Wednesday, December 31, 2008

Day 74: A summary to close the year

I thought I'd summarize Loki's situation for those who have joined late or become overwhelmed in the details.

Today Loki is 74 days old (Somewhere we recently were off by a day) and is at 35 weeks of total development. He weights 2090 grams, or just shy of 4 pounds + 10 ounces. For reference, he was born at 24 + 1/2 weeks development and weighed 610 grams, or 1 pound + 5 ounces.

He is breathing with the help of the nasal cannula, which is set at 3 liters per minute and low oxygen levels (21 to 25%). He is being fed 45 mL breast milk plus a nutrient boost every three hours. He has an occasional brady arrhythmia (drop in heart rate) and a few blood oxygen desaturation events ("desats") per day.

Recently, he moved out of the isolette and into a crib.

I've noticed that, in the last few days, his eyes now very much look towards sound, especially Mom's voice. His eyes still wander independently a bit.

The current struggle is to train him to breastfeed.

Here is a nice summary of preemies' common medical problems. Right now, Loki's vision is most on our mind. But his retinopathy of prematurity (ROP) has been diagnosed twice as mild. This could change a lot in the upcoming weeks. This may require laser surgery. His vision could turn out to be just fine or quite bad.

He has a moderate case of bronchopulmonary dysplasia (BPD), which is damaged lung tissue. He may have breathing problems for a couple years, but the symptoms should lessen as healthy tissue grows around the damaged stuff.

He had a patent ductus arteriosus (PDA), which is an unwanted connection between two major blood vessels near the heart. This is sometimes called a heart murmur, which is actually the sound made by the PDA. It was closed successfully via drugs.

He has a inguinal hernia, in which his abdominal wall is not closed on the bottom, causing some his intestines to reside in his scrotum. This will likely require surgery soon, but it must wait until his abdominal wall has strengthened enough to be able to be closed.

Preemies are usually in the hospital until around their due date, which for Loki will be February 5. Discharge is dependent upon criteria, which - if I remember - are:
* Over four pounds and growing (done)
* Can maintain temperature enough to be outside the isolette and in a crib (done)
* Breast or bottle feeding, not through a tube
* No apneas (breathing pauses), brady arrhythmias, or desats for five days
* Off oxygen support

Loki, Mom, and I wish you all a wonderful new year. For me, the past year (summarized in two photos below) has been extremely tumultuous, with the most wonderful and challenging events imaginable. I witnessed the miracle of a new life, the stunning power of modern medical care, the dedication of my wife, and an amazing outpouring of support from family, friends, and colleagues. These certainly put things in a new perspective, with new priorities. I know that next year will also be wonderful and challenging, but in a very different way.

We can't thank you all enough.



Day 72: longer update later

Sorry, no long update today. I am very tired. We are working on our house after hospital hours. It's a lot of work because we need to clear out the office and move a lot of stuff around to get Loki's room ready. He'll be sleeping in our room in his little Graco crib initially, but the little guy already has so much stuff, that we need to get it all sorted, cleaned and put away. Our house looks like it exploded. Like we are moving without our belongings packed in boxes.

Loki was doing okay today, just desatting a little more and deeper than usual, when being held or handled. He may just be tired from working harder to breathe with less pressure in the cannula. He loved being held while I am standing up gently rocking back and forth though. A real baby thing to like.....

Tuesday, December 30, 2008

Photos

Especially for Nana:



And for the rest of Loki's fans of course:

So sweet:

I love his booty sticking in the air:



Honestly, he can keep his mouht closed as well. It's hard though when you are sleepy:







Day 71: Less Oxygen pressure

Loki made another move today and he handled it quite well. He was very alert during the move and was looking around with his cute little eyes, when Janet moved his crib to another room. The move is based on nursing assignments; he is back to a three to one assignment. In addition, his cannula pressure has gone down to three liters instead of four. Curious how he is able to handle less pressure in his lungs. His doctor decided to give him Diuretics to help him move any excess fluids out of his lungs, just in case he has some. Excess fluids is not uncommon and diuretics is apparently a simple and safe way to address this. If there is some fluid, this medication should help him breathe a little easier.

He reached two kilos and looks it. Janet is right, it looks like Loki got big overnight. Size is relative though. He shares his assignment with an 8 pounder, and at this point in time that size just looks wrong. An eight pound baby never looked so gigantic before. Wow, I admire you mothers, who have been able to carry a baby that size around in your tummies!

Still working hard on the breastfeeding, he latched on well a few times today and was sucking away for a few minutes, he looks so adorable when he does that. I have to catch the moments he is alert though, so any sort of schedule I used to have is now more or less non-existing. Oh well!

We have a few photos we will update in the morning!!

Monday, December 29, 2008

Morning of Day 70: No major updates

Sorry for the late post. No major updates today. We're just a little tired. We're trying to go through our house to get it all set up for when Loki comes home. We probably still have at least five weeks we estimate, but you never know of course. It is quite some work getting everything done because we need to create space in a not so spacious apartment.

Loki had a good day although he is learning to fuss like a big boy. He really likes to be held, and when he is put back into his crib he starts complaining. The musical bear that Stina gave him does wonders, because one of the songs seems to calm him down a little! Many thanks to her! It sounds a little bizar probably, but in a way the fussiness is almost pleasant at times. Not only does it provide us with some real baby experiences, we are now able to pick him up and sooth him. We can do something for him as his parents. Dad sat down with him for while during Loki's early evening feeding, and Loki was oh so comfortable.

Although our little guy is growing well and getting stronger and stronger, I would also like to emphasize that he is very fragile. It is easy to start seeing him as a regular, just small sized baby. He has lung damage though and this will continue to make him very sensitive for a few years. It is pretty daunting to realize that a small cold can turn into a major issue. We saw it with a baby here just recently. He was ready to go home on Christmas Eve, after having been at the NICU for 2.5 months. He got a cold, possibly from his grandma visiting, and is now back on the nasal cannula. His cold started almost three or four weeks ago, and he still needs the support. Obviously this is quite devastating for his family.

So, apologies if I continue to be a germ freak. I will be one for a quite a while though, and I will have to be unfortunately. I know a little cough or scratchy throat does not feel like a big deal to us, but it will be a serious deal for Loki. Please bare with us through these fragile years and please continue to use your best judgement when visiting us. We want our little dude home as soon, healthy, happy as possible.

Sunday, December 28, 2008

Day 69: Little updates

Loki weighs 1940 grams (4 pounds + 4 ounces), which is almost two kilo grams, mind blowing. Today I am just so very surprised with how big he suddenly has become. I simply can't believe how he was a tiny little chicken without any fat only two months ago. Currently, he has chubby, fat little legs, a tummy and a double chin. Sure, he is still tiny compared to a full term baby, but compared to when he was born, he is gigantic. Also, he is much more handsome in real life. For whatever reason his cheeks are much more pronounced on photos. Don't get me wrong, he has big cheeks, which apparently is a symptom of the BPD (Bronchopulmonary Displasia), but somehow they seem significantly bigger on pictures. When you see him sleeping in his big boy crib he has a tiny, beautiful, round face.

Loki is fully on the nasal cannula; Doctor Usowics decided we should give it another try. So far so good. We are keeping our fingers crossed he will be able to stay on the cannula until he is ready to breathe without support. We are lucky tonight, our night nurse is one of our wonderful PM primaries; Danielle. She came in last night with a full, full bag of breast pumping supplies that she no longer needs. For those who use(d) the breast pump, you know how expensive the bags, the shields, the pads, the wipes etc. are. So I am very, very grateful and excited! This saving us a ton of money and time going to the pharmacy, which at this point in time is really, really helpful!! Thank you Danielle!!

Finally, we continue to work on the recreational breastfeeding. Sometimes he latches on, sometimes he does not want anything to do with the whole process. He shuts his mouth in protest and when the nurse, or I try to put the nipple in his mouth he cries and turns bright red. I feel so guilty shoving a boob in his mouth, but am really adamant about the whole thing. So, practice, practice, practice, that is our motto! Maybe one day he'll appreciate :-)

Saturday, December 27, 2008

Video: Loki's bath

Here's a compilation of four clips of Mom giving Loki a bath for the first time. He responded quite well. You may notice that things don't look quite right in his manly area. That's the result of his hernia, which will probably require a minor surgery in a couple months. Also, you'll see that he we gave him some oxygen via a mask about each minute. Not only did he not have his typical breathing help (cannula or CPAP), but he didn't even have his blood oxygen saturation sensor on. Thus, we couldn't easily tell if he was desatting.

Friday, December 26, 2008

Even more photos from Christmas

Happy Mom:
Mom holds:

Family's first Christmas:

Oh, Hi!:

Is this my good side?:

Tired:

Tired #2:



Yet another hat:




Tired #3:
Growth chart, from 610 to 1860 grams:

Nurse Margaret makes it possible:

A preemie Christmas

I found this image below while browsing the web, and found it to be funny. It is a Christmas card from a neonatal intensive care unit. The isolette manger is actually from a little Playmobil brand toy set with a doctor and a preemie baby. We'll probably get it so that Loki can better understand his story.

Since it is still Christmas in the Netherlands (where it is celebrated on both the 25th and 26th of December), one last Merry Christmas to you all!

A video and more photos will be up soon.

Day 68: Surprises for Christmas (with photos)

Loki's first Christmas was full of surprises for him and for us.


When I (mom) walked in on the day of Christmas Eve I did not see Loki's isolet in the room. If Margaret wouldn't have been there, I would have quickly decided that Loki had moved rooms. However, Margaret was there! In Loki's spot there was a big, blue crib with a tiny bundle of baby inside. That bundle was our little guy. As a four pound baby who is more or less able to keep himself warm, or at least to warm up after being cold, he has now graduated to an open crib. This is super, super exciting news. It is so fun to see him in an actual (hospital) crib. We can get him in and out much easier and it is so much easier to change his diaper. Margaret kept this surprise from me when I spoke with her on the phone, so probably jumped a few feet in the air upon entering the room. Margaret seemed about as excited as we are. I almost told Dad on the phone but the decided that the same walk-in surprise would be fun for him.


Next, we received so many wonderful gifts for Loki and ourselves. The most amazing gift was one from Nana in Indiana. She send us a quilt, made in 1979 by her aunt and great aunt. They made squares with the Dutch Boy pattern, which his commonly used by quilt makers. She wanted to make two quilts; one for Dad and one for his brother. However, the squares did not match up right. So, one quilt was made and then never used until Nana realized why there was never a clear purpose for this piece of art yet. Her Dutch boy just came about twenty years later in the handsome shape of our little Loki Sky! He fits in this quilt about hundred times, so he'll have to wait until he is a little older and sleeps in an actual twin bed, but we'll keep it safe and clean for him until that time. Santa Amber brought Loki a very cute set of frames for his hand and foot prints, which are so much larger than they were just two months ago!

Amber getting Loki ready for the night:


Then, on Christmas day, when I unwrapped Loki to change his diaper I saw his shoulder and was surprised that I did not recognize the white with red top he was wearing. As I unwrapped him further he was all dressed up in the absolute cutest Christmas outfit. Again another surprise from Margaret. Oh my, if Loki was candy I would have eaten him up at that moment, so very, very sweet and cute.

Dad was finally able to hold Loki and they cuddled up for a Kangaroo hold for about an hour, which seemed to very good for both of them. Loki was sound asleep and dad made sure to not wake him up. He was surprised about how much bigger Loki felt on his chest. You can not hold our little guy in the cup of your hands anymore.




Last but certainly not least, was bath time. Margaret showed us some of the tricks on how to give Loki a bath. I was able to give Loki a bath by rubbing his tiny body with soap and rinsing him off in a little tub. He tolerated this quite well, although he lost a degree in temperature, which is apparently common. I was not very fast as you can see in the video's dad will upload sometime later today. The whole process took about 30 minuted of nakedness and wetness without all the cozy, warm blankets wrapped around him. Loki received some "fly by" oxygen through a mask and did quite well with that. His coloring remained really nice and pink, despite the fact that he did not like every bit of his bath. It was a really wonderful experience and hopefully dad will feel confident enough soon to give it a shot as well.


Weighing 1925 grams now he looks so much bigger, not so sure about the bath though:



Most certainly a Christmas to remember; Thank You Loki, Nana and Margaret for being special contributors :-)

Thursday, December 25, 2008

Christmas

We want to thank you all so very much for your amazing support over the past few months!
We can’t wait to share Loki in Real life with you!



Have a Wonderful Christmas and a Happy and Healthy 2009.
Love,
Dad, Mom, and Loki Sky

Wednesday, December 24, 2008

Day 66: Spoiled little guy (with photos)

Looking cute in Nana's outfit, but just tired from playing dress up:


Mom, Please:


Just another try to see if he can open his eyes just at the right time:


Give Santa a hug:


Too much commotion, falling asleep is always an option:



Our little guy is only two months old and he is already spoiled by Santa Claus. On the picture you see one of the many cute outfits Santa Nana from Indiana got him. Thank you Nana!! The hat was made by one of the nurses at the NICU. Apparently she makes little Christmas hats for all the babies. This years she started in September. Just in case, she made 60 hats. WOW! In fact, Loki owns three home made Christmas hats now, all made by volunteers and nurses. I must admit that I had a little bit of a giggle session when Loki was lying down on my lap with the hat on his head. He looks so silly with those big, preemie cheeks popping out from under the rim. He tolerated it all well though! His nurse practitioner Blanca gave him a very, very cute hat (a regular non Holiday hat) with matching socks and tiny little shoes. As I said, he is being spoiled.

Loki is really getting bigger; he weighs 1800 grams today, almost 3 pounds and 14 ounces. Although he is not consistently able maintain his temperature, he is definitely having an easier time warming up when he gets cold, or maintaining his temperature when he is being changed. In general he is just a little more solid and sturdy; he tolerates chatter, sounds and light around him without showing significant signs of distress. However, he does tire out and falls asleep when too much is going on, which is of course pretty typical baby behavior.

On the actual news front; Loki is sprinting on the nasal cannula every other three hours. Slowly but surely we are getting there!

Video: Find the baby

video

Tuesday, December 23, 2008

Day 65: Getting better and bigger

Loki is feeling better. He was more feisty again today and gained weight. He is now 1730 grams getting close to 4 pounds!

For those who wonder, dad is not holding Loki yet because he just had a cold. He is no longer contagious according to the doctor, but he wants to be on the safe side, as he still randomly sneezes or coughs here and there. We can't wait for him to hold Loki again though!

Loki continues to sprint on the nasal cannula for three hours each shift and usually requires between 21%-25% oxygen. It is very clear he is getting stronger and bigger, because he tolerates more movement when being taken out of the isolet without major desats. I am able to perform more of the care taking tasks these days, which makes me really happy. Of course I continue to change our little guy's diapers, take his temp and position him in on his back, side or tummy. Although the positioning is a little more intimidating when he is on the CPAP and has the big mask on his face. When the cannula comes out of his nose I am able to put them back in and when dressing him I am allowed to disconnect and reconnect all the wires to the monitor. Today our pm nurse, Bonnie, made the evening much more fun by teaching me the skills of suctioning Loki's nose and mouth. I was a little to careful so she needed to help to actually get some secretion out, but it was fun to try. I'll be a NICU nurse before you know it :-) Finally, if Margaret works on Christmas day, she'll be teaching us the skills of a bed bath!

We cuddled for a solid 4 hours today and Loki practiced his smiles. When I had him on his back on my lap, he seemed to make great eye contact and whether it was a reflex or not, he certainly looked like he was smiling. I am not sure how much he actually sees at this point in time, but I like to think he sees my eyes and that this is the reason he smiles. Oh well, I may not ever find out, but it sure feels good! We also practiced breastfeeding. The second time around he latched on fairly well and sucked away for almost five minutes. Any drop of milk is pretty challenging to process though. We'll keep working on this one!

Monday, December 22, 2008

Day 64: Another not great day

Loki has another day that was not bad, but not good either. Again, he seemed a bit fussier and less feisty than usual. The nurse claims he lost 50 grams, but I am skeptical about that.

It is good to be back and see Mom and the little man. While I was gone, he made a distinct jump in his appearance. He now looks like a real baby, only smaller.

Photos: Hats and holds

"Hello, my name is Loki Sky. A pleasure to meet you.":


Perhaps my favorite photo yet:


The hat is a Chritmas hat that was made by a volunteer (Oma, didn't you predict such a hat?):



His socks fit. In fact, he will soon outgrow some of the preemie-sized clothes!

Sunday, December 21, 2008

Day 64: Tummy Cramps

Wearing Oom Jan's and Tante Aimee's onesie:


He was wide awake, but got pretty tired of all those photos:
Almost done?

Cannot stay awake:

Okay, one more peek! See the puffy eyes from the oxygen? Still looking cute though!


Loki was doing okay today, although he still seems to be a little tired and pale. He has been doing pretty good having oxygen in the low twenties, and even when he is upset he has not needed major increase. However, for some reason he had a very hard time processing his food during the 5:00 and 8:00 o'clock feedings. His cramps made him grunt and cry out in pain, which was very hard to see. It lasted almost until his next feeding was due, after which the whole process started all over again. Poor little guy. Fortunately, when I went out to get a quick bite to eat, dad was there to comfort Loki by patting his booty and talking to him.

Our giant did not gain weight but as you can see in the pictures, he does look a little chubby. Funny how the pictures make him look so much like a big baby boy. He is till half the size of a small full term baby though!

Hopefully his stomach will be less upset on day 64. He needs the rest to grow and take some deep breaths several times a minute.

Saturday, December 20, 2008

Day 63: Dad saw our mini giant

Finally dad felt better today as he got up in the morning. He looked better and seemed in a much better mood. That makes a lot of sense if you think about his life over the past few days. Since coming back from Holland he more or less lived in the guest room. He was able to see Loki and was pretty impressed with how big he is now. After his visit to the hospital we went out for some dinner and were able to catch up on his visit to Holland, a little bit. I am sure there is much more to tell. After dinner, well.... since we were walking right by the hospital I wanted to say goodnight to Loki again.

Loki had an okay day. He still seemed a little tired and looked a bit pale compared to the day before. He did not need much oxygen though and stayed close to 21% for most of the time I was there, except for when I held him for the second time. I do believe he likes cuddling up, but the second time around he has a little bit less tolerance. Especially when he starts digesting his big boy feeding of 34 ml. His tummy still hurts and the cries are becoming louder and sadder. Usually when he is put on his surf board on his stomach he feels better.

Loki is such a cutie, laying all passed out with his mouth open! I can't wait to cuddle him just whenever..... not when the schedule allows too. Oh well, just a few more pounds, a few more independent breathes, a few more ml's of milk and we will get there!

Friday, December 19, 2008

Day 63: Quick update

Just a quick update for those of you who check twice a day and are a little worried. Loki has had a good night. He did well on his three hour sprint on the cannula during the night shift and his secretion has been completely normal for being on CPAP. On the CPAP he has mainly been on room air with a little bump here and there when he is getting his feeding. Our little guy weighs 1675 grams now and looks nice and pink.

Day 62; not feeling hunky dory

Loki did not feel well today. When I spoke with Margaret this morning, she explained he had been desatting and bradying and did not really recover from it as he usually does. When I came in around noon, he was being put back onto the CPAP machine. In addition, when suctioned he had quite a lot of secretion, which made Blanca and the Doctor suspect he may have a cold. It was very sad to see him all covered up with the mask again. It was even worse seeing him towards the end of the day when he started to behave very, very tired. He did not show his typical feistiness when being changed or when having his temperature taken.

Several tests were done and a chest x-ray was taken. The tests came back negative, which means Loki does not have RSV or influenza, which is a major relief. In addition, the chest x-ray showed no signs of pneumonia. However, it was very clear on the x-rays that he is not expanding his lungs far enough on the cannula. This can be explained by something as simple as exhaustion from breathing on the cannula, or indeed having a general cold. Although he behaved very tired and somewhat lethargic for a little bit at the end of Margaret's shift, he did not have more secretion as long as I was there. And when I called in at 10:00 pm, he was still doing well on 21% oxygen on the CPAP. Also, his somewhat high temp form earlier, may have been explained by wearing a warm t-shirt from the hospital. He did cool down and stay at an appropriate temperature after we kangarood.

What we are hoping for now is that all his signs just showed us he was tired from being on the nasal cannula and do not indicate any underlying issue. Although I signed up for a room at the NICU for an overnight, Blanca (his nurse practitioner), the doctor and his nurse Jenny ensured me he was doing alright. He was not retracting his chest and he did not show a "bopping" head which are signs of respiratory distress. So, I left with an okay feeling about the urgency, or lack thereof. That said, it was very difficult to see him feel so miserable and not being able to really help him.

Nevertheless, always scary to see Loki take a step back. But hopefully he is able to recover when sprinting on the nasal cannula as he is doing now with most of his time spend on the CPAP. With a little bit of luck we can plan the sprinting such that we can restart the recreational breastfeeding, as soon as he is up for it!

Unfortunately Dad does indeed have a viral cold. There is not much he can do except for waiting, sleeping, plenty of fluids and healthy food. According to our own doctor, he shouldn't be contagious anymore after 48 to 72 hours. Also for those who wonder, if Loki does have a cold, he did not get this from Dad. He has not really seen Loki except for those first 10 minutes after his trip, with the isolet closed, and I don't have it.

Please keep your fingers crossed and please keep Loki in your prayers. He needs a little extra support at the moment!

Thursday, December 18, 2008

Loki falling off his surf board

Lounging on my surf board:



I am sooo asleep:



I have my first scratch on my face, my nails are growing too:


Almost falling off my surf board:




How sweet:







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