Categories
Uncategorized

Nederlands deel van de website niet up to date

Hoewel deze blog in twee talen gevoerd wordt kost het veel tijd om dit zelf te vertalen. Vandaar dat niet alles in het Nederlands te vinden is en de meest recente inhoud alleen in het engels is. Check dus vooral ook de Engelse versie!

Categories
Closed loop during pregnancy Diabetes

Pregnancy – hypo bonanza (week 8-10)

Pregnancy with type 1; you hear about the big babies, about the extra risks you put yourself and your baby through, the impossible insulin resistance. I wasn’t so prepared for all the hypo’s…

I read in my pregnancy and type 1 diabetes book that some women produce insulin again during early pregnancy. There are women which can go without additional insulin for up to two weeks. Mind boggling and unbelievable. Although I didn’t quite go without any external insulin I was needing a significant amount less. Particularly during the night I was having many hypo’s and they were quite deep (43 mg/dl, 2.5mmol/L). Pregnancy makes you exhausted, steep lows are draining, let alone the combination and then in the middle of the night robbing you of sleep. I was having 2-4 of these lows every night. I feel like I am eating all the time, with at least 25% of food not even getting a bolus and I’m still going low. Cranky doesn’t even begin to describe my mood because I’m exhausted and don’t even dare think about exercising since a 10 minute walk will already plummet my sugars let alone the 1.5 hour work-outs I usually do.

I was a bit hesitant to change my basal rates since my nights were perfect straight lines the week before. Eating a 15 carb snack around 20:00 helped to prevent the first low at 23:30, but I had to wake up every couple of hours to eat something when the next hypo presented itself. This is not as much fun as it sounds…

I went to the pregnancy loop fb and was reminded; during pregnancy you want to adjust every 2-3 days. Thus I lowered my basals. Additionally they suggested a ‘recent-hypo’ override with a slightly higher target value and roughly 80% of insulin rates for a couple of hours. Thankfully this helped and I was back to one hypo a night, or if I was lucky none at all. Better get as much undisturbed sleep as I can get now because it will be over before I know it…

Advertisement
Categories
Closed loop during pregnancy Diabetes

Pregnancy – the first endo visit (week 8)

After confirming the presence of baby I called my endocrinologist the next day to schedule an appointment.

Four weeks earlier I had a ‘regular’ appointment, the first time since looping. I have never been scared to visit my endo but boy was I nervous ! Up until then my endo and I had a strained relationship; we’d only know each other for a year and she had to get used to my self-care attitude whereas I had to get used to how they do things differently from what I was used to in my previous clinic. Sometimes they’re a tad old fashioned… so going there to tell them I had take  even more of my own diabetes in control by looping made me a little anxious. I had mentally prepared myself for a scolding and having loop being forbidden. My own endo wasn’t in then and her colleague was positive about loop although she told me she has no clue how it works and cannot help me find tune settings. 

Fast forward four weeks and I am now sitting opposite my own endo with my husband and the first thing she says is; weren’t you here four weeks ago ? What are you doing here now?! But once we said we were pregnant her whole demeanour changed. The strained relationship we had seemed to melt with every sentence she said. Until she saw I was looping. She scrunched up her face and asked me if I was sure I wanted to do this during pregnancy. Internally I was preparing myself for the defence, having done some research to show her actual facts. When I said I wanted to try even if it was only during the night so I could actually sleep she looked at me sternly for a moment and then said ‘okay, let’s do this’. To my great surprise she then continued on to tell me she had another pregnant woman on AndroidAPS and the results that she obtained by looping were unbelievable. I couldn’t believe my ears, she’s okay with it? She will help me? I felt like I was dreaming. After going through the basic differences of loop vs APS (no micro bolus in loop at that time) we were in business. She warned me, although looping is great, it will have a hard time later on with the delayed carb absorption rates and that I might need to open loop during the day. 

Relief flooded through me, my endo was okay with me looping. She already has some experience so she could even help me adjust my settings a bit. I was pregnant, my sugars were under control, my end accepted me looping; what more could I possibly want?!

Categories
Closed loop during pregnancy Diabetes

Pregnancy – the beginning (week 7)

It’s 4:00 a.m. and I wake up having to use the restroom. Yesterday I realized my last cycle was 7 weeks ago. Nothing too absurd, it’s happened before. But last week hubby and I had a little spat which brought me to tears, now this is a bit out of character for me. Hubby asked me the day after if it wasn’t time to do a test. I told him not to be so absurd, I was still recovering from being so sick and all the medication could very easily make my cycle a bit off. However yesterday I decided to do a test and the package said it was best to do it with morning urine as this gives the best results. 

I know I won’t be able to go back to sleep anymore now I’m thinking about if I should take a pregnancy test or not. I slip out of bed and grab the test. For a minute I hope its negative so my husband was wrong. But I would so much rather have him be right. I take the test and cross my fingers. Wait five minutes the package says, but after 30 seconds there are already two clear lines. They just get stronger and stronger. Holy moly. Two lines. I check the package. Two lines means pregnant. We’re expecting. I’m with baby. There is something in my belly besides food.

I go back to bed and can’t stop smiling. It’s 4:30 a.m. although I’m terribly tired sleep is far from my mind. I’m going to be a mommy. How will I tell hubby? I decide I’ll let him sleep so at least one of us is rested. I keep tossing and turning, hubby wakes up and asks me if my sugars are okay. “Yup, they’re fine go back to sleep.” He turns to look at me in the dark and without missing a beat says: “you’re pregnant”. 

Neither of us got much sleep anymore. We just lay there staring at the ceiling with a thousand thoughts a minutes rushing through our minds. I am unbelievably thankful I started looping a couple of weeks ago. Regulating my sugars during pregnancy has been a big worry of mine for years already. I was never sure I would be able to. But even after a few weeks loop gives me the reassurance that I’ll make it through. It will be though, every pregnancy is tough and then I still have to take care of my diabetes as well but loop has my back, as does my hubby. Together we’ll make it through. 

As soon as the gynecologists office opens I call to schedule an appointment, we actually get squeezed in for the end of the afternoon. My biggest worry at the moment is not my sugars but what all the medication and x-ray I received  two weeks ago may have done for damage. I don’t think I’ve ever been this nervous for a doctor’s appointment. We are at seven weeks already and there’s this blinking light visible on the ultrasound. It turns out to be babies heart. It’s terribly strong for seven weeks and the doctor reassures us if the medication or my high sugars would’ve done any damage we would’ve had a miscarriage. Baby is healthy and strong. Hubby and I are overjoyed; we managed to make a human being. A tiny little disco ball already dancing to the beat of it’s own heart. Although I am over the moon with love and excitement I also know there are going to be some very though months ahead of me…

Categories
Gluten free Gluten free travels

Vienna – insider’s guide to eating gluten free

Three years in Vienna means three years to figure out the best spots. Vienna is so big, especially for Austrian standards that there are quite a lot of options. So many even I haven’t been to all of them. If you don’t have a lot of time or don’t want to read a lot, here are my top picks; 

(if you come in summer time always call ahead to ensure that they are open. In Austria many things close for 3-6 weeks during summer holidays!!)

Completely gluten free:

Zum Wohl

Gluten free schnitzel /  Austrian cuisine:

Gasthaus Nestroy (careful only open on weekdays!)

Gasthaus am Predigtstuhl 

Gluten free pizza:

Pizzeria Scarabaccio (you have to reserve ahead of time because they will be full!)

Gluten free brunch / confections

Grüner Salon

Oberlaa

Ausnahmsweise

Gluten free shops

Most supermarkets have some gluten free products (click here to read the blog on this) but if you want fresh croissants or more specific gluten free things you better head out to a gluten free store.

Dion’s Glutenfrei opened October 2020 and although it’s not a large store there are plenty of brands and products to choose from! Dion’s has it’s own brand including cakes, cinnamon buns and lactose+gluten free (chocolate) croissants and they’re simply amazing! It’s in the 2nd district right behind the park connected to Prater. I know I’ll be coming here when the weather is good, buying a fresh croissant and going for a picknick with the family after.

Dinner

As stated, there is quite a lot of choice in Vienna unless you want to have 100% guaranteed gluten free restaurants, then Zum Wohl (6th) is your only choice. The lovely thing about this restaurant is that you do not need to worry about anything, you can simply choose what you like! (They also accommodate other allergies / intolerances) They have everything from an amazing gluten free bruschetta with home baked bread to gluten free beer and a ton of gluten free dessert. There is a gluten free schnitzel on the menu but it is one of the most expensive things on there and in my opinion the two Gasthaus options are much better for a schnitzel. Did I mention all the gluten free desserts though? This restaurant is a bit more expensive for Austrian standards but that is the price of a worry-free evening.

If you’re in the mood for a schnitzel, and who isn’t when you’re in Vienna, go to either Gasthaus Nestroy or Gasthaus am Predigtstuhl. The drawbacks of these two restaurants is that the first is only open on weekdays and the latter is not ideal with public transportation but oh my is the food worth it! Nestroy not only has gluten free schnitzel, they also have cordon blue, something I have never seen anywhere else. They have palatschinken for dessert (or in your soup as a starter) and have 1-2 other dessert options. It is typical Austrian but they get quite some tourists and understand (some) English. 

Gasthaus am Predigtstuhl is typical Austrian, including Austrian service (to the point without a smile). But the food is worth it! It’s on top of a hill and I can highly recommend a hike through the woods just up the road or to at least walk to the Wilhelminenberg hotel from which you have an amazing view of Vienna from there public garden. Unfortunately am Predigtstuhl does not have a restaurant (and I would not recommend the hotel restaurant, they were not aware of wat gluten free meant and I had to explain to the cook what he could or could not use). Am Predigtstuhl is amazing with gluten free and have many choices although for dessert it’s just ice cream or chocolate cake. But why would you choose anything other than chocolate cake?!

If you want pizza/Italian food Scarabaccio (8th) is THE place to be. Simply amazing, both the pizza’s as the pasta’s or other dishes. Run by Italian’s they know their stuff. My goodness I’m getting hungry just thinking about their amazing food. They are open for lunch and dinner but definitely book ahead of time (day before / morning of is usually still okay) because everyone wants to go here! Unfortunately they don’t deliver but you can order a pizza for pick-up. Another good option for pizza when Scarabaccio is closed (happens during summer or winter holidays) is Don Camillo

Vienna has a hard rock café (1st), which, as it does in all restaurants, has gluten free burger buns and gluten free brownie for dessert! TGI Fridays says they have gluten free burger buns as well but when I was there supposedly they were out according to one waiter and another waiter didn’t even know what gluten free was so I would recommend the hard rock. 

If you want slightly more fancy restaurant Mini’s (6th) knows how to handle gluten free (just mention it with your reservation so they can prepare) as does Deval (1st). 

For sushi we usually go to EBI’s, they have gluten free soy sauce and a separate allergens menu. However, be careful, according to the menu some their breaded products are gluten free but I have never dared to try it out. Especially since they state their prawn in white wine sauce is gluten free but the two times I dared ordered this I’ve had gluten problems (on the other times we went there it’s always been okay). 

Breakfast/brunch/lunch/confections

Blue Orange is a bagel café which has gluten free bagels, very nice if you don’t want to pack you’re own lunch. 

Sunday brunch is a typical Viennese thing to do, luckily there are a couple of options in Vienna, may favorit or café Schoppenhauer (18th) or the Grüner Salon (6th).

If you’re in the mood for cake/confections in addition to the two spots mentioned above you can go to the café Imperial, café Mozart or one of the many Oberlaa’s found all through Vienna. Don’t forget the Gloriette cafe at Schönbrunn either on top of the hill with a beautiful view of Vienna or inside the palace gates.

Ausnahmsweise is another great spot for gluten free confections! They are in the 6th district and have many delicious treats with a daily changing menu.

Categories
Gluten free Gluten free travels

Austria – insider’s guide to gluten free

Five years ago I wrote a blog post on Vienna/Austria when we were there on vacation. Now I’ve actually lived in Vienna for three years already and living somewhere sure gives you a different perspective on things.

Back then I wrote that Austria was a pretty good country to visit when eating gluten free and that people knew what gluten free meant. Well …. This is true for Vienna, but as soon as you go outside of Vienna it is terrible. Went to Graz for a conference two years ago and there was barely anything there. What they did have was Don Camillo where they had amazing gluten free pizza. They use the same oven but have separate aluminum tins where the gluten free pizza’s are baked and they really know their stuff. There is also a restaurant in Vienna.

I’m in a gluten free Austria facebook group and supposedly they have a bit more now. But don’t even think about going to any of the smaller places without taking your own food. My in laws like to stay just outside of Vienna and even a salad is difficult since it all has breaded meats, croutons or dressings containing gluten. There was one place which said they knew how to handle gluten free but both times we ate there (8 months apart) I had gluten complaints, most likely from cross-contamination. Because this is something they refuse to understand in Austria. If you are very sensitive it’s not the best choice to stay. Especially with all the Wiener schnitzels which get fried in the same fat as the fries. However, it is possible and there are so many gorgeous spots that Austria has to offer just make sure you take enough back-up food. Unless you go to the Zotter (chocolate brand) museum. This ‘museum’ is actually a tour through the factory where you can taste any chocolate you want and however much you like!! And with almost every flavour they mention the allergens and for those which don’t there are plenty of employees walking around who can help out. If you’re remotely in the neighbourhood definitely visit this amazing place.

Supermarkets in that sense are pretty good. Almost all Billa’s have a gluten free rack containing mostly Schär products but they’ll have some bread, cookies, pasta and beer. Spar actually has its own free-from line which is pretty good! The pasta is just as good as the barilla gluten free but cheaper. At our tiny spar they have everything from cereals, to wraps, bread, cookies and pizza bases. 

Another option which has a lot bigger range but slightly more expensive is the Merkur. They have my favorite bread brand; Weizenfrei. Supposedly both Billa and Spar should have some products of Weizenfree but this is store dependent and sometimes even within the same store one week they’ll have something of Weizenfrei and the next two weeks they won’t. Merkur even has sandwiches to-go with ham, cheese or egg (if you’re early enough, they’ll only have a couple per day but still, finding a store which has this is so rare). Weizenfree has recently started their own online shop were you can order things directly or another option with a bit less choice but way lower delivery costs is hausbrot.at. Weizenfree has everything from Lauchenbrötchen to Kaisersemmel, loafs of bread to sacher torte and muffins. I will definitely miss this bread if we ever leave Austria.

Don’t forget to check out the freezer section, the larger spars (Interspar or Eurospar) have gluten free products like fish fingers and Merkur usually has 1-2 full freezers dedicated to gluten free products like pizza’s, bread, cakes etc.

Hofer and Lidl have gluten free products a couple of times a year in a special gluten free week. Hofer does seem to have gluten free pasta and gluten free cookies year round, however they are not in a special section so you have got to hunt down the store to find them. 

Another option are the DM shops, but check before online because not all of them have gluten free products. The Denn’s bio stores also have gluten free just like Pro Kopp.

In Austria almost every menu will have the 14 most common allergies listed which helps making a choice in a restaurant, however, as stated before cross-contamination is something that is not taken into account. And always double check because it has happened that I was enthusiastic about a gluten free brownie as dessert and the waiter telling me this was a typo and it was actually not gluten free. 

There are positives as well as some draw-backs with the gluten free diet in Austria but having to eat gluten free is definitely not a reason to not go. Even in the more remote area’s there will be a Spar or Billa where you can buy your own gluten free food, just don’t expect to find a restaurant that will serve you a three course gluten free meal.

Categories
Closed loop during pregnancy Diabetes Looping through labor

Labor of love and loop – part 2; loop tips & tricks

First off, due to the wonderful guest post from Gem I did not feel I forgot to pack anything. The most thankful item of her list was a socket extension, as she stated, most hospital beds do not have a power outlet close enough for you to hold your phone whilst in the bed. During the induction we had the phone plugged in at all times to ensure a full battery once we would head in to the delivery suite which worked out great. After having the c-section I was extra happy with the fact I could now reach my phone without having to twist and turn behind me. 

A piece of advice my MFM doctor gave me was to have an additional site ready to go in case the first one let go. He had experienced it on numerous occasions that his women would go high, they would pump in all the insulin and not come down only realizing way too late that the catheter had disconnected. Since we knew when we would be induced I also planned my CGM change according to my ideal time-frame that I would have the best days while in the hospital.

The general gist of my labor ‘treatment’ was mentioned in Labor of love and loop – part 1 however there were some things I wanted to elaborate on. I gave my husband complete control of the diabetes side of labor, it boiled down to him feeding me a sachet of fluid sugar worth 12 carbs every 1.5-2 hours once contractions set in. My labor profile was set to 50% of all my insulin in the beginning and we slowly decreased it to 30% once contractions got more intense. 

The mistake we made was to not increase the labor profile once contractions ceased, it’s quite logic, if you go for a jog in the park you also decrease insulin during but go back to normal levels once you’re done. Since I was sleeping and hubby was a little stressed about the lack of contractions and baby actively participating in labor we didn’t realize this in time. I had written down a whole plan for him which explained what to do when, what treatments to do and when to change profiles but we didn’t expect this beforehand and thus it wasn’t in the plan. While we were heading towards the OR we added another 1.5 units but this was too late. After 9 months of non-diabetic sugars baby came out while I was outside of my target. Unfortunately he was 1mg below the cut-off twice so he got two supplementary feedings just to be sure. The two measurements after that he was fine.

Once baby was there I waited a bit to decrease my profiles, also thanks to Gems post. My endo had told me to eat 12-24 grams of carbs without a bolus because my sugars would supposedly crash but I never needed them. A couple of hours after the caesarean, once my sugars were starting to slowly decrease we gently decreased basals and I continuously evaluated and adjusted them every couple of hours. 

Something else that happened after the caesarean was that my Dexcom readings were off all of a sudden. So tired and exhausted of labor and I didn’t actually realize until day 3 post labor that they were giving me a paracetamol pain-killer during the day to cope with the pain from the operation. Since I had a Dexcom G5 this messed up the values. The general gist of rises and falls were pretty good and every morning and evening I would get a stronger medication which did not affect CGM readings so it was only for a couple of hours during the day in which I did some extra finger measurements. 

My set-up:

  • G5 Dexcom
  • Medtronic 722 with Rileylink
  • Contour next blood glucometer
  • Apple iPhone 7 with Loop
  • iPad with nightscout ready to run (although we didn’t end up using this since the nurses realized we had it under control and didn’t want to bother us)

Diabetes / loop things to pack:

  • (Back-up) Riley link
  • Extension cord
  • Chargers for phone & riley link 
  • Sugar tablets / fluid sugar sachets 
  • Juice
  • IV3000 or rock tape to stick down any plasters 
  • Test strips
  • Catheters
  • Extra pump batteries
  • Tablet showing nightscout

Notes in my looping through labor plan for hubby:

We practiced all this in the weeks before labor but I figured it was best to write this all down in case he forgot how to do something / when to change settings in the heat of the moment

  • Target blood sugars
  • If sugars rise to do a finger measurement, check for air bubbles and if my site is still properly connected my body
  • How to :
    • open loop
    • suspend delivery from the pump
    • change profiles
  • What settings to change during vaginal birth vs caesarean 
  • Profile changes for after birth
  • Phone number of my endocrinologist 
  • List of the most common red loop trouble shoots from the loopdocs
Categories
Closed loop during pregnancy Diabetes Looping through labor

Looping through labor – Guest post Gem (UK)

In preparation for my own birth I asked around the closed loop & pregnancy facebook group for other ladies willing to share their stories. Here is a guest post from Gem (UK)

My resounding memory of my first diabetic labour with Nathan in 2014 (pumping with finger pricks) were my plans for an active yoga type birth being completely blown away by a drip of glucose, a drip of insulin, a drip of syntocinon, a drip of fluids, and the multiple wires & belt of the EFM. Lifting my gown to go to the loo and wipe my bottom was like trying to escape from Fort Knox so attempting to do yoga positions between the machinery and wires as the contractions changed was totally out of the question. Long story short it was a highly medicalised very long failed induction involving a lot of laying on the bed and cesarean. I vowed NEVER to do that again. I wanted a natural birth. 

Fast forward to Millie’s labour in 2019 my first intention was to avoid an insulin drip at all costs….if you have a pump that doesn’t tangle up around your body in the same way as a drip why on earth not use it?! My diabetes team had got to know me a lot better and so there was a level of trust between us. At about 32 weeks we discussed my plans on the diabetes side and agreed as long as I was happy then my husband and I were to remain in control of my diabetes via pump & CGM using AndroidAPS. I could ask for the midwives to take over at any point, but on the understanding the midwives would not use the pump or AndroidAPS due to unfamiliarity so it would be a sliding scale via drips. This would also happen if an emergency resulted in general anaesthesia. Which seemed fair enough. This was written into a letter, that clearly stated their confidence in me managing my own diabetes with my own equipment, and was placed electronically on my file, and also in my paper notes so there were to be no doubts, especially if I ended up in another hospital over the Christmas period. I had also reviewed my birth plan with the G7 Midwife (Supervisor of Midwives post was vacant at that time) to ensure my plans of a less medical birth were understood by the team. The letter from the endo taking the diabetes care away from them made this conversation far easier. 

In my birth plan (the non-diabetic side of things) I had declined CFM (continuous foetal monitoring) as a default unless baby was showing signs of distress. Usually for diabetics they are over cautious and use CFM from the beginning, but there is little evidence that this actually has a positive impact and so I chose to decline. The team understood this was coming from a well read and informed choice even if it went against their guidelines and so followed my desires without challenge bar the “we advise but you can choose to decline” statement. Having had these discussions in advance there wasn’t any debate or conflict ruining the atmosphere in the delivery suite. 

So my hospital bag was set up with all the usual stuff, but also an electric socket extension and clearly labeled chargers with both my name & NHS number, and which item of diabetes electronics they were for. I wasn’t taking any chances in running out of power or not being able to reach a socket (the socket extension wasn’t used during labour but on the post-natal ward it was incredibly handy as the sockets were not placed in locations that cesarean mamas could reach easily!). I also had a tablet & stand to display my Nightscout page clearly for all who wanted to observe. The midwives were happy to quietly note blood glucose values from this periodically rather than interrupting me. Word obviously got round the staffroom as several came to visit me on the post-natal ward to have a nose. 

My husband pretends to listen to me about my diabetes and can spot behavioural changes for a hypo/hyper, but isn’t an expert in looping or the maths and settings I use. So in the month before labour I tried to involve him in every dose I gave when in his presence, and ‘sports casted’ everything I was doing e.g. “oh crikey, that’s higher than I expected given my IOB, I wonder if I ate more than I thought, I’ll just do a correction dose using bolus calculator” to get him comfortable and up to speed. I encouraged him to bolus me at meals to get him familiar with the AndroidAPS interface. We agreed on the following tactic for him during labour: 
• Actively keep an eye on numbers and direction. 
• If nearing going out of range then start a temp target in the opposite direction. If this doesn’t nudge things then bring up bolus calculator and dose either insulin or carbs as it suggests. If you have to do that twice and it seems like it’s having little impact then do a profile switch of 20% smaller or greater than the current profile. 
• don’t tell me my bloods unless I ask. If I ask tell me the data and not just “it’s fine”. 

I had a sweep at 38+3/Friday as a compromise on my part for declining booking an induction for 38+6 in preference of awaiting a natural labour. My bloods were erratic that and the following day; a high of 13 mmol and low of 2.2 mmol at one point. I believe it was a mixture of my body saying “what the **** just happened?!” and the counter balance of me trying to be very active to help things along whilst also being exhausted and napping when I could. I used a lot of temp targets, profile switches (AndroidAPS’s version of an override in Loop) and just manual corrections using the bolus calculator.  Contractions started at 6pm on 38+4/Saturday when bloods also returned to normality. I managed some sleep but also danced round the kitchen and bounced on the birthing ball. AndroidAPS kept bloods ticking over happily, a little dip low but no treatment needed. After breakfast on 38+5/Sunday we sent Nathan off to his grandpops’, my doula came round and we kept the curtains closed as I blissfully bounced round my dark cave-like comfort zone. The buzz I got from being just a normal person in early labour at home and not a highly medicalised hospitalised diabetic fuelled me with oxytocin. At 11am 38+5/Sunday contractions were lasting 1 minute and spaced less than 4 minutes apart so we took the 40min journey into hospital. The bright sunlight ripped me out of my zen like state, waiting in the florescently lit room to be assessed and having memories of the previous labour flood back dented my oxytocin stores more. My urine sample showed ketones because I’d only eaten protein for breakfast/snacks and not carbs, a long disagreement with the midwife ensued as she wanted to do a blood ketone sample but I declined; knowing that with my bloods being at 4.6mmol they were absolutely not DKA ketones and they did not need treating with insulin. My husband had to take the midwife out into the corridor to challenge her (he googled the difference between starvation ketones and DKA) and remind her I wanted to be in the zone not discussing things in detail. All that dented my oxytocin stores so much it took another 6 hours to get my contractions back to where they were before coming to hospital. I had been moved to the birthing pool room and spent my time wallowing with my sensor on my arm and my pump and phone both being waterproof. It had taken some persuasion to get this in my birth plan so to have achieved it was giving me warm fuzzy feelings, and having the tech working through it was golden. 

I was trending lower (4s) and we were keeping an eye on it, watching IOB and speed of fall. It all seemed fine. Husband went out to the car to grab something and I leant on the side of the birthing pool creating a compression low. He came rushing back into the room and fed me glucose without checking the next reading due to recieving the low alarm in the car park. As soon as we noticed it was a compression low we used the bolus wizard to dose. We notified the midwife that bloods may go a bit out of range but we knew exactly why and had taken corrective action so planned to ride it out as there wasn’t much more we could do. Bloods did dance along the top of target for a while but my midwife eloquently explained why to the supervising midwife when she popped in to say hello and my bloods were displaying 8.2mmol. It was beyond reassuring to know they were on board and we didn’t need to justify everything. 

My waters broke at midnight and there was meconium so I had to jump out of the pool for the dreaded monitoring. Pain management became harder (baby was back to back). Epidural followed. We had previously done a +10% profile switch at 7am and again at 6pm but needed an extra +20% profile switch around the time of the epidural. Suspect this was due to lying down on the bed, though it could equally be pain management or stress. During pushing Millie’s heart rate kept dipping and not recovering so a cesarean was decided upon. 

When the anaesthetist came to discuss the cesarean plans we offered he could take the tablet with Nightscout page into the operating theatre but the midwives had already shared their trust in the system with him and he was happy to not have sight as long as my husband had it on his phone and alerted him if necessary (which of course AndroidAPS kept me in range so no altering was needed). Occasionally he asked my husband for a blood reading to record in my notes, but generally left the diabetes and looping to us. 

As agreed with my endo, as soon as the placenta was out we did a profile switch to my pre-pregnancy profile. The ease of doing this in AndroidAPS was perfect and just what was needed after all the sleep deprivation. However, fighting a lot of highs later it seems in wasn’t until my milk came in on day 2 post partum that the reduction in basal & ratios was actually needed. 

I planned to co-sleep and get as much skin to skin as possible and noticed that the UNICEF guidelines for this discouraged it for diabetic mums due to the risk of nocturnal hypo being undetected. My endochronologist agreed that with both the alarms on my CGM and AndroidAPS suspending insulin if a low was predicted then the risks for me were incredibly low and so it was recorded in my notes to actively facilitate co-sleeping. Skin to skin is a far more effective method of preserving baby’s heat to prevent hypo from unnecessary energy exertion from temperature regulation in an isolated crib. Baby had no hypos, despite the compression low fuelled dance in the 8s six hours before being born. 

Some tips: 
• Set alarms to something more gentle sounding. Wind chimes etc rather than beeps that’ll jolt you out of serenity and make you shout at your husband “snooze the damn alarm!! Swipe right, swipe right!” 
• When considering sensor placement take account of potential water blocking signal but also any objects you may lean your body on. Make sure everyone in the room (or car park!) knows how to identify a compression low. 
• I found it invaluable having a doula. Those times when my husband had to take the conversation out into the corridor to stop disturbing my zen she was there rubbing my back, or vice versa, and I knew I was not alone. I had two people there for me so one could focus on my diabetes while the other focused on my natural oxytocin. In my discussions of my birthplan the midwife was delighted at the prospect of a doula and had said they wished resources would allow a midwife for the diabetes side of labour and a midwife for the birthing side of labour. 
• All the research out there is based on poorly controlled diabetics. Having read Milli Hill’s Positive Birth Book I learned that guidelines are based on varying qualities of research or opinion and can and should be challenged and not always followed blindly. 

If you take nothing else away from my long ramblings it’s that most of what I’ve written about is mainly labour, or the practical gubbins of diabetes. I’ve barely had to cover looping, and that’s because looping just works merrily in the background doing its own thing keeping things stable and calm. It did need a few nudges but they were minor and easy enough for my husband to do. I had a cesarean again but that was because of meconium in the waters. I wanted a normal non-diabetic birth and I did get what I wished for….sometimes the grass isn’t greener on the other side  

My setup: 
• G4 Dexcom with parakeet and xdrip 
• DanaR pump (waterproof) 
• Contour next blood test kit for automatic calibrations with xdrip 
• Samsung A3 waterproof phone running AndroidAPS and xdrip and uploading to Nightscout 
• tablet showing nightscout website and husband’s android phone following using NSClient

Categories
Closed loop during pregnancy Diabetes Looping through labor

Labor of love & loop – part 1; my birth story

It is the end of December, my baby boy is almost due. My husband and I enjoy the peace and quiet, after tomorrow our lives will be changed forever.

The night before our wedding, two years prior, my sugars were chaos. I had a hard time sleeping from the suspense and then had hypo’s and hypers galore. The morning of the induction I was surprised how well I slept (not counting all the bathroom trips and occasional contraction). My sugars had been perfectly in range all night! All thanks to loop, my sugars sure did try to go up because of the nerves ,yet loop got them perfectly in check and also prevented the relaxation hypo which came after. How I love this semi-automatic pancreas.

In preparation for labor I had trained my husband to take care of my sugars. He would be in charge of my diabetes (as long as he felt comfortable) and I would focus on “popping out” the baby. Through the looping & pregnancy facebook group I had heard so many success stories, I strongly believed that loop would do a better job adjusting every five minutes than a system where insulin is only adjusted every 1-2 hours. To be honest, I also just wasn’t too excited about handing off control to a stranger. 

We arrived at the hospital around 8:15 a.m. There were some routine checks, a last ultrasound and then quite some waiting. Impatience, not knowing what was next and having to sit on a chair waiting for more information slightly raised my sugars. My husband gently told me I was at 160 mg/dl (9 mmol/L) which was definitely not where I wanted to be. Loop was trying but it could not beat the immobility so we gave some extra insulin and a 130% basal override. 

Around 11:30, after what felt like forever, the induction was started. Of course then there was more waiting but now it felt worth it, this time the waiting had a purpose; we were going to meet our little boy. We were now also free to wander about the hospital as long as I would check in every so often. Around 3:00 p.m. contractions started for real, funnily enough this coincided perfectly with dropping sugars (from 120 mg/dl to 68 mg/dl – 6.5 mmol/L to 3.8 mmol/L). Five grams of carbs together with loop was all it took to get me cruising at a steady level between 90-100 mg/dl (5-5.5 mmol/L). Every once in a while my husband would feed me 5-8 grams of carbs which worked out perfectly. 

After 6 p.m. things got though. Contractions were often and intense, after 7 p.m. there were barely 20-30 seconds between contractions, surely I was getting close to meeting my boy. Alas, I was still only at 2 cm, how could this be? Around 8 p.m. I was finally moved from the normal ward to a delivery room, I was at 5cm so they would give me an epidural at long last. My body was tensing, my muscles burned as if I had ran a marathon on three consecutive days, there was no communicating with me, I was in my own bubble. Then came the relief, my goodness, it was heavenly. Contractions slowed a little with ‘breaks’ of 1-1.5 minutes which felt like eternity. Before, when they were following each other so close it felt like all I could do was hold on, breathing with the contraction was out of the question. Now it was a whole different ball game, I felt I was finally able to do my part, breath through contractions, ‘relax’ between them, I could talk a little again and the communication with hubby and midwife empowered me. It still wasn’t easy and an epidural does not take away all the pain but the situation I was now in was what I had prepared for, I finally felt like I was capable of doing this. Good thing hubby was able to manage my sugars because I was out of it before the epidural. Hubby would just give me some sugar gel every once in a while and I think he would tell me my sugars but as long as they were okay I really wasn’t interested. 

Around 1 a.m. I was still at 5 cm. Mentally this was a slight set back, my body was working so incredibly hard yet the result was difficult to see. But my baby boy was coming and we knew a first born could take a while. I started to doubt even more if I could do this. Of course I knew labor was difficult and it wouldn’t be easy, but I was unprepared with the emotional turmoil, with the feeling, that after a great pregnancy, my body was failing me at the most important moment. Thank goodness my sugars were behaving themselves so well! After 1 a.m. contractions started to slow down, to such a level that I could talk normally, I was even able to sleep for an hour. 

After my nap labor became very relaxed, too relaxed. I could talk through contractions, could barely feel them. I was given a drip with picotin and we waited once more. Contractions seemed to be decreasing even more so they increased the dose and we waited longer. The midwife was in and out and discussing it with the doctor on duty. Once contractions slowed they informed us this usually didn’t happen. They were very open in their communication and worries to us. At first we weren’t too worried, it happens more often after an epidural that contractions slow. However baby should be actively participating in labor and it seemed the more active baby became the less contractions I was having. After numerous discussions between the midwife and the doctor outside of our room they came in and talked to us. It was a precarious situation, it could very well be that nothing was wrong at all, it’s a first child and those labors tend to last long. We could go on for at least another 4-6 hours and see what happens. If everything is fine they estimated baby boy would be there after 8 hours. However, they were very unsettled by the fact that the more active baby became the less contractions I was having. At the time they were speaking to me, despite the picotin, I wasn’t even having any contractions anymore. This could be nothing or it could be a sign that something was wrong. There was a chance, albeit small, that the umbilical cord was wrapped around babies neck. The doctor said he didn’t know what to do, it could very well be that if we decided to continue with a c-section people would say that it was unnecessary and could have been prevented. He also said that if we continue for another couple of hours and baby was in distress he could have damage, it would be an emergency c-section where my husband would not be allowed in the room and people would ask him why on earth he hadn’t done a c-section when there was no pressing problem yet. He said it was an impossible choice for him, what did we think? We were not expecting to have a choice in the matter, but because we did we had complete acceptance of it (smart doctor, he must have realized this as well). In the end we opted for a c-section because we did not want to run the risk that our little one would have any problems. The c-section itself was weird, your body is numbed so you don’t really feel pain but I wrongly (!!) assumed I wouldn’t feel anything. Boy was I wrong. You feel a lot, you feel them pushing and pulling and tugging, whereas I expected to ‘feel’ when baby was out this was actually not the case but pulling the placenta out was very uncomfortable. But alas, at 3:50 a.m. our beautiful baby boy arrived into this world. Looking at him I still can’t believe my body made this, that I am capable of producing life. For sure it is a miracle!

Check out part 2 for more details in regard to loop and pitfalls I could’ve avoided.

P.s. We realized too late that when contractions stopped we should increase my insulin. So unfortunately sugars were a little higher than we would’ve liked when we went into surgery. Baby boy was below the cut-off by 1mg/dL twice so they gave him two additional feeds but after that we were all good. 

Categories
Closed loop during pregnancy Diabetes

Pregnancy – before we realized (week 5-6)

Half way through April I started to have less of an appetite and my sugars were a bit troublesome. I figured this was because I was still trying to figure out loop, I had only started a couple of weeks before. Luckily I don’t get sick often, I’ll have a bad cold or mild flu symptoms but usually nothing that keeps me in bed for more than a few days. During a visit to my parents I started to feel quite bad, I barely wanted to eat, was exhausted and I was cold all the time. Once I got home it just got worse and after 1.5 days in bed my husband forced me to visit the doctor. By this time it was so bad I couldn’t even walk  there on my own (it’s only a couple hundred meters) and my husband had to support me. Once we made it to the waiting area, sitting in a chair was too much. My whole body was shivering, my muscles felt like they were on fire, I was so incredibly cold, it was one of the few moments in our relationship where I saw my husband look truly worried about me. 

They let me rest on a bed, hooked me up to an IV with fluids and pain medication and gave me a prescription for antibiotics. Somewhere they asked me if there was a chance I could be pregnant but we didn’t even think about answering this with a maybe. Pregnancy was so far from our minds at that moment. It took 1.5 days of sugars between 200-360 mg/dl (11-20 mmol/L), an x-ray and a week’s worth of medication but then I finally was back to normal. With the exception of a lack of appetite and exhaustion. Here I was thinking loop did such a good job since I was back in range after 1.5 days, cruised around 200 mg/dl (11 mmol/L) for most of the day with only a few spikes to 360 mg/dl (20 mmol/L) and only a couple of weeks of experience. It took two weeks for me to get better after which I was still exhausted and had a lack of appetite but I figured this was because I was still healing. We didn’t know until a couple more weeks…

Categories
Closed loop during pregnancy Diabetes

Pregnancy and type 1 diabetes with a closed loop – the preparation post

Congrats! Most likely you’re reading this because you’re pregnant or trying to conceive. Spoiler alert, I’m typing this while my little one is gurgling in the play pen and happily “chatting” to the owls on the mobile above his head. Every once in a while he laughs about the sounds he is making. Pregnancy is tough, diabetes makes it even more complicated. Enter all the clichés about marathons, endurance, being strong etc. But it is definitely worth it! 

Keep in mind that anything written on this blog, but especially in this pregnancy and closed loop series, is based on my own experience. It is absolutely not meant to be used as medical advice. It may inspire you to try things you hadn’t thought of before, but always, ALWAYS, discuss this with your medical team first!

A book I can highly recommend, although it doesn’t take closed loop into account, is Type 1 Diabetes & Pregnancy by Ginger Vieira and Jennifer H. Smith. Basically this is the What to expect when you’re expecting but for type 1 diabetes. My diabetes has never been ‘by-the-book’ but even for me this book was accurate and it helps so incredibly much to know what to expect from your sugars each month so you can be more alert on making changes.

Another great resource for me was the looping & pregnancy facebook group. This group gave me around the clock support and motivation. The great thing is that there are people on there from around the globe so even if I had an urgent question at 3:00 a.m. there was someone in the world and in that group who was awake and ready to help out. The ladies in this group are such a lovely bunch and incredibly supportive and understanding. We’ve all been there, we know the anxiousness and usually can help out improving sugars or decreasing stress levels. 

One last piece of advice, during labor you do not want to be thinking about your sugars (or loop). Think about who you want to take care of your sugars. Will you let the hospital regulate you with their sliding scale set-up so neither you and your partner need to think about it? Or will you train someone who will be there during the delivery how to manage loop and your blood sugars? There are pro’s and cons to both and it can’t hurt to start thinking about it. Either way it will be good to train your partner on your diabetes management and loop so when you have an off day they can help you out, it may also help to include your partner in such an important aspect of your pregnancy. 

Whatever happens, there will be moments where you wondered why on earth you are putting yourself through this stress, just as well as there are moments you won’t be able to stop smiling because you are AMAZING and you are creating life just be sitting here and reading this blog. However difficult and stressful it may be at times, take a moment each and every day to just enjoy it for a couple of minutes. You are doing the best you can and deserve to be proud of that!