Saturday, January 31, 2009

cell phone found

Cell Phone Issues

Quick note, I (mom) lost my cell phone yesterday. It may still be in the car somewhere, but since we do not have a working light in the car, I couldn't find it yesterday evening. Most of your phone numbers are on there and some of your messages. I am not too worried yet, but just as a warning, if you leave a text message, I may not see it too soon. If I indeed cannot find it, I'll post here again and ask you to email me your number. oops! (Message for JM, we are all set with food etc. Thank you so much for your offer!! )

On a more important note, Loki's surgery is confirmed for Monday the 9th at CHO, unless an opening pops up this week. There is a slight, slight chance Dr. Dissandro (I believe this is his name), the urologist, will have space and time on Wednesday. In this case we will indeed move to UCSF. We should find out more on Monday.....

Loki weighs 2900 grams, so over 6 American pounds. He is latching on better when breastfeeding, but unfortunately according to whatever measurement technique we use, he never gets more than approximately 10 ml's every feeding session. That is so hard to imagine, because he is sucking away so nicely. Oh well, we keep working on it!

He had a sponge bath and massage. He loves his little legs and back rubbed, got that from his mommy. Unfortunately he cannot have a real bath because of the nephrostomy tube, so no floating around in warm water. Fortunately the massage makes up for missing some of that.

Today was better with the particular nurse during the day. Thanks to all your sweet comments and Margaret's advise, I was able to take a different approach. During the evenings we have been lucky. Even though there is not much consistency, Loki has had great nurses. So, spending more time later in the evening and getting our little guy's room ready during the day is working okay for now. However, it does not feel the same as having our familiar friends at Alta Bates!

Friday, January 30, 2009

Sleepy peeps

Loki is up to 2810 grams. We will likely authorize one bottle feeding per day. We are hoping that at this may help Loki learn to breast feed. We don't want to bring Loki home while he relies on his feeding tube, and if this is the only thing that keeps him in the hospital, we may have to. The occupational therapist is not too supportive of a bottle ones a day because she is a little worried about his suck, swallow, breath coordination. However, she only observed him suck for approximately three minutes. He has to learn somehow, and we'd rather find out whether he has a more profound issue that requires help, while we are in the hospital with nurses around and a monitor.

Nurse Margaret stopped by from AB today. She brought yummy food again! It is always a treat to have her visit. She certainly empowers mom to make the right decisions.

Also, yesterday mom ran in to Theresa, who is one of Loki's nurse practitioners at Alta Bates. It was great seeing her and having a chat in the parking lot. She always shows a lot of support for whatever is going on!

Here are a couple photos of me and the little man.

Sleepy like me:

Thursday, January 29, 2009

Turning blue (and grey):

Loki had his nephrostogram yesterday. They put a dye in his kidney to examine exactly where his urine goes. Not much information we got from this, however it should provide the urologist with useful info, apparently. Loki seems to be getting more anti-biotics, but the nurse informing me in the evening was unsure why exactly this is. I did not have a chance to speak to the doctor, so hopefully we'll find out on Thursday. The nurse administered the cherry flavored anti biotics through his mouth. Initially Loki was intrigued by the taste, but soon turned blue, then grey and stopped breathing. His heart rate and oxygen dip followed to the fifties and sixties for a bit. Pretty scary stuff.... He obviously couldn't really process the thicker liquid going into his throat and started choking. He needed some extra oxygen and he needed a quick suctioning of the throat and mouth to clear it out. Although it was very scary and distressing to see him go still, blue and stop doing what he is supposed to do (breathing and pumping his blood through his entire body), it was useful to see this happen so pronounced at the hospital. I know what to look for when this happens at home. Unfortunately we do not have the extra oxygen laying around the house.

Loki moved to a pink, big boy crib. He has his blankies, dollie, mirror bear and a mobile right there with him. The mobile has little birdies fly around above his head, with a variety of songs playing. He is now big enough to want to look around when he is awake. For example, after he chokes on medicine and then is super, duper alert for a few minutes due to the extra oxygen received.

Right before the choking debacle Loki and dad had some time to cuddle up together. Loki was so very, very comfy in his daddy's arms. I will upload the pictures soon.

We have not heard a clear confirmation, but rumor has it that the surgery may be on the 9th of February at CHO. We will see..... If we stay put, I do hope we are a little bit luckier with our day nurses. We have had great luck during the evenings, but the day nurse we have four days in a row, every week, just makes me feel insecure about almost anything I do. She can be friendly, but for whatever reason is very inconsistent with her friendliness. At least, towards Loki and I. Just little subtleties that make it hard to relax around her. E.g. when I held Loki and closed my eyes just to shut out the unpleasant surrounding, she gave me a lecture on how I cannot hold him and sleep because I may drop him........ Parents all around me are suctioning their babies' noses and throats with the actual hospital gear (not a bulb syringe), yet she is upset when I change his pulse oximeter, making it clear that this is a nurses job. For those who do not know, a pulse ox is a little ankle band easily removed ( I started doing this very early on when he was a tiny little preemie), and if done incorrectly it will just show a wacky pattern at the monitor and beep. Nothing intrusive, nothing difficult. Sometimes she is nice and says goodbye to us when she leaves, sometimes she only says goodbye to the people around us and just walks out. I am trying to be as nice as can be to not make matters worse, but at times I just cry because I feel incredibly insecure about what I can and cannot do and feel like a bad mom at times. The lack of sleep tends to make me a little more teary anyway. She is great with the other families around us, and can be friendly with us, I just have a very hard time figuring out what I do wrong. Weird though, I was pretty excited when I saw we were matched with the child she primaries last week, because I thought she was a thorough and good nurse. Guess I rub her the wrong way... oh well. In the end this will only be a few more weeks or a month or so, I hope.......

Wednesday, January 28, 2009

Surgery un-news

It turns out that much of the previous post was not certain. I am reporting most of this information third-hand, from the specialist to Dr. Tennenbaum to Mom to me. It seems that there are scheduling problems at UCSF. Because Loki's situation is not urgent, to the surgeons, his surgery there could be delayed a week or two. But, if we were to have the surgery at Children's Hospital Oakland, it could be no sooner than the 9th of February.

Moreover, Dr. Tennenbaum made a case that CHO may be a good place for the surgery for different reasons than UCSF. She believes that CHO is better at responding to more "routine" problems such as post-surgery infection. The risks with the surgery aren't necessarily due to potential problems with the area of work (i.e. kidney). Instead, they are more likely to be recovery issues.

So, we may stay at CHO, although we will also be put on a wait list in case of cancellations. This means we may have to move to UCSF or go into surgery at CHO without much notice. The problem with waiting longer is the increased risk of infections due to the nephrostomy tube. The longer the tube is in, the higher the risk of infection. In case of infection, the surgery needs to be postponed. All and all, a very frustrating situation. Mom is very disappointed especially. The two main day nurses that work with Loki for most of the week since they are the other baby's primaries, are not necessarily the best match. This was not a big problem knowing it would only be for another week or so. The prospect of a few more weeks in the same spot is very frustrating to mom.

Mom's plan to do three visits over a thirteen hour period today did not work out. She awoke at 5:30 AM after 5.5 hours of sleep, pumped, went in for the 8 AM breast feeding practice, came home, napped for twenty minutes, returned for a 1 PM bath, and then stayed until 7:30 PM. Fortunately, she was able to get to bed by 9 PM.

Tuesday, January 27, 2009

Surgery news

Loki's surgery will be next week, on Wednesday the 4th or Friday the 6th, most likely over at UCSF Children's Hospital in San Francisco. The surgeons will not know whether to perform a pyeloplasty or a cutaneous pyelostomy until they get inside.

Loki went up to 2700 grams today. That is about one ounce shy of 6 pounds.

His eyes were examined again, and his ROP is progressing mildly. Although not quite a step in the right direction, it is only a very slow step in the wrong direction. According to Dr. Tennenbaum that is a good sign at this point in time.

Nurse Blanca, who works at both Alta Bates, paid a surprise visit to Mom and Loki after a meeting. As a nurse practitioner, at Alta Bates she served as the consistent lead of the medical team, and something of an assistant to the neonatologist doctors, who were different every so many weeks. It's always good to see a familiar face!

Mom will try a new strategy with practicing breast feeding. Loki is fed every three hours, and she must synchronize her practice with that. But it seems he gets tired. So Mom will try to practice at every-other-feeding: 8 AM, 2 PM, and 8 PM. This may mean two or three trips from home to the hospital, and a long day overall. I am very impressed by her dedication.

Monday, January 26, 2009

Loki's "Aunties" (photos):

Loki is chugging along. He is up to 2670 grams, which is almost six pounds. We were happy to have Libby as our evening nurse again : Not just because she is now a regular and known face, but because she also puts in that extra bit of extra effort, the personal touch.

And we were very happy to have Alta Bates, Nurses Amber and Rhea (sp?) visit from Alta Bates. They seemed quite happy to see Loki as well, and said that he is quite missed back at the old NICU. We look forward to the reunion in October, and until that times........ we hope we see Loki's wonderful "aunties" now a then.

Rhea, Libby, Amber, and Loki:

Rhea and the Dude:

Mom, Amber, and the star of the show:

Sunday, January 25, 2009

Our own primary (photos)

Loki is growing a tiny bit everyday. While folding laundry I bumped into his first outfits and could barely believe how small they were. I will bring them in sometime to take pictures. Loki is 2620 grams and is fitting easily in newborn clothes (see the outfit Nana?). He looks so much more solid and it is much easier to handle him. Of course he is getting stronger as well, and his head is no longer flopping around like a Raggedy Ann doll. He continues to prefer holding his head to the right side, and almost consistently moves his head from left to right when prone (tummy). It is amazing to me to see him lift up his head and make the turn. Sometimes taking a break mid move, planting his face straight down on the mattress, one of those reasons why stomach sleeping is no longer advised ones at home.

Yesterday (Saturday), we had our own primary for the very first time since we are at CHO. Her name is Libby, and we asked her to primary last weekend. She works pm shifts in the weekends, and we really, really like her. She is friends with Lisa's family which makes it feel even more comfortable, and she just seems to give Loki, and us, that extra care we are so used to at Alta Bates. We are hoping Loki has her again tonight.......

To answer the FAQ about how I, mom, am doing. I am very, very tired, as you can see on the picture below. I am very grateful that dad is doing as much as he does to keep the household running, because I spend a lot of time in the hospital. It is exhausting to be the hospital day in day out, CHO is almost always noisy and the light is bright. There is no calm space to withdraw and really take a rest. However, it is just a little too far from home to easily go there and get stuff done between breastfeeding. Although Loki is doing much, much better with the breastfeeding when he is awake and hungry, he is usually somewhat asleep two out of three times. This makes breastfeeding frustrating at times. The problem is that he has no time to get hungry again as they put him, understandably so, on a tight schedule. When I am there, most day nurses over the past few days leave us be. I appreciate this in general, but they tend to to step in mainly to sort of tell me what I should do different: start earlier with the breastfeeding, never mind he is still asleep and shows no hunger signs; don't push his feeding tube back into his nose by myself, despite the fact I told them 20 minutes ago it was really coming out; use a different kind of cream for his diaper etc. etc.

Summarized, I am done with this hospital experience and want to have sleepless nights at home with our little guy waking us up when he is hungry or gassy grunting and groaning.

Loki and his beloved musical bear:

Chubby cheeks again (in real life the cheeks look less chubby by the way):

Oversight of Loki's room:

Sleepy baby:

Sleepy mommy:

Saturday, January 24, 2009

No news is frustrating

Apparently the specialist faculty met today, but did not yet make a decision about Loki - or at least we've not heard of a decision. Perhaps Monday? In the end, a delayed decision won't impact when any surgery occurs, as Loki's lungs are becoming stronger each day, and the doctors will likely want to take their time before the surgery for this reason. But of course, we are anxious to know.

The good news, or at least the not-bad news, is that Loki's urinary tract culture has not come back positive for infection after 48 hours.

He has put on some weight, and is up to 2600 grams, which is almost 5 pounds + 12 ounces. That's as heavy as he has ever been, except the day before his surgery, when he was very puffy with excess fluid.

It appears that Loki is getting better at breastfeeding. Based on a weight measurement, he took in perhaps 28 mL this evening, whereas a full feeding is 50 mL. However, this measurement is potentially inaccurate for a number of reasons.

Another baby shower was held in Loki's honor, this time in the Netherlands. We heard reports and saw some photos that Oma Heleen, Tante Marieke, Tante Hanneke, Kyra, Maaike, Greet, and possibly others? attended. This is very cool, and we are extremely grateful to the organizer(s) and attendees. We are looking forward to hearing all about it on the phone and when Kyra is here in the US in a few weeks!

Friday, January 23, 2009

Maybe UTI

Our little guy may have a UTI (urinary tract infection). We hope not, although we were warned that this is a common issue with the nephrosotomy tube. It would mean an increased dose of antibiotics though. Fingers crossed we can just hang out until the next surgery.

Loki is behaving pretty well. He loves being held and cuddled and has his few alert moments during the day, where he looks around to see what is going on. He is working very hard on breastfeeding and actually latches on quite well. It is unclear how much he takes in, but I guess that is a guess for every new mom. Unfortunately he does not have that extra reserve that newborns have, so it does matter he gets is full feeds.

Dr. Sandhu stopped by for a quick visit today, Loki feels honored with all his guests. We continue to miss Alta Bates, but are getting used to being at Children's. I would be very worried about how to make the different culture work for an extended period of time, but if it is just another week or so, we will be fine. I must say, we have had a wonderful evening nurse for a few days now, and the day nurse, whom we will have for the fourth day in a row, is really good as well.

Interesting though, despite the fact that we are at the more specialized Children's Hospital, nobody really knew how to take a urine sample from the nephrostomy tube. They needed a print out to make sure they were doing it right. Our nurse did a great job, but it says something about how uncommon this is. It does make me want to go to UCSF for the actual surgery, just to make sure we will have enough people who have seen the surgery happen and know what to expect. Even though yet another move and getting to know new people yet again, this time without knowing any of the doctors, will be quite an adjustment.

I have some weird anatomical issues, causing for the bizarly early birth of our little dudey. But I must admit that our baby boy wins the odd anatomical abnormalities circus! Geeee!!!

Thursday, January 22, 2009

Cuddling with Margaret

We were lucky again yesterday, Nurse Margaret came to visit us after her shift at Alta Bates. She brought amazing food and lots of cuddles for Loki. Loki got lucky because he was awake and got his feeding when Margaret was there, so he had a chance to cuddle up with her. It is so wonderful to have our primaries visit and be able to pretend like we are in the comfort zone for a bit of the day! I must say though that we are getting used to being at Children's. It will never feel like Alta Bates because of the many reasons I have brought up before, but we have had some great nurses take care of Loki. Since we are now paired with the baby next to us, who has some solid primaries, we have the same nurse for the third day in a row during the day. That feels much better.

Already full with milk after the breast? That's the question:

Maybe a burp will come out:

Safe and sound in Margaret's arms:

On another note, we heard that the baby who moved from Children's back to Alta Bates, has been moved back to Children's again. The story is quite scary and I am sharing it with you, just so everybody can understand why a simple cold means serious danger. The baby was released from the hospital around the due date, after having been there for 2.5 months. A few days later he was readmitted because of a cold virus (which happened to be RSV). After about 1.5 week he got so sick that he needed to be reintubated. Because of his severe illness he needed to be moved back to Children's. He is so sick that they do not know whether he will survive. So please, please please, continue to make sure to let us know when you have the slightest sense of feeling off. The littlest cough to adults, or even kids, can mean a life threatening situation for Loki. I hate to keep bringing it up, but knowing this mom and her baby brings the reality of how fragile our little guy is all too close to home. Loki was born at a younger age, and his lungs are in worse shape. We may seem radical, overly protective or paranoid, but in the end it is rooted in a realistic threat. Please forgive me and try to understand when I ask you to wash your hands, maybe stop by on a later date or don't hug or kiss you hello and goodbye. It is not you, it is my love for our handsome little boy!

Incomplete answers

Although the specialist doctors met today, they will not make any decisions until a larger meeting Friday. For now, the summary is this: Before too long, Loki will need a pyeloplasty, the reconstructive surgery that I mentioned previously. The remaining questions are (1) whether to perform another surgery for a temporary solution that will allow the pyeloplasty to be delayed, and (2) when to do the surgery/surgeries.

You may recall that the urinary output of Loki’s kidney (the ureter) is blocked at the ureteropelvic junction. The urologist (specialist of the urinary tract) does not think it is an obstruction exactly, but that part of the ureter – which is a tube-shaped muscle that pushes urine down – is not working. In a pyeloplasty, the bad part is removed and the remainder is reconnected to the kidney. He was not at all worried about the surgery directly; he is confident of its success. The concerns revolve around the impact of deep anesthetics on Loki’s weak lungs, as he’ll need to be out for 2 to 3 hours. Even once the surgery is done, a different catheter (drainage tube) will be inserted, and not removed until the doctors are 100% sure that everything is working. We could take him home with this catheter still in place, if he has recovered in all other ways.

An option is to perform a cutaneous pyelostomy in order to allow more time for Loki to strengthen before the major surgery. Compared to the pyeloplasty, this is not as invasive or intense. This sounds like a stronger version of his current nephrostomy tube. With a cutaneous pyelostomy, the ureter is sent to the skin, and urine will just drain out of Loki’s side without a tube. Strange! But whatever works…

Regardless, these will likely be done in San Francisco.

Wednesday, January 21, 2009

Sweet Aunties from Alta Bates

Loki got lucky today: two "aunty" nurses from Alta Bates stopped by. It was wonderful to see them, both for Loki and for Mom. Finally we have some of Loki's friends on photo!

Loki weighs 2510 grams today, and took in approximately 8 mL during breastfeeding. Slowly but surely!

Here is Nurse Janet:

And Nurse Annette:

Dr. Tennenbaum whom we know from CHO and Dr. Uzowic whom we met at AB:

Dr. Tennenbaum was at Loki's admission at Alta Bates. She remembers Loki from that day. She was is very impressed with how big he is, and how well he is doing despite having his kidney issue.

Tuesday, January 20, 2009

No change in ROP, no laser surgery yet

Loki gained an ounce, an is at 2480 grams today.

The only news is that the eye doctor did an examination, and Loki's ROP remains at stage 3. Thus, there was no laser surgery today, but it is not ruled out for later.

I misspoke yesterday: The meeting of specialists to determine the next steps with his kidney is Wednesday.

In the absence of more news, I give a couple photos.

The new digs:

Nobody here but me. And a musical bear. And a giraffe doll thing. And a rubber duck with a snowboard.

MY pacifier.

Monday, January 19, 2009

Surprise visit from Alta Bates

Look who came to visit our little guy.... primary Lisa. It was sooo wonderful to see her!

Video: Slurping again, and three months.

Today Loki is three months old! He has gained a bit of weight two days in a row, and has been completely off all breathing support for 36 hours.

Tomorrow, the eye doctor will do another checkup. There is a chance that, if he needs it, Loki will have the laser surgery then. Scary!

And the next day, the specialists from UCSF and Children's will meet and discuss how to fix Loki's kidney.

Below is a video of Loki aggressively slurping on his pacifier. To see how far he's come, you can see the first pacifier video, which is nearly two months old.

Sunday, January 18, 2009

Something familiar

Loki's cannula came out. Dr. Uzowic was working at CHO today and it was so nice and familiar to have her make such a bold decision. We will see if he is able to sustain his rock steady saturation and heart beat. Although his breathing is much better than it was a few weeks ago, he does sometimes breathe fast and shallow. If he is able to stay off for approximately two or three days, I think we are more confident he is really able to do this, and not just using his reserves. Our little guy looks so handsome with only a tube in his nose (and all the wires and nephrostomy hanging on the bottom of course).

We had a great nurse during the evening (Libby). The nurse taking care of the babies next to us was Lisa's mom. Libby and Lisa's family have known each other for a long time, and since Lisa was one of our amazing primaries at Alta Bates this felt so much calmer then some of the days before. I asked her to be a primary, so hopefully we will see her again. Although Loki has had some nice nurses, he is seen by another person every shift. We have seen only two nurses two times. It is challenging to figure out how the assignments work (or who the the charge nurse is). Today I will try to find out a little bit more about that. It makes me a little nervous for people not to know him at all. There is no consistency for him, and one of the reasons the doctor's found out it was so sick was because of his primaries recognizing his changes so rapidly. Something tells me that if I am worried here, it will take quite a bit of convincing for them to do something about it.

Loki did pretty okay on the breast today. He only desatted two times (while receiving no oxygen) and he recovered very quickly with a little bit of help. He is a very eager sucker and I am very hopeful he will learn how to breastfeed. Just a little nervous whether he will get it down quick enough. So, practice, practice, practice. This means I am there at someone odd hours (with less sleep at night), as I do need a nap during the day in order to make sure I can produce enough milk.

Saturday, January 17, 2009

Regular Nasal Cannula

PICC Line in Loki's head:

Looking up at Daddie:

Two handsome men:

Loki went from two liter per minute high-low flow nasal cannula to two liter regular nasal cannula! Our little trooper!! Since he was extubated for the second time, he has been showing amazing saturation. He had two desats yesterday during the almost 11 hours I was there. Both when I was breastfeeding him, and it was only into the low 80s. This also was the case the day before. None of his up and down, up and down. he basically sats all day long within 90s. The only reason his monitor dings is typically when he gets a little tachipnic (fast breathing). I would nor recognize him by just looking at his saturation (yet another reason why it is important to look at his face rather than the monitor :-). So, needless to say, we are very, very proud. He possibly "just" turned that corner, being 37 weeks old now. But maybe, he was indeed collecting that fluid longer then we thought.

Although we have been luckier with our nurses, I guess they are cautious who they assign to Loki these days, I don't think we ever will really get used to being at Children's Hospital. We had a very sweet nurse during the day, and we had a nice nurse during the night, whom we had a few days ago. The atmosphere is very different though. Some of which has to do with the urgent situations and the level of sickness the children here are dealing with. This, combined with the physical layout, makes this hospital very, very depressing. There are constantly crying parents (I also cried for two days straight), and because all the rooms are open you can see the really sick babies. No fun, no fun. It makes it a nightmarish experience at times. I have not met one parent I somehow connected with, and I have no idea about whether there are any groups for parents or not. In general, information is not really given, unless very specifically asked. The culture is very different. When nurses walk past me in the hallways (which look remarkably industrial), they typically do not say hi or smile. This maybe because some of them know I have spoken out, but I doubt that the huge number of nurses all know who I am. I think the environment is just less conducive to being nice and warm. Finally, although the hospital is supportive of breastfeeding, none of the nurses help when I am struggling getting our little guy to work along. Only one of the two pumping rooms has water, luke warm, and there is no dish soap, or place to sterilize the pumping gear other then going to a different floor. There is very limited space to store milk, and the lactation consultant does not have a very warm, or even friendly, attitude.

We miss Alta Bates, all our nurses and other staff so very, very, very much. What a NICU paradise that is. And truly, NICU's are not paradise by any stretch. Oh well, we have a great Doctor and at least this is making us want to go home, really, really bad! At Alta Bates nervousness of being home alone with our little guy without the help started to take over. Here at Children's we just want to leave.

On a more positive note, Loki is battling his way through the situation. This little guy is so incredibly strong. It continues to be very, scary though. He has lost weight for the past few days due to loosing his excess fluids, but also because he has been on a much more restrictive diet. He is now up to full feeds (50 ml with the 24 calories human milk fortifier). In addition, he drank approximately 4 mls straight from the breast one time! He is quite the sucker, when he is awake!

Friday, January 16, 2009

Quick update, and ROP stage 3

Loki continues what seems to be a good recovery from the first surgery. His weight went back down to 2470 grams. But because he is probably still losing more fluid than he is taking in, that 40g of weight loss is not necessarily a loss of flesh weight. He is still producing quite a bit of urine, which has become increasingly clear.

Loki's nasal cannula is at 2 L/min and 21% oxygen, which is where he was before the incident and surgery. His milk feedings become greater each time, and at midnight tonight will be full: 50 mL milk and no more dextrose. For that reason, his PICC line will likely be removed soon.

Loki has completed the two antibiotics that he was receiving by IV, and is now getting amoxicillin - a very common antibiotic - with his milk, as a preventative measure.

The largest news today is that Loki had an eye exam, and his ROP (the common eye disease among preemies) is at stage 3 (out of 0 to 5), which is a bit worse than previously thought. He may have laser eye surgery soon.

Besides all this medical information, I can say that the little dude was a little cranky today. I don't blame him. He's been through so much.

We apologize for the lack of photos. Things have been nuts. We'll take the camera in tomorrow.

Thursday, January 15, 2009

Yesterday, Better Day

Yesterday was a better day. Loki was alert, relaxed, suckling on the breast and looking so, so much better. He is just so incredibly cute.

However, everybody knows I am that mom. I saw more hand washing throughout the day though. Especially the nurse who worked with Loki. Towards the end of the day she even started using the anti-bacterial gel I put at his bed side. Hygiene is still much less meticulous than at Alta Bates (e.g. putting dirty diapers on a napkin in the crib right above babies' heads, not wiping wires when they fall on the floor before putting them back in the crib etc.). I spoke with a variety of people about this issue (nurses, charge nurses, nurse manager and some of the doctors) and am still going to try to talk to one of the two directors. An email went out from the nurse manager to all her staff to remind of hand washing. In addition, a sign was posted above Loki's bed to warn about the spread of germs and wash hands meticulously. It is a bit of a shame they just post this at Loki's bed because as the issue is quite pervasive. Other kids are as important to their parents as Loki is for us. But, it is a start and at least people will be reminded when working with him.

It was helpful to see my worries confirmed by nurse Amber who visited Loki yesterday. I am not just a mom who is freaking out. I was so happy to see her, and it was great to see Loki respond to her. He was very alert and when I needed to eat a quick bite, they were able to cuddle up together. Loki was looking around with his cute little eyes, so much more relaxed than he has been for the past days. His face is much less puffy, even less so then over the past few weeks. This could confirm the theory that the issue was slowly building up; part of his chubbiness was probably fluid build up. It has been great to see all these AB people and talk to them on the phone. It relieves a bit of the sadness. And fortunately, the day nurse started warming up towards the end of the day, whereas the evening nurse was just really nice and good.

However, there seem to be some logistical problems which the nurses cannot necessarily help. For example, anti bacterial gel is not located within hand reach from the cribs/tables/isolets. This does not encourage people to use it when they are working at the bedside, as they have to walk a few steps. It doesn't seem much to do so, but when you are working with a child and the crib is open, you can't walk away. However, The doctor who dealt with Loki when he was so sick at AB, stopped by and emphasized that the infection rate at Children's is not any different from Alta Bates. Let's hope so!

Graciela stopped by as well, and when I needed to pump, she sat next to Loki's bed and sang songs to him. It was wonderful to see her, and it was great to have somebody there with Loki when I was away from his bed.

The nurse whom I personally addressed the second night spoke with me when I bumped into her at the cafeteria. She was quite upset that I had told the nurse manager and charge nurse, and kept repeating she did not have anything contagious. It took some patience from my part, and after explaining several times it has nothing to do with anybody being contagious at this particular moment, but with safe practices in general, she seemed to feel very guilty she had even brought it up. I told her I understood she was very upset and frustrated with me, that I do not enjoy being the trouble maker mom (I am a human being and REALLY like to be liked). However, I hoped she understood I want to be able to hold my baby in my arms safe and sound for the rest of my life. The conversation ended with her offering to primary Loki. We both agreed it was smart to think about that first!

Anyway, we are a few days into our Children's Hospital adventure and I am hoping it won't take much more time then a week or so before we can move to the next step.


Loki is recovering fairly well, and here I'll provide some details.

But first, Mom, Loki, and I send our enormous gratitude to all those who have provided words, actions, thoughts, and prayers of support. We never felt alone. And I imagine the positive vibes etc. helped Loki along.

Loki today is 2510 grams, up from 2470 yesterday. That is about his weight 4 or 5 days ago, but then it was artificially inflated by his fluid retention. In fact, on Sunday he was 2700 grams, which was 150 grams more than the previous day. Obviously, that wasn't right.

Loki was removed from the nasty ventilator last night. Unfortunately, the staff had tried earlier, but he wasn't yet ready. Thus he had the breathing tube pulled and put back in. He then went to nasal cannula, first at 4 liters per minute, then down to three. This evening, this was using regular air (21% oxygen). I suspect tomorrow he'll be at 2 L/min and 21%, which were his settings before this mess. It took him some time, but he's now recovered his voice, which he temporarily lost from the breathing tube.

Today, Loki began to receive breast milk again. He is now getting about half the amount as before (25 mL every 3 hours), and the other half of his calories from dextrose (sugar). Also, Mom was able to practice breast feeding with him again.

His electrolytes (especially sodium and potassium) are back in balance.

Mom will post tonight or tomorrow regarding her continued experience at CHO (Children's Hospital Oakland). I can say that she has raised a stink with a number of key staff members, including the head of nursing at the NICU. She is ruffling some feathers, but it is in the best interest of Loki and all the babies.

Also, Nurse Amber from Alta Bates visited, and was very happy to be able to hold Loki. He has quite a large fan club. I hope he feels or knows, now or later, just how much care is felt by how many people.

Wednesday, January 14, 2009

Love from Alta Bates

Wow, today was very hard and I believe I must have cried for hours and hours, despite the fact that Loki is starting to feel better. Until late in the afternoon Loki looked as miserable and sad as I have ever seen him. One of the nurses today kept looking at the monitor, and since he was satting just fine she kept mentioning how great and happy he was. Bizar, because if she would have taken one peek at his face, she would have known he was feeling extremely miserable. His little face crunched up in a silent cry. I could only stand there paralyzes and wondering if there was any chance in the world I could convince Doctor Sandhu (director of Alta Bates NICU) to take him back. I was deliberating with Mascha, whose visit was extremely supportive, if there is any way we can have a 24/7 team available just to keep an eye on Loki.

This NICU is absolutely awful in my opinion. I knew Alta Bates was one of a kind, but seeing the distinction this clearly is just completely bizar. Some of it may be preference. For example, I prefer nurses talking to Loki when they are about to hurt or disturb him. Or at least comfort him when he is upset. I guess when you look at the monitor and not at the baby you may miss the fact that a baby is actually in pain or sad. Weirdly enough barely any of the nurses at CHO talk to the babies. The lights are bright, there is a lot of noise during the day, and the kids are moved around, poked by needles and often not at all comforted. Compassion is not a concept in some people's dictionary. But then again, some nurses are okay.

Another pretty serious issue; the hygiene protocol is not followed by several nurses AT ALL!!! Noses, faces and equipment are consistently touched without hand cleansing and then Loki is handled, his blood is taken and lines are arranged. This is not just annoying, it is dangerous. I can imagine it is hard to always remember, although Alta Bates nurses do not seem to have that problem. However, almost consistently forgetting is ridiculous at a place with very sick, tiny babies. I asked the respiratory therapist if she could please change her gloves before using a heal stick to draw blood, as she was just hanging up the phone. She walked up to Loki without paying any attention to him, just grabbing his foot, while on the phone and then hanging up. Mascha and I looked at each other in disbelieve. The phone is used by different people and she actually would get involved with his blood stream without cleaning her hands. Fortunately during the last shift we had a nurse who was on top of hand washing.

There are some positives though. The doctors are really, really great. And, Loki was extubated a few hours ago and seems to be doing well on 4 liter high-low flow with oxygen support in the low and mid twenties. Hopefully he will succeed. His blood gases and electrolytes are good. He was laying on his tummy and seemed much, much more comfortable then earlier in the day. Maybe in a few days he will start his feeds again. Other good news, he may have the next surgery within a few weeks, if his kidney starts picking up the work well again. Although SF would be a ways away from home, I would prefer him to have the surgery at UCSF, so we can leave children's. The doctor performing the surgery would be the same anyway, and my thinking is that it can not really be worse then here. Maybe I am jinxing myself though!!

The very best parts of the day, Loki and I received lots of love from Alta Bates today. First, Dr. Sandhu stopped by this morning to see how Loki is doing. Annette, one of our wonderful primaries at AB all of a sudden stood behind me. She was there to pick up a child for a transfer back to the NICU (oh my, am I jealous). I immediately broke down, again..... She brought a very, very sweet card for Loki made by Janet (of course :-) and signed by many of the staff. The card and Annette's hug really helped. Magic, the RT (respiratory therapist) was there with her and checked our our little guy as well. Dr. Joanna, who first dealt with Loki when he started getting sick over the weekend, called to check in on him, and said she would stop by sometime tomorrow. During evening round Dr. Anna Uzowic was present. She had Loki for several weeks very recently, and it was just great to see her. Margaret came for an extensive visit. As soon as she was there Loki really, really calmed down, and so did I. We had dinner together at the Cafeteria (which is actually better than at AB NICU). It was so wonderful to see her and get some of her ideas on how to help Loki, and myself, feel calm in that crazy environment. Blanca stopped by, which is amazing to me. She is incredibly supportive and like Margaret, listened to my worries and hefty complains (sorry ladies). It must be hard hearing me talk about CHO the way I did, they work together a lot with this group of people. Misty, our AB social worker called me back with some advise on who to talk to (I called her completely in tears). And finally, we received a message from one of our favorite moms at the AB NICU yesterday evening and I saw that one of our other favorite moms called as well!!

Writing this, I realize I am profoundly touched and impressed with the level of support coming from this one place!! WOW! Alta Bates folks you will never be forgotten. (Janet, of course you can come see your little friend, I know he misses you tons and tons, and so does his mommy.

Well, long, ranting message, mommy style :-) Not rereading cause it's time for bed and I am really tired. Apologies for length, incoherency, mistakes etc.

Tuesday, January 13, 2009

Quick note from mom

First if all, I cannot describe in words how relieved I am about the surgery. We are not done yet with this scary, scary situation, but this step went well. The past few days have been incredibly difficult and I seriously felt like I had landed in hell. I was scared and worried when I was hospitalized myself and we were trying to keep Loki inside. This was even harder. I am so very much in love with this strong little boy, and seeing him go through so much pain and such a challenging situation is absolutely heartbreaking. Fortunately he seems to be doing okay right now.

Our departure from Alta Bates Nicu and its staff has been really hard as well. Never thought I would feel homesick to a hospital, but I believe that is how I would describe the situation. Obviously the doctors and specialists at Children's Hospital are amazing, but oh my oh my do I miss our wonderfully skilled and sweet support system at Alta Bates. Having had to leave so abruptly has shaken us up quite a bit. Fortunately the support from there has not stopped with Loki's transfer. I can't explain how grateful we are for this. Thank you, Thank you, Thank you to all of you.

Then, as a little treat today we opened the cards and gifts from the "Loki Blessing" today. WOW!! I am blown away by all the cards, gifts, letters and wonderful thoughts (I watched most of the videos and photos). We are so truly blessed with all the support and love that just keeps pouring in from everywhere. I believe this makes the difference in Loki's recovery and our ability to manage life as it presents itself to us these days. In adition, gifts, mail and comments on the block keep arriving from Holland and all over the US. Gee, what can I say? I know Ducth, English, some German and Turkish (Cok Gusel (sorry spelling is wrong)). But truly, I am speechless!


Success! With caution, of course...

The surgery appears to have been a success, at least so far. The catheter (drain tube) is in, and draining urine (which is initially bloody, as expected). The surgeon tried to push the catheter all the way into the ureter (urine output tube from kidney) but it would not go, confirming the theory of a blocked ureter at the ureteropelvic junction (UPJ).

Loki is waking from his general anesthetic, and has given a shot of morphine to control any pain. He is on a ventilator, which was needed to assure breathing while he was anesthetized. If his breathing is strong, then he will be removed from that in a few hours. Mom sits by his bed.

One big change is that the nephrologist and urologists (one here, one at the University of California, San Francisco [UCSF] hospital) are now leaning towards performing the real surgery - to truly fix the kidney - sooner rather than later. I have not heard why they changed their minds, as they originally planned to wait weeks, but perhaps the surgeon saw that his kidney was large enough to work on.

The advantage of this is that it may result in him coming home less late. As long as he has his drainage tube, Loki won't leave the hospital. Of course, this may make us worry even more! Also, he would be transferred to UCSF for this, and I suspect that he would then remain there until he's ready to come home. Although that is another top-flight hospital, it takes about an hour to get there by transit and 40 minutes by car.

For now, the electrolytes (sodium, potassium, etc.) and other chemicals in both his urine and blood must be monitored closely. The sudden removal of this blockage can cause the concentration of them to swing rather dramatically. However, the staff did not seem too concerned about this. And fortunately, the doctors planned to give him an arterial catheter - a process that had been difficult - while he was unconscious, allowing easy blood samples without any more pokes.

This mess is not over, but it seems that one hurdle has been crossed. We send our kudos to the hospital staff, and to Loki, the strongest baby imaginable.

Quick note: in surgery

About an hour ago, Loki went in for his nephrostomy. He should be out in another hour. I will try to post the results as soon as I can, but these often these situations make it difficult to break away with the computer.

When I get more time, I'll write more details. For now, I'll describe the one risk that may come up during surgery. The catheter (drainage tube) is inserted with a firm wire initially inside if it. Once the wire is removed, the tip of the tube coils like a pig's tail, allowing the tube to stay inside the kidney. Normally this allows the surgeon to try a couple pokes, if needed. Once it is in right, the wire is withdrawn and the tube coils. But Loki's kidney is so small that the part of the tube that coils, when it is straight before the wire is pulled, is longer than his kidney. Thus, he will put it in part way, and then withdraw the wire as he finishes pushing in the tube. This means he has only one shot to get it right.

More info, as it it, and I, are available.

Monday, January 12, 2009

Day 85: Kidney diagnosis and surgery

Dear family and friends,

Today has been a long, difficult, stressful day, but we finally have a diagnosis and prognosis for Loki.

The short summary: Loki's only kidney appears to be producing urine, but not sending it out. This will require surgery tomorrow in order to achieve a temporary solution, an extended stay at a different hospital, and more surgery later.

The full story: In the late afternoon, Loki was transported to Children's Hospital Oakland, which is just perhaps a mile or so away. They have a level of specialist expertise that Alta Bates does not. He got a kidney ultrasound, a nephrologist (kidney doctor) was called in, and a urologist (a doctor of the urinary tract) was consulted by phone. It seems that his one kidney is producing urine, but that the ureter - the output tube from the kidney - seems blocked.

If this is true, the long-term solution is surgery in which that tube is repaired. This can be done a few different ways, the most common of which is grafting from other tissue. Sometimes a stent - a little tube to help hold up and open up the ureter - is used.

The problem is that his body is presently too small for this. The temporary solution is a nephrostomy, a surgery that he will receive tomorrow. Essentially, a drainage tube will be inserted into his kidney. For the next few weeks, his urine will just drain out this tube from his back, into a bag. Loki will need to be put back on the old ventilator, with its nasty breathing tube, for the duration of the procedure - although this will be a smaller, softer flexible tube. He will be put under general (full-body) anesthetic. But the surgery does not require a big opening in his gut. Instead, it is performed by monitoring his body through interventional radiology, using real-time imaging, sort of like a continuous X-ray or ultrasound, during surgery

If his ureter is, in fact, blocked, then this procedure will almost certainly take care of the problem, and is not likely to cause other negative side effects.

Before the surgery, the medical staff needs to get a two catheters (deep IVs) into his blood system: a PICC, which he had weeks ago but became infected, in order to delivery nutrients and medicine near his heart; and an arterial catheter, from which blood can be regularly drawn. Getting these in is not easy, particularly given Loki's chubby arms and legs, which have recently swollen even fatter with his fluid retention. When we left, he was being poked and prodded. The PICC actually entered through his head, which required part of his cute hair to be shaved off. It was very hard to leave our little man in the midst of this, but we need some sleep before tomorrow.

Furthermore, we are not in the clear yet. Until the surgery, there is significant concern about his low sodium and (especially) high potassium. Now that the PICC line is in, his nutrients (mainly the sugar glucose) can be delivered more centrally, and thus in higher concentrations. This will help his nutrients normalize.

Unfortunately, it is extremely unlikely that we will be able to bring Loki home with his nephrostomic tube, and it is quite unlikely that he will return to Alta Bates. We are sad about this. We had grown attached to the old NICU and particularly its great staff and (relatively) cozy feel. While we may warm up to Children's Hospital staff, the facilities are much more sterile and unwelcoming. And even though it is not far from our home, a five minute drive or a ten minute bike ride is very different than a three minute walk.

Tomorrow will be a tough day. I'll keep you updated the best I can, but I am unsure if Children's Hospital has wireless access. But Loki is our little fighter, and I remain optimistic that he will persevere.

A quick note regarding the baby shower

Today, I attended a baby shower for Loki while Mom stayed in the hospital. It was certainly strange in a number of ways: Dad was at the baby shower but not Mom; the baby is already born; the baby is in the hospital having problems; etc. But it was an extremely rewarding experience for me, and I believe for Mom and Loki as well, despite their absence. Nevertheless, Loki continued to live up to his troublemaker namesake by choosing today, of all days, to ask to go to a different hospital. I wish I could have stayed longer, and Mom very much wishes that she could have been there (but knows she made the right decision).

It was very encouraging to be reminded of what a strong network of support we have. Some of the statements during the circle were extremely moving, and will not be forgotten. We would not be functioning without the help and support of those here in the bay area, as well as those in Indiana, the Netherlands, and beyond.

It was also heel nederlands (very Dutch) to see those who were able to stay for the beschuit met muisjes, the traditional Dutch snack for celebrating a new baby.

I still have quite a few of the "party favors," the photo of Loki which I printed up for all the guests. If you forgot to grab one (or weren't there, but want one) let me know and I can drop one in the mail.

I have some video and photos, which I may post elsewhere and send out the link via email, in order to maintain some privacy. If you took videos and/or photos, please send those my way. Drop me an email and we can work something out for the large files.

Thank you all for making it, thank you for your food, and thank you for your gifts. Mom and I will open them soon.

Special thanks go to Laureen and Sarah for organizing, to Sarah and Mitch for hosting, and to Laura for leading the grounding ceremony and circle.

Loki, Mom, and I are sincerely grateful.

Sunday, January 11, 2009

Day 85: Little to update

There is not much to update about Loki's diagnosis and condition. The short summary is that the NICU staff still suspects a urinary tract infection, but otherwise really do not know what is going on. His behavior and treatment is mostly the same.

Now, a few details. He is receiving antibiotics every eight hours, beginning at 4 AM today. Our day nurse (who has more letters after her name, and was probably assigned to Loki due to her skills) said that improvement generally happens no sooner than 24 hours after the first dose.

He has still not peed more than a few drops, which the nurse is trying to collect in order to test for infections.

The dextrose brought his blood sugar back up to around 50, but his sodium only crept up from 122 to 124, whereas the level of concern is below 135.

His potassium level remains high, but the doctor suspects that the readings are not completely accurate. His blood has become so thick and concentrated that such analyses are not always right. High potassium can impact how the heart operates, so Loki received an EKG heart scan. This showed typical heart behavior, although his heart rate has been a bit low, around 130 instead of his common 150 to 160.

He continues on regular 21% oxygen an two liters per minute. However, his breathing rate has been higher than usual.

I forgot to mention that he received some diuretics last night, and was moved from the crib to something more like a table, with a heat lamp above it.

Thank you all for the well-wishes.

Another infection

Today Loki took a dramatic turn. By the evening, it became clear that something was wrong: His temperature was low all day long, he had been he was absolutely not breastfeeding one bit, he was sweaty and puffy, he was not peeing, and his weight gain was a bit too much. Fortunately, Mom and Nurse Amber were quite observant, and Nurse Margaret stopped by on her break from a shift in labor and delivery. Everyone agreed that something simply wasn’t right.

The blood tests were difficult, as it clotted (turned solid) very vast, but did indicate that his blood sugar and sodium were very low, and that his potassium was high. This suggests that his kidney (he has only one) has shut down, probably in response to a urinary tract infection. An ultrasound revealed that he was accumulating fluid in his abdomen. Thus, he has symptoms both of dehydration, and too much hydration. The fluid is just in the wrong location. He is on a urinary catheter, which is quite difficult and unpleasant to imagine for such a little guy. The staff would like to run a culture on his urine, but he has essentially not peed for eight hours or so.

Getting the IV in his vein was quite a task and then keeping it in was even harder. His sweaty skin made it difficult. On one hand, he cried very loudly while being poked. This makes it a very different experience from when he had an infection in the early weeks, when he was unable to make sounds of protest. On the other hand, he is quite a strong trooper. When the poking ended, he was quick to stop crying. And throughout all this mess, surprisingly, his nasal cannula breathing support remained at 21% oxygen (regular atmospheric level) at the new low flow rate of two liters per minute. The cannula even slipped off, unnoticed, for at least ten minutes without a problem. Yet normally, oxygen needs go up quickly during an infection.

So now, he is receiving dextrose (D10) and a mild sodium solution (lactate ringer) via his IV to raise his blood sugar and sodium. A new round of tests is occurring this hour, and hopefully that will provide some information as to which antibiotic to begin using. He is not being fed for now because his is keep his fluid. And what's worse, he is being kept at a slightly lower temperature so that he does not become sweaty and his IV slip off.

Mom is quite exhausted, having woken at 5:30 AM the last two mornings in order to pump and then try to get Loki to breastfeed at 8 AM. We will be sleeping here at the hospital.

Our baby shower is tomorrow afternoon. We intend to go ahead with it, although the timing is strange. We will celebrate Loki, and honor his strength during this tough time.

Saturday, January 10, 2009

Day 84: Dad changed the first diaper

Today dad changed Loki's diaper for the first time. On the photo below you can see what Loki thinks about dad taking his temperature. Dad did very well under supervision of Amber and the camera (held by Mom). However, somehow the movie is MIA on the computer. We'll upload as soon as it is found. Unfortunately as soon as he was all settled, he pooped again. This time Amber was sweet enough to quickly change the stinky dude.

I don't think we mentioned yet that Loki is on a two liter per minute flow on the nasal cannula and overall on 21% oxygen. This means we are heading in the right direction, slowly but surely and steadily. He is working very hard, this little guy of ours.

Recreational breastfeeding went well early in the morning. I got up at five yesterday to be able to pump and then go in to practice. Loki was pretty awake and very talkative. He made the cutest little sounds; "wuh wuh." As if he was asking "what are you doing here mom? I usually don't see you here so early." Isn't it wonderful to have the freedom to project ones thoughts on such a little being? Soon enough their won't be space for interpretation :-).

The reason I am so adamant about breastfeeding has a lot to do with his very lengthy hospitalization, with it's possible effects on his development of a healthy attachment, as well as the status of his respiratory health. In general children who are more prone to respiratory issues tend to be much better protected when drinking breastmilk for a solid chunk of time (e.g. first year). He will receive my antibodies which will protect him against some of the colds and flus, which basically could protect him from another hospitalization. Although I have a good supply right now, I won't be able to pump as frequently when Loki comes home and needs his attention and care. We will run out of frozen milk quickly if this is the only thing he drinks. Loki was born with 24 weeks and has been hospitalized for approximately four months by the time he will be able to go home. He has not received nearly as much physical contact and comfort as a new baby typically receives. I want him to have a cozy and healthy start at home. As his mom, I feel the need to be able to do this for and with him. There is a lot that has not happened the way one expects when getting pregnant. I am not willing to give up on this one, as according to all staff involved he shows all the signs of being able to do this with good practice. The issues he is having right now are completely typical for a premature baby. Loki needs to practice his sucking skills, his latch-on and his breathing, suck, swallow coordination, well before a typical baby is born. He has shown he can do this, it is just a little hard because he is still working hard on the cannula.

Anywho, I will stop talking about this topic unless something changes and is really worth mentioning. I just wanted to give an explanation as many people share with me their thoughts about this.

Loki sleepy head:
Dad taking his temp:

Friday, January 9, 2009

Day 83: Photo

One of our very favorites (Danielle):

Loki is just getting bigger and bigger.

The past few days have been a little more challenging because of the breastfeeding, or lack thereoff. Fortunately Danielle has been very supportive and helpful, thank so much!!

I will explain a little later why breastfeeding is so important to me, but have to run now to practice.......

Thursday, January 8, 2009

Day 82: (Photos) Chubby Cheeks

Loki just keeps growing, as you can see from the pictures. He weighs 5 pounds and 5.6 ounces (2425 grams). He is almost as big as I was when I was born. He is wearing some newborn clothes now! I had the chance to give him a bath again yesterday and he did very, very well. Breastfeeding was very frustrating unfortunately. He did not latch on and was very pooped, he really preferred cuddling up. Obviously cuddling is great, but I am getting a little anxious about getting him to breastfeed, as he is starting to show signs of wanting to feed by mouth. This means the staff is getting eager to feed him the bottle. As many new moms I am a little worried he will not be able to breastfeed if he gets the bottle first. So, few more hours at the hospital over the upcoming week!

Recognize the shirt Kier?:

Margaret and Sol reconnecting the systen after the move to room 23:

Finding Loki:

Two sleepy men:

So cozy cuddling up with dad:

Wednesday, January 7, 2009

Day 80: Finally, five pounds

Today Loki officially reached five pounds. In fact, he is that plus two ounces, or 2325 grams.

Mom continues to be very diligent, dedicated, and persistent with practicing breast feeding. Although in the morning he did not respond much, in the evening he was quite active. Also then, Loki was weighed before and after breast feeding, in order to try to measure how much milk he got. The result? Four milliliters! Granted, that's not much, but it is an important start.

In another encouraging sign, I noticed in a statement from the hospital that Loki's care was stepped down from Level 3 to Level 2 on December 28. He previously went from Level 4 to Level 3 on November 19. He'll go to Level 1 around the time that he receives no breathing assistance.

Tuesday, January 6, 2009

Day 79: Move to Nursery 3

Loki moved to Nursery 3. This is where the babies go when they are needing a little less care, so Loki graduated. He is consistently in a three baby assignment. The nurses taking care of him will not only by RN's (for the Dutch this means HBO-V) but also LVN's (MBO verpleegkundigen).

Loki is still a hair away from five pounds by American standards. He continues to be on a three liter flow nasal cannula. The doctor's approximation of his stay was about four to six more weeks past weekend. This could mean around his due date of February 4th, but also a few weeks after that. So we'll see. I can't wait for him to come home, and I am very, very nervous about it. Living without the monitor and all the nurses around 24/7 will be weird. Although I can't wait to cuddle up on our own couch with the three of us and just sit and realize we have this beautiful baby. Also curious how we will handle nights with even less sleep!

For those who wondered about Loki sleeping on his tummy and bathing him with his head on my arm? We will be weening him from his tummy by the time he goes home because stomach positioning indeed correlates with higher rates of SIDS (sudden infant death). Therefor, our little giant will be sleeping on his back by the time he comes home. Also, one usually has the babies head in their hand and not on the arm for obvious reasons demonstrated by me in the video. There is an increased risk of the baby learning how to blow bubbles or drink soapy water, by force of mother's clumsiness, not by choice :-)

Loki latched on during all three practice sessions, so he is now most getting a little bit of milk straight from the breast, in addition to his 45 mls through his nose!

Monday, January 5, 2009

Day 78: Almost five pounds + two videos

Today Loki reached 2255 grams, or 4 pounds + 15.5 ounces... that's just a few grams short of 5 pounds!

Not much to say, so here are two videos. Here, I hold the little man.

And here, Mom gives Loki a bath for the second time, with the help of nurse John.

Sunday, January 4, 2009

Day 77: Eleven weeks!

Today Loki is eleven weeks old. As I suspected, his weight has shot back up, with two days of growth following the quick dip (which may have just been a bad measurement). He's now at 2220 grams, which is less than two ounces shy of five pounds! He spent only one day in the 2100's.

Mom gave him another bath. A video should be up soon, but I am too tired to deal with it now. In the meantime, here are some photos. Note that the redness around the eyes is due to the oxygen he breathes.

All clean:


Saturday, January 3, 2009

Day 76: Little grumpy man

Today Loki was a little more grumpy than usual. He seems more gassy as well, so that may be an explanation. In fact, he is very skilled in passing gas. It is amazing how is tiny body can produce a pretty impressive odor and sound. The little guy is not aware of this skill and just cries and wiggles his little body to make it all happen.

We tried breastfeeding three times. The first two times he was able to latch on a few times, the last time he just wanted to cuddle up and sleep while being held. During one of his moments he cried with his mouth so wide open that I got a good look at the roof of his mouth. It looked interesting and initially a little bit worrisome. As the doctor explained; because of his intubation there is a groove in the roof of his mouth from where the ET tube pressed against the palate. If and how much this will impact his articulation is to be seen. I am not too worried as most of the issues that could come up can be addressed with speech therapy. Of all the issues our micro preemie can encounter, this one is not really scary.

As Amber and I were talking about the pros and cons of having Loki come into this world so very early, she made one of the sweetest and most touching comments. We agreed that one of the wonderful side effects is getting to know all these amazing people working at the NICU, or some great parents who also have their child admitted. Amber said that Loki makes her days so happy at work, and that no matter how little he is, he already has made a difference in the lives of some people (or something to that extent). That of course made my mommy heart fill with happiness and pride. And what can I say....... ? for us he has made the difference in the world. Our tiny yet chunky, feisty yet zen, smelly yet sweet dudy maludy!

Friday, January 2, 2009

Day 75: Diuretics

Today Loki lost some weight, down to 2030 grams. This is probably due to the use of a diuretic (Lasix) which causes him to lose fluid. The belief is that this will help clear any fluid form his lungs, and thus potentially speed up the withdrawal of breathing support.

Mom is putting lots of effort into the practicing of breast feeding, further crowding her already busy schedule. Based on what she tells me, it seems to me that each day he becomes a little more skilled at the complex task. Suck, swallow, breathe: If any of these three is skipped, there is a problem.

Here, Loki models some of his latest fashions, courtesy of MB (Thanks!):

The little man and I:

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.

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