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!

5 comments:

marieke said...

Lieve Loki, you look so handsome! It's great the picc-line can go out soon and you know? Your hair will grow beautifully. You see? drinking from the breast is great, I told you...

Mom and dad, hold on in this stage of improvement. It sucks that the hospital is depressing. It is great the doctors are good. Unfortanatly Loki needs special medical help at the moment. It's a pitty the combination of the medical help and the warm nest of AB is not combined. There will be a time you are home with a big babylokisky! Dikke kus

Anonymous said...

Dear Loki,

I am so proud of you hanging onto your mom's breasts! You will have to practise a little more, but it will be all right. Lijn, I can really recommend the dutch breastfeeding forum: www.borstvoedingsforum.nl where you can probably get more reassurement and info and tips on how to deal with your need to do this in the right way, in this very difficult situation. There might be other mothers struggling with the same problems. Be proud of what you have achieved already (almost 4 months!! who can say that?) This really is a gold medal achievement, along with all the other challenges you have faced, I am amazed you keep yourselves standing! Give Jesse a kiss and hang on! Er is licht aan het eind van de tunnel.

xx Kier

Suzan said...

Lieve mom, dad and Loki,

Loki you look so handsome now your cheeks are normal again. And you look sooo sweet. And you and dad together look so very nice too. No wonder mom and dad keep fighting with you so hard! And how cool that you could drink your mother's milk, live! That for sure is the best way to feed and get very strong. Yes the borstvoedingsforum Kyra mentioned has been very helpful to me too many times. When you post a comment or question it is amazing how many people read it and react. Well wish you all the very best in this unfriendly hospital. Luckily you have each other to cheer each other up when everything around you looks grey. We'll try to send some positive vibes to and are thinking about you all,

Suzanna, Johan and Phileine

Anonymous said...

You know, I think he looks even more handsome now, and it's amazing how well he's doing, especially with the breastfeeding and the great oxygen levels. -Jennifer M.

Anonymous said...

Laten we ons richten op het positieve, want dat hebben jullie het hardste nodig in zo'n omgeving. Een voordeel nu is dat je nu merkt dat je Loki mee naar huis wilt nemen en kan vertrouwen op je eigen kunnen. Inmiddels zijn jullie door Loki ook medische deskundigen geworden, jullie zien het zo goed als er ies aan de hand is. Door de zeer goede zorgen van AB ga je je inderdaad soms afvragen, kunnen we dit thuis wel. Het antwoord heb je nu: JA, jullie kunnen straks jullie mannetje mee naar huis nemen. Hij is dan nog wat stappen verder, en jullie kunnen volledig vertrouwen op jezelf.
Ik vind het zo super dat jij het zo volhoud met borstvoeding. Ik hoop dat elke druppel die Loki echt uit je borst drinkt voor jou al het kolven waard maakt. Zet hem op allebei!
X Maaike

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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