Our Allergy Journey

I've been thinking about writing this post for sometime now but I always worried about how it would make me look as a new mumma. I've decided to go ahead and share our story though because if it helps one new mumma struggling with baby allergies, it will be totally worth it.

As many of you know, Lilly was born 6 weeks early at 34 weeks due to severe pre-eclampsia. I am actually waiting for an appointment meet with my obstetrician to discuss whether I actually had HELLP but that's a whole other blog post.

Lilly was a teeny tiny 1.59kg or 3 pound 8 which meant she was just 90grams shy of being labelled a low birth weight bubba. This label brings with it a whole load of special considerations and a trip to the NICU rather than getting to stay in Special Care where she spent her first 4 and a half weeks of life.

Anway, we've spent Lilly's entire life battling between her real age and her corrected age. We never got any advice on whether to start Lilly on solids when she hit 6 months real age or to wait the extra 6 weeks until she hit 6 months corrected. I watched her closely to see whether she was showing signs of readiness (no tongue reflex, looking for food and trying to grab at it while I ate and sitting quite well with limited support). Once she was meeting most of them, we got started. 

 Looking back now, I wonder whether we should have waited another few weeks. Lilly's first food was some mango smoothie made on just yoghurt and mango. There were no reactions but she certainly didn't enjoy it. I left it a few days then tried some veggies and toast which she actually liked so we continued with baby led weaning. On one occassion, she had a taste of milk froth and a little red dot came up on her lip. I was really unsure so we decided just to watch her closely after her next taste of dairy.

Not long after, I decided to give Lilly some yoghurt to play with. She LOVED it and was covered head to toe. Within minutes, she developed a nasty rash which just got darker and darker. She started to develop welts all around her neck where the yoghurt had been touching her. I sat at the front door and rang Hubby in a panic who was luckily just a minute or two from home. I remember being really unsure whether or not I was overreacting or whether I needed to panic a bit more. Those two minutes felt like a lifetime!

When he walked through the door, he confirmed my fears and we rushed up to the doctors who is also just a few minutes down the road. We didn't even put clothes on her! They squeezed us in to see my GP straight away. The picture below was while we were sitting in the waiting room. It was very red wherever the yoghurt touched her, even up near her eye. I was so scared even though she was quite happy.

The GP came to the conclusion that it was just a skin reaction and to keep offering as much milk as we wanted. We were not happy with this diagnosis so booked in to see another GP (the one my Hubby usually sees). After filling him in on Lilly's past, he agreed that it sounded like a milk protein allergy and sent us for allergy testing.

We continued to avoid dairy but had a few silly slip ups, the worst being mashed potato at a restaurant. The first 6 pictures below were the result of a few spoons of mashed potato. The next few were from soldier eggs and toast. It's only a very light rash but still there. We assumed I had put too much margarine on her toast because she had eaten both egg and margarine on toast many times.

About 2 weeks ago, it was finally time for Lilly to have her allergy testing done! She was very brave while the top allergens were tested (milk, egg yolk, egg white, white fish, shellfish, peanuts, sesame seeds). To our surprise, both egg white AND milk came up positive! 

 

After meeting with the specialist after her test was finished, we came to the conclusion that Lilly is allergic to the uncooked protein in both milk and eggs. This means she can tolerate it in her system when very well cooked (180 degrees for 20 mins). Anything less results in an allergic reaction, which in her case is hives. She is still too small for an epi-pen so we must be very careful. Lilly still loves quiche for dinner on occasion but we are very careful to avoid anything that may not have the proteins cooked out enough. We have been rash free ever since the appointment!

It has been a very stressful and scary few months while trying to determine what was going on. I often wonder whether starting on solids too early may have contributed to her allergies? It's very bizarre because she tolerated milk based formula for about a month as a newborn!

Mummy guilt and the lies I've been telling myself

Before I fell pregnant, I knew I was going to breastfeed my babies. I didn't think there was any other option, that I would power through any issues we had and come out the other end successfully breastfeeding my baby. When my husband and I fell pregnant, I started researching and learning everything I could to make sure that I nailed feeding for our precious little bubba. I joined the Australian Breastfeeding Association and read their book from front to back. I signed up for their class but unfortunately couldn't make it because I got very sick towards the end of my pregnancy (due to pre-eclampsia). I was so determined to breastfeed.

But then Lilly was born prematurely at 33+6 weeks very quickly and very unexpectedly (which you can read about here). Suddenly everything I had learnt about breastfeeding went out the window. I couldn't have skin to skin with her immediately after she was born because she was rushed off to the Special Care Nursery and I wasn't awake for her birth. When I woke up from the surgery, my husband started collecting my colostrum with syringes with some assistance from my nurse. The following day, I started expressing using the hospital grade Medela pumps. I couldn't wait to start trying to breastfeed Lilly but she just wasn't strong enough yet.

Fast forward a week and we begun skin to skin. The nurses said that Lilly would find my nipple on her own but nothing happened. She just wasn't interested. I even tried putting my nipple in her mouth when she yawned and took our first fake breastfeeding photo to try and make myself feel better about our lack of breastfeeding. I told everyone we had started breastfeeding and how amazing it was and how clever Lilly was...I was such a liar!!

When Lilly was two and a half weeks old, we were finally able to get Lilly to attach and suck momentarily and things started improving. Each day she would suck just a little bit more and she would just have a top up through her feeding tube. Eventually we got one whole breastfeed and I was over the moon. I finally felt like I was a real mum! Her progress was quick and before we knew it, she was having 2 feeds a day with no top up! At the time, I felt like it was all taking too long but she really did get the hang of it pretty quickly, she just needed to build up her strength.

And then it happened. Lilly graduated from the Special Care Nursery and we were able to wheel her out into Maternity and room in together for the very first time in her four and a half weeks Earth side. I was so excited to begin our breastfeeding journey for real. But that's when it all fell apart. We got through the day no problems but by the time we got to her 5th feed of the day (she was on 3 hourly feeds) she was absolutely exhausted and wasn't latching or sucking correctly. We spent our 48 hours in maternity not sleeping and trying our best to breastfeed but with limited success. Whenever the nurses came to check, I lied to myself and the nurses when I told them what a great job she was doing. I guess I thought that if I told them I was doing great, we would do great...but I really just didn't want to lose her again...I just wanted to get her home.


Finally our 48 hours was up and the pediatrician did her release check-up...but she had lost a whole 100g in just 48 hours. They wanted us to stay but ended up letting us go home on the condition that we have her weighed again in another 48 hours and came back if there was no improvement. In hindsight, we should have stayed. We should have told them we were struggling but we didn't. We wrapped up our precious baby girl and left that hospital as fast as humanly possible. I kept telling myself it would be okay, we just needed to get away from it all.

When we got home, I relaxed a little but we were still struggling - I was so stressed that my milk almost completely dried up - I went from expressing over 200mls per 20 minute session to a terrifying 10mls. I saw my GP and started on some medication to help boost my supply (which worked practically instantly!) and I decided to give Lilly an expressed milk bottle...or two...or three. We started trying a breastfeed then topping up with my expressed milk. I felt better, Lilly went back to sleeping like an angel and life with a not-so-newborn was amazing....but I felt all this guilt. I felt like a failure for not being able to breastfeed her exclusively. I felt like after our shitty birth experience that I needed to be better and I needed to breastfeed.  I continued telling everyone what an awesome job we were doing breastfeeding and that she was a breastfed baby but I was a big fat liar. We were lucky if we did two full breastfeeds a day - that's not a breastfed baby at all!

Fast forward 5 weeks and we are still expressing and bottle feeding. I have since got my hands on some amazing Medela nipple shields and we usually try two breastfeeds a day and Lilly seriously kicks butt with them...but she takes an hour to feed which my lactation consultant says is too long for a little preemie with little energy. So at around 10am, we have one super long breastfeed and then we rock the bottle for the rest of the day. I am finally feeling at peace with our feeding and I no longer feel like a failure. When someone asks if we breastfeed, I still say yes but now I fill them in on the details. I think that lying about it just made me feel worse....I feel like everybody else either breastfeeds or they formula feed but there's a whole other breed of mummies out there just like me who express and bottle feed. 

I must say, I really love the connection Lilly and I share during a breastfeed and the way she pokes and prods at my boob to stimulate the milk..there's really no words to describe how amazing it feels and I can't wait for the day when she is much stronger and able to breastfeed exclusively....but for now I am loving the way she looks up at me when she's having a bottle...right into my eyes as if she's saying, "I know it's not what you wanted Mummy, but thank you for not giving up on the boobie milk...I love you" and that makes it all so worthwhile.

Lilly's Stay in Hospital

I've been working on this video for Lilly since I was discharged from the hospital. I wanted to put together some pictures and videos that told the story of her stay in the Special Care Nursery. I have finally just finished it and I absolutely love it - I just know it will be treasured by her when she's a bit older. Now I just have to start on her little photo album!!

Newborns are HARD but home time yay!

We have spent the last two nights 'rooming in' at the hospital and I won't lie...it has been really really hard. I guess you could say that I was a little naive. In the nursery, Lilly was being breastfed 4 times a day and tube feed for her other 4 feeds. I figured she was in such an awesome routine that it would be easy to move out into the ward and continue on with this awesome fairytale routine where Lilly woke 3 hourly for a feed and went back to sleep. Boy was I WRONG! But doesn't she look like a little angel here?

Problem 1: Lilly refused to sleep at night and I fell asleep with her either screaming herself to sleep on my chest or sleeping contently beside me in the bed...which was a big no-no in the hospital. 

Problem 2: She refused to stay latched to my boob for any longer than 5 sucks in a row. And then she would scream after coming on and off a few times and I'd have to put her to sleep with me in the bed and start the vicious circle again.

This crazy dance of scream-try to feed-scream again continued all night for both of the nights we roomed in. I spent a lot of the night sitting rocking her back and forth with tears streaming down my face...it was hard. So very hard. At 4am the first morning, I messaged my husband with a river practically flowing down my face, chest and into my lap telling him that he needed to take the day off and come in and help me or I'd have a mental breakdown. Of course he obliged and of course Lilly was a little angel as soon as Daddy got there...but we were still struggling with the feeding. I didn't tell any of the nurses because I just wanted to get her home with us where she belonged. Looking back at it now, I should have asked for help but I was just too damn scared. 

We finally finished our mandatory 48 hours of rooming in and just had to wait for the pediatrician to come in and discharge us. He took what seemed like the entire day...and when he finally got there and weighed Lilly, she had lost a whopping 100g in two days. We then had to wait for another pediatrician who wanted us to stay another night...but we declined and took her home anyway and looking back now, we definitely made the right decision! The hospital wasn't a nice place to start bonding with our baby and I found it so hard being away from my husband. We packed Lilly up and drove very carefully home.

When we got home, we introduced the fur babies to our human baby and they have pretty much stayed clear from Lilly since! They have found it really hard not sleeping in our bedroom with us and I really miss their warm cuddles but now I have Lilly to cuddle! I must say, being at home feels like a weight has been lifted from my shoulder - I just wish we could sort out these damn breastfeeding issues...but that's a whole other post!

Family time in the hospital

Miss Lilly is doing so well in hospital! Since my last post, she has begun breastfeeding and we have had so many cuddles with her - she's even had her first bath! We have basically been living at the hospital trying to get Lilly to feed for 4 of her 8 feeds in a day so that we can board in at the hospital and come home. I won't lie, it's getting so hard to leave her there at the end of our visit and it's becoming very frustrating that she's so tiny and not able to feed as well as some of the other babies...but we will get there. Today I'll just share a few pics from our last week in the SCN.

 

 

 

 

First cuddles + a hospital update

What a crazy two weeks it has been! I am finally out of the hospital but Lilly is still in the Special Care Nursery (SCU) getting stronger and stronger. We haven't been able to start breastfeeding yet but once she gets the hang of it, we should be able to bring her home - she's doing so incredibly well!

I had my very first cuddles (and usually get to have a cuddle each day when I visit) and we also took our very first family selfie haha - we're all looking very tired but we're battling on! Kurtis and I have been spending lots of time in the nursery getting to know our baby girl. We're hoping to give her her very first bath tomorrow! Kurtis still hasn't had a cuddle yet though but he should get one tomorrow when we give her a bath - so exciting!

 

Welcome Lilly-anne!

On Tuesday the 27th of May at 1:19am, we unexpectedly welcomed our baby girl, Lilly-anne, into the world! After spending a very long 3 weeks feeling awful (vomiting, diarrhea, headaches, migraines and fevery chills), I decided to head to the hospital for a second time. I hadn't felt much movement from the baby either so I really just wanted some peace of mind.

I rang my grandparents and they drove me up to the hospital. The midwives hooked me up to the tracer machine and bub was moving okay but not as much as usual.  They kept me there for a few tests and decided to test my blood and urine. I was given the choice to either hang around and wait for the results or to go home and they'd call....we decided to wait. By this stage, my sister Libby was also there waiting with us. When we went upstairs to check on the results, they told me I had to stay overnight for monitoring. I was booked me in for some more scans as bub wasn't growing very well either - she had dropped down to the 12th percentile and they estimated her weight to be about 1500g. I was a bit upset but knew they would take good care of me and I put on a brave face. My grandparents left and Libby stayed with me until Kurtis came up with some clothes.

Kurtis and Libby eventually left and I don't remember a lot of what happened next. I do remember them telling me that my blood pressure was slightly elevated and that they were thinking I would probably have to be induced within the next few weeks to make sure that bub was nice and healthy. At about 11pm, they checked my blood pressure again and it had rocketed up to about 180/120. At this stage, they decided that I had pre-eclampsia and that I would need to have my baby in the morning. I remember bursting into tears so they rang Kurtis who raced up to the hospital again. I remember them giving me a steroid injection to help develop bubs lungs and a tonne of medication which made me feel horribly sick - I couldn't stop vomiting and shaking. By the time Kurtis got to the hospital, they begun preparing me for an emergency cesarean because my blood pressure had gotten to the stage where I could have either gone into shock, had a stroke, or even worse...I could have lost the baby. 

I don't remember anything else from that night. Kurtis tells me that he rang my Mum who raced up to the hospital with James, Hannah and Libby (my siblings) so that they could be there for the birth and to support Kurtis who wasn't even allowed in the operating room because I was completely knocked out (apparently due to the risk of bleeding out with an epidural because my liver and kidney were shutting down or something along those lines). I faintly remember seeing my Mum and I sort of remember lying on the table and having everyone making jokes to try and keep me calm.

Miss Lilly-anne was born at 1:19am the following morning and weighed a teeny tiny 1590g - she was such a little fighter and came out breathing on her own - she didn't need any oxygen despite only having 1 steroid injection just 2 hours before she was delivered. I still can't believe that my scans from 2 weeks prior were exactly spot on. It makes me feel so sad though that my placenta obviously wasn't working at full function for quite some time though which is why I was measuring so far behind at my appointments, why Lilly wasn't growing very much and why I had felt so ill for so many weeks prior to her birth.

I sort of remember coming out of the surgery and talking to my Mum and Kurtis. Apparently the first thing I said was "Is Lilly okay?" and Kurtis tried to show me photos but I was too out of it to even open my eyes. He tells me that once I knew she was okay, all I could talk about was our birth and maternity photography! They transferred me to the ICU where I stayed for the next few days so that they could monitor me very closely - I believe I needed to be on oxygen for about 48 hours. I had my very own personal nurse who even managed to sneak Lilly out of the Special Care Nursery so that I could see her in person but I don't really remember it at all. 

I spent the next 4 or 5 days in the ICU and Kurtis didn't leave our sides. He was either in the ICU with me or spending time in the nursery with Lilly. On the second day, I had to go under the knife again when I developed a haematoma. This time they gave me an epidural so I was awake for the entire procedure. I remember being terrified but apparently I ended up falling asleep on the table all by myself haha. Lilly continued to kick butt in the nursery but ended up needing to go under the lights due to some slight jaundice. A few days after her birth, I was able to get up with a lot of assistance. My lovely nurse helped me to have my first shower and then wheeled me down to the special care nursery so that I could touch Lilly for the first time. I remember shedding a tear or two when I saw how absolutely tiny and precious she was! It's a moment I will never forget.

 

It was definitely not the perfect, natural, calm hypnobirth that I have been preparing months for and I think a lot of people were waiting for my baby blues to kick in but thankfully the hormones didn't seem to get to me. In the end, I am just so incredibly happy to have Lilly in our arms where she belongs. The nurses reminded hubby over and over how lucky he was to have both of us safe and well as it could have ended with him losing one or both of us if I hadn't of been in the hospital when I was. I still can't believe she's here!!! I am writing this post several weeks after her arrival so keep an eye out for updates on the rest of our hospital stay...it was certainly a long one!