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.......

7 comments:

Anonymous said...

Lief nichtje,

Ach, niet iedereen is even handig in de omgang met anderen. Niets ten nadele van verpleegsters, maar er zijn er bij waarmee het heel lastig hazen vangen is (of is de uitdrukking anders?). Ik herinner me dat nog goed van de tijd dat ik met mijn babies in het ziekenhuis lag.( Died en Martijn zijn allebei in het ziekenhuis geboren.) En vooral als je moe bent, zoals elke jonge moeder, (en jij nog eens extra!), kost het nog meer moeite om handig met die meiden om te gaan. Trek het je niet te veel aan!
We blijven hier veel aan je denken, ook al zie je niet zo heel vaak een berichtje van ons. Gisteren je moeder aan de lijn gehad; zij zou denk ook liever vandaag dan morgen naar je toe vliegen!
Leuk om geregeld een berichtje van m'n andere nichtje te lezen. (Groetjes Marieke!)
Veel sterkte met het kleine, dappere mannetje.
Kus,

Lidy

Kyra said...

come on, liefie! You do not deserve that. You should NOT be wondering what you're doing wrong. If it really makes you feel uncomfortable, find some energy and try to talk to someone again. This is not how nurses should make parents feel, even though it is happening doesn't mean that you have to 'pik' it. You need to spend some more time there and this just doesn't sound fair to me. See you snel.

xKier

Anonymous said...

Lieve mama,
Ik herken dit gevoel enorm. Ook toen ik in het ziekenhuis lag na mijn keizersnee was er een verpleegkundige die erg aardig was tegen anderen en erg kortaf tegen mij. Ik werd daar ook erg onzeker van, vooral omdat je al extra gevoelig bent. Ik denk, achteraf, dat ze niet kon omgaan met mijn vragen (ik wilde alles weten en wilde dingen zelf bepalen), terwijl de rest alles prima vond en de zorg geweldig. Ik denk dat wij gewoon door onze kennis niet zomaar alles laten gebeuren en daar worden die verpleegkundigen op hun beurt weer onzeker van. Die vraag waarom extra antibiotica lijkt me volledig terecht. Probeer te doen wat je thuis ook doet, bv. een tukkie doen met je kleine bij je, de natuur heeft dat echt wel zo geregeld dat je hem niet laat vallen. Heb vertrouwen in je eigen kunnen! Kop op!
Dikke kus en knuffel, Maaike

marieke said...

Lieve, lieve mama,
Natuurlijk wordt je onzeker van zo'n nurse. Als je maar 1 ding weet, je doet het echt kei en keigoed! Geen zuster kan daar tegenop, zo. Maaikes woorden klinken zo logisch. Doe gewoon aardig tegen haar en ik sluit bij Kier aan, zoek anders iemand met wie je erover kunt babbelen. Ook Lidy schrijft goeie woorden; Relativeren, (ook al is het heel moeilijk denk ik, je wilt aardig gevonden worden, je wilt er zeker van zijn dat Loki het goed heeft), kan werken. Deze hele periode is eindig en dan groeit Loki gestaag uit tot een sterke jongen met hele lieve ouders. Hou dat voor ogen.
Ik zou willen dat ik meer voor je kon doen, hele dikke knuffel en veel energie. X

Janet said...

Dear Kat,
I'd like to give that nurse the benefit of the doubt, but sounds like rude and discourteous behavior to me. Some nurses are more lenient about parents giving "nurse" care than others;perhaps the two of you can taklk more about what things "nurse" you and Jesse can do for Loki. A few weeks to a month can be an extremely long time when in company with disagreeable people. Hopefully, whatever tension is there can be worked out. But most importantly, you and Jesse are the best parents Loki could ever wish for...DO NOT LET ANYONE MAKE YOU FORGET THAT!!!
I'm coming Tuesday after work to remind you of that fact in person!
Until then all my best to you and Jesse, and, as always, knuffels to my Loki.
Nurse Janet

Mom said...

Thank you all for the sweet comments!! Janet, we would LOVE to see you on Tuesday!!!

Anonymous said...

Hi Little Loki, Kat and Jesse,

Rhea and i just got off work and wanted to catch up on the blog we miss u guys a ton especially the little, big guy!!! I am so sorry to hear that you are having a hard time with some of the nurses, we want you to know that we love you all dearly and that you are such a devoted, caring and strong family!!! Kat you are a incredible mom and please don't second guess yourself period...you are a great mom and know him better than anyone!!! We love you all and are always thinking about you!!!

Love Amber and Rhea

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.
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