Thursday, April 30, 2009

Update

Just a few notes on the previous post and our Doctor's visits of today.

Loki indeed lost another ounce over the past two weeks. He is eating less and less on a daily basis with indeed much crying and discomfort. However, this did not start when we started working more on breastfeeding. The doctor wanted us to "push" the breastfeeding more because he seemed to do better with the breast than the bottle. This way he would get more milk, even though it is a lower calorie version. Loki has developed an aversion to the bottle which may have been caused by the initial few months at home, where we basically had to force feed him in order to make a minimal amount of calories. Right now he gags a lot when having the bottle or a pacifier. He attacks the breast or bottle when he is hungry but within a few minutes is either done, or starts a long struggle, fighting sleep and/or physical discomfort. The best way to get some food in is for me to lay down with him on the bed, be quiet and tickle him awake now and then. But the minutes are few!

The doctor will refer Loki to a GI specialist and hopefully soon we will have a series of test done to ensure his system is functioning properly. He will undergo a swallow study and an Upper Gastrointestinal Series. He will have to drink barium I assume, after which the liquid will be followed with x-rays and ultrasounds, to ensure his system works. In addition, because of his somewhat off hearing, he will also have a Brainstem Auditory Evoked Potential check. This means the pathway from the ear to the brain is examined.

It is becoming pretty challenging sometimes to be upbeat and patient with this eating situation. I feel incredibly sad seeing Loki struggle when he is hungry. I just want to feed him, and it is frustrating that such a basic and primal action just does not work. He loves the breast, there is milk, what is the deal? Well, the deal is obvious. He was tiny and not done baking in the oven when he came out. It just breaks my heart to not be able to help him be a happy eater and gain weight, just as most babies do without a problem.

Unfortunately not just happy eating healthy baby stories!

Continuing feeding troubles

We apologize for the long time since our last post. Loki has had some improvements, and some problems.

The big problem continues to be feeding. This is not entirely bad news: He is eating (or is it drinking?) mostly via the breast. However, it does not seem to be enough, and it is a struggle to feed him, with much crying etc. He has not gained weight - and perhaps lost some - in the two weeks since we (actually Mom) have been pushing breast feeding strongly. In some ways, his feeding has become even more difficult. For example, he has developed a strong gag reflex, making bottle feeding a challenge. He is also not peeing enough, and barely pooping at all.

The good news from this - that Loki mainly breastfeeds - means that Mom is pumping only twice per day. This is down from seven times at the peak! Strangely, we are now throwing away some frozen milk. It is only good for four months, and Loki is just not using that much from the bottle.

We are beginning to believe that there is a significant physical contribution to Loki's feeding problems. You may recall that his feedings went from "not good" to "quite bad" after his final surgery on April 1. Of course, that surgery involved work with his intestines. We wanted to allow some time to recovery, but his eating has not improved. Loki and Mom will go to the pediatrician tomorrow, and ask for a referral to a gastro-intestinal (GI) specialist.

Loki is now visited weekly by three developmental specialists: a special start nurse, an early interventionist (EI) (which used to be Mom's job), and an occupational therapist (OT). Perhaps Mom can explain their specializations better than I can. I believe the EI looks at a wide range of developmental characteristics, and the OT focuses on Loki's abilities to do what he needs to do, such as each.

Today the EI noticed that Loki did not respond well to certain sounds. His hearing has been tested before, and it is clear that he can hear. Perhaps he is having an issue with processing certain sounds?

Despite Loki's lack of eating and growth, his behavior and abilities continue to develop. He now rolls over from his tummy to his back quite easily. He grabs at, and pulls, toys and other objects that are in front of him.

Mom's mom - Oma Heleen - extended her stay. She was scheduled to leave around now, but will stay until the 17th. This is great. She offers company for Mom during the day while I am at work, and does much cooking and other things around the house, which really helps me out.

We have some photos and video, but I need to offer a bottle to the little man and sleep myself. We'll get them posted soon.

Thursday, April 23, 2009

Special Guests (photos)

We were very happy by the end of the day. Despite the fact that Loki did not gain enough weight, only 1.5 oz (45 grams) in a week. Our source of happiness was a visit from primaries Janet and Annette! It was so wonderful to see them, and Loki could not keep is eyes off of them. He showed his smiling trick and performed his "I can keep my head up like a real big baby" act. I believe the lovely ladies were a at least somewhat impressed by His Handsomeness.

Annette, I missed you so much:


I feel much better already:


Oh Janet, I missed your squeezes and lovin'.

Hey folks, look at me and my lovely lady:


Oh dad, I missed you when I was sleeping, you are just as handsome as I am:


Hey mommy, are you lucky or what?

Wednesday, April 22, 2009

Hands (Photos)

The video from the previous post has been fixed: It now has sound.

Loki is developing new skills very rapidly. I am used to helping children develop every news skill with lots of support and encouragement. Somehow our little guy figures it all out by himself. Just like typical babies do. I guess I did not really expect him to do that, given how excited and surprised I am. He chews and licks his hands, licks the mirror when having tummy time, and all of a sudden he holds on to a rattler. When I give him a shaker for some great fun, before I know it he puts it in his mouth and suckles on it as if yummy treats are coming straight out of the wood. He is smiling up a storm wiggling his whole body in delight and he is becoming more talkative as well. He seems to be getting a sense of strangers and when held by somebody he does not know well, he makes the saddest face ever seen. Lips tremble and corners of the mouth almost reach to the bottom of his little chin :-( This disappears when I cuddle him again. Loki is overall pretty calm, but has several episodes a day where he gets excited, just because, and he bounces on his legs when held at chest level. Most of the day though his eyes are almost popping out of his head when he looks around taking in his surroundings. Lots of ooohs and aaahs in our house these days.

In addition, he is getting the hang of breastfeeding, wooo hooooo!!. We do not know yet if he gained weight, but his sucks are stronger and his swallowing louder. He dislikes the bottle but we try to offer him two bottles a day a. to give him his meds, b. to give me a break, c. to give him some extra calories. It is often quite a struggle. Loki pushes the bottle away or shuts his lips tight. Cute to see but not so convenient!!

Oma and the little dude:


Aunty Sar:


Mommy and Loki early in the morning in the yard for coffee:


Our first baby visit in the home, our friends from the NICU:


Oh yeah, we have two cats too:

Saturday, April 18, 2009

Videos: Smiles, laughs, and vocalizations

We have been trying to get videos of Loki smiling, laughing, and "talking." I wanted to assemble one compiled video, but I had problems with software. Instead, here are two separate videos.

Warning: The telephone rings in the first video at about 0:43. Careful with the volume!

Update: The audio on the second movie has been fixed.



6 months

Hard to believe: Loki is six months old today. Of course developmentally he is not even close to being six months, but he was born exactly six months ago today at Alta Bates Hospital. Reason to celebrate we think. Loki did this with a wonderful night of breastfeeding and sleeping in while his mom is pumping milk. Usually he is awake early in the morning full of smiles. He must be exhausted from sucking all night long. We will celebrate with a walk around the neighborhood and prepping his birth announcement for ship off. Over the upcoming weeks you may expect, finally, the announcement of Loki's birth. As if you didn't know he was born yet. Anyhow, with the rate we move these days it may take a while before all 180 are send off, so please be patient (just a little longer). The announcement was designed by our wonderful friends Richard and Maaike, and we are very excited to share it with you. Finally, we will celebrate by putting up the video of Loki smiling. It seems we need birthdays in order to get things done here. Maybe we should go back to the week birthday as well so we actually accomplish something.

I remember so well the days that nurse Janet told us "just wait, before you know it you will be home with him and this time at the NICU is like a distant memory." Maybe not her exact words, but something like it. The NICU experience seemed to last forever when we were there. Janet was right though, now we are home and it is indeed a memory. A mixed bag of memories I should say. Mostly wonderful memories filled with gratitude for the amazing care and support received, and some pretty difficult ones filled with fear, anger and disappointment.

Our lives have been touched and changed by our wonderful baby in ways we could have never imagined. He is such a delightful child, with his observant and pensive character, full of smiles and cuddles. We found new friendships where we never thought we would find them, and we have gotten to know family members in ways we did not know them yet. We realize our support network extends far beyond the people we know. Who would have thought that having our baby so very early would enrich our lives so profoundly?

Despite the traumatic beginning of Loki's life and our lives as parents, I believe we have been extremely blessed.

I will go celebrate now by joining my men in dreamland until Loki needs more food.

Tuesday, April 14, 2009

Feeding and development

Feeding Loki has become increasingly difficult, and is almost a crisis. After the surgery, his eating (or actually, drinking) decreased from about 70 mL to 40 mL per feeding. But soon after, we (or actually, Mom) began pushing breast feeding harder. The pumping, freezing, thawing, and bottle-feeding system that we have been using is a lot of work, to say the least.

But this has been difficult. It's not just that Loki doesn't eat consistently from the breast. (He usually falls asleep). We also can't tell what's happening, exactly. When we gave him a bottle, it became even more difficult, with him taking in only 30 mL or so. And Mom's pumping production decreased. Do these two things indicate that he is succeeding - even if he is not on the breast very long? And if he is not yet succeeding, for how long should he get less-than-enough from the bottle, in order to make him drink more from the breast? When we do give him a bottle, is it a good thing if he drinks a lot (nutrition! calories!) or a bad thing (too full for breast milk later!)?

This is complicated by his single kidney. If he doesn't drink enough, will he become too dehydrated and not produce enough urine?

In a similar dilemma, Mom is worried that her production will decrease. The best way to keep production up is to pump often. But that will leave less milk for Loki. How do we juggle all this?

At the doctor today, we learned that Loki lost 6 ounces (170 grams). Nevertheless, the doctor said to push breastfeeding even more, and to use fewer bottles. So, Mom is holding him close to her chest almost all day.

Of course, this puts me in an awkward position. I want to help, but there is only so much that I can do.

Meanwhile, Loki is developing some fun new behaviors. In just the last few days, he has begun to "talk" or vocalize. He makes little cute sounds , even when he is not complaining (which is all he could do until know). Loki smiles much more, too. He is also playing with his hands, bringing them together and interlocking his fingers and bringing them to his mouth. This includes a new ability to push away the bottle!

We will try to get a video of some vocalization and smiling. But he is most awake early in the morning, when I am more interested in coffee than a video camera. (Of course, Loki's smiles always wake me up...)

Sunday, April 12, 2009

Photos: Picnic, Opa, nap

Today, Loki, Mom, Oma Heleen, Opa Frits, and I had a salad from Cafe Intermezzo in People's Park. Very Berkeley!


Loki was entertained... maybe a bit too much:


Back at home, Opa gave a bottle:


Very tired:

Friday, April 10, 2009

Breastmilk and Photos

Per doctor's order, we are increasing breastfeeds. Although he wanted all but one or two bottles gone, we decided to keep an eye on the color of Loki's urine. We give approximately four bottles a day. The rest is breast. This means hours and hours and hours of Loki, the breastfeeding pillow, and myself hanging out on the orange couch. Wow, Loki may not be the only one doing some growing here! In fact, I may be the only one. Loki is loosing a bit since we switched to more breast. This makes sense since the milk he gets straight from the source is 20 calories whereas the bottle is fortified t0 24. Soon he should be able to catch up again. We'll see the doctor again next week!

Loki takes a little nap in the "my brest friend" pillow. Catchy name, isn't it? Since the pillow and I are attached to the hip, literally, with the continues breastfeeds, I guess the pillow lives up to it's name.


Is this how Anne Geddes got her start?


Patty Cake, Patty Cake; or Klap eens in je handjes, blij, blij, blij:


Kaboutertje (gnome) is ready to go outside:

Wednesday, April 8, 2009

The A + Team

It has been a few days since Loki and I went on a walk and ran into to Anne, one of the discharge nurses at Alta Bates. She encouraged us to say "Hi" at the NICU. This is common practice for NICU graduates. However, due to cold and flu season, we have not felt comfortable doing this yet. Thus far, I frequently walk by the NICU, pointing at the 4th floor window of Loki's first abode. I tell him, "this is where you used to live, when you were very, very small. There are lots of friends there who took wonderful care of you." Usually Loki continues to do what he is doing, which is sleeping in the carrier, snoring, having one eye open. He may give a groan here or there when I disturb his peace, but he seems unimpressed about my excitement to show him the window of his NICU room. What is kind of bizarre to me, is the use of "NICU" and "excitement" in the same sentence.

Being in the hospital for four months was extremely challenging. I dare say the whole ordeal has been pretty traumatic. However, when I walk by the Alta Bates NICU, I do not feel anxiety; I do not feel sad; I do not feel overwhelming negative feelings. I have asked myself many times why this is. The best explanation? Alta Bates has an amazing team of doctors and nurses who have truly been able to help carry the weight of fear and insecurities resting on our shoulders. The staff is trained in compassionate beginnings. In short, this means approaching the babies from a humane and compassionate perspective. Providing containment for babies' pains and fears beyond the traditional medical approach and supporting babies in their strengths as well as their needs. I believe that many of the staff we worked with extended this approach to us.

Perhaps this approach is why I have positive feelings when thinking about the Alta Bates NICU. And that is why I was excited when Anne told me it was okay for us to go visit. Loki and I went up and were able to see Amber, Margaret, Annette, Rhea, Dr. Sandu and Halkias and many, many others. Standing there at the reception showing off our handsome little guy made me proud beyond words. Loki was looking around with his big blue eyes, as if he had never seen the place before. He was completely unaware of why people were so interested in him. He has come such a long, long way.

Alta Bates NICU staff, you truly are The A + team!

Monday, April 6, 2009

Walk

The weather continues to be wonderful here, so any chance we get we take a little walk. Since Opa and Oma are here right now, we have a few more minutes now and then to step out. It feels great!

Today we met Loki's new friend Eben. He was born on Loki's due date and is a handsome little fellow. He is the son of our friends Noah and Elizabeth. As we are unable to have children visit our home, we met infront of our house and went for a little walk, while remaining a safe distance. It was fun being able to exchange newborn stories, ups and downs, and realize that some of Loki's behavior now is just typical baby stuff.

Eating has been a little better past two feedings. We were getting very worried about the lack of interest in food, and ability to eat well. He ate 30 or 40 ml's instead of 70 for most of the feedings. Because of his one kidney this obviously poses the risk of dehydration. Hopefully we are on an upward trajectory. Although of course development is never a straight line. More up then down is desired! That needs no explanation!

Saturday, April 4, 2009

Home

Yes, we are home! We came home yesterday evening after a very hectic and exhausting 36 hours. We did not know Loki was being discharged until the moment it actually happened. All day long people were confused as to who would give the final word about when we could take our little man home. All of a sudden the nurse practitioner walked in and simply said "you are good to go." Dad had already left via public transit and would not have been able to come back until late at night. Although I was left with the car, I did not think driving - especially very special package - was such a good idea. I had not slept, was drowsy from the medication (which does indeed increase milk supply) and to top things off, there were some pretty strong and gusty winds. So, I called Dad, he jumped off the train, and ran back up. The craziness of discharge was an appropriate end to a chaotic hospital stay.

It is wonderful to be home, particularly with Oma and Opa. Little Loki has been a tough trooper, as always. But he is having an even more difficult time eating. We hope that this is something temporary from the surgery. After all, he did have his intestines shoved back in his body. (However, he still looks as if he has a hernia. It will probably take some time for his body shape to adjust.)

Friday, April 3, 2009

Hospital, Day 2, with photos

Although we are very satisfied with the medical care at UCSF, our experience during recovery in the regular children's rooms is a bit difficult. In particular, there is almost nonstop noise and interruptions. Even overnight, when Mom tried to sleep on the pull-out chair-into-bed next to Loki's bed, something was always going on. A nurse coming in or out, checking on Loki, or on our roommate. We've had three roommates in 24 hours, and each one was moved in and out, with doctors, nurses, and family in tow. Roommates' families would talk loudly, or have the TV on. Each roommate's bed change required cleaning staff to come in and out at least ten times. Many of the visitors would leave the door open, while it was very noisy in the hallways. (Of course, the floors were being waxed today as well.) Earlier today, the door would open about every minute or two. And Loki's monitor could never get a good signal, resulting in loud, constant beeping.

So, Mom was unable to get any real sleep, either overnight or during the day. I don't mean to complain too much. The medical care is what matters most. But this situation wears Mom down.

Anyway, Loki is doing well. He has had a couple regular feedings, and his catheter is out. We are trying to figure out when he will be discharged - today or tomorrow - or even when that will be decided.

For now, I must go home and meet Oma and Opa there. Mom will be staying with Loki, of course. Hopefully she can get some good sleep soon.

Loki imitated my tongue-out face:


Mom and her favorite dude:


Oh, why am I in a hospital again?!?! At least I have Musical Bear:


This is from yesterday, at home:

Thursday, April 2, 2009

Surgery: All good so far

Loki's surgery is done, and everything appears to have gone well. We just spoke with Dr. Baskin, the urologist. The stent came our fine, and the large hernia has been repaired. Loki did not need to be fully intubated with a breathing tube, but only with a laryngeal mask. He should be in recovery now, and we'll soon join him. Loki will be sent to the regular children's recovery area, not the pediatric intensive care unit. This is a sign of the doctors' confidence in his overall health. He will have a urinary catheter overnight, just to be sure urine is being produced correctly. Loki won't be fed until tomorrow morning, and should be able to leave before noon.

Of course, we are very relieved that all is well.

It is strange to be back at a hospital. Being at home had become so normal. But we are glad that it is at UCSF, where we have total confidence.

Wednesday, April 1, 2009

Cards and addresses

We will soon mail out birth announcement cards for Loki - six months late! I am sure you understand that his early birth caught us unprepared. If you are a regular reader of this blog, we wish to send you a card, even if you are a friend-of-friend or similar second degree relation.

However, we need some mailing addresses. As a rule of thumb, if you received a Christmas card (a year and a half ago) or an invitation to the baby shower, we probably have your address. If you didn't, or if you have moved, please email me. If you get the blog by email, you can just reply. If you read it online, email me or Mom. I am at jessreyn[AT]gmail[DOT]com, replacing the "[AT]" with "@" and the "[DOT]" with "."

Off to the hospital! Surgery is scheduled for 2:30 PM. We'll update the blog as soon as we know more.

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.