Sunday, November 30, 2008

Day 42: Six weeks old

Today, Loki is six weeks old. Overall, he continues to do fairly well. He is up to 1080 grams, or 2 lbs. 6 oz. His SiPAP remains on 15 cycles per minute, typically at 26% oxygen.

The other day, we learned that he has a moderate case of bronchopulmonary dysplasia (BPD), which is a fairly general term for damaged lungs. This was likely caused by the respirator, which he needed to breathe during his first four weeks out. The damaged lung tissue doesn't really heal, but healthy lung tissue will grow around. Thus, as he gets older, the portion of his lungs that is damaged will decrease. Most likely, he'll have stronger symptoms and need more care during his first couple years.

Although overall he is doing well, he just gave us quite a scare. All three of his vital signs - heart rate, breathing rate, and blood oxygen saturation - all dropped sharply at the same time. Patting his butt and rubbing his back didn't help enough. It turns out that his feeding tube had slipped out a bit, and was stimulating his vagus nerve, which is one of the main ones connecting the head and the chest. Such stimulation can cause all sorts of problems. The tube had to be pulled and put back in, which is not a huge deal. Nevertheless, it is not fun to see him like this.

You can see in the pictures how much he has grown and changed in appearance from his birth until now. But you can't see his behaviour. I've noticed that he seems to have much more coordination. He can better bring his hand to his face (where he likes it), and maybe try to take off his breathing mask. When lying on his tummy, he can lift himself up just a bit. Sometimes he lifts his head a bit. The biggest difference is in his eyes. Recently he began to blink, and they often look towards the source of sound. I suppose these little developments are among the joys of parenting.

Saturday, November 29, 2008

Day 41: Quick note

Today Loki supposedly lost 30 grams, down to 1040. But don't pay attention to the daily numbers; focus on the trend, which is upward. The other development, a positive one, is that the cycles per minute on his breathing assistance machine (SiPAP) were reduced from 20 to 15. This is a weakening of the machine, which means his lungs are developing well. Soon we hope to move to no cycles (CPAP), which is just a constant pressure of air with a little extra oxygen.

Help with MOV video files?

Does anyone know how to merge QuickTime video files (.MOV) and merge them into one? I've got a bundle of short clips that I want to make into one for YouTube. A Google search indicated that I'd need QuickTime Pro. Does anyone have that? Thanks...

Friday, November 28, 2008

Day 40: Thanksgiving

Today was Thanksgiving (technically it was yesterday since it is now 5:30 am on Friday). Thanksgiving is the American harvest holiday, in which friends and family gather for a large meal and express gratitude for the things for which they are thankful. Needless to say we have a lot to be grateful for this year. Feel free to skip the long list or bear with me if you like.

First and foremost we are so very, very grateful to have our little guy Loki join us in this world. He is such a strong, vigorous fighter. He continues to grow. He shows us that his lungs are getting stronger and stronger and so are his arms and legs: it can be a struggle to take his temperature as he pushes away our hands. We are tremendously grateful that Loki is as strong and wonderful as he is, and we are so happy to have him in our lives. We are looking forward celebrating the Holidays with him at home next year. How fun that will be!

Next, he would not be doing as well as he is if it was not for the absolutely amazing care at Alta Bates Hospital. So, I want to extend our gratitude to the staff at the NICU as well as at Labor and Delivery, which is where our preemie journey started. I believe we would not have made it this far into my pregnancy, if it was not for the dedicated care of Dr. Ahsan and all the other doctors and nurses there. And Loki would certainly not be doing as well as he does, if it was not for the very dedicated nurses and doctors at the NICU.

Another obvious "thank you" needs to go to our moms, who have been incredibly helpful during those first weeks of craziness. They made it possible for us to completely focus our attention on Loki's and my healing. They kept our household running very, very smoothly, which made coming home from the hospital everyday so much easier. It may seem simple to mop a floor, do groceries or prepare some food, but for us it meant the world. It really made a difference.

We are enormously grateful for our extended group of support: you all! Thank you so much for reading our blog, leaving messages, sending (e-)mails, calling us, preparing food, giving Loki gifts etc. Our live has been insane for quite a while now, and knowing that you all are out there, sending your thoughts, prayers and support to Loki feels just amazing! A specific "thank you" should go to our friends Sarah and Laureen who supported us those first hours during and after delivery.

Last, but certainly not least, I want to thank Loki's dad, my wonderful and dedicated husband. I don't think I could ever find enough words to express my gratitude for all his hard work and support throughout the past months. Especially since Loki has arrived my mood has not always been upbeat. It has not always been easy dealing with the aftermath of my own hospitalization; the insecurities of when he would be born, and if we would make the critical yet scary 24 weeks. The harsh medicine in my body that made me think the ceiling in the delivery room was rainbow colored and the physical and mental recovery from the c-section all added to that. In addition, there is the guilt of having such a micro preemie because my body could not hold him safely inside until he was developed a little further. Add to that the love and sorrow I feel for this wonderful tiny human being, the lack of sleep because I am slave to the pump as well as dealing with the hormones the initial weeks, and you can imagine I have not been the nicest person to the people around me. Dad has been very, very patient and supportive and I want to thank him for that. Without his love and support I would not be able to walk this challenging road.

So in just a few words; THANK YOU ALL!

Thursday, November 27, 2008

PS

Thank you nurse Annette for taking such beautiful pictures of our little guy!!

Day 39: Keeping the "O" Low

Today Loki reached 30 weeks total development. He gained just a few grams to reach 1020g, and is now 35 cm long. (That is 1 foot + 1 1/4 inches.) He has had the oxygen concentration from the SiPAP in the 23% to 28% range for at least 24 hours, and the cycles per minute were reduced from 30 to 20. The next step will be for him to go to CPAP, which pushes a constant pressure.

He has graduated up to larger "big boy" diapers. Unfortunately, there is not an intermediate size. He went from a tiny diaper, which made him look big, to a relatively large diaper, that makes him look tiny.

We've been meaning to mention that the little guy has a hernia! This is fairly common in preemies, particularly boys. For some details, click here. This may repair itself, but more likely it will require some minor surgery in a while.

Photos: Loki unplugged

Here's his normal view:



But then his face appears:



Poor guy... the straps for his breathing mask have pushed his ears and cheeks aside!

Wednesday, November 26, 2008

Day 38; Much better day

Today we were lucky, Loki and us. We had great nurses taking care of him, and that makes a huge difference. As you can see on the pictures he loves being swaddled. Although it is still searching for the right isolet temperature so he does not overheat, he is very calm and satisfied this way, except when he has pain in his tummy. He sometimes has a hard time processing his food; just like a big baby boy. He squirms, cries, turns bright red, squeezes his little cheeks with his hands and, if lucky, has a big poopy diaper. It is very hard to see him in so much discomfort and not be able to pick him up and comfort him. Usually it does not take too long before he passes whatever needs to be passed, and he is happily sucking away on his pacifier or feeding tube.

We also had a special visitor all the way from Wisconsin, with yummie, yummie Mexican food from a great restaurant in Alameda.

Loki reached a kilo, in fact he ways 1,016 grams today, hooray big boy! His IV is out, and the results of the Lumbar Puncture came back negative (no yeast infection traces found in his spinal fluid). He is done with all his anti biotics and in addition to fortified breastmilk he continues to receive vitamins, caffeine and now also some iron.

We continue to go for GROW!!

Photos: Loki says "Keep it dark and quiet!"

I like being swaddled tightly:


But can you turn down the lights?:


And keep it quiet? I am trying the sleep!:


Now I am happy:

Photos: Hospital grounds and views

Here's some shots of the gardens in, and view from, the hospital. I think it's quite nice!

View from one floor up. San Francisco is a bit to the left of the Golden Gate bridge:


The garden in the center is just for the NICU, which is off to the right:


This rooftop garden is just around the corner from the NICU:


Loki's room has a view! The University of California Berkeley campus is straight out:


And the hills are just to the side. I like to walk up that visible path:

Tuesday, November 25, 2008

Day 37: Breathing Fast

Loki showed us a new trick today: he can breath really, really fast. This, of course, scared me (Mom) as I was sitting at the side of his bed and saw his breathing pattern change. Because he had two unknown nurses (both of whom I was not incredibly fond), it took 3.5 hours before the PM nurse finally paid attention to it. X-rays were taken, but nothing showed up. And his blood gas was taken, yet nothing showed up here as well. The doctor explained it could be a few different things, including signs of an infection. As he is still behaving really well - he is active, has a good heart rate, and shows great oxygen saturation - we are going to assume the latter is not the case. What it can be, there's no idea at this point in time. Just in case, they may give Loki a diuretic (medication to help get rid of excess fluids in his body). Also, the doctor mentioned his heart looked a little large on the x-ray. When I asked what this could be his answer was "a gazillion things." However, he said, I should not worry about it. Um? I guess the doctor has not just become the mommy of a premature baby.

Overall, the day was a little rough, mainly because it has been several days in a row where we have had many new nurses, none of whom have worked with Loki before. Until today this worked out well. Somehow today's nurses were mismatches and caused a tense day for me in the NICU. I had a really hard time leaving, as I felt the PM nurse was not at all paying attention at important moments. However, at 9:45pm I realized it was time for some dinner, pumping and sleep. Fortunately one of his primary nurses will be there overnight!

Finally, we are very impressed with all the people reading our blog and sending us mail. It means very very much to us, including Loki, that we have such a wide support network. We are now receiving messages from family, friends, friends of family, family of friends, friends of friends, family of family, etc.

Thank you so much Senna and Symen. We are sure Loki will love the drawings, we certainly do. We will show it to him as soon as he comes home from the hospital!

Nurse Janet, wat goed dat jij Nederlands schrijft. Nu nog praten met Loki!

Monday, November 24, 2008

Day 36: Better and better!

Not much to report today. Loki appears to have gained weight to 980 grams. I think he'll hit a kilogram tomorrow! His breathing has been great. Most of the day, his oxygen was around 30% on the SiPAP with the last hours around 25%-29%. Although he had desaturations and bradies at the end of our visit, he had few throughout the day. Mom was able to hold him for a full 90 minutes with no problems, in fact his oxygen was at 22%-25%. Perhaps most importantly, as I said goodnight to him just a few minutes ago, I looked into his eyes, which were open, and saw relaxation, not stress. He seemed very content.

On pumping

This post will deal with a somewhat personal, or at least biological, issue. As Mom and I were mentally preparing for a preemie during the nearly four weeks, we thought about and discussed a number of topics. We were ready for having our baby in an incubator, and spending many hours each day at the hospital. But we were not ready for how much our lives - and especially Mom's - would be complicated by breast pumping.

Although we were born during the time when breast feeding was discouraged, it is now strongly recommended, particularly here in the NICU. The trick is that the capacity to produce is "use it or lose it." So beginning the first day of Loki's life, Mom began to pump. She now does it about seven times per day. This is every two to three hours during the day, and once in the middle of the night. The entire session takes 1 to 1 1/4 hours. It comes out to about 1/3 of her waking hours.

This means that Mom can't do anything that takes more than two hours. And she can't venture too far from our home and hospital. While the gear and supplies could be moved, with some effort, we've not tried this. Thus, there is no going out for a movie, running several errands, or a long dinner, or a hike, or an evening at a friend's house. I can get away more, and do. But it is a fundamentally unfair aspect of gender and biology. This is one more way in which Mom has been a hero.

Our freezer:

Sunday, November 23, 2008

Day 35; just sleeping and growing

Today no much news either, and no news is good news at this point in time. Although Loki appear to lose a few grams again, he was weighed on a different scale. He still looks to me as if he is growing every day. His face looks more mature and his legs are just a little chubbier. I had a chance to hold him again today. We cuddled for a good 45 minutes. Although Loki was not satting (oxygen saturation in his blod) extremely high, I heard some secretion in his airway, and he was very calm and sleepy on my chest. When he went back into his incubator, he was suctioned (which happens several times a day) and a whole bunch of slimy secretion came out of his throat. His saturation went up immediately afterwards!

Dad bought a freezer today to store all the milk I am producing. Yay! We can have food in our freezer again! There seems to be some confusion about Loki's feeding: He does get breast milk with a fortifier (extra calories) mixed in. However, he still receives it through his OG (orogastric) tube in his mouth, through which it directly goes into his stomach. He does not have the swallow/suck coordination developed as expected in older babies. Hopefully in three or four weeks we can start practicing breastfeeding. (They call the first practice recreational breastfeeding as it is not really for nutritional purposes yet.)

Thank you for continues sweet comments. We love opening up the computer and see if any new comments came in!

Saturday, November 22, 2008

Day 34: Going for fat

Just a quick note here. All is well with Loki. Now that he is off the ventilator and over the infection, the next goal is to make him fat. He no longer receives any nutrition from IV. Instead he is getting 15 mL of Mom milk - fortified with some bonus calories - every three hours. While that is 120 mL per day, Mom makes about 750 mL per day. You should see our freezer!

Friday, November 21, 2008

Photo & video: Slurping on the pacifier

Here, Mr. Loki has only the nose plug for breathing. But he sure likes his pacifier, which is very large compared to his face.

Here's a video of the slurping. He really gets going about half way through.

Day 33; pee and poop

The big event of the day was holding Loki again during the morning hours. (Thank you Margaret for making that happen.) Although this was, as always, a little scary to make the move from isolet to chest, he did quite well throughout the move. It took a little time to get him all comfy against my chest, but once settled with his mask in the right spot, he snuggled up, making little sounds here and there. For quite some time he enjoyed listening to me quietly singing the song I used to sing for him when he was still inside womb. After the first excitement, his oxygen saturation was pretty steady. However, making a huge (for his size) poop in his diaper made him desat again. It is a lot of work for a little guy like Loki to get all that leftover food moving.

Loki has been on similar Oxygen settings as yesterday, and that is a good thing. We made day five on the SiPAP, something we are very grateful for. Also, yesterday marked his 29th week of total development, so he is getting older. His appearance is starting to change and he is looking like a much bigger baby now (considering that he was only 610 grams when he was born). His face is much rounder and his cries are now audible when the isolet is closed. Big, big boy!

He still forgets to breathe sometimes (apnea) which causes bradies (low heart rate) now and then. Although this continues to be somewhat scary, they are part being preemie, and we will continue to see those for quite a bit longer. A little pat on his booty or stroking his back or chest usually takes care of it.

As of tonight, Loki's only nutrition comes from fortified breastmilk (my milk mixed with extra calories) through his g-tube. This milk combined with the caffeine he gets through his tube make a nice Cafe Latte for our feisty boy. He has one more antibiotic to finish on Nov. 24th, after which he will no longer need his IVs. We really hope the nurses can stretch his IV use until that time, so a PICC line would be out of the picture.

He weighed in today at 963 grams, almost a kilo, which means another milestone in sight. And while changing his diaper, he peed all over my hand, as well as over his own IV wrapped wrist. His pee shot strait up in the air when I moved his diaper aside. Not sure what he is trying to tell me: Pooping and peeing all over me!? For now, I experience his excretions as a blessing. They are signs of him growing and doing real baby things!

Thursday, November 20, 2008

Day 32; Going steady

Today was a good day in the NICU. Loki has gained 36 grams again and now weighs 936 grams, almost a kilo. He has been sleeping most of the day with his oxygen steady between 29%-32%. So, our little guy is working hard on growing his tiny body and learning how to breathe. In addition, he is working his vocal cords, which sounds absolutely adorable. Margaret said today he is turning into a big boy, even knowing how to complain when no procedures are performed. At these moments he really likes his pacifier.

The big news of the day is that he will be weaned off his IV feeds, and in a few days solely receive breast milk. This makes me (Mom) especially happy and proud, as we can start making a dent in our many bottles of milk. Loki needs his yeast meds for only five more days, and his antibiotic only one more day. This means he will not need any IV's after Nov 24th, given that all goes well. Hopefully the nurses will be able to find enough workable veins to continue regular IV lines, so we do not need to put in a PICC line for those last days. Apparently some children need to go back on the ventilator when receiving a PICC line, as the morphine they get to deal with the pain interferes with their breathing. Fingers crossed once again, despite the fact that this means a few more ouchies for our little trooper. Before an IV is placed he receives a little bit of sugar, which apparently helps dealing with the pain (must be the endorphins being released by all that sweetness). Today he actually slept through the placement of an IV. The only response he gave was a little desat.

Finally, as said above, Loki is using his vocal cords more and more, and his soft squeaky voice is becoming louder. It sounds like music to my ears!! I am so proud to be the mother of this incredibly cute, sweet and strong little boy!!

Wednesday, November 19, 2008

Dad's perspective on the birth

I wish to write my view of the later pregnancy and birth in detail before I forget. So if you seek only an update, you can skip this and go to the update right below.

(Future-)Mom was ordered to bedrest on September 25, at 21 weeks gestation. For almost three weeks, she was at home, but got out of bed a few times a day. I helped as much as I could, but still went to work. For me, this was tough, but manageable.

On the afternoon of October 12, just as I was leaving for a walk, her water broke at only 23 1/2 weeks gestation. We rushed to the hospital in a panic. I carried her to and from the car, and placed her into a wheelchair at the hospital entrance. At this time, I was sure that we were losing the pregnancy, but of course did not say so. But I did not know then that labor can often be delayed through drugs and total bedrest. The staff gave Mom a couple injections, and her contractions gradually stopped. While there, Mom was in an unpleasant condition, with her head full of drugs and her body stuck in bed. She is a real hero for tolerating that.

I spent most of my waking hours there and was using all my available time and energy to support her. However, because we live so close to the hospital, I felt comfortable going home for brief breaks and to sleep. At the hospital, we were told all sorts of stories about labor being delayed for weeks. I told Mom that's what we could do, but in reality I was not quite so optimistic.

After five days, Mom felt worse, with more frequent pains in her belly. I spent the night there. The next afternoon, while on a break at home, I called my mother, who agreed to come here to help. Just a few minutes after ending that telephone call, I received one from my wife. "I think you should come back now," she said. On the way over, I gave a call to our friend Sarah, who had agreed to provide support during the delivery.

When I arrived in the room, it was chaos. Five or six staff members were busy preparing Mom for the Caesarian section surgery. Although we had previously been told that we would have a few hours notice before the surgery, she was being rushed in. It turns out that she had been having contractions for almost a day, but these were not being picked up by the monitor, and she was fully dilated. I was given a set of "scrubs," the loose clothing to wear over my clothes during surgery.

A quick aside on my mental condition: My greatest fear when I had learned that my wife was pregnant was not about being a father. It was about becoming a father. I was convinced that I would feint during the delivery, leaving Mom alone and sending a potentially symbolic message about my abilities or presence. But in the hospital, we had quickly learned that a C-section would be needed. "Well, at least I won't need to be in the delivery room," I had said, assuming that Mom would be under complete anesthetic and I would wait outside. She corrected me: It turns out that she would get a spinal anesthetic, be numb from the chest downward, and remain conscious. And I would be there during the surgery. This was even more intimidating.

Thus, while waiting outside the operating room, I told a few of the attending staff that I may feint. Inside, I took a seat on a stool next to Mom's head. There was a curtain at her chest, so we couldn't see the action on the other side. The anesthesiologist kept an eye on me, and had an iPod on shuffle, starting with Amy Winehouse. ("You Know I'm No Good.") It was very reassuring to see Mom's regular obstetrician, who had been called in despite not actually being "on call" at the time. I held Mom's hand and stroked her hair. Her body shook from the anesthetics and the nerves. Fortunately, I was able to tune out the voices and sounds of the surgery, and to focus on her. And my adrenaline must have been flowing, as I was not the least bit dizzy.

After only about 15 minutes, I was told to walk to the corner to see my new son. I had no idea what to expect: I had never seen a preemie, and was worried about significant physical problems. While it is obviously a thrill to first see one's child, I was a bit shocked. His flesh was bright pink. He was quite long but very skinny. He made no sound. His head was large compared to the rest of his body. And most disorienting was that, as he breathed his first breaths, with his lungs not yet ready for air, his thin chest pumped far upward and then inward, as if he had no ribcage. While these characteristics were all normal for his stage, I had not seen them before. I must have looked like a mess, as I all the staff kept offering me a chair, and asking me to sit on the floor. But I was not light in the head whatsoever, instead just an emotional whirlpool.

A few minutes later, I followed our new baby and several staff up to the neonatal intensive care unit, leaving Mom behind. On the way, I saw Sarah, and grabbed her. I needed company. Once in the NICU, I watched as the new little guy was cleaned up. A bit in shock, a nurse took my hand, said, "You can touch your son," and placed it against his tiny head. I then moved my hand downward, and he held the tip of my finger.

I knew that his world had been turned upside down, sooner than he perhaps had expected. Because I wanted him to know that we were still there, I asked if I could play his music box. A gift from Holland, we had been playing its melody of "One little, two little, three little duckies" on Mom's tummy a couple times each day. As I turned the handle, all the action in the room seemed to stop. I was a crying mess, and I think a couple of the staff members were tearing up too.

I stepped outside the small room while they stuck him with IVs and tubes. After chatting with Sarah a while, the doctor came out. "Everything seems fine, but his chin is shaped funny." Chin? That was about the last thing I expect to hear about. Besides, his health was a greater priority in my mind than his appearance.

Back downstairs, Sarah, our friend Laureen (who just arrived), and I chatted with Mom in the recovery room. A couple hours later, she was wheeled up to the NICU on her bed to meet her boy.

Day 31; 1 Month Birthday

We are very excited to celebrate Loki's 1 Month birthday with lower oxygen settings (mid thirties to mid forties) and a cup cake card and wind-up dinosaur (also a first for our little dude), from nurse Janet, who makes sure Loki is the most spoiled little guy around. Dankjewel Janet!

We still need to scan the beautiful pictures nurse Amber took of Loki with his pacifier in his mouth, but thus far have not found the time to open the closet and attach the scanner to our laptop. We promise, it will happen.

Loki had a few rough moments today, but has been handling it quite well overall. An other attempt to draw some spinal fluid failed, poor guy, and he had a very uncomfortable eye exam, to check whether the yeast was growing in his eyes; this is not the case!! In addition, he inhaled some water through his SiPAP prongs, which apparently happens with these machines. It is like diving into the swimming pool and forgetting to breath out as you touch the water, so all the water gets into your nose and lungs. Loki panicked, and so did I (mom). He turned very red, cried his little squeaky cry and pushed his hands against the mask in an attempt to take it off. He is a smart little boy who seriously tries to avoid discomfort. Anyhow, after the initial scare; as I did not have a clue what was going on, nurse Margaret came in and emptied out the prongs. He felt much better.

It seems Loki has lost some weight again over night, although he was weighed on a different scale, so we may need a new baseline. He is a hair below two pounds again. We celebrated two pounds with Sushi, so we'll come up with another nice meal when he hits it again. Also, we are celebrating Saturdays, because it is his chronological addition of a week, we celebrate Wednesdays because it is the gestational weekly birthday. We celebrate every time he needs less oxygen, and we'll continue to celebrate his monthly birthdays. Simply said, we celebrate our son's existence in our lives and his strong, feisty nature. He is such a trooper!

Again, thank you all so much for your support through messages, emails, phone calls etc. We do truly appreciate it; it brightens our day to know so many people from so many different corners of the world are thinking about Loki Sky!

Tuesday, November 18, 2008

Day 30

Unbelievable but true: our tough little Loki is a month old tomorrow!

He weighs 953 grams, up only 8 grams from yesterday. No blood cultures since the one from Wednesday have yielded any indication of infection. Thus, he is probably clear!

As of today, he made his hours on SiPAP, and when I left this afternoon after an eight hour day in the hospital, he was doing really well. Over the past night and today during the day, he has needed oxygen support between 48%-55%. During the night shift, he had quite some bradies, which were much less frequent during the day. The "please be quiet" note on the door and the dimmer lights really appear to help him sleep and be well.

When Amber started her shift at 3 PM Loki made a sudden change for the better, and for the hour that I was there, he moved down comfortably between 35%-38%. At the same time, his breathing and heart rate looked very good as well. Amber and I were almost too scared to be excited, as it was such a sudden change for the better. No matter what, we know he can do it, even though he may need a break back to the ventilator later. However, it is looking better and better!!! FINGERS CROSSED!!

Monday, November 17, 2008

Day 29: So far, so good!

Loki remains on the new SiPAP machine instead of the respirator. At first, things did not look good. But the indications improved over the course of the day. The oxygen concentration was reduced from the 60% area to around 40%, and the frequency of brady arrhythmias and desaturations decreased. It seems that he does better with a (tiny) pacifier. And even if he does have to back on the respirator, if we can get 48 hours away from it, it will be a valuable break for him.

Loki's weight increased quite a bit, to 941 grams. That's 2 American pounds plus one ounce. Some of this is likely water weight, which he could lose. He may even be given a diuretic drug to help him in that process.

Loki is tolerating touch, but is does not like light and sounds. There is now a sign on the door to keep things quiet. It really seems to help, as he just wants to sleep.

Sunday, November 16, 2008

Photos: Tubeless and holding by Dad

Days of tape on his face and then its removal made his cheeks red and puffy. Mom thinks he looks like a hamster here:



Day 28: Three positive developments

Today is the four week anniversary of Loki's birth. The morning's gas analysis of his blood indicated that it was time for him to be removed so the respirator! We were surprised, considering that he is still recovering from his infections. But the staff felt that the negatives will be outweighed by the positives. So the breathing tube is out, he is on the SiPAP again, and he now has a little mask. We asked the staff to take a photo while he had nothing connected to his face. His cheeks were puffy and red from the removal of the tape that had held on the tube.

Then, I (Dad) held him for the first time. I had been apprehensive about doing so because I did not want to bump his breathing tube. But with that out, there was less concern. And the staff feel strongly that skin-to-skin contact with parents is beneficial for his development. So the nurse moved him to my chest, where he wiggled, relaxed, and dozed off. Obviously, it was quite an experience for me.

And while he lay there, I heard him make sounds for the first time. He has been unable to do so with the breathing tube. Even though the SiPAP is actually louder than the respirator, I heard him make some squeaks, gurgles, and moans.

Let's all keep our fingers crossed that he is able to stay on the SiPAP and not need the breathing tube again.

Friday, November 14, 2008

Day 27

Loki has grown to 890 grams, which is just shy of 2 American pounds. That is about 10% behind average, at least for a fetus. His blood cultures are still coming back positive for the staph infection - at least form yesterday's blood - but they have been negative for yeast. He is still getting two different antobiotics.

His respirator settings are low for pressure and breaths per minute, but still a bit high for oxygen concentration, around 30 to 35%. This appears to be related to all the handling he's been getting. He just wants to be left alone!

The handling included an attempt o get spinal fluid that failed, and a heart echo scan. The latter indicated that the infection has not affected his heart, and that his PDA heart murmur has indeed completely closed. Loki's feedings are being increased from 5 to 6 mL per session, which is also a sign of recovery.

Pictures

Eyes of the world?:
Mom comforts:

The chicken position:

Day 25: Messy diaper and race car

Today was delightful because, as I lifted his tiny booty in the air to switch old and new diaper, Loki pooped all over my hand and his new diaper. A thin, dark substance was projected onto my hands, blanket, and some of Loki's own body parts. As the nurse was busy helping another baby, Loki and I hung out for a while, covered in poop, his little skinny legs high up in the air. He did amazingly well throughout this event, with no desats. In fact, he had some high levels of oxygen saturation, which makes me wonder if secretly he was proud of what he had done. In any case, this mom needed help getting the little guy all cleaned up. Nice practice for home!


Loki got yet another gift from his secret Santa. As we walked in yesterday we found his first race car on the "display" shelve above his isolet, next to his beautiful pictures. Thank you once again Santa Janet (we assume?).


After a good and quiet morning, Loki had a renal (i.e. kidney) ultrasound in early afternoon, to ensure his infection is not settling somewhere around his kidney or bladder. He was very unhappy with the situation and actively moved his body, in an attempt to avoid the ultrasound probe. Afterwards, he was unhappy for quite a while, showing a significant number of desats. Most of them were self corrected and did not need any help from the ventilator. In general Loki's oxygen support has been between 26-38 percent, which is lower than it has been, so we are happy about that.

His platelet count came back higher than yesterday, which also is a good sign as the yeast is not eating its way through his system quite as much. In fact, they yeast blood cultures have not come back positive in a while. Fingers crossed.

A few more tests will follow in order to determine whether the infection is harbouring somewhere deeper inside his body. If this would be the case the most likely treatment will be whatever he has now, but then longer! So, let's hope that the nasty bugs are more or less gone, so he can grow and grow, breath and breath and be held over and over and over again.

Thursday, November 13, 2008

Quick note regarding Wednesday

I apologize for the lack of post yesterday. Loki is now 28 weeks total gestation plus life. He is holding steady. His weight has not really increased for a few days. A blood culture from a couple days back came back positive, so we have to assume there is still some infection. Loki will be checked to see if the infection has impacted his brain or spine. The former is just another ultrasound, but the latter requires tapping into spinal fluid! That can be quite painful, but the staff promises lots of anaesthetics. He has been having few brady arrhythmias and blood oxygen desaturations, but he has been preferring to be left alone in the quiet to sleep it off.

Nurse Janet took some great photos of him, and we hope to get the originals uploaded soon.

Wednesday, November 12, 2008

Day 24: Holding again

A very tired update from mom, as dad is with Loki in the NICU to wish him a good and calm night.

The highlight of the day was another kangaroo cuddle with Loki this afternoon, with help of Margaret (thank you again!!). It was so wonderful to be able to hold him again, snuggle together and connect with my beautiful baby. Although getting in and out of the incubator was a little rough on him, and he had a little bit of a desat and bradie when the ventilator tube disconnected (poor little boy needed to breath on his own), Loki did really, really well. Afterwards he needed much less oxygen support for a little while, which according the doctor and his nurses has everything to do with the fact that he feels happy from being held. Proud mommy. Hopefully dad soon will have a chance to hold Loki as well.

Overall Loki was a little less energetic today, but clearly getting over his infection. He had another blood transfusion, and our little pale guy turned bright red again! His platelets are still looking good and his blood culture (which shows infections) came back negative, so hopefully the infections are gone, or at least growing very, very slowly.

I am starting to get to know this little dudy better and better, which is very exciting. I am getting a better sense of what he needs and how he feels. Fortunately the staff very much believes in mothers' intuition, which makes me feel an important part of his team. They take my concerns seriously, and more than once have confirmed that I need to share my thoughts about how Loki is doing, as it may give them important information. It all adds to my admiration of Alta Bates NICU staff.

Have a good night, and I promise, soon more pictures!

Tuesday, November 11, 2008

Day 23 Looking up

Today Loki clearly feels much, much better! He has responded well to the platelet transfusion and his count is up from 47,000 to 112,000. The platelets help him fight his infections. Although the blood draws still come back positive for infection, he looks so much more comfortable, and his oxygen saturation as well as his heart rate look much more normal again. All and all, we feel the space to breath again.

Feeling better also allows us to talk to him a little more, and we started reading nurse Janet's nighty night book (Thank You Janet!!). We will be reading that to him every night, as long as he can process the stimulation of our voices, so he will grow and grow and grow, until he comes home and then he'll grow some more!!!

Blessings to all!!

Monday, November 10, 2008

Day 22

Thank you all so much for the sweet thoughts and responses!

Loki is hanging in there despite the fact that they also discovered a yeast infection (which apparently takes longer to treat). He has been more stable today. His oxygen support is up significantly, but with that his bradies (slowing down of heart rate) and desats (lowering oxygen saturation) have been less frequent. This made sitting next to him and touching him with my hands less stressful than yesterday.

The infections are located in the PICC line. This means the line needs to come out, and for the upcoming week our little guy will have regular IV's going into a variety of body parts, as he receives his medicine and nutrition through these lines. The doctor warned us it would be a rough week for Loki, as he will be poked with needles a lot. Poor little guy. In the mean while, he truly is a trooper. His doctor said he is working his way through this "vigorously and feisty".

The good news; he gained weight, despite the fact that his little body is fighting these bugs. So we are proud and happy that he now weighs 856 grams, which is approaching 2 pounds, yey!!!

Loki tolerated being touched really well today; I was able to sit with him and have my hands on his little booty and tiny head without major desats, in fact, at times his saturation got significantly higher, a sign that he is happy. Loki is developing some extra fat under his chin, which almost makes him look chubby :-), very cute.

Hopefully tomorrow will be better than today, and the day after tomorrow better than tomorrow!!

Many thanks to all of you for your prayers and positive thoughts!

Sunday, November 9, 2008

Day 21: Rocky 24 hours

As exciting as yesterday was during the day, in the evening and today throughout the day we have been presented with some bumps in the road.

During the day Loki's settings on the oxygen he needed were higher than usual. Although this in and of itself does not necessarily provide information, I (Mom) did not feel comforted when the nurses told me he was doing fine. Something did not feel right, despite the fact I was still a little bit on a high from holding him, and I still am! In the evening primary nurse Amber told us Loki did not seem to be his old self; he did not seem to feel well. Throughout the evening he had more and more bradies and desats. Thanks to Amber's quick response, a series of actions were undertaken to figure out what could be causing this change.

Unfortunately Loki has a staph infection, often caused by a bacterium on the skin, which easily can get inside the body due to many blood draws etc. In addition to having had a hemoglobin and platelet transfusion and two antibiotics to deal with the infection, he also had another brain ultrasound to make sure the representation of symptoms was not caused by a brain hemorrhage. Fortunately, this came back good. In fact, the little bleed in the germinal matrix noticed in the beginning seemed to have almost disappeared.

Also, as his last blood gas test did not come back as good as expected, he had another chest x-ray, and they found his lungs were not expanding as much as they like to see. This could be caused by being sick, or maybe they changed the vent settings a little more quickly than he could handle. In any regards, they changed the settings so that he has a little more help expanding his lungs while breathing. In the morning they will do some more blood work to make sure that his kidney is functioning okay, with all the medication in his body. Poor little guy!!!

Of course the past 24 hours have been exhausting, scary and sad. It is difficult to see Loki go through all these procedures and changes. He is such a tiny, little, handsome munchkin. However, we feel so blessed with the nurses he has. Both Margaret and Amber so clearly know our little guy, and seeing them being so attuned to what is happening with him, gives a lot of faith and comfort.

We know Loki is a strong fighter and he will get past this, but a few extra prayers wouldn't hurt.
Hopefully tomorrow we can take a step forward again!

Saturday, November 8, 2008

First holding photos



Friday, November 7, 2008

Holding (2)

Of course I need to say something about holding my little guy for the first time. It was an unexpected event, which made it even more wonderful. Initially I was going to hold him yesterday, with one of Loki's primary nurses. She has tons of experience and despite the respirator, felt comfortable having me hold him for a little while. It takes some work as you can imagine, getting the little guy out of his incubator keeping all the tubes and wires in place. However, yesterday and today we had a different nurse. So, I figured it would not happen until our nurse was back in on Saturday. Luckily, I was wrong.

As I finished up pumping milk for Loki (I am months and months ahead of the game here, as he takes only 4cc's every three hours), nurse Bonnie asked if I wanted to hold him. I assumed she meant sitting next to the isolet and have my hands on him. Nope, she really meant HOLD him, yay!! I sat down in a rocking chair in Loki's room and my beautiful, tiny son was placed on my chest. That was amazing!!!! It felt so cozy, warm and snugly to have his bare skin against mine. He did really well, with only a little extra oxygen; he had very consistent saturation. Although I felt like it only lasted ten minutes, we actually sat together for almost an hour, just quiet, snuggling and hugging, his little hand gently moving on my chest. Wow, what a wonderful feeling! I know we can only do this once in a while, but I cannot wait till next time!

Day 20: Holding!

Today, Mom got to hold Loki against her chest. He was gently placed there as she lie down, with some blankets to keep him warm. Photos up in a few hours.

After his unexpected removal from and return to the ventilator, the settings on it were high. So for the last few days, the machine has been doing more work. Today those settings are down to where they were late last week and over the weekend.

He is up to 775 grams. He is clearly more chubby now, especially in the face. A little math showed me that he needs to gain about 2% per day to be on track to normal weight by his due date.

A different image for Loki

Sorry for the lack of posts yesterday. All is OK as far as I know. Mom will call me with today's report, and I'll post in a couple hours. For now, though, I'd like to say a few things about developments in the news this week from the perspective of a new father.

I have been engaged in news and policy for some time. These things take on a strange new importance as a father. I can no longer fall back on mere cynicism and think, "To hell with it all!" It is now Loki's future too.

My reaction to the electoral changes this week are not simply partisan politics. And it's not even primarily about policies. My feeling today focuses on perception and image, which are more important than one may think.

As an American who occasionally travels abroad, I have been in an awkward position in recent years. If you haven't done so yourself, it is difficult to perceive the dramatic shift in recent years in how people around the world view the US. (I highly recommend reading this and that.)

Loki is a dual American-Dutch citizen, likely spending much of his childhood in the Netherlands with an American father. I don't want him to be asked the accusatory questions as I have, with their mixture of disbelief and disgust. In my experience, Europeans truly want to like America. I look forward to my child being asked about, and associated with, a shining city upon a hill, a beacon of opportunity, diversity, engagement, justice, and freedom - not a dark cloud of confrontation and aggression looming overhead.

Despite all that his tiny body faces physically, I have much hope for Loki's future. Now, it's just a bit more.

Thursday, November 6, 2008

Our amazing support system

Here a quick post from Mom, finally, between pumping, napping, and, yes, taking a bath to deal with some soreness in the milk-makers. I would love to tell you about the craziness of the last weeks from my perspective (which for part of the time has been colored by some pretty nasty drugs), but need to keep it short.

Despite the shock of Loki coming into our lives so very, very early, I am so incredibly grateful for who he is. He is such a beautiful and sweet little person, and I cannot get enough of looking at him and touching his tiny body, while he is asleep in the isolet, or while he is attempting to look around. What a blessing it is to have this wonderful human being in our lives. Being his mommy is better than I would have ever imagined, despite the fact that the circumstances are far from ideal, and even very scary at times.

Also, I want to thank you all for the amazing support you have given. I am simply blown away by all the sweetness we are receiving consistently. I cannot tell how much that means to me. Even though you may not hear from me, I do very, very much appreciate every single attempt to communicate with us and help us out! Without this support it would be much more difficult moving through this difficult time.

Finally, I feel we owe a special thank you to the staff at Alta Bates Hospital. From the minute we entered the hospital, most staff has gone above and beyond amazing care! We are very happy with the devoted and wonderful care Loki is receiving at the NICU, and the support Dad and I are receiving on a daily basis as well. I walk in plenty of times feeling sad and overwhelmed; there is always a staff member asking how I am doing, and ready to listen. In addition, Loki's nurses are very, very skilled and impressive! Each nurse has her strengths and we are very happy to have the team we have. It is so hard to leave the hospital and say goodbye for the day, but knowing that he is in such good hands makes up for some of the pain. All nurses give this extra bit of attention to Loki or us, for example, by their enthusiasm about Loki's cuteness, giving advise on how to communicate with our little guy, leaving a nightly-night book, or making Dad his first birthday card from Loki. (shown below) (Dad's birthday was on crazy day three, and seeing the card with Loki's picture and his tiny handprints was a wonderful symbol of the best gift ever for him.)

Needless to say, this is a very challenging time with many ups and downs, but the extra care of all the people around us makes a difference! Thank you folks!

Book for Loki:



And a card for Dad:


Wednesday, November 5, 2008

Tube back in

Overnight, Loki did not do well on the SiPAP breathing machine, and had to be put back on the respirator. The worst part is putting a tube down his throat. That simply sounds quite unpleasant. But it went more smoothly this time than last. A specialist doctor looked in his throat, and it looked OK. Now we hope that the trouble maker stops trying to pull out the tube long enough for his lungs to strengthen.

Video: Mom changes a tiny diaper, upside down

Mom has changed many diapers. She's changed Loki's a few times. Here is the first time she did it while Loki remained lying on his stomach. Nurse Margaret helps.

Day 18: A breathing incident and change

Today Loki reaches 27 weeks of development. I just realized that he is finally in the third trimester.

Last night, while we were all at the hospital, Loki began to have many brady arrythmias (sudden and brief drops in his heart rate) over a period of just a few minutes. The staff concluded that his breathing tube had partially slipped out. Because they were planning on perhaps removing the tube today, they went ahead and pulled out the tube. Instead of the respirator, he is now on the SiPAP breathing machine. This is what he was on for a few days, a couple weeks ago.

Last night (or early this morning), Mom called in to check on Loki. He was not doing so well on the SiPAP. We are about to go in for the morning report, and will update you all when we know more.

Day 17: Heart seems OK

Loki's heart problem appears to have went away. I was not present for the morning report, so I can't provide much detail now. I am unsure, for example, if they will try the third course of the drug. But heart surgery seems unlikely for now. I remain cautious, as his heart murmur went away once before.

Loki will be kept on the respirator for a bit more, just to be sure.

He gained a bit of weight, and is now at 720 grams.

Tuesday, November 4, 2008

Video: Busy hands

Here, Loki explores sucking a finger while pulling his ear. Then he continues with open eyes. Cute.

Day 16: Hoping for a healthy heart

Today Loki got a heart ultrasound scan to see if he still had the heart problem - the PDA - or if the drugs have worked. The results are encouraging but not yet definitive. The technician who performed the scan did not see the PDA, but cautioned that a neonatologist doctor will need to review the results to confirm. If this turns out to be true, then Loki won't need surgery, and may be able to be removed from the respirator. And even if the PDA is still there, I am still encouraged. Perhaps the first two courses of drugs shrank it so that it is hard to see, and maybe a third course will finish the job.

We should have some information midday tomorrow. Keep your fingers crossed.

It seems there is a balance to be achieved with the respirator and other assisted breathing equipment. Although it is good for his lungs for the respirator to be on a weak setting, he is burning much of his calories through breathing instead of putting on some weight. It is not as clear-cut as I initially thought.

Monday, November 3, 2008

Day 15: Heart update

The heart is what's on our mind the most. Loki has received two treatments of the drug. The third one is not always tried. He will get it only if the staff believes it will help. It is unclear if the first two treatments made progress. The experts will examine him tomorrow.

He are also beginning to have some concern about his weight. He's still around 680 g, two weeks after being born at 610 g. He is, however, eating again.

OK, here's the photo


Sunday, November 2, 2008

quick photo

We are still trying to get a good shot of his open eyes. This one is a bit blurry.


Saturday, November 1, 2008

Two Weeks! Details on murmur

Today Loki is two weeks old. The current concern is regarding his heart murmur. A murmur is an irregular sound, and is just a symptom. The actual problem is a patent ductus arteriosus (PDA). In this, a baby's ductus arteriosus fails to close. The duct is a short connection between the pulmonary artery (which sends blood to the lungs) and the aorta (which sends blood with oxygen to the body). With the duct still open, blood that shouldn't mix mixes, resulting in inefficient circulation.

This is first treated with a drug, indomethacin. This constricts the arteries, hopefully choking supply to the duct, which eventually dies off. Loki had a PDA earlier, and responded to the drug, but the duct seems to have reopened. The medical staff is trying three courses of indomethacin. He presently on his second course. The drug treatment works in about three-quarters of cases. If he fails to respond to the drug, the duct will be closed surgically. Apparently, in the range of preemie surgery, this is a fairly routine procedure. It is done in his normal room and takes only 20 minutes. Still, it is heart surgery on a tiny dude.

A consequence of the surgery would be that it will probably set him back somewhat. Loki will be weaker as he recovers, and will need the respirator. So the breathing tube will not be removed unless the drug works.

He is getting another blood transfusion today. I am hoping that this will make the drug more effective.

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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