Friday, November 2, 2012

Update

Finley is now seven weeks old. He is growing like a weed, generally a very happy baby except when his belly bothers him (usually at night). I am doing well, quite amazing with how little sleep you can function when you are pumped up on all those Mommy hormones.

My stoma has been giving me lots of problems. About one week after Finni's birth it started leaking like crazy and hasn't stopped. My stoma tract has become very wide now that my belly is all gone again. It will take time and some good workouts for my abs to tighten again. I am also using medihoney to encourage granulation. I have also switched over to special absorbent dressing and that helps incredibly to keep my skin intact.


Friday, September 28, 2012

2 weeks

Finley has settled in well, he is nursing like a champ, gaining weight accordingly and love doesn't even get close to describing what we feel for him.


Monday, September 17, 2012

Welcome to this world my little boy!

Finley was born on September 14th, at 9.51, weighing 3.450 g. It was a difficult birth, and he had some respiratory distress in the beginning, but he is a real trooper now. All went well in regards to my feeding tube.


Monday, September 10, 2012

Sunday, September 9, 2012

An iron story...

There are two parenteral iron formulations available in Austria at this point - iron sucrose (Venofer) and iron carboxymaltose (Ferinject). Ferinject is the new high-end product as it enables you to get up 1000 mg of iron in one setting, whereas the Venofer needs to be given at 200 mg levels over several weeks. Before I got pregnant I always received Venofer through my family physician. But my family physician did not want to administer IV iron in her office during my pregnancy, and I therefore had to go to the hospital to get my IV iron. At the hospital they only have Ferinject available, and at first I was supposed to get (as per orders from the hematologist) 1000 mg of iron in one go. I read up on it on the internet of course, and found some worrying accounts that high dose iron can lead to iron overload and more reactions than low-dose iron like Venofer. That's why Ferinject is not FDA approved in the US. Low dose Ferinject is usually not given as it is so much more expensive than Venofer and for low doses Venofer is selected.
When I had my first iron IV a few months ago I asked my OB-gyn to please split the doses and only give me 500 mg in one setting. In the end I only received the 500 mg, as I had a good response to it, but of course it only kept me going for a few months and a couple weeks ago blood tests showed that my iron stores were once again depleted. I was so hoping that I would not need another iron infusion until after the birth, as I did not want to subject myself and especially little one to another high dose of Ferinject (anything between 500 and 1000 mg is considered high dose). I voiced my concerns and thank god my OB-gyn decided to go with my plan to only give me half a vial of Ferinject - making it a dose of 250 mg.
When I went to the hospital last week I had a feeling that I had to be extra careful about the correct dilution of the Ferinject (I had looked up the package insert for Ferinject online before and knew that 250 mg needed a different dilution than 500 mg - only 100 ml of saline compared to 250 ml of saline.) and my vigilance payed off. When the intern took me back and wanted to hook me up I looked at the bottle - 250 ml of saline. At first I didn't know how to approach her about that - I did want to be that "know-it-all-patient" and question her expertise, but at the same time I knew that Ferinject loses it's stability at a high dilution like that, and there was no way that I would subject my little one to that. I told her that I had thought that 5 ml of Ferinject needed to be diluted in 100 ml of saline and that this was 250 ml. She told me that she had diluted it according to instructions they had hung up in the doctor's room. I then pulled up the package insert on my smart phone (thank god for smart phones and mobile internet :-) and showed her the instructions. She did get a bit insecure then and said she was going to phone the ward again. Five minutes later she came back to tell me that I was right. I thanked her for taking me seriously and was quite happy to have intervened.

Still - this story made me very thoughtful. I am a very pro-active patient, I check up on things like that, I can speak up for myself - but is it really my task to check up on a doctor's actions to keep myself safe? What about people that can't do that?

Tuesday, September 4, 2012

Week 37

I had another check-up with my doctor last week, found out that little one is in the 97th percentile of weight for his gestational age - yikes.... my doctor promised me to not let me get too far past my due date :-). It was also determined that I needed another iron infusion, and I had that done last Thursday at the hospital. I opted for the lower dose which will probably tide me over until the birth, but will have to re-load on iron yet again most likely right after.

Little one has started to settle down lower in my pelvis making me a bit less mobile than I was before. Now that I am in my 9th month of pregnancy, I am starting to get tired - sleepless nights, not knowing how to position myself in bed, sitting can be quite uncomfortable, standing even more, walking still okay but leads to an immediate feeling of having to go to the bathroom - I am well aquainted with all the public bathrooms now :-).

I am trying very hard to keep myself occupied - doing lots of sewing for the little one, bought a new camera and a book to go with it, and still need to complete my wedding scrap book. There are days when I hope for him to make an earlier appearance and than the minute after I realize that there is still so much I want to get done :-).


Tuesday, August 21, 2012

A pregnant tube feeder's belly :-)


And yes that little bulge on the left side - that's my little one sticking his butt out!


Monday, August 13, 2012

Busy week

Week 34 - and it is going to be busy! Tomorrow I have an appointment with my midwife, on Thursday I will have my 34-growth-check-up at the hospital and in the evening our second prenatal class. On Friday M is leaving for Tyrol to celebrate his Mom's 60iest birthday, but I will stay at home, I am definitely not up to spending 5 hours on the train each way.

This is my second week of maternity leave, and I am really enjoying having some time on my hands now. (When I was still working I spent most of my spare time on the couch or in bed.) I have actually finally gotten around to doing my wedding scrapbook (after almost 2 years of marriage ;-))). Finished the first one last week, but had so many of our photos printed that I will have to do a second one. Afterwards I want to work on my pregnancy scrap book and once that is completed, I want to sew a blanket for our little one.

So much to do!

Tuesday, August 7, 2012

Week 33

Last week was a tough week from a tube perspective. The week before that my Mum had come to Vienna to help us turn M's study into the nursery and generally organize our apartment (my Mum is the best organizer ever). I, of course, helped a lot and after my Mum had left, M and I continued to work on our apartment - in the end we worked straight for about a week. By last Monday I was in so much pain around my tube site that I started to get seriously worried. I couldn't move my tube without being in pain, couldn't walk, couldn't even ride in the car. From the past months I remembered that this could all be caused by totally overdoing it with tasks where I had to use my stomach muscles. M intervened and sent me off to bed and to the couch for three days straight. Very boring, but soooo effective! Already after a day I noticed a big difference in my pain level and after a few days I was back to my usual pregnant self.

I am now very careful in my activities and try to listen to my body better. As soon as I feel the tiniest bit of onset in pain around my tube set I retire to the couch or bed to rest.

The pain of Laura's passing is starting to subside a bit. Of course I know that it was bound to happen sooner rather than later, but it still hurts incredibly to lose a pet after such a long time. I am so grateful though to have Aimee and Aaliyah around who shower us with lots of love and kitty cuddles right now!

Saturday, August 4, 2012

August 4th 2012


LAURA
June 1992 - Aug. 4th 2012

Today we had to let Laura go. She went downhill very quickly over the past few days, stopped drinking and eating, had a very hard time moving around and could barely walk. This morning when she cried out in pain because I had moved her from one spot on the couch to the next, it became clear to us that the time had come. 
The vet was very kind and after examining her told us that she had lost most of the feeling in her legs and had painful spots along her spine probably due to intense inflamation. She certainly was in a lot of pain and even with intense veterinary and in-home treatment she would maybe live for 6-8 more weeks or even less. We have always promised her and ourselves that we would not prolong her suffering, still it was incredibly helpful for me to have M at my side who after listening to our options made the call "lets do it". I got to hold her in my arms and cuddle her while she fell asleep.

Laura was my faithful companion for the past 20 years, always at my side, helping me through many tough moments with her gentle love and feline compassion.

Thursday, July 19, 2012

J-tube and pregnancy

Starting with pregnancy week 7 "morning sickness" hit me pretty badly - not just in the morning but all day round (and during the night as well), I was very grateful for my j-tube then, although I noticed that I became very volume sensitive in my intestines as well, simply flushing my tube with 20 ml of water would make me gag (and that never used to be a problem before). By week 12, I was starting to feel better, my stomach actually seemed to wake up a bit and I was able to eat some semi-liquid foods orally.

Once my belly started to grow and push out more, I developed a very bad eczema around my stoma, hesitant on using a steroid cream, I started treating it with St. John's wort oil three times a day and after months of itching the eczema finally cleared.

In my 20iest week I had quite a scary experience when I noticed blood draining out of my j-tube, of course it was a Sunday, thankfully I can call my OB-Gyn anytime, he phoned the hospital for me and the surgeons were already waiting for us at the emergency room, no waiting at all - what a service! In the end it turned out to be minor irritation in my intestines. My stoma kept on bleeding every night (although there was no granulation tissue visible) for the next 7 weeks, until I finally figured out that I needed to keep my tube a lot longer than usual - meaning that I had to move the external bumper further away from my skin - the difference between sitting, lying and standing is a lot bigger now in terms of tube fit with my pregnant belly. For the past few weeks I have had next to no problems with my stoma.

Little one loves to kick against the internal bumper which sometimes can be quite painful, also sometimes he lies exactly beneath it and that hurts too, but I usually can get him to move away again by putting my hand on the right side of my belly. My midwife told me that babies usually lie more to the right, now I am really happy that my tube is on the left side of my body, I am sure it would be more painful otherwise.

For the past few weeks my gastroparesis has really been acting up, nights are especially difficult, as soon as I lie down at night everything just comes back up which makes sleeping next to impossible. Even water sometimes comes back up. It helps a little to sleep with my upper body raised, but that hurts my back again...
I am trying not to have anything by mouth (not even clear liquids) a few hours before going to sleep in order to be a little bit more comfortable.

I have had times during which I really freaked out about my feeding tube and the pregnancy, just because I got so worried that the growing uterus would somehow detach my intestines from the abdominal wall, but the further I get along the more comfortable I get.

Most of you know that I usually always wear waistpacks as tube feeding gear, starting with the 15th week I had to switch back to wearing a backpack. It took me some time to get used to it, but now it has become second nature again to run around with my backpack on. I do get comments now occasionally "Is that for the baby?" or someone who came to fix my balcony door on seeing me walk around with the backpack in my own appartment "did you just come home?" and then "or are you about the leave?"

The cats are very attentive, Aaliyah joins me in bed for a nap every single day :-).

Here is a photo of my pregnant tube feeding belly:




Tuesday, July 10, 2012

Turning from Tubegirl into Tubemum :-)


I have been postponing forever to finally blog my big news - but here it is - I am pregnant :-) - in my 29th week already, I definitely have lots of stories to tell and information to share on being a J-feeder and pregnancy. I have found next to nothing on J-tube feeding (specifically a PEJ-tube) and pregnancy, and I really want to share my experiences so others can benefit. 
I will update more in the next couple of days :-).

Sunday, April 15, 2012

Nothing new over here

M and I had a wonderful easter at my parents' house, complete with snow fall and temperatures below zero. If it had been christmas, it would have been lovely, but for easter - yikes!

I spent the past few days in Innsbruck, took a couple of classes for my neuropsych degree, spent some time with the in-laws and came back late last night a bit wiser, but very tired :-).

Today we spent the morning with my girlfriend and her kids - the boys - now 2 years and 7 months - watched me intently when I filled up my feeding back, put my meds down my tube and flushed it and got all hooked up. "What's Lula doing there?" "What's that Lula?" - pointing to my syringe and my feeding bag. Too cute!

Laura is hanging on nicely, she is still drinking lots of water, but we have switched her food to a low protein, low phosphat "kidney-friendly" diet and she seems to be holding steady.

Wednesday, March 28, 2012

Trying to pace myself

If I have something to work on, I get very ambitious and have a hard time pacing myself. It's not really surprising to me that I am having hard time pacing myself when it comes to food trials. I am so excited at the prospect of eating something orally that I tend to override what my body is trying to tell me "take it slowly, don't overdo it".
I am managing quite well with my morning shake, IF I don't add too much banana and too much milk and therefore make the volume higher. I always want to eat something again in the evenings, but even though it the amount is so tiny and I get three hours off the pump afterwards, I get nauseated and once I hook back up the nausea intensifies which of course makes for a very restless night. For reasons I don't want to get into right now, I can't compromise on my caloric intake right now, I need to hook up no matter how nauseated I feel.

Overdid it yesterday, then had too big of a shake this morning and that of course makes for an unhappy stomach and some very unhappy intestines. Also I have been compromising on my probiotics (a powder dissolved in water) because I simply didn't feel I could drink it on top of everything else. Not good, as my intestines really behave a lot better when I am taking my probiotics daily.

I know exactly that the best thing would be to only have this one shake in the morning (and not too much) and be happy and content that I can have at least this one shake without feeling too bad. I will do my best over the next few days to pace myself!

And tomorrow, I will put in a tube feeding only day, get myself out of this beginning flare up and maybe hope for some oral food again over the weekend.

Sunday, March 18, 2012

A turn for the positive?

I have been feeling a bit better lately and have now started experimenting with food again. I am running my tube feed at a slightly higher rate in order to have more time off the pump. And for any substantial oral intake I get to have more time off too, as I am able to substract the oral calories from my tube feeding intake.
For the first few days I had semi-elemental nutritional supplements, but now I am starting to have to real food. I am still following GP guidelines, but it is so good to finally taste food again. It does feel strange in my stomach at first, and I have to take it very slowly, but I am doing it! Now I just have to hope that my intestines are behaving as well and absorbing what I eat!

I am feeling incredibly happy!

Tuesday, February 28, 2012

A slightly different health update

If you have been reading my blog for a while, you will already know that I have the pleasure of sharing my life with three lovely feline ladies. Today I have a health update - not about me - but about Laura.

Laura is my senior kitty who is going to turn 20 in May. Laura used to have a brother - Romeo - but he died 6 years ago this June from chronic kidney failure. Immediately after his death, my husband and I, didn't want to get another cat, saying that surely Laura won't be living very much longer either and then we'll start with siblings again. But Laura didn't tolerate being alone after always being with her brother for 14 years and so we got Aimee to keep her company. Two years later we brought Aaliyah into our feline household as Aimee needed a younger cat to be active with, thinking that this was just going to be a temporary solution because surely Laura wouldn't live that much longer. That was three years ago ;-). So yes, Laura has outlived all our expectations by far.

Over the past few weeks I have noticed that she was drinking more water than usual. We therefore took her the vet to get a blood test. Yesterday I got the results back and my sweet old cat is in chronic kidney failure. I don't know what her life expectancy is, we won't really treat it - given her age.

But I really hope that she will hold on a little bit longer - I want her to have another summer on our balcony - basking in the sun light and enjoying the warm wind in her fur.

Laura aged 11

Friday, February 24, 2012

The perfect nap

After my wonderful vacation in Portugal with temperatures everyday up to 20 °C, I came back home to a Siberian cold front. For weeks we had temperatures below -10 °C every day, making me not really want to leave the house at all. In the past week we finally had a turn around and it actually hit 12 °C today. And above all - the sun was shining all day! (Vienna can be very grey and dreary during the winter time.)

So this is what I did for my early afternoon nap:
Got out our chaise lounge, wrapped myself up in my duvet and had a wonderful nap out on the balcony enjoying the sun shining on my face! Laura, my dear old cat, cuddled up with me and seemed to enjoy the spring feeling as well. I slept for over an hour, until the sun started to disappear behind the apartment building opposite from us.

So wonderful!

Friday, February 17, 2012

Praise for medihoney

I know I have blogged about medihoney a few times already in the past few years, but I feel I need to blog about again. I am just so amazed at how well that stuff works!!!

Even though my new stoma is looking really good, no irritation, no redness at all, I did have some problems with granulation tissue inside my stoma tract. It bled amost every single day, and I started to be afraid that it would maybe become infected with it being an open wound all the time.

So I brought out the medihoney again, started applying it with a Q-tip twice a day, always sliding my tube in and out of the stoma in the process in order to try to get as much medihoney as possible inside my stoma tract.

After two weeks my stoma tract has healed very nicely and the bleeding has stopped completely. I will still be using the medihoney for another week just to make sure. My stoma tract seems to have tightened up more too, hardly any leakage now, I don't even have to use barrier cream anymore.


Tuesday, February 7, 2012

Feeding tube awareness week

This week is feeding tube awareness week.

Most people I meet probably don't know that I am a tube feeder, not unless I tell them. I guess I hide it well.
When I do decide to tell people I usually get raised eyebrows and a "what do you mean you can't eat". Therefore I rather not talk about it.

That does make me sad sometimes because really I am so very grateful for my feeding tube. I want to tell everyone that this is the reason that I can live, that my feeding tube enables me to have the life that I deserve to have.

So yes, I am a proud tube feeder!

Friday, January 27, 2012

What a wonderful vacation

I have been back from Portugal for a couple of days now, and it is hard to believe that after a week in short sleeves and light pants I am back to wearing turtle necks, a winter coat, scarve, cap, and gloves.

I had a wonderful time. I was able to relax and just be. I only had access to the internet a few times, and I had totally forgotten how good it feels not to be online that much. I did lots of reading and sleeping and simply enjoying sitting out in the sunshine. I even got a hint of a tan ;-).




Travelling went well from a tube feeding viewpoint - no troubles at security or during the flights both times.

I had a very creative set up in my bedroom for my nighttime feeds. Usually at home I use my IV pole for that, but this is what I did in Portugal:

My trusty travelling tube feeding hook ;-).... works well on the backs of chairs as well....

 

Monday, January 16, 2012

Waiting at Frankfurt

Now I am waiting in Frankfurt. Frankfurt has big size windows in most of their waiting areas. Sitting in the sunshine watching the planes and busyness of the airport - and enjoying life!

Ready for take off

I am waiting at the airport, ready for boarding my flight. Everythink worked well with my extra medical luggage (all 32 kg of it), although the customer service officer at the check-in desk did not see the "free of charge" note right away, and asked me about paying for my extra luggage. I explained to her once again that it is free of charge and showed her the e-mail communication I had printed out with Lufthansa's special operations desk. She then called a colleague and in the end found the note. Slight adrenaline rise for a second, but it worked out fine.

I am very excited to be flying. I am bringing four bags of extra formula that I will have to take through security, but I am used to that. I have a letter from my physician and if all fails I simply lift my shirt and show my tube ;-). Show and tell at the airport security :-)!

This time I will hook off for going through security though, way too much hassle with the intimate pat down I always receive if I don't hook off.

So yes, I am excited!

Friday, January 13, 2012

I was in class today for my neuropsych degree - today's topic "memory disorders in patients with brain damage". The lecturer had little demonstrations prepared on how to use external memory devices. To remind himself of (and show us) the first coffee break, he had his dictaphone set as an alarm with a pre-recorded message saying "coffee break". For the second coffee break he had his cell phone set to ring.
I was sitting in the front row, actually he was talking right in front of me for most of the day. About an hour after the second coffee break my pump started alarming. The look on his face was priceless, as he obviously started thinking that one of his memory devices was going off again without him prompting to do so..... and I turned slightly read as he was standing right in front of me ;-).
 
Other than that - the class was very interesting, another day tomorrow.
 
Interestingly, I still find it awkward refilling my feeding bag in front of 20 psychologists. I never have problems doing it in public (like on the train or in the subway), but I do get a bit self-conscious in a room full of psychologists...

Tuesday, January 3, 2012

I am so excited!

I wasn't doing so well at the beginning of December with some additional
health issues, but I am feeling so much better now, and as a reward I
booked myself a flight to visit some friends in Portugal! M
unfortunately has to work and therefore can't come with me, but I am
excited nevertheless. I am flying in less than two weeks and
preparations have started already - sent an email of to Lufthansa to
ensure that can bring all my tube feeding stuff as special luggage (free
of charge) with me. Last time I flew with them I had some problems in
this regard, and I am trying to get everything sorted out beforehand
this time. But it seems that I am on the right track :-).

I am really excited to fly to Portugal, weather is a lot warmer than
over here and definitely more sunshine than in dreary grey Vienna. I
will need to bring some lighter clothing (I guess I have to go through
some summer clothes drawer....)!