Saturday, February 28, 2009

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...

Friday, February 27, 2009

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!!

Thursday, February 26, 2009

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.

Wednesday, February 25, 2009

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:

Tuesday, February 24, 2009

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.

Monday, February 23, 2009

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:

Sunday, February 22, 2009

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!

Saturday, February 21, 2009

Video: Loki with pacifier #3

Loki and his pacifier has always been a big hit. Here, I removed the audio, because Mom was on the telephone nearby discussing medical appointments. We must respect Loki's privacy!

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.

Friday, February 20, 2009

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.

Thursday, February 19, 2009

At home, Day 2

It is time for bed in the in the larger household, so I will keep this brief. Loki at home has been easy for me, but that is largely because so many other people want to care for him. First is Mom, of course. Then Nana, my mom. Next is Kyra, Mom's good friend from the Old Country, who has been around for a couple days. I come in fourth, I think. (Although I have not asked the opinions of my cats.) Personally, I am not in a huge hurry to change diapers in the middle of the night. I will have plenty of opportunity to do so later.

Things are not completely smooth. Two things are causing some worry. First, Loki has digestive problems. He has had a difficult time eating, often having a fit after just a few slurps. He has also not pooped that much, and has gained a bit more weight than expected. Overnight, he did not sleep well, and was remarkably gassy. Second, and perhaps related to that, is his hernia is large and appears painful. I wish it could be repaired now, but the doctors wish to wait a few weeks, and fix it as they remove the stent from his ureter. We called and spoke with a nurse, and she told us not to worry. We had an visit from a home health nurse today, whoe - like the telephone nurse - said that the digestive issues were likely due to the change in environment. Tomorrow our first visit to a pediatrician, and we should get some more clarity then.

There is a long series of thanks to be given. I hope to remember it all. For now, thanks to you all, blog readers, friends, family, friends of family, family of friends, etc.; with your comments and emails of supports, and your offers of help. In tough times, clicking the link to "9 comments" was surprisingly helpful.

Tuesday, February 17, 2009

Loki at home!

After 121 days, three hospitals, two surgeries, plenty of ups and downs, and innumerable tears, Loki is now home. Mom is giving him a bottle now, in the rocking chair. There is little that can said that has not already been said.

A word on visitors: Of course, we'd love to see you. But we need to pace ourselves. And we must be extremely cautious about germs. So please do not take offense if we say, "Not now," to a potential visit, or if we grill you about potential exposure to anything contagious. Please be honest about if you have had symptoms of illness, or been around sick people.

You can call us at home or cell. We have video chat capabilities on Google chat (name = jessreyn) and Skype (name = jess_reyn). However, we do not keep Skype running, so we'll need to arrange a time a head, or switch once we are on the phone.

We'll continue updates. For now, some photos....

Dad, baby, bottle:

Chillin' in the overnight room at the hospital


From the mural at the overnight room:


Also, mural:


Dad and dude relax in the overnight room:


Kyra meets the man:


Very excited for the trip!


Kyra made a stream of diapers with the letters "WELCOM THUIS" (Welcome home in Dutch):


The growing family: Nana, Mom, Loki, Abel cat, Izzy cat:


Happy mom:

The finish line is within sight

Wow, we are almost there. We should bring Loki home tomorrow morning. All he needs to do is to pass the car seat test, in which he sits in our car safety seat for one hour without any problems. This is because some babies are not able to sit somewhat upright without a blood oxygen desaturation. I am not worried about it.

Coincidentally, yesterday Loki only got food via breast feeding. This is quite a development, as Mom has been working on this for two months. However, there is no way to tell how much milk he got, and there is a good chance that he's not getting enough. It is more difficult to get food this way, and he gets tired. He's also lost a small amount of weight in recent days, probably due to the adjustment to breastfeeding.

This development had a big impact on our overnight last night in the hospital. Because he may not be getting enough food at each feeding, it was critical that he at least eat every three hours. Well, Loki decided that he would rather be a troublemaker than a baby, and preferred to sleep all night instead of feeding. Most "new" parents would be very happy if their baby had this preference. But we needed Loki to eat. So Mom tried to wake him for him to eat. First some talking, then some movement. But he would only slurp once or twice, and then doze off. She had to escalate up to tickling his feet, and then to placing a chilly wet wash cloth on his face. That certainly woke him up! As a result, between feeding Loki, waking Loki, some breast pumping, and just being nervous, Mom did not sleep at all last night.

My mother, or "nana," arrived today. She was extremely excited to see big boy Loki. She had previosuly visited right after his birth. But he was so very tiny then, and she was unable to touch him as he lay in his isolette. (That is like an imaginary different world to me now.) This time, she held him, and she and I have him a bath.

I forgot to mention that, a few days ago, Loki had an eye exam. His eye condition - ROP - was previosuly stage 3 (moderate) in both eyes. But the doctor reported that it decreased to stage 1 (mild) in one eye, and disappeared in the other! I hope this is accurate. In so many ways, he is ready to leave the hospital.

A couple photos are below. There are some better ones coming soon.

Tomorrow promises to be a big day in our family.

Happy family:


Loki says, "Oh, Hi Mom!"

Monday, February 16, 2009

Sleeping in the hospital

Here we are, for the first time, a family with its first child sleeping together. However, we are in a small hospital waiting room that is ours for the night. This is not exactly how I imagined our first night, at least not before Loki was born. Yet it is exciting to have Loki sleeping here between us, in a little bed, with no wires or tubes connected to him.

Yes, the situation is exciting, as many people have asked me if it is. But it also two other emotions. First, it is also intimidating. Of course, caring for any baby can be a bit scary. But being responsible for a baby who has had so many problems until now is intense.

Second, it is also a bit surreal. Just like when Loki was born so early, the situation feels somewhat not like reality. We have grown so accustomed to the lifestyle and rhythms of the NICU that I can't fully imagine otherwise.

It is going to be a rough night with little sleep - the first of many. I should sleep while I can. Little Loki is likely to wake up in an hour, wanting to be fed.

Kyra, Kathalijn's close friend from the Netherlands, and Erwin, her husband, were finally able to meet Loki. That wasquite a treat! We are glad to have them around now, and for Loki's homecoming.

Our room:

Other side:

Sunday, February 15, 2009

Three bits of good news

Mom called from the hospital with this news:

* Today, Loki got an ultrasound of his kidney and urinary tract. The main bad symptom - hydronephrosis, in which the kidney becomes full of liquid - is gone.

* Loki's ultrasound yesterday was actually for his brain, to do one last check of the bleeding he had very early on. There is no evidence of any further bleeding.

* Loki may have actually done a full breast feeding.

Marching on towards Tuesday...

Saturday, February 14, 2009

Thank You

In between feedings a quick note from the hospital.

I just wanted to say thank you to all of you once again. It is impossible to express in words how much we appreciate all the support, encouraging words, hugs, lovin, prayers and so on, we have received from all of you. Although I wish there was just one word that could describe the profound grattitude I feel, there really is not. I love to be able to show off our little guy to you who have not met him, and to you who have.

Thank You!!!!!!!!!!

Friday, February 13, 2009

An exit strategy (updated)

I got off the phone with Mom. She does not have reliable Internet access today, so I am passing along the update.

Loki might come home sooner than Tuesday. His final kidney ultrasound was done today, instead of Tuesday. If the results are good, then he can come home sooner. (We don't have the results yet... I'll update here when I know.) We still need to do an overnight at the hospital with Loki but without monitors (heart rate, blood oxygen, breathing rate), to ensure that we are able to care for him without medical help. And we need to go through a few classes (usually just watching videos) about how to care for a preemie at home. I need to run a few errands and clean our house very thoroughly. If all comes together just right, Loki could be bound for home Sunday evening. Update: Loki is back on the schedule to return Tuesday. There are just too many details to coordinate, and some of the hospital staff, including the discharge coordinator, are out until then, as Monday is a holiday.

I spent yesterday evening at the hospital. It was good to see Mom and little Lookje. (That is the Dutch way to make things sound smaller, like dog to doggy in English. It is pronounced LOKE-yuh.) I fed him by bottle, which was the first time I had ever done that with any baby. His penrose drain, scheduled to be removed Monday, had been wiggling out. It came completely out last night. That's not a problem.

Isn't that middle photo in the post below quite cute?

Thursday, February 12, 2009

Photos from UCSF

Sleeping with my friends... Well, maybe peeking at the camera:

Without any tubes in my face. How cute!:


See the milk on my chin?

Milk, milk, milk.... and scream

Loki can scream and cry really, really loud. He prefers to do this when he is hungry. It has been a little bit of a struggle figuring out how much he eats when taking the breast, and how much he needs. Everybody is impressed with his suck, but he obviously is very hungry, even after sucking for a good 20 minutes. I am working with a wonderful lactation consultant here, and although she is a little puzzled about the fact he is not getting as much as we think, she is confident that he will learn. We are starting the SNS (supplemental nursing system) today. A little tube will be connected to the breast and milk will be poured into a syringe or bottle connected to this. This way, Loki will be able to drink while on the breast and still get some nutrition. He has lost weight over the past two days, so we can not just sit and weight until he gets this breast practice down. In addition, he will come home with some fortified milk anyway. Although I initially was frustrated he did not get the hang of breastfeeding as much as I would have liked, I am pretty confident he will get it eventually. Also, he gets so excited just to get food, that it is very cute to see. And being able to feed him, whatever way it is, just feels great. Loki is hungry a lot, cries really loud, and gulps on whatever he gets in his mouth in an attempt to get food out. Therefore, the doctors think he is ready to go to as needed feedings. Another step in the right direction.

Loki's blood work looks good and so does his urine output. Although the plan is to take the penrose drain out before he goes home, it may stay in if there is still more drainage than they like (how much exactly that is I do not know). Overall he is having some nice pee drained diapers exactly where it is supposed to be! Today Loki will have another eye exam to check the status of his ROP, so fingers crossed for that one. On Friday he will have another head ultrasound to have a final look at his germinal matrix bleed. No surprises are really expected in that department. Finally, he will have a renal ultrasound on Tuesday morning, and if this looks good to the doctors, he will indeed come home that day!!!! A little scared to be too excited, but very hopeful, and incredibly scared, that next week will be our lucky week.......

Wednesday, February 11, 2009

Wednesday news from SF

I just got a report from Mom in San Francisco. Loki is now getting all his food by mouth, either bottle or breast, and his feeding tube is out. Also, his IV and urinary catheter have been removed as well. The penrose drain from his surgical wound will be taken out on Monday. Loki weighs 3240 grams (7 pounds + 2 ounces), which is about what he was a week ago.

If this path continues, his doctor believes that he will come home early next week. He will stay at UCSF until then.

Myself, I will probably still wait to visit the little man, as my minor cold simply will not go away.

Tuesday, February 10, 2009

UCSF, milk, and the light at the end of the tunnel

Just a few quick details:

The doctors and staff at UCSF will do what they can to help Loki stay there during the remainder of his hospitalization.

As you know, Mom has been struggling to get Loki to breast feed. In the last couple days, Loki was offered a bottle, and he did very well. In fact, he took his entire 60 mL feeding this way, with just an occasional desat. This is a mixed blessing. One requirement for him to come home is that he must get all his food by bottle and/or breast. Furthermore, he may get better at breast feeding by practicing on the bottle. On the other hand, the opposite could be true. The bottle is easier, and he may develop "bottle preference," causing him to be unable or reluctant to breast feed.

There was loose talk at the hospital that, if all goes right, Loki could come home next week. I can't imagine what that will be like.

Monday update: Still moving in the right direction

I just got a call from Mom with an update on Loki's condition. He is doing OK, but not great. He is off the nasal cannula oxygen support, and is receiving half of his breast milk feedings (30 mL / 3 hours); he had not had milk since Thursday morning. His urine output went down, and then up, and is back where is should be. (Perhaps his kidney is still relearning how to function?) He poops, too, which is good news and lots of fun. Mom said that Loki was somewhat jittery today. (Jitters are small uncontrolled body movements - like a nervous person.) This may have been related to low blood sugar, as his behavior improved after getting milk.

Mom was able to hold him quite a lot today, which is surely nice for both of them. Loki will be visited by an occupational therapist to try to improve his breast feeding.

The hospital plans on transferring him back to Children's Hospital Oakland, but I will try to intervene and keep him at UCSF.

Myself, I still have very minor cold symptoms and remain in Berkeley and Oakland, and going to work. I may go to see Mom and Loki at UCSF tomorrow evening.

Monday, February 9, 2009

Alert and Calm

Here a note from Mom. Here at UC we are allowed to have our laptops next to the bed and check the Internet. Although I mainly want to sit with our little guy and hold his little hand, I will take a short break and put up a little note.

Loki is doing much better today than yesterday and that is such a relief. There are no major differences with his medical situation from Dad's last post, but he just seems to feel much better. He just spent an hour awake, looking around, checking out his new home. He was very calm without being lethargic, and awake without being agitated. That is a good combo. He has not had his 2:00 PM dose of morphine, and since it is 6:30 this means he is starting to cure from his surgery.

I feel so much better now that I am able to be with Loki. I cannot hold him, and even changing a diaper is a little bit more tricky again with urine coming out of a variety of openings. But just holding his little hands, stroking his head and his little toes and talking or singing to him, feels wonderful.

Our experience here at UC has been very good thus far. The atmosphere is less urgent and hectic than CHO, and although this may sound silly, the lighting is much more cozy, which really makes a difference in the ambiance. Of course you all know we are hanging out at the Hospital for the ambiance :-) In addition, nurses work 12 hour shifts, so Loki only sees 2 nurses a day instead of 3. The nurses are absolutely excellent and somehow very quickly figure out how our little guy does his things. None of his rare tubes and openings are rare to them. I am impressed, to say the least. Tomorrow I will be able to touch base with the social worker here and see if we can prevent this last transfer and prepare Loki to come home from UC. It depends on the insurance of course, but transfers are very expensive, so you would think they may be happier. We will miss some of our great nurses at CHO, but one less change, and a calmer hospital would be great . Also, having the urologists here 24/7 simply feels more comfortable.

I think Loki knows all of you are thinking about him and sending him prayers and love. We certainly feel all the support and we are incredibly grateful for this.

Sunday, February 8, 2009

Automatisch vertalen naar nederlands!

Nu is er een weblink op de rechts om automatisch deze webpage naar nederlands te vertalen. Het is niet perfect, maar kan met moelijk woorden helpen.

In the right direction (updated) + Video: Loki's bear

I just got a short telephone call from the chief urologist. He said that "everything is going in the right direction," and that if this continues for 24 hours or so, then we will be "out of the woods." (In case that doesn't work for the Nederlanders, that means to be clear of all problems.) I also had a quick conversation with Mom, who was walking to the hospital. She said that more urine is coming out the right places and less from the wrong places. I never thought that I would be so excited about pee.

Update: I got some details from Mom. Loki's temperature is good, but his blood pressure remains high, for which he is getting a drug. His urine output is actually too great now, and thus his blood potassium is a bit low. There are still no indications of an infection from his blood cultures. The color is his skin is better. He is still on the nasal cannula at 2 L/min but at 21% oxygen (normal room air). Loki gets morphine if he hows signs of pain. He still may get transferred to Children's in Oakland, but Mom will try to keep him at UCSF.

Here is a short video from Friday, after the surgery but before the craziness. In it, Loki relaxes to his favorite song of his musical bear. Well, I am not sure what he thinks of it, but Mom is convinced that it is his favorite. Actually, my main purpose of putting this video up is to offer the bear's song, as Loki himself does not really do anything in the video. But he is still cute, of course.

Saturday evening news: Still moving in the right direction

There has been no major developments from Loki at UCSF, but some small bits of news. He has a slight fever. His urine output continues. His creatinine - which is a waste product cleaned from the blood by the kidney - is down, indicating that the kidney has probably resumed some function. The air in his nasal cannula is down to 25% oxygen. He has been receiving antibiotics, just in case of an infection, although the results from blood culture are not in yet.

The ultrasound did not reveal much, but the nephrologist prefers to emphasize the clinical information (what he or she sees and measures at the bedside) instead of imaging.

As an "armchair doctor," I believe that two things happened: (1) Loki's kidney went into shock about 24 hours after the surgery, and is now returning to normal function; and (2) he has an infection.

Saturday, February 7, 2009

Saturday afternoon news: A whiff of optimism

At home, I just got a call and an update from Mom. While there are still no conclusions or diagnoses, there is reason to be a bit more hopeful. Most importantly, little Loki is producing some little Loki urine. In fact, it is near a normal amount. His blood pressure remains high, though. Results should be available soon for his blood electrolytes (i.e. potassium and sodium) and ultrasound, and available later for a blood culture to test for an infection. An arterial line is being put installed. This is a more permanent IV that allows frequent blood sampling without new pokes.

No one knows exactly what is wrong. The two main groups of specialists - nephrologists (kidney doctors) and urologists (urinary tract doctors) - are sort of pointing to each others' system as the cause. There is now less reason to believe that the kidney is not functioning, and more reason to believe that Loki's body is in a type of shock from the surgery. (I hope that is the case.) However, Mom was warned that, if Loki is having a shock reaction, his condition could get worse before it gets better. In fact, he may end up on the ventilator and breathing tube again, briefly. He could also have an infection, which would not be good, but is easier to treat than kidney failure like ATN.

Mom is sitting at his bedside, talking and consoling him. All the nurses and other staff say that his appearance has greatly improved since she arrived, and I am not surprised. When I dropped her off, I went with her to Loki's bed, and he clearly responded to her voice, trying to find her with his big blue eyes. With his vision poorly developed, I believe that sound is his main sense, and that hearing Mom's voice again after a few days without it must be encouraging.

Myself, I went the doctor, and she said that I am not, nor have I been, very contagious. I probably have a mild virus that is irritating my vocal cords. Barring any sudden developments, I plan to stay at home today.

Saturday morning news

Mom has been regularly speaking with the nurses and doctors at UCSF. (I find it amazing that the chief of pediatric urology was there both last night at midnight and this morning at 6. I don't think these are his regular hours!)

Loki is stable. His potassium and sodium in his blood are not too far out of the normal range. He is producing some urine but it is only coming out through his Penrose drain. Some urine coming out this way is not very strange after a surgery. The problems are that none is coming out via the normal route, and what is coming out via the drain is too dilute. As Mom mentioned, he is on the nasal cannula for oxygen support, at 30% oxygen and 2 liters per minute. This need could be unrelated to his current kidney problem, and instead just be due to exhaustion.

The urologists still suspect ATN as the problem. The good thing about that, accoding to my Internet reading, is that if the cause of the ATN can be removed, then the tubules repair and regrow fairly quickly. After surgery, the cause could just be the shock, so there is chance this could resolve itself. Another possibility is that Loki could be temporarily placed on kidney dialysis, in order to give his kidneys a chance to heal. Thus, for now, nothing is being done besides very close monitoring of out little man. The urologist was "cautiously optimistic."

In a reversal, my minor cold symptoms have returned, and Mom's have left. I am going to drive her to UCSF but return home. She has a place to stay nearby. If needed, you can reach either of us by our mobile phones. I, however, have lost my voice.

No infection

The blood work came back and there is no indication of an infection at this point in time.
Overnight his Penrose drain needed to be drained/replaced (not sure how it works) many times. We are hoping that this is indeed urine coming out. Nevertheless, it is not enough for a healthy dosage of urine and none is coming out via the catheter. Although there is no clear plan yet, the nurse suspects Loki will need another surgery today to figure out what is causing this weird situation.

I called approximately every hour to check in and feel incredibly grateful and happy with the nurse who answered all my questions to the best of her knowledge. She clearly has been very dedicated to making Loki feel as good as possible and figuring out what is going on. Although I find it terribly difficult to be in this situation, I am very happy we are at UCSF at this point in time. The urology team is there readily available, and the nurses are very familiar with the types of drains and tubes Loki has (had). This makes quick action a little easier it seems.

Updates

Although the nurse suspects that the kidney makes some urine, none of it is coming out the right route. However, she cannot guarantee that the fluids leaking out of the pen rose drain (it is not the wound) is indeed urine. They stopped giving him potassium in his IV fluids and his level has gone down from 6.5 to 6.3, they like this number to be between 4 and 5. His sodium is back to normal, but his creatinine is too high. This does indicate that the kidney is not functioning normally.

He was put back on 2 liter nasal cannula 30% oxygen because he started to have significant blood oxygen desaturations (desats). His nose and chest are clear, so they do not expect that this is a cold. In and of itself the kidney issue should not cause desatting. They are checking for infections, which is usually starting to show by desats. I guess he could also just be tired from the whole ordeal, although they do not seem to assume that.

At this point in time our worries are beyond imaginable, and we feel we have been catapulted back in time 2.5 months or so. I (Mom) started feeling significantly better and better throughout the day, where I now do not really need to blow my nose anymore. This means I can go in tomorrow with Dad, if he indeed is still feeling well. At this point in time it feels like hell not being around our little guy. Sleep is almost impossible and the little sleep I get is filled with nightmares. Our bags are more or less packed so we will probably leave pretty early in the morning. Sorry to all family members if we are not reachable by phone. We will keep you updated as soon as possible after we find out more.

Please send all your prayers and positive thoughts to Loki, he really, really needs it!

Something is not right in Loki Land

Upon arriving at home in Berkeley, Mom informed that Loki's condition is worrisome. His blood pressure is up, and his urine output is down. The electrolytes in his blood are somewhat off, in a similar manner as they were a couple weeks ago, when his kidney became blocked. Too much fluid appears to be coming out from his wound. Loki has received a kidney and bladder ultrasound, and we are waiting for the results.

Mom and I are obviously hoping for a quick and easy resolution. We are packing a bag in case we need to go into San Francisco.

Update (10:40 PM): The ultrasound was not particularly conclusive. The urologists do not believe the situation is urgent enough to require action overnight, and more information may become evident in the meantime. Once again, the kidney is producing urine, but it is unclear if enough, or if any, is getting out. Some urine may be leaking though the small holes in the kidney, like where the nephrostomy tube was, and then out through the wound. One possibility is that the surgery was a shock to Loki's system, causing ischemic acute tubular necrosis (ATN). This is a death of the cells that act as tubes and drain and collect urine inside the kidney, sending the urine on to the ureter.

Meanwhile, here is a photo of Loki recovering. Wow, his arms have become a bit chubby.

Friday, February 6, 2009

Recovery - Day One

Loki is recovering reasonably well today. He has produced a normal amount of urine. He has not yet pooped but his bowel sounds are good. (Funny: I have never described bowels as sounding "good," but there is a first time for everything!) Loki gets Tylenol regularly and morphine as needed for pain. This keeps him a little bit "out of it," and he is sleeping a lot. He will get some real food today, starting at about 1/3 the normal amount. His Foley catheter (see the updated post from yesterday) will be removed today.

I will spend most of today with him, and probably sleep at home tonight.

Surgery seems successful (updated)

(A couple details were updated on Friday morning)

Loki is out of surgery, and everything appears to have gone well. He is recovering now.

As expected, the top inch (2.5 cm) or so of Loki's ureter was in poor condition, somewhat like a wilted plant. This was cut out, and there was plenty of extra length to pull the remainder up and attach it to the kidney. A stent - a plastic tube inside his flesh tube - was placed in the ureter to keep it in place. Loki's nephrostomy tube, the one installed during his surgery a couple weeks ago, was removed. A Penrose drain was placed near the bottom of his kidney, on its outside, in order to collect any stray fluid or urine that leaks from all the places that his kidney has been poked. Added Friday morning: Finally, a Foley catheter was placed in his penis (yes, ouch) into his bladder to ensure that urine flows out and does not back up and reflux up the ureter and into his kidney.

He was extubated (breathing tube removed) while still unconscious. The surgeons did not work on his hernia, because they did not want to interfere with the delicate work they had just done, and because Loki will have to go under general anesthesia again.

I rode up the elevator with Loki and into his new room. He was waking up, but not quite aware. I turned on his favorite song (or at least the one that Mom says is his favorite!) on his musical bear, and placed that in his bed.

All of the several doctors and surgeons involved in the surgery took plenty of time to talk with me. I am very appreciative of that. The lead surgeon (Laurence Baskin, Chief of Pediatric Urology) gave me his card and said to email any time.

The timeline in the future:

  • Loki will gradually wake up, and continue to get some pain medication. He won't be fed for perhaps another 24 hours. He will be monitored for the usual stuff: breathing, temperature, urine, poop, etc.

  • (Added Friday morning) His Foley catheter should be removed tomorrow (Friday) or Saturday.

  • His Penrose drain will be removed soon after, in perhaps a week or less. It is removed through a very minor surgery, using local anesthetic and stitches.

  • Perhaps on Monday, Loki will be transferred back to Children's Hospital Oakland. He can't go to Alta Bates then, because there is not a pediatric urologist there.

  • After another week or ten days, he may get transferred from CHO to Alta Bates.

  • It sounded like he could go home within two weeks, if all goes well.

  • In about a month total, the stent will be removed. This will require general anesthesia. His hernia will be fixed then.
Loki is so out of it:


Waking up a bit:


While I am posting photos, here is one more. Loki's new room has a view to the north. Not bad, eh? (Like all photos, you can click to enlarge it):



So far, surgery going well

Just got a call from Dad. Loki is still in surgery but so far so good. The hospital gave a quick call to tell Dad that Loki would be in the operating room for another 1.5 hours. No other details yet.

I am at home, just trying to get this cold out of my system so I can cuddle and hold our little boy ASAP!

Thursday, February 5, 2009

Surgery has begun!

Surgery is now beginning. I was able to see Loki a bit before. He is so tough, and beautiful, and amazing. But he was not happy about not having any food since 4 AM.

The surgeons will try to repair his hernia, if possible, while he is unconscious. And they also hope to be able to remove his breathing tube before he wakes up. That would be great, because that is a very unpleasant experience. Surgery may last up to four hours.

While waiting, I did a little research. UCSF is ranked by a leading American news magazine as the 10th best in the nation in neonatal care, and 7th in the nation in urology. Only one ranks higher (in each category) in the western 2/3 of the US. One thing I do not worry about here is the skill of the faculty and quality of equipment.

An unfortunate development

I had very mild symptoms of a cold from Sunday evening to Tuesday morning. Yesterday I felt OK, and was with Loki. Overnight, the mild symptoms returned. We spoke with Loki's nurse by phone this morning, and she was very clear that the policy is "cold or flu symptoms = no NICU," and is not flexible. Thus, neither Mom nor I will see Loki today, the day of his surgery.

Part of me felt that I should have made the decision on my own. After all, my symptoms are mild, and a person is contagious only early during a cold. But we must respect the policy; and the risk to Loki may be unlikely but the consequences would be great; and other babies could be put at risk as well. What if, for example, I now have a new, different cold, and am contagious again?

Needless to say, this is absolutely heart-wrenching. To imagine that Loki will not have seen his mom for at least three days, and me only one of those days, and then has surgery. But I don't see any other options here.

Update (10:30 AM): The surgery should begin between 1 to 3 PM. It should last "up to a few hours." I spoke with both Loki's nurse and a resident urologist who saw him, and they both said that Loki looks very content, napping and listening to Mom's recorded voice. She reads stories and sings songs in both English and Dutch. My favorite is On the Day You Were Born.

Dad and Loki at UCSF

I made it to UCSF by 2 PM. Loki seemed a bit fussy, but was better once he was flipped onto his tummy. (Update: Loki is 3195 grams. That is seven pounds!!! On his due date!)

In general, the hospital staff seems both very welcoming and considerate. Loki is in a room with just four other babies. The lights are kept dim, and it is fairly quiet. The big windows let in a lot of light and have a great view (see below). The nurses are kind. A few doctors and other staff members have dropped by to talk with me and check on Loki. Soon, one of more of the actual urologist surgeons will find me and talk. Then, I'll ask some questions.

The surgery will be second for this team tomorrow, and thus should occur after lunch.

Mom remains very sad that she can't be here. But she recorded about 30 minutes of her voice, reading books etc. I will soon play that for the little man.

I plan on spending this evening at the house of Christine, who is tied with one other as being my longest-standing friend. (We met over 18 years ago?!?!?) She lives just a few blocks away, so it will be easy. And I very much like San Francisco, and we are near the upper Haight neighborhood and Golden Gate Park.

Loki rests in his latest home:


Loki's bed, with his friends Hoosier Monkey, Sucky Ducky, Musical Bear, and Snowboard Ducky:


The room. That's nurse Michelle with him:


The view, which is to the northwest, of the ocean (a bit in the fog/haze), Golden Gate Park, the Presidio (a former military base that is now a park), and the headlands of Marin Country across the water. The Golden Gate Bridge is just off to the right, but can't quite be seen.

Wednesday, February 4, 2009

At UCSF

Loki is now at UCSF Medical Center. I visited with him this morning at Children's Hospital Oakland, and saw him off. The nurse there, and the transport nurse from UCSF, were both very kind. I got a phone call that he slept the whole way over, with his musical bear playing and his ducky pacifier.

I am off to San Francisco now by bike and BART (metro subway). Mom will drive over when she can. Surgery is planned for tomorrow.

I'll post more when I know more, and have internet access.

And wow... what kind nurses from Alta Bates to go to a NICU - like going to their job! - so that they can keep Loki company. Wat lief!

Fingers crossed, prayers said, candles lit....

Priceless Photos on Loki's Due Date

With many, many, many thanks to Janet for taking all these beautiful pictures. It provides some comfort to see Loki is looking well, and ever so handsome!

What??? Mom and Dad are not coming in to see me?


But Janet is! As long as someone is here to cuddle:


Janet is funny:


I am getting tired:


Visiting hours not yet over, right?:


I'll cuddle with Janet and my bear now:

Angels for Loki

It has been a very hard day, and I suspect it will not be much easier for the upcoming days either. I have been missing Loki so very much. Knowing that I most likely cannot see him before his surgery, unless my cold disappears asap, is rather challenging. Dad seems to be feeling just fine, and will go to the hospital tomorrow around the time Loki is tranferred. Unfortunately he needs to work at least during the initial hours of the day.

Despite feeling somewhat miserable, both physically and mentally, I am so very grateful for the support we once again receive from all of you.

We will most likely transfer ourselves to SF tomorrow with clothes, pumping gear, baby blankets, clothes and such, so we can spend a few nights possibly on the other side of the bay, where one of Loki's guardian angels has offered us a bedroom. In addition, Loki had two angels visit from Alta Bates today. Amber and Janet spent time cuddling and talking to Loki. They came at separate times, so Loki had very familiar faces and voices for at least a few hours during the day. When Janet was there she held the phone close to his face so I could talk to him, and apparently he started looking around when he heard my voice.

I don't think I can even find the right words to express how amazing it is to see Loki's nurses offer support far above and beyond....... anything really!! Thank you would never do!!!

Loki's ROP is stable at stage 3. He will need another eye exam next week sometime, but the doctor was very happy to see it stable. This may very well mean it will eventually resolve. Let's hope!

Tuesday, February 3, 2009

Mom has a cold?

Now I seem to have a mild cold, which is more or less devastating. If Dad does not feel better, neither one of us can see Loki. I am praying that this will be just a few days thing so I can see Loki before and after his surgery. I keep thinking about how he must feel not having his Mom and possibly Dad around, just strangers at this very scary and crucial moment. I will see my own doctor later this morning and will just try to sleep, sleep, sleep to get it out of my system. Hard to believe I got a cold at this point in time.... Also, need to figure out a way to talk to the doctors taking care of him, and make sure the musical bear stays close to his side. OMG!

Dad did seem to feel much better yesterday, so hopefully he will be able to cuddle with Loki very, very soon.

And then of course the most important thing of all, Loki has to stay healthy despite the germs he has been exposed to from both his Mom and Dad!

Update from Dad (1 PM): Mom and I seem to have different colds or flus. Mine is very mild, and I suspect that I will visit Loki tomorrow and accompany him to UCSF (if that actually happens).

Monday, February 2, 2009

or maybe Thursday?

Loki's surgery is now "confirmed" for Thursday at UCSF, with transport to San Francisco on Wednesday. After four or five days of recovery, he will (supposedly) return to Children's Hospital Oakland. I remain skeptical, though, of the schedule.

I have developed very minor flu symptoms, so I must stay away for a bit. That's very sad! But we must be very careful.

...... and bigger

Loki weighed in at 2960 grams yesterday. He had a bath and his hair looked like ducky fur, very cute. He was too lazy to breastfeed and just not hungry enough to really care about the yummie milk right in front of him. We will keep on trying.......

Today we should get our confirmation about when the surgery will take place. Indeed on Monday the 9th or possibly this Wednesday. In addition, he will have his eye exam sometime this week again. Fingers crossed he does not need any laser surgery to repair his ROP!

Finally, we are still very, very grateful for all your support in the shape of food, visits, calls, comments, cards and gifts etc.

Sunday, February 1, 2009

Growing bigger

Not much news from yesterday, and that is a good thing.

Loki weighs 2920 grams and looks like a normal size baby by now. When I was cleaning some of his old clothes, I could not even believe they ever looked big on him. The preemie clothes are so tiny, yet they looked so big when we put them on him first. I remember so well that Annette told me to bring in some clothes early December, so we could dress him like a big boy. These days he is a big boy!! If I would be as crafty as dad I would now add the link to the photos of this first dress up session, but I am not. [Update: Here is the link.]

Breastfeeding did not go so well today, because Loki was sound asleep two out of three times. Basically he does okay when he is awake, taking approximately 8-12 ml's in 45 minutes. Not much, but something. Nevertheless, I do find the process cozy. He loves snuggling up close, and looking around with his little round eyes, while sucking vigorously. Sometimes he swallows, and usually he breathes. Although the latter two are not consistently Incorporated yet, which causes some bradies here and there. Less and less so though!

We now seem to have two primaries during the evenings. On the one hand this is great, because they are both wonderful nurses. On the other hand we missed Libby yesterday. We asked Jeane, the primary that worked yesterday, in our very first week at CHO. She already primaried a baby, and worked with Loki whenever they were paired. After a few days this baby moved to another room, and so did Jeane. We did not see her until after I asked Libby. Now her primary was discharged, and she is taking care of our Little handsome guy. Wonderful and also "oops." It is frustrating for nurses to commit to a primary, and then not get them because of another primary nurse. I know that from Alta Bates and tried to prevent that this time! Anyway, they are both wonderful and are starting to get the hang of who Loki is.

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.

Blog Archive