Thursday, October 29, 2009

Video: Loki plays

First with me, and then with Mom. The latter clip contains the first time that Loki started the game. He keeps pushing his head upon Mom's mouth. As always, if you get this via email, you will need to click on the link or headline to see the video.

Monday, October 26, 2009

A few updates; more party photos

First, Mom and I wish to send a big 'Thank you' to all those who gave gifts and cards at the party or via mail or whatnot. We will get cards out sometime soon, but we are juggling a lot--so it may take some time.

Second, I want to congratulate and thank Mom on an amazing party. She pulled it all together in what little spare time she has, and as always, did a superb job.

Below are more photos from Loki's party, taken by friends Mascha, Lena, and Jennifer. Thanks for these!

Loki's new feeding system continues to be difficult. We currently feed him 11 or more per times day. The tube often pops out of his button during a feeding, because the button may have been damaged by a nurse at UCSF. And the syringe often won't stay in the other end of the tube, as the tube becomes looser with use. We are supposed to have a new tube each day, but the home health company can't seem to get them. Thus feeding can be quite a handful.

Those are merely inconveniences. Sometimes we loose feedings. Because it is loose, his button often pops open, such as when he is sleeping. If the inside valve is not closed, an entire feeding can spill out onto the sheets (after being in his stomach... yuck!). And he often throws up a feeding or two each day (also yuck).

As a result, Loki is not taking in enough calories and is not gaining weight rapidly enough. We have increased the strength of his formula or fortified breast milk to 27 calories per ounce.

As I mentioned previously, the current button is temporary, and will be replaced with a Mic-Key later. That is able to lock the tube in place,but its installation requires that the hole into his stomach has completely healed. This is because the Mic-Key is inserted from the outside, and then a balloon inflates on the inside. The doctor is searching for one small enough for Loki, and we hope to have it installed in mid-November.

We are also working on getting shots for Loki. He got his flu shot, and we are anxiously waiting the availability of the H1N1 shot. Loki was initially denied insurance coverage for a Synagis shot, which helps protect against respiratory syncytial virus (RSV), because he has passed his first birthday. But 'the squeaky wheel gets the oil,' and Mom hounded CIGNA and, with great assistance from our pediatrician, got this arranged.

Loki is now starting to crawl, but in more of an accidental manner than intentional. He has yet to figure out what movements he must do in order to move forward.

For the first time, I will be heading out of town for a few days of recreation, beginning Thursday evening. I am very grateful for, and nervous about, Mom taking on all the work. But when I considered not going, she insisted I do. That's how great she is.

Ready to party in pink:


The enormous cake:


A few words:


Candles go out:


Hmm, sugar...:


Happy family 1:


Loki has a lazy eye. We call it pirate eye. Arr!


Loki and his lady friend:


Oma Heleen and Opa Frits:


Happy Family 2:


Big happy family:

Monday, October 19, 2009

Party:

Loki turned 1 and he behaved like a big boy. Barely any naps during the day, lots of love, smiles, playing with friends and hugging during the party. Loki had many, many visitors and was very entertained by all the excitement. Lea and Patrick made the room look beautiful by bringing in amazing balloon arrangements and Loki received an incredible amount of gifts.

As dad and I were reflecting on the day we realized it felt like a "Loki Shower." We finally had the chance to really celebrate Loki's birth, and it felt great!

Summarized we had a wonderful birthday party yesterday.

We are collecting pictures from various cameras so please be patient, we'll have more photos soon!

The Birthday Breakfast table with gifts and decorated chairs for Loki and Dad:



Loki meets his new friend, brought in by Oma and Opa (any name suggestions?):


Loki had a lot of fun with (nurse) Danielle, she made him laugh out loud more than anyone else. Very cute:




Loki is so smitten with his (nurse) Amber:


Loki and his love Ruksana (from the NICU):


Being held by Aunty Prema:


Loki's friend Finnie and his balloon:


So many friends were there. In this picture Boris and his mommy (from NICU) and friend Jeremy with his daddy Sean:

Wednesday, October 14, 2009

One year ago (now with video)

At 23 weeks and 4 days, my water broke. It was a Sunday afternoon, October 12th, around 5 pm. I had been convicted to bed rest since September 25th. I had been working very hard--too hard if you ask me--wondering how, for heaven's sake, I would be able to keep up the pace for at least four more months, while fighting off the cramps (which we assumed they were early Braxton Hicks). Anyway, it was Sunday afternoon, my sister's birthday, and "almost" Dad was about to leave on a walk. I heard him open the door and at the same time felt, and I think also heard, a loud pop--water everywhere.

Before I knew it, "almost" Dad was carrying me to the car and driving around the block, as we lived two blocks away from Alta Bates hospital. He parked in a taxi spot in front of the hospital and wheeled me up to the triage. Was it panic I felt? I am not sure. Dad later explained he thought that this was it: No more baby. I certainly did not feel that way, but I was awfully aware of the major risks and issues immediately ahead of us.

While being admitted by a lovely nurse (one of many to follow), the doctor was on her way. This was not my own doctor. In fact, just two days earlier I had asked my own OB/GYN if there was a way for me to avoid being seen by this particular colleague of hers. Wow, was this karma biting me in the behind for being too picky?

This doctor who admitted me forever changed my abilities to advocate for myself and my yet-to-be-born son. As background: It is common practice during preterm labor to give the mother steroid shots. It has shown to make a major difference in the babies chances of survival, as it gives a major boost to the maturation of the lungs. Thank goodness I knew this. Unfortunately this doctor was not very willing to assist us with this, as I had not reached the 24 week mark. Seriously?!? I was given a variety of medications in order to stop labor, yet she was unwilling to provide me with this simple, yet possibly lifesaving medication? As I pushed her on the issue, she walked away. And while I was still soaking wet, waiting on the table during admission, she shoved--yes literally shoved--a piece of paper in my face describing viability and percentages of disabilities among micro preemies. I thanked her for the paper, explained I knew very well what the chances were through my work, and asked if she could please give me the shot right now?

I did get the shot. I must have asked a hundred times; even after I already received it, I was obviously confused. I was brought to a room--number 8--where I spent the next six days literally tripping my head off from the magnesium in my system. I have never been this scared. I lived in a vacuum of fear and knowledge that this baby was going to be born way too early. Way too early.....

One year ago, I was lying in a hospital bed desperately trying to hold on to the baby growing inside of me. Approximately one year ago, Dr. Dudell, one of the neonatologists at the NICU, came to our room to talk to us about the viability of our baby. For the first time since I was admitted, I was able to truly hear the numbers that I had known all along. She handed us the same piece of paper that we had seen during admission, but with significantly more respect and much better timing. What we already knew became much clearer: 23 weeks and some days is not a good time to have one's baby. Numbers vary somewhat but range from approximately 20-40% chance of survival at 23 weeks. The numbers rapidly look better and range from 50-70% at around 25 weeks. If, and when, a baby survives, the chances of disabilities and health issues are overwhelming. The picture sketched for us looked terrifying. This has been the only moment throughout the entire process that I allowed myself to realize this. Most of the time I could not comprehend the possibility of loosing this precious life.

After a week in which we celebrated every hour of prolonged pregnancy, I very clearly felt different on Friday the 17th of October. The cramps became more frequent, and although nothing registered on the monitor as contractions, I certainly thought I was in labor. I was afraid, knowing that there was no more medicine I could be given to keep the little guy in. I was constantly balancing on the edge of magnesium poisoning. It became harder to track the fetus by monitor and finally on Saturday morning, Nicky, my nurse of the day, decided to have me track the cramps by pushing a button, rather than relying on the monitor to register. Indeed, I was having frequent contractions. A doctor came to check dilation and thought she felt a little leg in the birth canal. I was completely dilated. Gears were rapidly kicked in motion, my own doctor was called in, "almost" Dad was called (as he was at home taking a shower), and my hand was held by my close friend Laureen.

Very scary times, and yet I knew it was going to be okay--whatever okay meant. Our baby, this little early bird, was going to be okay. We did what we could do and the doctors and nurses certainly did all they could do as well. 24 3/7 was the absolute max.

During the c-section Amy Whinehouse played. I guess we forgot to bring our own iPod! The tiny person was rescued from my womb, which he had outgrown already, and made his entrance into this world, unable to breathe on his own and unable to sustain life without support. It was awfully quiet for a long time. Nobody could tell me how the baby was doing. Dad was asked to come and see the baby. After the little guy was somewhat stable, he was brought up to the NICU, with Dad in tow, as well as our friend Sarah. Laureen came in again later and also went up to see our tiny elf. All agreed that he was gorgeous. Now I just needed to feel my feet and wiggle my toes in order to be wheeled up in my bed to meet my son. It took hours before the anesthesia left my body.

I met my son Loki Sky, then known as Baby Boy Sprenger, for the first time in room 3 at the ABSMC NICU. Many people had already seen him. Dad had played him the little music box. Our baby's eyes were unopened. He was tiny as could be at 1 pound 5 ounces, but oh what a precious and beautiful baby boy he was. And what a breathtakingly scary start.

Almost one year ago our baby boy Loki was born. We had no idea what would happen. The roller coaster NICU ride was not what we hoped for. But it could have turned out very different as well. We are blessed with an amazing child. And although it is easy to say in hindsight, I do believe I knew this boy was going to be okay when he announced his pending arrival on that Friday the 17th of October.

Update from Dad (1:23 PM PDT): Here is a video of Mom meeting her new little man a few hours after his birth. You can read my account here.

Good News:

Today we got the results back from Loki's urinalysis and the protein level has dropped from 2 to 0.8. Zero leakage is normal. The Dr. called it "great news." This very well may indicate that the protein leakage is a left over from either his surgery and/or the dehydration and could possibly resolve without further treatment.

We're happy and preparing for Loki's (and dad's and papaw's) BIG birthday bash this weekend. We believe we sent the invite to all our local friends, if we missed someone, we apologize. Please feel free to contact us and stop by

Tuesday, October 13, 2009

Video + photos: And an update

For better or for worse, the fact that the tube easily slips out of Loki's button has forced us to take the next step in tubular feeding: Instead of a pump, which provides a continuous supply of food during a one-hour feeding, we are using two syringes, one at the start of the feed and one an hour later, and injecting them over a five minute period. This trains Loki's stomach to take in a distinct meal instead of a steady stream. In the near future, we'll gradually combine these two half-feedings into one. After that, we hope to make each feeding bigger, and then have fewer of them.

But for now, we find the new feeding regime to be even more tiring than the pump and NG tube. He has eight feedings, each three hours apart, with each feeding having two parts, an hour apart. That's sixteen! And each one typically requires the tube to be pushed into and pulled out of Loki's button, which is the source of much discomfort for all of us. This seems to be more interruptions in our day and night, and is quite tiring. Furthermore, I don't see us getting out as easily as with the pump-in-a-backpack. Then again, maybe we are just going up the learning curve again, and this will be easier soon.

The good news is that Loki's low grade fever has subsided. And overnight he is less fussy, and seems to have fewer signs of reflux.

The bad news (separate from the tube) is that Loki still has too much protein in his urine. This was first noticed during his July hospital stay. It could be elevated because his kidney is still healing, but it could also be a sign of a problem with it. (Link 1, link 2)

This video shows how Loki expresses happiness. Flap flap! Video from Maaike and Richard. (As always, those who read this by email must click the headline or the embedded links to go to the website and see the movies.)



He can also do it sitting up:



Painting party!


One the UCSF parking garage before the surgery. That's the Golden Gate Park, the Presidio, Golden Gate Bridge, and the Marin County headlands in the background.


In the recovery room.


That's the plug. Click for a larger version, as always.


This is an elastic girdle used to keep the plug closed:


With Maaike and Richard:


Tired?


Happy!


Mobility is soon:


Loki fashion show:

Saturday, October 10, 2009

Holiday Gift Drive for the Alta Bates Summit Medical Center NICU

Loki spent the Holidays in 2008 in the NICU and so did we. Those days were often scary and insecure. Fortunately we had wonderful primary nurses, friends and family who helped us celebrate the season the best we could. The gifts, cards and drawings we found at Loki’s bedside were such an uplifting and hopeful experience. Our little guy, still six weeks away from his supposed birth date, was loved and well taken care of.

We wish to offer the families in the Alta Bates NICU this upcoming Holiday Season some of this hope, love and sense of care. We need your help…….

What you can do: purchase a baby toy, book, preemie clothes or baby blanket* and send or drop off at our home before December 10th 2009. We will bag the gifts and put little notes in there with your name on it if you like (e.g. The Smith Family sends you love and strength from Bedford Falls).

If you don’t have time: No problem, we can do the shopping for you, just let us know (email lijnsprenger@gmail.com)

Our goal: collect 60 gifts, this is the maximum occupancy rate at the NICU.

Where to send/drop off your gift: our home (we did move in June so please let us know if you do not have the correct information).

Please help us celebrate all those new, fragile and precious lives!

Thank You!

* We ask that all items are newly purchased as babies at the NICU have lower immune systems

Thursday, October 8, 2009

OK, maybe not all is well

So as Mom mentioned, we are having problems with the G-tube. One was strangely beneficial, the other is totally difficult.

Although Loki experienced less discomfort during the first 24 hours of feedings on the new tube, after that he had more. Because of this, and the second problem, we tried switching from the pump to bolus feedings, in which we slowly push a large food-filled syringe connected to a tube and his button in order to feed him. Instead of one hour of continuous pumping, we are now giving him three five-minute "bursts," separated by 30 minutes from each other. Not only is he more comfortable, but this is the next step towards better feeding habits. We'll gradually make the first "burst" bigger, and the latter two smaller, until we are just one five minute burst per feeding. The drawback is that, overnight, we currently must slowly push the syringe at 1:00 AM, 1:30, and 2:00. This amounts to 90 minutes with little sleep. We decided to let him sleep through the 4:00 AM feeding!

The second problem has been mentioned: The tube too easily comes out of the button that was installed in Loki's abdomen. Keep in mind that all along this is a temporary plug, in which a tube just slides into a hole. After three months, this plug would come out and he'd get a "Mic-Key," which has a locking mechanism. (That change will require a procedure with general anesthetics, but not an overnight stay in the hospital.) During those three months, though, the fitting would gradually become looser and looser.

But today, the GI (Dr. Rhee) who put in the plug was shocked at just how loose the fitting had become. This problem appears to have been traced to a nurse who, in the hospital, forced in a syringe with a larger fitting directly into the plug. This loosened the fitting. Dr. Rhee is very upset and will file a report. The switch to the Mic-Key will now happen as early as possible, perhaps at just one month. In the meantime, we were given a stretchy elastic band to put around Loki's waist to help hold in the tube during a feeding. It is going to be a long four weeks!

I've been meaning to mention that Loki is now 17 pounds, 2 ounces, or almost 7.8 kilograms.

As mentioned, Richard and Maaike from Nederland were here for the past week, and they provided amazing support. They visited us at the hospital during their only weekend during their first vacation without their own little man. They provided much help around the house. Maaike is trained in both nursing and child development, and thus had great advice on the G-tube and other aspects. And Richard is a designer who did our birth announcement cards, and used that design to redesign this blog. So mucho gracias to them!

Tomorrow, Mom's mom (Oma Heleen) and step father (Opa Frits) arrive. We look forward to it.

Off to the next burst....

Wednesday, October 7, 2009

Welcome:

Welcome to our newly designed blog! We are very excited about the new lay out! Thanks to Richard our blog now matches Loki's spunky and hip character :-). We hope you enjoy it as much as we do.

We came home Sunday afternoon after 48 hours in the hospital. Loki is doing well, although the new button (g-tube) is not quite functioning well. We are not sleeping much because of this failing button and hand delivered tube feeds. W will explain later in detail what the problem is. We will see Dr. Rhee tomorrow, very hopeful to find out more and what we can do.

Finally, Maaike en Richard will be leaving tomorrow (Wednesday) after providing much, much support and help for the last week. Not sure how we would have managed this week without them.

More photo's soon!

Saturday, October 3, 2009

Surgery is done, and all is well

Loki underwent surgery this morning to put in his G-tube, and he is fine. After a slightly bumpy first couple hours as the anesthesia wore off, we are back on the same floor of UCSF Children's Hospital as we were for nine days back in July, and for two days in April. It is not good to be back in a hospital, but there is something reassuring about being somewhere we know. Loki will probably stay here for 48 hours, until Sunday afternoon, just to monitor for infection or other problems.

I'd like to describe the procedure. Loki didn't really get a tube today, but instead a plug into which a tube can be inserted. The plug is shaped something like a rivet, with large discs on each side, and a small short shaft connecting them. The trick was to install it into a small hole through his abdominal and stomach walls--a hole only as large as the small connecting shaft, and is thus covered on both the inside and outside by the larger discs.

After being anesthetized, and intubated with a breathing tube, an endoscope (video camera on a tube) was inserted down his mouth and esophagus, into his stomach. It shined a light bright enough that it could be seend from the outside. The goal was to find an accessible spot with nothing (such as an intestine) between the stomach and the abdominal wall. Once located, a large IV needle with a string inside was inserted from the outside into the stomach. The endoscope then grabbed the string, and the needle was removed. As the endoscope was pulled out, the string went up the esophagus with it.

From here, my understanding is a little uncertain. I believe that half of the G-tube button (the inside disc plus the shaft) was then threaded with and tied to the string coming out of his mouth. As the string was pulled out of the hole in his abdomen, the half-plug went down his esophagus, into his stomach, and then up against the stomach wall with the shaft sticking out. The outside disc was then pushed onto the other half.

Mom will spend the night here at the hospital, then tomorrow I will. Our friends from Nederland are kind enough to pay a visit in the hospital.

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.