Sick Mom!

Mom was looking forward to today. Being Saturday, I do not go to work. She asked if I could care for Loki so that she could sleep late, and then run some errands. The first "task" was achieved, but when she awoke, she was extremely nauseous, and proceeded to throw up a lot. Although it could be a stomach flu, we suspect - and hope - food poisoning. Her only symptoms are in the stomach, and last night she ate three-day-old leftover chicken and pork from a somewhat cheap Chinese restaurant.

So I am in charge of Loki today, which is not so tough - at least so far. I haven't spent as much time with him as I should. And I enjoy observing his little developments. He now really looks at specific things, like faces, balloons, a mirror, and toys hanging in front of him. Loki also is beginning to pull things toward him, and push things away, with his hands. Plus, I am learning how to "read" a baby like him.

But this is a full-time job. We feed Loki and change his diaper about every 2 1/2 hours, and the process takes over an hour. He needs attention often. And Mom pumps. Pumping and feeding gear need washed and sterilized. Finally, there is all the non-baby tasks.

I did have to ask for help, and fortunately Mascha was able to go to the grocery store and the veterinarian for us. (One of the cats has worms. Gross! And terrible timing!) Thanks!

We have a new supplement formula - NeoCate - arriving on Tuesday.

Videos and photos on the way...

Grumpiness and Dutch Baby Shower

Our little guy has officially entered the territory of fussy baby (diagnoses as such by his doctor, honestly). This is not his fault, let me be clear about that. He has a very hard time processing his feedings. As dad explained, this may be caused by the NeoSure he receives mixed in with the breast milk. However, he also may just be showing signs of what one calls a colicky baby. We are hoping for the first as the latter could mean many weeks or months of cramping, crying and sleepless nights. We will start a new fortifier ordered by the doctor, just in case NeoSure is the big monster in this case. Unfortunately Loki does need the extra calories as he is unable to gain weight just on the breast milk. This is not uncommon and I am sure soon enough most of his feeds will be straight from the breast. The good news, since yesterday I have been able to feed Loki more often and catch his alert moments, during which he usually gratefully gulps down a few mls of milk. I hope and expect his weight to go up pretty soon.

That said, it is beyond wonderful and amazing having Loki home after all these months in the hospital. He is as adorable as ever and in between cries and cramps he looks around with his clear big eyes, checking out his new environment, cracking a smile here and there.

I don't get anything done, other than hold, feed, change and comfort Loki, so apologies for all the unanswered emails and phone calls. I'm positive one day I will face the world around me again, say hi and be grateful you are all still there.

I have not yet extended our gratitude with regards to the Dutch Baby Shower, which was held before Kyra and Erwin came to visit. Kyra organized the gathering for several friends and family members in celebration of Loki Sky. She filmed the event, as well as messages from many more of our Dutchies. It was so wonderful seeing people leave their sweet messages for Loki and us on camera, and the gifts delivered for our little guy were very, very sweet as well. We received books, a rock of support, old sleep sack in which both my sister and I slept, many, many clothes among others a handmade outfit from Oma Edith (Muus and Lova's Oma) and handmade booties from Oma Greet (a special Oma from Amersfoort), as well as a description of how to massage our little guy. And ooooh does he love massages (just like his mommy I guess). Thank you all so much!!

Sorry...

I apologize for the lack of post yesterday. I am encouraging Mom to write., but she hasn't had the time. There is little to report at the moment, except that we resumed the NeoSure at half its previous concentration, and Loki's cramps and complaining resumed. We need an alternative supplement.

Doctors + Photos: Loki settles into home life

Today was a busy day. Once again, we visited two doctors in one day. In the morning, we went to Loki's regular pediatrician. He believes that the problems with digestion, lack of poop, and crankiness are a combination of not getting enough food and a fussy baby. The food presents a "chicken or the egg" question. Loki needs the food the get energy, and he needs more energy to be able able to eat without falling asleep. How do we break the cycle? We'll try returning to the NeoSure calorie supplement tomorrow, but in a smaller amount.

In the afternoon, we went to UCSF for an ultrasound and a visit with the urologist. He was very happy with the appearance of Loki's kidney and ureter! That is the best news. We are all hoping that Loki's two upcoming surgeries - the removal of the stent in his ureter and the repair of his hernia - can be done at the same time.

A wonderful gift balloon from Mascha:


Loki's aware time is the afternoon:


Bath time:


Yo! What up?


Loki can hold Sucky Ducky:


Nana:

Video: Loki sees stuff

In recent days, Loki has been developing in many positive ways. For example, he is getting good at holding his head up, and turning it. When he is awake and aware, he now likes to look at things. In the video below, a mostly-awake and aware Loki examines the toys in his rocking chair.

In the past few days, I have tried to recall and thank those who made Loki's homecoming possible. The last, and greatest, praise goes to Loki himself. He is a brave little trooper. While Mom and I are going through a lot of stress, he certainly goes through much more. For me, it is all worth it when I see his healthier face and brighter eyes each day. This post, this day, this blog, and so much more are dedicated to him.

A visit from Loki's friends from Alta Bates

Today's highlight was a pair of visits from, coincidentally simultaneous, two of Loki's most frequent Alta Bates primary nurses: Margaret and Amber. Both were very happy to see the little man. Of course, they offered their advice about ways to handle Loki's problems with eating, digesting, etc.

These problems continue, and currently we are most concerned about a lack of poop. However, with some effort, we are able to increase his food intake a bit, but not as high as it should. Most likely, Mom will take Loki to the doctor again tomorrow.

Tonight's gratitude goes to Loki's Mom. If there was a gold medal for Super Mom, she should be first in line. She was intent on becoming a mother, and then was intent on being a good mother for her new son, Loki. She has been remarkably successful. And if anyone had any doubt, her many hours by Loki's side, plus the frequent breast pumping, both every day, both for months, would clarify the situation. Not only is she a wonderfully compassionate and sympathetic person, but one cannot overlook her years of training and experience in child development, particularly those with problems such as prematurity. It is as if Fate, God, the stars, or whatever higher power has brought her and Loki together. As the other member of this triangular family, I can only remain tremendously and eternally grateful for what she brings to the situation, and what she has done.

Amber and her guy:


Amber and Margaret have a friendly fight about who holds him next:

Somewhat smoother today

This morning, Mom took Loki to the pediatrician for a quick visit. The doctor recommended completely breast feeding, every hour to hour-and-a-half. That's a lot of work, so we are still using some bottles, but without NeoSure supplement.

Today and last night, Loki was somewhat less fussy and crampy. This is partly due to his altered diet, and partly a result of the different antibiotics, which are also given at a different time. But we are also better learning his body's rhythms and reactions.

However, he still has a lot of reflux, in which some of his food comes back up while eating. So, feeding is a slow process, with lots of breaks.

This is not all simply getting to know a new baby. Much of this behavior is a result of his prematurity. In general, preemies have difficulty regulating themselves. For example, a preemie is more likely to sleep through his time of hunger instead of waking up. And they have a harder time eating, which involves the coordination of suck, swallow, breathe.

Tonight I wish to thank all of our local friends who have helped us with the details and logistics of the recent crazy months. We are grateful that people here have been making us food, helping with our responsibilities, and giving us useful gifts, including lots of our baby supplies. Big kudos to you all!

Photos: Many pictures from the first days at home

Alert in arms:


Alert on shoulder:


What's that?


This is really a yawn, but it makes a funny photo:


5:00 AM in our house:


The burrito wrap:


A profile of sleep:

Troublemaking, again

Loki was again awake and cranky from 2 AM onward, only this time for a longer period. We believe that it may be due to his antibiotics (mentioned yesterday) and the large amount of supplement in his milk (27 calories from NeoSure per fluid ounce of milk). We obtained a different antibiotic, and will give it in the morning instead. We are removing the NeoSure for the overnight feedings, and may resume them at a lower level.

But Loki is also not eating enough: perhaps only half of what he should. Again, this may be related to his digestive problems and to the NeoSure supplement in the milk.

Looking at my previous two posts, perhaps I gave the impression that this is easier than it is. Sure, it is not too tough for me, but that's because my mom is here, and because Loki's mom is doing more caring for him overnight (for various reasons). But not only is she taking most care of him, she is still on the pump. Loki is being fed by bottle, because we can add the supplement and measure how much he gets. All this adds to a lot of work and not much sleep for her.

Tonight's thanks go to the nurses, doctors, and staff of Alta Bates Medical Center, Children's Hospital Oakland, and UCSF Children's Hospital. Wow... "thanks" is not nearly enough. The combination of expertise, technology, and the "human touch" is remarkable. We wouldn't be sane, and Loki wouldn't be as healthy, without them. We will never forget.

Two doctors, one day

During Loki's second full day at home, Mom and I took him to two doctors. First was his pediatrician, a general doctor for children. It was mostly a conversation for the doctor - who was very friendly and engaged - to get to know our situation. He reinforced what I already knew: That Loki is doing remarkably well, considering that he started so early and so small. There are plenty of things to worry about, of course, and the road ahead remains difficult and unclear. But I am grateful for how far he has come.

The second was an eye doctor. This examination is one of the most unpleasant for Loki, and I could tolerate being in the room during it. But the doctor said that he "didn't really see anything" in terms of ROP. He was in a hurry, and I am not sure what this means in terms of official stages of ROP. Regardless, this is quite encouraging.

At home, we continue to get to know Loki. His digestive problems yesterday seem to be partly due to a new environment, partly due to the antibiotics which he takes, and partly normal. We are also learning Loki's rhythms. He sleeps well in the early night, but after 2 AM or so, he is restless.

We've been too busy to take photos and video. We'll try to do so tomorrow.

Today I wish to thank my employers and coworkers. Without their flexibility, my adventure with fatherhood and Loki would be much more difficult.