing in them.

Since he fits in the Baby Bjorn carrier, going out for walks is a much easier and very pleasant undertaking. Loki wears an outdoor jumpsuit over his clothes, goes in the carrier and voila, ready to explore the neighborhood. However, he usually falls asleep even before I hit the sidewalk. I guess I am the one doing the exploring. I see the little parks in the area where we will go to play when Loki is a little bigger. Sometimes I show Loki his first home, a.k.a. Alta Bates (from the outside, that is) and just enjoy being outdoors with my handsome little dude tagging along.

Over the past few days, Loki has surprised us with some pretty fancy head and neck control. This is not uncommon for former preemies, as they have spent more time on their tummy fighting gravity then typical babies, by the time they hit 45 weeks. However, in some of the other areas Loki needs a little extra support to catch up, even with his corrected age of 5 weeks. I am not too worried about this, as I have spent most of the past 7 years working with children like Loki. It may be hard to understand though, when you see Loki for the years to come and wonder why he does not talk or walk like most kids his age.

For those who wonder, Loki's age is corrected to how old he would have been right now if born on his due date, which was February 4th. Although his chronological age is almost 5 months, his development is more comparable to that of a five week old baby. With a few exceptions. It can take many years for him to catch up on his milestones in all developmental domains: gross and fine motor development, language and cognitive development and social-emotional as well as self help (potty training, feeding, sleeping, hygiene) development. We will be seeing someone from the Regional Center of the East Bay (RCEB) to determine what home based services Loki qualifies for, in order to support his development in those above mentioned domains of developme nt. It has been somewhat odd talking to them. RCEB is the agency I have worked with as an infant development specialist and as the manager for Baby Builders. We will get to know them from another angle. I know the wonderful staff there and am very excited that they will be the ones helping our little guy!

So far, we are pretty impressed with the strength Loki has exhibited throughout those first five months. He is determined, and I am sure we will see this when working on all the fun developmental tasks he gets to concur.

Sleeping on Opa Ruud's and Oma Anna's wooly:

I am a wizard, you are under my spell:


Too sleepy to lift my head up and see my pretty face:


Cuddling is also very nice with tante Marieke:


Want booby:

Monday, March 9, 2009

Loki's long lost relative discovered

Does Tante Marieke at one month look like anyone we all know?




Sunday, March 8, 2009

Eye exam; Tante and Oom arrive; Walk (photos!)

It has been a record length of time since our last blog post. The good news is that this means there is no truly bad news, as bad news travels fast. The only bad news is that it means that Loki keeps us very busy.

Tante (aunt) Marieke and Oom (uncle) Martin just arrived from the old country. Of course, they adore Loki. Who can resist his charm? He is most effective when he is asleep, which is most of the time. They brought some wonderful gifts, from themselves and others, which we are sorting through now.

Loki had an eye exam a couple days ago. And once again, the doctor found no signs of ROP. That's absolutely great news!

The weather has been great, and today we went for our first stroll as a family with child. I felt right at home: Our neighborhood has lots of young couples with children under four years old. On the weekends, the sidewalks can be like a stroller jam.

Cute outfit, from Christina and a second-hand sweater from Loki's preemie friend, with hip burp cloth by Luna and Christine:


On Mom:


Always happy to be on Dad:


Ready for the world:


I am thrilled. Just thrilled:


Snug like a bug:


Why we like strolls in in our neighborhood. What didn't appear in the photo is the view of San Francisco in the distance on the upper left:


Happy Tante:


Oom says "Hoi":

Thursday, March 5, 2009

photos

Too big for my purple binky: Sleepy mommy after a busy night:


Cuddling up:



Fat and Cheeks

First of all I want to say that dad has been amazing with Loki over the weekend. He was forced into a 24 hour care taking situation by my illness and he just jumped right in. Between throwing up and shivering, it was fun to overhear dad and the little guy have conversations together in the room next door. I was surprised how easy it was for me to let go and be grateful with a few hours of extra sleep. Then again, I felt so sick that half the day passed in a weird fog of misery about the nausea and gratitude for the space to lay down and close my eyes.

Loki saw his pediatrician Dr. Abbott yesterday, who is by the way a wonderful doctor, and he had gained the huge amount of 5 ounces in eight days. Now, that is not quite enough, as we should see a weight gain of approximately one ounce per day. But nevertheless, Dr. Abbott was very happy to see some increase. The NeoCate arrived yesterday, so we are hopeful that we will see more of fat on Loki's tiny body soon. For now I believe all the weight he has been able to put on went straight to his cheeks and his hands. His cheeks are ever growing and his hands, well.... they just seem really big to me. Like a puppy who still needs to grow into his feet. Now I think about it, this is what we thought about his feet when he was just born. His body seemed so tiny compared to his feet. When we look at his footprints now, it is hard to believe. They are so incredibly tiny.

Feeding continues to be quite challenging. We have to get a minimum of 8 feedings a day in, which with Loki's sleepiness at times is difficult. Every session takes between an hour and an hour and a half, so do your math. We start with 10 minutes of breastfeeding, and the remaining time is spent giving the bottle. We have a variety of nipples and depending on the day he does better with one or another. We never know before hand. Sometimes Loki does really well, he paces himself and is able to process the milk coming out. At other times he has a very hard time organizing his system. He chokes, coughs, milks dripping out of his mouth, arms flailing and little guy screaming while kicking his little legs vigorously. I have brought up the possibility of aspiration to the doctor but he thinks it is immaturity and time will help. Anywho, our little dude is becoming a little less little every day. That is a wonderful accomplishment for such a tiny guy who was not even able to drink from a bottle four weeks ago.

Yesterday Nurse Margaret visited again and this time she brought super, duper yummy hamburgers and sweet potato fries, wow! She spent some time with Loki talking about his eating habits. In return, he charmed her out of eating a full bottle by cuddling up and falling asleep with his booty sticking in the air. Who can resist that? Smart little baby he is indeed!

We are finding our way around our new lives with the three of us. It is wonderful being home again and spend time with dad, even though it is in between feedings, diapers and our own dinners. Just seeing each other wander around the house with sleepy eyes feels good.

Tuesday, March 3, 2009

Mom is better

By the late afternoon of Sunday, Mom was feeling much better and was able to help around the house, but still kept some distance from Loki. And today she was completely well. This all points to food poisoning. That's better, because I needed some relief.

We had another visit from the home health nurse today. I wasn't here; perhaps Mom can say more. But Loki has gained only 2 ounces (60 grams) in a week. He should be gaining 1 ounce per day. I am not surprised, as feeding remains a bit difficult. But the new calorie supplement should arrive tomorrow, and that should give him a boost.

Loki has developed a clear daily cycle. He is alert and eats well in the midday and afternoon. From 5 or 6 PM until 2 or 3 AM, Loki is very asleep. During this time, he is difficult to feed because he just falls asleep in our arms. From 3 AM until 9 or 10 AM, he is fussy with indigestion. He eats better than while sleeping, but still not great.

I have a great video to post, but it is not working on YouTube. It is fine on my computer, but once uploaded, the audio and video are completely out of synchronization. I had deleted the first 20 seconds or so, and once uploaded, the original audio appears to have returned, but not the original video.

Things are settling down here. While busy, there is less to report. We may not post everyday. We'll put up photos and videos when we can, and certainly keep you updated on developments.

Sunday, March 1, 2009

Not what we expected this weekend

Mom's symptoms expanded to include a moderate fever and body aches. She is feeling better this morning. I still think it was food poisoning.

It has been a busy 24+ hours. I learned that I can juggle caring for Loki and taking care of other things - cooking for me, cleaning, etc. And it has been fun, in a way. But it is very tiring. And Mom was able to get her first decent night's sleep. Today she is doing some house tasks, but still staying away from Loki.

The promised video has some technical problems. I hope to have it up soon.

Over at the right I will momentarily add links to friends' baby blogs. So far it is just Flo of Richard and Maaike (in Dutch) and Magnolia of Luna and Matt. If you have one yourself, let me know.

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.