Birthing at Home After 2 Cesareans in Ireland

Standard
Birthing at Home After 2 Cesareans in Ireland

 Home Birth after two Unnecesareans 

(and a hospital water birth with postnatal trauma)
~

Seven years ago I became a mother for the first time.

.

Despite baby and I both being in perfect health, after a straightforward, healthy pregnancy…. that birth involved bright lights, needles, machines, drugs, invasive examinations, strangers, scratchy hospital gowns, excruciating pain, exhaustion, tears, more drugs, more strangers and eventually a scalpel.  I didn’t see my baby boy for nearly an hour.

~

Fifteen months later my second perfectly healthy pregnancy ended in surgery too. Cold, clinical and detached. I cried through most of the paperwork prior to what is referred to as my ”elective section”. I didn’t choose it though. They told me I had no choice. I didn’t get to hold my baby girl for forty five minutes and when I did my body was so cold due to shock she had to be taken away again until I was stable.

.

When I learned that neither of those surgeries should have happened I promised myself I would do everything I could to prove that it was the system that was flawed, not my body.

So I read the right books, joined the right groups and asked the right questions. I found a supportive consultant, changed hospitals, hired a doula and fought for my right to birth on my own terms.

.

ina-may-guide

.

Third time around I finally got to experience my own spontaneous labour after 40 weeks and 6 days of pregnancy. It was honestly thrilling to feel contractions and know the power was coming from me and not from drugs or machines. Thanks to the incredible support of my husband and my doula (and the confidence of my wonderful consultant) after a very positive labour and an extremely long, exhausting second stage, I pushed my baby girl out into a hospital birthing pool.

.

2013-02-14 09.16.42

.

She was born with a rare facial condition however and was immediately taken from me and brought to intensive care. I was in shock, traumatised by our separation and terrified for her health. I didn’t get to hold my baby girl for days. She spent five weeks in hospital.

2013-02-15 13.44.00

.

Her birth, nearly four years ago, was empowering despite the trauma we both endured afterwards. After two cesarean sections I had achieved my goal of an unmedicated vaginal delivery and with all the medicalisation that followed I was proud to have given her the gift of a natural birth and myself a much easier physical recovery.

~

Five months ago I became a mother for the fourth (and final) time.

.

Despite the two scars on my uterus labelling me ‘high risk’ and the emotional baggage from my last experience….that birth involved candles, controlled breathing, granola, pineapple juice, my own living room, movement, friends, essential oils, massage, hugs, siblings, love, unbelievable joy and eventually pancakes. My baby boy and I were never separated.

~

It took me years to find the knowledge, confidence and support I needed to achieve the birth I had always been capable of, to prove that Ina May Gaskin had been right all along; My body is NOT a lemon!

.

your-body-is-not.png

.

 

The absolute euphoria I felt as I lifted my baby boy to my cheek and kissed him for the first time, on my living room floor, is a feeling I will never forget.

~

 

My Home Birth story goes something like this…

To protect myself from the negativity and ‘risk bias’ I felt would inevitably come from our healthcare system I opted instead to hire a private midwife from Neighbourhood Midwives Ireland. They had only just become insured for VBAC homebirths in Ireland and I waited anxiously to hear if I was a candidate for their care.

.

Once approved only the cost gave us hesitation but we agreed that this was something worth investing in for the level of care, professionalism and absolute devotion we received as clients.  We were paying to protect our baby’s health and my own as I knew my chances for a normal, natural birth were highest if I stayed where I felt safe and with people I trusted.

.

I was delighted to be under the care of a midwife that I already knew personally and who is now a dear friend. My pregnancy was very straightforward and my home antenatal visits were always a total joy especially when my older kids got to join in and play ‘midwife’ too !

.

13396645_1206478126059381_616567099_o

.

A highlight in my last trimester was the gorgeous Mother Blessing, my doula, Anne organised for me. It was such an emotional oasis of calm and beauty at a stage in my pregnancy when I was feeling little of either. Surrounded by my mama tribe I was pampered and adorned. There were delicious homemade treats, hand drawn affirmations and I was infused with positivity and good wishes for my birth. I highly recommend every pregnant woman be treated similarly.

.
.

My ‘due date’ came and went as I knew it would. Having been so composed last time and despite fully expecting to go past 40 weeks, I found myself extremely impatient waiting on this baby. Maybe it was the summer heat, or the fact that the holidays meant the kids were all at home but I was frustrated, heavy and irritable -labour couldn’t come soon enough!

.

At 40+1 there were a few positive signs. My daily walk had brought on some very uncomfortable sensations,  I felt pressure in my pelvis like never before and was weeing more often. This had to mean something surely! Tessa was still nursing at bedtime and while I had limited her feeding throughout pregnancy I now encouraged it in the hope that the strong braxton hicks it inevitably started would turn into something productive.

.

2016-07-25-20-41-35

.

After enduring hours of pressure and strong BH’s I was starting to feel hopeful ….. so when it all disappeared overnight and I woke feeling absolutely nothing, I was completely despondent. My daily power walk failed to have its usual effect too, I felt like I could have climbed a  mountain.

Baby was clearly never coming out and I resigned myself to being pregnant forever.

.

The following day at 40+3 I noticed a slight pink smear when I went to the toilet but nothing significant. The pelvic pressure and very strong braxton hicks returned while putting the kids to bed around 7pm. Having been fooled days earlier I was sure these too would vanish so did my best to ignore them.  A couple of hours later and I began to wonder if I should start paying attention… I washed my hair and messaged Nathan (who was at work) and my midwife, Paula to say I was on my birth ball and the BH’s seemed to be very frequent. At 9.30pm she asked how regular they were I downloaded a contraction timer app and began to keep track.

.

I was stunned when the little timer showed that the surges were coming like clockwork every 5 minutes and lasting 50 seconds !!  I relayed this information and by 10.30pm my birth team were officially on their way.

Even so part of me still felt that this would turn out to be a false start and they’d have wasted a trip.

.

The house was quiet and I was alone downstairs. Just me and bump, relaxed and calm, gently bouncing and rocking on my pink birth ball and appreciating the beautiful fact that I was right where I wanted to be.

.

I was still using my Daisy Birthing techniques rotating and breathing through each wave,  when Paula arrived just after 11.30.  Although I could feel my breath getting ragged through some contractions I was coping fine. It was really only when Paula informed me (after a very gentle and respectful cervical exam) that I was 6 cm dilated that I began to believe this was really it …. all the planning, all the history that went into the decision to birth at home and the time had finally come, it was happening….I was having a baby!

.dsc_0235

.

Nathan was home now and by 1am my amazing friend and doula Anne was on her way. Jessica from Hummingbird Photography arrived at 1.40. I’m so unbelievably grateful for the images she captured for the rest of the night/morning.

.

My contractions continued to come every 5 minutes over the next few hours. The sling in my living room doorway (used as a kids swing normally) proved perfect for pulling on during contractions. I  chatted, ate granola and drank coconut water and fresh pineapple juice, joking with my champion-cocktail-maker-husband about the lack of ice for his labouring wife!! I was still coping well, breathing through each pain but was very grateful to now have Paula’s support.

.

dsc_0279

.

Midwife Dan was next to arrive and had brought a CUB inflatable birthing stool. I was keen to try it out as I’d seen it mentioned in birth groups. Around 2.30am I was kneeling over the CUB and breathing gas and air to help as the pain increased. The surges were definitely taking all of my concentration now and everything from here on is pretty hazy in my memory. I think this is what they call being in the ‘zone’!

.

I do remember crying when I heard Anne, my doula come in at half three. Through a haze of hormones, relief and genuine gratitude that she’d made it, I sobbed happy tears and embraced my friend.

.

hummingbird-birth-pic-3

.

Between surges I was freely eating, drinking and laughing with the world’s greatest birth team.

.

dsc_0273

.

During the surges I would breathe, rock and lean on the CUB. Anne and Paula were always on hand to talk me through as the contractions got more painful. They’d squeeze my hips, remind me to breathe and keep me calm.

.

By 4am I was feeling really exhausted. I had some more of Paula’s amazing homemade granola and tried to rest briefly on the sofa with Nathan. I was glad of the opportunity to recharge a little but the pain was much harder to cope with in a reclined position.

.

.

Once up again we were keen to make progress as my energy was fading and so the ever effective but painful pilgrimage to the toilet upstairs was called for! The stairs seemed to go on for miles and the trip always brought on the most painful (and I’m told most effective) contractions.

.

dsc_0293

.

To help baby into a better position Anne began using the Rebozo Sifting technique. The gentle, rhythmic lifting and shimmying felt really soothing and it was nice to feel the weight of my belly supported especially as I wasn’t using a birth pool this time.  Midwife Dan was also familiar with the method and after a little instruction Nathan was able to help too.

.

.

As the intensity of the surges continued to increase I was grateful for the experienced and skilled hands guiding me. From reiki to good old fashioned hugs, hand holding and constant reassurance, I was supported physically and emotionally.

.

.

I laboured through the early hours. Always upright, I moved around changing position often. Letting gravity work with my body to move baby down. Paula quietly checked the baby’s heart rate after each contraction regardless of my position. Professional and considerate as ever, these checks went almost completely unnoticed by me and never broke my concentration.

.
.

The summer sun was peeking through the blinds when shortly after 6am, while kneeling over the CUB, I felt a splash as my waters broke over my knees. It was an encouraging sign of progress and one I needed as I was desperately tired and was letting fears of another lengthy second stage creep in.

.

dsc_0472

.

With my stamina fading it was the turn of the two incredible men at my birth to step up. Nathan and Dan provided vital physical support at a crucial stage. I’m so thankful they were there when I needed them.

My early riser Cassie (age 5) came down in time to give me quick hug before her brother was born.

.

.

Around 6.40 I could hear my moans get low and guttural, the deep telltale groan that comes with feeling ‘pushy’ towards the end of a contraction.

.

dsc_0507

.

I was completely exhausted and in my head wanted nothing more than to stop and sleep …but my body was pushing. Not because I was 10cm dilated, not because someone told me to or because I was ‘allowed’. My body was pushing because it knew what it was doing. Half an hour and a good deal of primal noise later, a little head began to emerge.

.

I remember feeling such relief that we were at this point. Paula used counter pressure and encouraged little pushes between contractions to prevent tearing. I tried to comply but the pushing was totally involuntary, I wasn’t doing any of it – it was just happening…..and at 7.18 out he came!

.
.

Nathan announced we had a boy, Paula passed him through my legs and I got to meet my new son!

.

dsc_0544

.

He was perfect, everything was perfect and I was ecstatic.

.

.

High on endorphins, I kept thanking everyone, crying and repeating “I just had a baby in my living room!”

.

Cathal, Cassie and Tessa were introduced to their baby brother  Naoise (nee-sha) right there in front of our fire place. A newly formed family of six, we hugged and gazed at the new arrival surrounded by love and captured beautifully by Jessica.

.

dsc_0566-2

.

I finally got my crazy, beautiful ‘I did it moment’. I got to experience what it was like to have zero separation, completely uninterrupted skin to skin and I finally got to give this baby his full blood volume. #waitforwhite

.
.

With help I shakily carried my prize to the sofa to continue our snuggle with his brother and sisters.

.
.

Naoise latched and fed as naturally and easily as is humanly possible… the ease of it in stark contrast to my last breastfeeding journey and such a natural continuum from the birth. This was how things were supposed to be. I savoured every second.

.
.

My midwives kept an eye on blood loss as Naoise happily got his first bellyful of colostrum, his little newborn sucks helping my uterus contract. I’d planned a physiological third stage so we waited for my body to be ready and just after 8am without any intervention I birthed the placenta. Midwife Dan offered to make me a placenta smoothie to help reduce blood loss and I gladly took him up on it. The rest of the placenta and it’s lovely long cord went to Sunrise Birth Apothecary to be returned as a jar of capsules to help in the weeks after birth.

.

hummingbird-birth-pic-22

.

My mummy arrived a short while later to find me on the sofa nursing her new grandson. Seeing her was incredibly emotional and perfectly timed.

.
.

By 9 o’clock Anne and Paula were quietly tidying and packing up, mummy was dressing the older kids and midwife Dan was busy in the kitchen making me pancakes, as if this day couldn’t get any better!!

And soon the only sign that anything incredible had happened here at all was the new 7lb 6.5oz baby boy… and his mummy and daddy …quietly falling in love.

.

.

I had got everything I wished for. No drugs, no strangers, no needles, no stitches. From start to finish it was both ordinary and extraordinary. My very own ‘everyday miracle’.

And for the rest of my life when something is hard or I’m told it can’t be done I simply have to remember how impossible a dream having a homebirth seemed after two cesareans. I just have to remember how strong we women really are … how strong I really am.

Later I would discover that his birth was the first home birth after 2 cesareans in Ireland. If that’s true I feel immensely proud but also incredibly sad for the countless other mothers just like me who aren’t supported in our system and told they “can’t”.

If you are one of those women I want to share our story so that you know it can be your story too.

You are just as strong and capable as I am.

Surround yourself with people who believe in you, fill your head with positive birth stories and listen to your heart… !

2016-08-11-09-01-48

 

Tessa’s Eyes; Sorrow, Surgeries and Sight.

Standard
Tessa’s Eyes; Sorrow, Surgeries and Sight.

Tessa’s Eyes.

When Tessa was born the issue obvious to everyone was that she didn’t have a nose- it  was immediately apparent and impossible to miss. It was as plain as the [lack of] nose on her face … It was so unusual … so frighteningly rare in fact, that it dominated everything in her first days. Her daddy and I were heartbroken that our beautiful baby wasn’t ‘perfect’. We were confused about what this actually meant for her and how the doctors would ‘fix’ it. The medical staff were completely consumed with dealing with the issues arising from her single airway and how to keep her breathing unobstructed since newborns automatically breathe through their noses.  She was monitored closely for oxygen saturation and intubated, meaning they placed a large tube down her throat and taped it to her face so she couldn’t close her mouth.

2013-02-18 13.18.25

The consultants felt that the best course of action was to give her a tracheostomy tube as a second airway, which would allow her to sleep and eat as normally as possible. We agreed, after much crying on my part, and temporarily moved hospitals for the operation (the Children’s hospital is across the road from the maternity hospital that houses the Neonatal Intensive Care Unit). Here the  set-up was completely different and now that we were free from the restrictions of intensive care and I was finally able (actually encouraged) to hold my baby as much as I wished ! Which was ALL of the time 🙂 It felt amazing and because her new tracheostomy meant her face was free from the large tube, I spent every second  just gazing at her – exactly the way any mother drinks in her newborn.

T 3 weeks old

T 3 weeks old.

Over the next couple of days though I would notice that Tessa’s eyes didn’t quite look right and they didn’t look like each other either. Hoping fervently that it was just the light or my imagination, I was  reluctant to mention it, especially since she’d been in NICU for 8 days and they had done all kinds of tests and scans. Surely if something was wrong they would have picked it up when they assessed her. But as I sat staring into her eyes late one night I was convinced and called over the doctor. I told him that I thought she was only ‘seeing’ me from her right eye, even though that eye actually looked worse than her left.  A 20 second basic eye examination with his torch was enough for him to be able to tell me that her eyes did indeed have  several issues, not least of which was a cataract on her left and he would make a referral to pediatric ophthalmology.  I tried not to worry too much, still confident she was able to see me at least some of the time. The doctor called for her notes and  flicked to her assessment pages where typed under “EYES:” was “NOTHING NOTED”. I was angry since it was clear that no-one had bothered to check her eyes – you only had to look to see they weren’t normal.

After getting her trachy.

 

My husband was juggling caring for our two toddlers at home and supporting me at the hospital as much as possible but with a two hour round trip he could only be present so much of the time. We had already had all kinds of specialist appointments like cardiology and ENT etc. and I was still hopeful about her eyes so hadn’t specifically asked Nathan to come up for her eye appointment. It’s something I still regret.

The kindest consultant ophthalmologist in the world, Dr. G, examined Tessa and began to explain what she had found…. it was hard to take it all in. It was so much worse than I had expected. The cataract was so dense she didn’t believe Tessa was able to see anything through it . As if that wasn’t enough the same eye also had extensive coloboma right through the eye (explained to me like a missing piece- like a slice out of a pizza) that affected the retina too and it wasn’t likely that removing the cataract would result in much, if any, vision.  Her right eye although much more unusual to look at  (the iris had a flattened inner edge and her pupil was off-centre, narrow and hard to see) was the healthier eye. The doctor  told me Tessa also has coloboma in that eye but that it only affects the iris which means it shouldn’t affect her vision but her pupil was too small, unusually shaped and ectopic (meaning it isn’t in the middle of her eye).  I couldn’t stop crying. It felt so unfair to pile so much on my tiny baby who already had so much to battle . I wished desperately that Nathan or anyone had been with me.  It was completely overwhelming just weeks after the shock of her birth to understand and accept such an extensive new list of diagnosis’. And to have to hear it all without a shoulder to cry on was especially difficult.

2015-07-07 20.29.08

Tessa’s right eye

In order to give Tessa a better field of vision from her tiny pupil she was prescribed dilating drops (the kind you get when you have an eye exam) These enlarged her pupil and needed repeated every four hours or so throughout the day.

When we were finally discharged and settled into life at home, her eye appointments remained frequent.  During one such appointment her doctor informed us that she had discussed Tessa’s unusual case with a colleague who suggested that despite the extent of the coloboma in her left eye, there might  be a chance Tessa could gain some vision by removing the cataract. This was a huge revelation but there were no guarantees and it would mean another invasive surgery on our tiny baby and a gruelling level of aftercare.  We were sent to the Visual Electrophysiology department for tests to see if her brain was picking up signals from that eye. The test process itself was an ordeal as it required sensors to be stuck to her head (which pulled her hair and often needed restuck or repositioned) and lights flashed in her eyes (something she found either uncomfortable or scary) in a dark room (which she definitely found scary).

It was a long and difficult appointment for such a young baby and she needed frequent breaks for nursies and suction but we finally completed the test and the results were very promising. Her brain was picking up signals despite the retinal coloboma behind her cataract! We had a decision to make and precious little time to make it.  Tessa was over 10 weeks old and if we agreed they wanted to do the surgery in a matter of days because after 12 weeks the outcomes for this kind of procedure are not as good due to neural pathways being made already.

After much agonising we agreed that if there was a chance we could give her vision in that eye then we owed it to her to try. It was so very difficult to make the decision on her behalf.  Surgery was booked for the following week.

At only 11 weeks old Tessa faced her second surgery. The aim was to remove a dense congenital cataract from her left eye to allow for some vision. She looked so tiny in the hospital that morning. She had to fast before her anaesthetic and was confused and upset about why I wouldn’t feed her, it was heartbreaking and, as is often the case, her surgery was delayed ….. I wrapped her in her sling and walked the hospital corridors until she fell asleep and kept walking for the next two hours to ensure she didn’t wake up. Finally  her consultant ophthalmologist talked us through the procedure and told us surgery should take about two hours.  I held her until she was sedated, then we kissed our baby through the tears and went back to the ward to wait.

It was four hours before we saw the operating consultant again…and she was visibly upset and apologising. Tessa was ok but there had been complications.  I was so worried for my baby I could hardly understand what she was saying but she explained that once the operation had started it became clear that Tessa had much more going on in that eye than they had previously thought. The cataract, for one, had actually prolapsed and part was attached to the front of the eye, an extremely rare presentation. Behind it they found that Tessa had an undiagnosed condition known as Persistent Hyperplastic Primary Vitreous or PHPV for short.  It meant that her eye was filled with blood vessels that are normally only present while the eye is being formed in the womb. Removing the  cataract without rupturing these vessels proved impossible and Tessa suffered bleeding that was difficult to stop. To save the eye most of the inside was removed. She also said that during her career she had operated on a lot of unusually developed eyes but that Tessa’s were the most unusual.

We were in shock. Not only would she never see from that eye, she had almost lost the eye itself and endured a traumatic surgery.  It broke my heart and I felt devastated that our hopes had suddenly turned from possible sight to  hoping she recovered without major complications. And we still faced months of exhausting, intense, post cataract, eye care.  She needed one set of drops hourly, another set every four hours, there was ointment for overnight and cleaning and painkillers. She also had a protective shield to wear over her eye to prevent her scratching or rubbing while the stitches healed. Finding a comfortable way to stick it to her face was a challenge in itself ! It was a gruelling routine and we had all her tracheostomy care to deal with too. Having been prepared for the aftercare as a small price to pay for better vision, it was a bitter pill to swallow to be left with such a workload without the payoff.

DSC_1249

A rare smile due to the numbing drops.

I’m not sure how we managed through those first few months after her cataract operation. I know we were incredibly lucky to have extended family who kept our household running and to whom I will be forever grateful.

We needed to attend the eye clinic twice weekly and even had some unscheduled visits as Tessa was in pain and we weren’t sure what was causing it. She was only happy when the eye was numbed with anaesthetic drops but the effects were short lived and she was only permitted so many doses a day. Her consultant explained that it was likely that the stitches on the surface of her eye were rubbing and causing the pain. We had to wait until they dissolved on their own. I hated seeing her cry her silent cry and feel helpless.  It was a very difficult time all round.

2015-07-26 16.56.00

Tessa’s left eye 3 yrs post surgery.

Slowly the routine became more manageable, Tessa’s pain subsided and the appointment frequency lessened. We finally had a little breathing room as a family.

Knowing that Tessa would need to rely on the vision in her right eye meant we were anxious to gauge how well she could see through her narrow, off-centre pupil. We bought special high contrast mobiles and were always looking for clues as to how well she could see the world. Every small, vision related achievement was cause for celebration from grabbing toys accurately to picking fluff off the floor!

The various conditions which affect Tessa’s eyes are all associated with Arhinia and the underdevelopment of her midface. We know of kids with arhinia who have completely unaffected eyes, some  who have mild cataracts but good vision and some who have eyes so small and underdeveloped (microphthalmia) that they have little or no vision. A significant proportion of those born with Arhinia are  born without eyes at all (anophthalmia).

We are therefore incredibly grateful that Tessa has the vision she has and most people who meet her can’t tell that there is anything wrong with her eyes as she copes extremely well. She no longer uses the  dilating drops in her right eye as they were exacerbating her photophobia  (light sensitivity) and she couldn’t open her eyes outside at all.  She still has trouble on bright days and not having a nose makes wearing sunglasses quite difficult! She does need to hold things very close to her eye to make out detail and doesn’t see well at distance.  Her ‘bad’ eye wobbles quite a bit but does still move mostly in sync with her working eye.  I have noticed some positional nystagmus (involuntary movement) in her good eye when she looks all the way right but we’ll have to wait and see if this has further implications for her functional vision.

2015-07-04 13.44.53

Of course how she sees is normal to her so it can be difficult to tell what she can see clearly and what she compensates for. For example if her brother and sister say they can see the rainbow she says she can too, she will also say the dinner smells nice so we know that she cleverly uses social clues to fill in the things she doesn’t experience.

Because of her cataract surgery Tessa’s left eye has a lifelong risk of developing glaucoma (high pressure in eye) and so she will always have regular eye checks to monitor the pressure in her eyes. So far all her pressure readings have thankfully been within the normal range.

Another issue most aren’t aware of involves her underdeveloped lacrimal ducts (those little holes in the corners of our eyes that drain our tears and excess fluid). Tessa’s eyes water a lot because of inadequate drainage and her eyes often have sticky discharge which can cause infections. It’s common for others with the same problem to experience frequent eye infections and need regular antibiotic eye drops especially during winter months. Amazingly by using breastmilk drops in her eyes at the first sign of trouble, Tessa avoided any infections until she was almost three. My milk dried up due to pregnancy and a few weeks later Tessa developed a horrible conjunctivitis infection which spread causing secondary periorbital cellulitis. It was terrifying seeing how quickly it developed and to feel so helpless. She was admitted on Christmas Eve for IV antibiotics. It was obviously very worrying to have infection in the area where her nasal implant is but thankfully the infection cleared without any complications.

2015-12-24 17.31.12

Tessa is due to start pre-school full time in September and as such, how her vision will affect her learning is obviously becoming more important. We are lucky to have the support of several wonderful charities who are an invaluable source of information as we begin the daunting process of ensuring Tessa has adequate and appropriate support at school, both for her trachy and her vision. An assessment by an educational psychologist showed that Tessa was only behind in aspects of development that were purely visual. It is really remarkable given what she’s been through and the fact that if you met Tessa you might never guess that she has eye issues at all … when in fact the rarity and combination of her conditions make her one of the most unusual ophthalmic patients in the world. We’d add one of the cutest too … but then we are unashamedly biased !!

2016-01-26 10.01.51

Thank you for following Tessa’s story and we hope this helps explain some of the less obvious challenges she faces because of her condition.

 

 

 

 

 

 

 

Breastfeeding Cassie – our perfect, quiet ending.

Standard
Breastfeeding Cassie –  our perfect, quiet ending.

*Whispers* …..

I think … my eldest nursling…. may actually have weaned !
I can barely believe I’m writing the words !

2015-06-25 09.36.50

The idea that Cassie might ever EVER stop was preposterous (mainly to her) even a couple of months ago. She is 4 years and 8 months old as I type and has clung to her short nurse at bedtime like a limpet to an old boat for most of the last year.

I had been coaxing her to nurse less because it was causing tension at bedtime. If her younger sister (now two and a half) had nursed recently there was often no let-down and she’d get frustrated . Keen for our nursing to be a source of calm and not a reason for tears, I felt it was time to phase it out with her participation.

After some discussion the outcome was that she absolutely, UNEQUIVOCALLY still wanted bedtime nursies – but was content that often there would be very little milk.

More recently in the last couple of months I had successfully (to my shock) negotiated a cuddle/ nursies alternation where she could have nursies every other night and my darling daughter, enamoured with the organisation of it all, suggested a three night system of nursies/cuddle/ drink-of-water soon after…. and gradually…. quietly …. without fuss or effort, the nights she nursed just faded away .

After about a week or two I decided to test our new arrangement and had half expected her to gasp and insist on nursing straight away ! Instead when I casually mentioned that she doesn’t really have nursies any more, she thought for a while and said “yea cos I don’t weed nursies anymore” . I told her that was nice and we talked about all the times we had been glad to have nursies like when she was sick (with my bad cough mummy) or sad ( when I had bad dweem mummy) or tired (*giggles* it makes me sweepy mummy) . She gave my chest a cuddle …kissed them then asked if she could still have nursies when she was sick and I agreed it was a good plan. We read a story while I nursed her little sister.

2015-08-11 12.41.20

My gorgeous, clever, fiercly independant big girl starts school on Tuesday and I am so proud of her. We’ve had a near perfect breastfeeding experience and I owe her so much for what our relationship taught me. I have no doubt that I wouldn’t have persevered when Tessa had such difficulty getting started if I hadn’t known what I’d be giving up. Cassie showed me the true depth of a breastfeeding relationship. I didn’t know anything about natural term feeding or child-led weaning when she was born and learned it all ‘on the job’ with the help of a true booby addict.

Photo0253

I remember thinking how old FOUR years old sounded when I learned it was the average age for human children to wean worldwide. I remember my eyes being opened when I was told that children will naturally outgrow the need and stop all by themselves. I was so indoctrinated into a society that puts so much time and effort into ‘weaning’ our babies onto the next thing (usually to the monetary advantage of the baby food industry) that to suddenly discover that there was no need to worry – that mother nature had a plan and it would all naturally progress when the time was right for both myself and my child, was mind blowing!! And so our journey, that I had thought would last a few months, became a relationship that has grown richer and more beautiful with every year.

2014-04-10 11.53.42-3

Of course there were times I got frustrated by how much I was ‘needed’ and plenty of times I needed support to physically and psychologically ‘get through’ the toughest growth spurts and velcro-baby blues. Thankfully by then I had found La Leche League and looking back what I feel most is just the simple joy and love it brought us.

Just as every baby is different so too is every breastfeeding dyad unique and I have more than a few special memories from the past four and three quarter years. I remember how silly I felt standing in a dark broom cupboard with Cassie in a sling trying to entice her to nurse when she hit her infuriating distractible phase, how i thought my heart would burst the first time she sat up after a feed and clapped, and my surprise and weird pride when I discovered she could open my bra clip and help herself… and then close it again! 😀 Even her early artwork had not-so-subtle clues as to her main passion in life-  see if you can tell who is who, in these portraits of ‘mummy’ and ‘granny’, by three year old Cassie .

20140219_132020

I fed Cassie everywhere (mums of frequent feeders soon manage to feed regardless of location or occasion) I fed her through illnesses (hers and mine) and through pregnancy which had more than a few tough moments due to a nursing aversion in the first trimester and amniocentesis in the second. She dry-nursed (I wont lie- it’s not pleasant) when the milk dried to a trickle and bided her time when other, less dedicated boob-a-holics, would have stopped.

I’m glad she did ! Breastfeeding helped us reconnect when I had to spend weeks in hospital when her sister was born with a congenital condition.

Nursing Cassie helped keep my supply up when Tessa was still learning her craft and when Tessa got older and showed preference for nursing only on the side she could see from (she lost the vision in her left eye at 11 weeks old) Cassie was always on hand to ‘even things out’ 🙂

If I had known how complicated Tessa was going to be before she was born I would have thought that continuing to feed Cassie (who was then 2yo) would have just added extra work and pressure. What I found, however, was that despite my sudden absence for over a month and the inordinate amount of time I devoted to Tessa when she was home – there was no jealousy and no resentment. The tiny snippets of time I took to nurse Cassie seemed to be just enough. Enough to let her know I loved her and she was important and enough to show her that she still had a place and that *this* part of her world was still the same (if a lot creamier and more abundant judging by the weight she put on !) It was like breastfeeding enabled me to condense what I was able to give. As though it concentrated our quality time and unexpectedly made things easier for all of us.

1336759192607

I will be forever glad that I decided to breastfeed my children and I am grateful for the lessons I learned in the four plus years that I nursed my middle child. I honestly can’t imagine our lives without it. My milk was her comfort and my cure-all throughout. It kept her healthy and was squirted, dripped and dabbed on numerous sticky eyes, sore ears and grazed knees.

It was our normal.

It was a journey that inspired The Breast of Rhymes. A journey that helped me help others, that changed me and shaped my experience of motherhood. A journey that, just like they said it would, has now ended.

It is over because she has outgrown it, her needs were met – fully and with respect.

She was mothered at the breast just as nature intended.

The quiet tears I shed writing this are not of sadness but of awe and gratitude for having shared such a full and rich experience with a little girl I love to the ends of the world.

2014-04-10 11.54.02-1

Thank you Cassie ❤ ❤ ❤

~

If you would like to learn more about natural term/ extended breastfeeding here are some excellent resources;

Katherine Dettwyler’s A Time to Wean on the natural age of weaning in human children

Dr Sears summary of weaning from an attachment point of view

Jack Newman’s Breastfeeding a Toddler; Why on Earth

And this list of myths from The Leaky Boob

How I love my Doula? Let me count the ways!

Standard

I Love My Doula.

I adored the support and cherish the memories! I would recommend hiring a Doula to anyone having a baby and especially anyone expecting in less than optimum circumstances.  I wish every woman on the planet had access to the kind of Doula I did. I cannot speak highly enough about my experience, I’d shout it from the rooftops were I not likely to be committed.

But just what did this woman do for me that deserves such praise?? Well let me tell you 🙂 

I didn’t know what a Doula was when I had my first and second babies. I had never even heard of the concept and certainly didn’t know what they do. All that changed when my daughter was about 6 months old and I began to embrace the online support available for breastfeeding mums. I was simply looking for reliable information but  my searching led me to a woman who would become hugely important in my life. One day this, then, ‘virtual’  friend would hold my hand for real as I birthed my third baby. And it was by no means a straightforward journey.

During a year of fervent research into birth and the birth rights movement I discovered that my  2 cesarean sections were in fact unnecesareans! And  they shouldn’t have been medically necessary and certainly weren’t my fault, so when I found myself unexpectedly pregnant with baby number three, I knew what I needed to do. My research (or the literary stalking of Ina May Gaskin) had taught me that my body was just as capable of birthing naturally as the next womans and that I hadn’t actually ever been given a decent chance. Since my first cesarean was due to failure to progress after a failed induction and my second ‘elective’ (I hate calling it that) at 41 weeks because thoughts of induction terrified me and the hospital said 41 weeks was as long as they’d ‘let me go’. I had never been allowed to let my own labour begin naturally but I was going to get my chance this time! I was going to make sure of it.

pregnant

What I was aiming for is known as a VBA2C or Vaginal Birth After 2 Cesareans and is a depressingly rare occurrence in this country. In fact if you ask around the general consensus is that after 2 sections and no vaginal births, any subsequent babies would HAVE to be sections too. That it is way too risky and both your lives would be in danger.  Or that no doctor/hospital would let you try.  So even with my new found knowledge and confidence that this would be possible for me, with two section scars (literally) under my belt, I knew I’d have to fight to get my chance. When I learned about Doulas and the role they play in birth support, there was no doubt in my mind that it would be the right choice for me. And when a woman I already considered a friend decided to train as a Birth Doula it seemed perfect. I was already planning to ask her when she completed her course. This woman’s own journey to birth her second daughter at home was hugely inspirational to me and I just knew that if she told me I could do this, that i’d believe her. Thankfully she said yes when I asked and I became her first client.  We couldn’t have known the incredible journey we were beginning but I will always be grateful that she was with me.

Here’s what made my birth experience special and  why

“I LOVE my Doula”.

I love my Doula for being there.

Throughout my pregnancy, Anne was always just the push or click of a button away if I needed her.  And I DID need her. Although physically about 2 hours apart, messages and phone calls made me feel that support and an understanding ear was always close by.  If I was ever feeling unnerved or shaky about my pregnancy or our birthplan, Anne would calmly and expertly say just the right thing. She was there for me in every text of encouragement and message of reassurance. She understood me so well and never made me feel like my feelings were insignificant or that calming irrational, hormonal women down, when you are a busy mum of two yourself, was in any way inconvenient. She came to antenatal appointments with us and met our consultant (incidentally another incredible woman and an Obstretician worthy of recognition, who played her own very important part in making this birth possible) . She was there for me, boosting my confidence when asserting myself and my decisions when they clashed with typical hospital policy or protocol. She was there for me when I excitedly messaged the signs of early labour. She was there to meet us at the hospital door and she never left my side from that moment until we’d achieved what we set out to.

2013-02-14 06.14.53

I  love my Doula for believing in me.

A VBA2C is not common in Ireland and while my newly found knowledge of normal birth gave me no reason to believe that I couldn’t push a baby out of my vagina, there were times when my doubts and fears or others less informed opinions would shake my confidence.  I understand that people are skeptical since VBACS remain such a rarity so I don’t blame those who questioned why I thought I wouldn’t need a section this time when I ‘needed’ them before. Or the those who believed that the doctors would know best and clearly thought me mental. I don’t even hold it against the internet  trolls who insisted that VBACS or homebirths were just selfish attention seeking ploys by hippy women who put their ‘silly all-natural notions’ before the safety of their unborn child. None of that stood up to the complete and unwavering belief that Anne had in MY ability to birth MY baby MYself. Her belief in me was priceless. She knew I could do it and knew when I needed reminding.  She simply believes in birth and trusts in the power of women. She absolutely helped me to trust my body. Even while confirming a details for my birth plan in the case of a repeat C-section she would calmly say that it was important to have but we wouldn’t need it.  She was the only one not completely shocked when this baby decided to come right around my due date. I’d never even had the first twinges of labour before 41 weeks with my previous pregnancies and was sure I had weeks left!! Anne’s faith in me never faltered throughout what was a long labour. Even when my second stage had entered its 4th hour, Anne didn’t doubt me and when exhaustion made me doubt myself her assurances and total conviction in me were crucial in keeping me going. She believed in me when few others did and without that level of support I’m sure I’d have let the doubts grow into fears and my dream to birth naturally would have been impossible.

2013-02-14 10.20.57

I love my Doula for ‘getting’ me.

Anne listened to me, she understood me and she made sure she knew what was important to me. Basically she ‘got’ me. By taking the time to find out about my past experiences of birth, hospitals, breastfeeding, doctors etc Anne was able to reach a level of empathy that meant that I was able to relax. I could relax knowing that she would know how I’d want things done if I was unable to say or decide myself. Little things that may have seemed inconsequential to many were viewed as important if they were important to me. She even helped me figure out how I really felt about things that I hadn’t given much thought to.  She was able to be what I needed when I needed it and that really is quite an extraordinary ability. She never allowed me to think that my feelings were anything less than paramount . She was able to pinpoint and emphasize what calmed or encouraged me and helped me avoid people or situations that she knew would upset or stress me in any way. Anne ‘got’ why I was doing things in a certain way and I knew she be quick to stand up for my choices to anyone who disagreed. Her  empathy and compassion for me and my birth experience were truly gifts I’ll be forever grateful for.

2013-02-14 09.56.28

I love my Doula for seeing the beauty in birth.

Three pregnancies in just over as many years had taken its toll on my body and more so on my body-confidence. The resulting stretching, marking, widening and loosening did not fit my idea of beauty. I’ve seen some women pull off pre-natal glamour but I just felt thoroughly unattractive most of the time and as a mum of two toddlers was kept so busy dealing with sh*t (literally and figuratively) that there was no time for preening.  To my Doula I was radiant, I was the very embodiment of feminine beauty and the source of light and life and how could that not make you feel better about yourself? Anne was able to see the beauty where I couldn’t and it was a such a gift to see myself through her eyes.  To celebrate my pregnancy and mark the transition from woman to mother (again), Anne organised a “Mother Blessing” or “Blessing-way” before my due date. I have never felt more Goddess-like in my life. It was a truly beautiful experience and Anne even adorned my bump with a Henna tattoo. I loved it so much I was suddenly happy to parade around with my gorgeous body-art on view when I had previously hidden my thrice stretch-marked tummy area and ‘outy’ belly button from the world.  Anne sees the beauty in every part of pregnancy and birth. It’s impossible to stay self-conscious around her and I loved how completely comfortable she made me feel. The sprawling blue veins on my breasts, through my tracing-paper Irish skin weren’t ‘unsightly’ they were ‘amazing’ and showed how ‘abundant the blood supply’ was to this important area!  During a visit the day after the birth she helped me get a bath, there was naturally some postpartum blood loss but it wasn’t ‘icky’ or ’embarrassing’. One throw away comment from Anne about how rich the blood was in iron and I relaxed once again reminded that she was able to see the beauty in everything!

henna bump2

I Love my Doula for supporting my Husband.

Some people are dubious about what  role a husband or partner plays when a person hires a Doula but I believe any who have experienced birth with a Doula would tell you that having more support is never a bad thing. Firstly from a purely practical point of view having more hands on deck means less pressure on each individual. And in our case labour happened over many hours and having Anne calmly breathe through contractions with me meant that my husband could get some sleep in the early stages. His strength and support were vital towards the end when my own reserves was all but spent. Both physically and mentally Anne provided rest and perspective.

  2013-02-14 03.27.12                           ..                           2013-02-14 07.44.52

A doulas unique woman-to-woman insights can help guide partners to more effective support techniques and the wealth of expert knowledge and experience can be just as reassuring for husbands who may never have seen a woman give birth before being expected to step up and help out! It also meant that I wasn’t left on my own when my baby needed medical help after birth (due to a rare congenital anomaly). So while my husband went to NICU with our daughter, Anne held my hand, spoke to consultants and focused on me and I know that my husband is immensely grateful for that (as of course am I).

Most of all I love my Doula for making it possible – a VAGINAL birth after two Cesareans! For restoring my faith in myself and my body. For helping me heal.

1092806_10153096906340650_2029954335_o

I think the biggest measure of how much I love my Doula can be inferred by the simple fact that someday…. in the future ….should I ever pee on a little stick and see two little lines appear, I honestly don’t know who’d I’d call first….

my husband or my DOULA ❤

***

To read more about Anne and her services please check out www.newerabirth.co.uk and find her on Facebook at New Era Birth Doula

Breastfeeding; Tracheostomies, Tears and Triumphs. (Part Two)

Standard

Breastfeeding with a Tracheostomy. Part Two.

Part Two; The story of how we made it from Tube Feeding to Exclusive Breastfeeding.

(In Part 1, which you can read HERE, I describe how we made it from birth to our first breastfeed.)

My baby, ‘T’ was born on Valentine’s day (by VBA2C) with an extremely rare congenital condition known as Complete Arhinia.

She was born without a nose.

Our baby -mummy love gaze.

T before tracheostomy, with intubation tube in place.

Having only one airway would mean it would be impossible for her to breastfeed. To create a second airway she was given a tracheostomy at 8 days old.  A couple of days later we had managed our first breastfeed. It was a wonderful sweet moment ….

….but it was soon clear that breastfeeding T would not be straightforward as she struggled to latch. Every path I knew to get a baby to the breast was blocked by obstacles and despite having the most amazing support network any woman could ask for, (outside of the hospital I might add) the whole situation felt impossible.

Staff attitudes were a huge stumbling block. I’m not sure whether it was because they had no idea what a baby like T would ever be capable of or if the indifference was endemic, but breastfeeding was certainly not a priority and I felt that my requests for extended periods of privacy or time to try to breastfeed were seen as an inconvenience by many.

Biological breastfeeding in a laid back position, which is known to stimulate baby’s natural reflexes to root and latch, was impossible as her trachy came too far out in front of her chin and chest. Laying her on my chest just couldn’t be done. Besides I was never given anything except a ridged, armless chair in which to try.

She vomited at least every other feed and I was told that until she put more weight on that the tube would remain in place. Of course this severely hindered any attempts to breastfed since the poor girl had to try with a tube taped to her mouth. Taking it out to try would mean it would need to be re-inserted in time for her next  tube feed and since passing a tube down her throat made her gag and often vomit it all seemed like a catch 22 situation. It left me conflicted and confused. I didn’t know what to do for the best. Usually a feeding tube would be passed through the nose as it is generally less invasive. Poor T didn’t have that option.

T with feeding tube taped in place.

T with feeding tube taped in place.

I did manage to get her out of the incubator by causing some fuss and insisting that if there was no medical need for her to be in there then I wanted her out. But they wouldn’t let us out of NICU even though her medical needs were minimal and she was breathing room air (albeit through a hole in her neck).

So in a corner of a busy intensive care unit with babies being kept alive on machines and IV’s my baby girl slept in a cot and her mumma attended her every need throughout most of the day.

Not exactly in need of 'intensive' anything. I insisted T not be left in an incubator.

Our unusual NICU set-up.

Skin to skin, or kangaroo care, which studies have proven to help babies thrive by reducing stress and helping regulate temperature and heart-rate, not to mention increase milk supply, was never encouraged. Actually if i’m honest it was actively discouraged. In fact, despite a shelf full of leaflets purporting its benefits in the family room, during my 5 week stay I did not witness a single act of skin to skin.

My own attempts were awkward and half-hearted as staff made their feelings clear.  “MINIMAL HANDLING RECOMMENDED” was written in her notes. This was due to her supposedly not “tolerating her feeds” and the belief that “handling” her would cause her to vomit more than she already was. I was incensed by this and, over the course of the next weeks, gradually fought (when I had both the mental and physical strength to) for more and more contact with my baby, until I was in charge of nearly all her day-to-day care. I learned how to tube feed her, how to suction her trachy, changed all her nappies  and expressed day and night.

Although a healthy, if not huge, 6lb6oz at birth, her rocky start and having had surgery, meant T was slow to put much weight on. I was asked, repeatedly, to consent to high calorie fortifier, (which had actually been given in her first week without my knowledge or consent until I discovered it and quickly and vocally made my displeasure known. I had been clear that nothing but breast milk be given and this was a major violation for me). I wanted absolutely no foreign protein in her diet and was trying to remain confident that my milk was sufficient just as it had been for my other two babies.

Then there was her terrible reflux or ‘not tolerating feeds’ as they put it. Their solution was to add thickener and again I had to deny permission on several occasions and to several different medical professionals. I felt if they would only allow her to feed upright, rather than flat on her back, (as per hospital policy) that maybe, just maybe, she wouldn’t throw up quite so often. They also wanted her on three hourly feeds but this meant bigger volumes and a higher likelihood of vomiting. When I explained that my previous breastfed babies would have fed more often than every three hours in their first month I was told that it “was not sustainable no matter how good a mother you are.” Well that was me told.

The hospital stay was gruelling and I was being worn down by the pressure and stress of everything and my confidence in myself was waning. I still broke down when I let thoughts of what the future might hold for us, creep in . I still cried  every night when she wasn’t with me. I couldn’t stop my tears when I was told of her multiple eye conditions and that she had little hope of ever seeing out of her left eye. It was a lot for anyone to cope with and I was barely hanging on.

Tube feeding in sling

Tube feeding in sling.

After weeks of frustration and sporadic successful short feeds at the breast, one consultant declared that “T’s feeding was what was keeping her in hospital”. I had to make a choice and by this stage we needed out of hospital so badly that I switched all my efforts from trying to get breastfeeding established to simply getting her weight up sufficiently to get her discharged. I insisted on tube feeding her in an upright position on my knee and held her up for hours afterwards to keep her milk down. Even feeding her in a wrap on occasion. It worked and her weight gain improved -proving that neither fortifier or thickener had ever been truly necessary and finally after 5 weeks in ICU, we were going home. I was terrified. And happy …but mostly terrified.

Getting T home to her big brother and sister was a truly beautiful moment for me. To finally have my babies all in the same place was a powerful tonic. T was finally where she belonged; Home. I felt the pressure of the hospital slowly begin to lift.

Together at last, my three beautiful babies.

Together at last, my three beautiful babies.

I struggled through 4 days and nights of truly exhausting tube feeding at home. It went against every motherly instinct I had, and now free of the hospital, I was beginning to regain some of my lost confidence.  It required so much effort and watching her arch and cry in pain as soon as the milk began to flow down the tube was wearing away at my soul a little at a time until finally, on the 4th night at home, after T had just thrown up an entire feed that had taken me nearly an hour to administer, I had had ENOUGH.

What was I doing? What was I doing to my baby?

 I asked myself over and over. Why was I putting her and me through this? When I knew in my heart of hearts that she was capable of breastfeeding? There had to be a better way. I was the kind of tired that makes your insides shake and sitting on the edge of my bed crying into my hands and the only thing I knew for certain was that I wasn’t putting that tube down her throat again. We would try anything but not that. Not again. ……..That night after about 20-30mins she latched and fed and I sighed and tried to enjoy it and not think about what tomorrow would bring.

Enjoying one of our early successful breastfeeds at home

Enjoying one of our early successful breastfeeds at home

I never did put that tube back in.

I soon discovered that T would take a my milk in a bottle easier, as she was having real difficulties actually latching onto the breast, despite much rooting and a strong urge to suck. When my good friend and LLL (La Leche League) leader came to help, I showed her how T would root like crazy, back and forth over my nipple, but not open her mouth and latch. Pressure on her chin didn’t work, it was impossible to get her to open her mouth enough.

Watching her with a bottle we could see that her suck reflex was triggered as soon as the teat reached her soft palate. The problem was, that you can get a bottle into a baby’s mouth without their participation . This was not the case with my nipple! We wondered if not having a sense of smell was hindering T’s efforts and decided that perhaps we need to re-asses how important a role, scent and smell play in breastfeeding.

We still occasionally got lucky and she would feed from me. I began using the bait-and-switch method. I would get her to begin sucking on her bottle or dummy and try and quickly swap it for my nipple. The exaggerated latch or ‘flipple’ technique helped too, as did trying when T was sleepy. I often wished I had an extra set of hands, as T latched best while I was walking and I still had to make sure not to push on her trachy, and we’d have to stop regularly to suction her tube. My trusty ring-sling came in very useful. Each latch took an average of 20mins to achieve. I’ve honestly never worked so hard in my life. Every success felt like the holy grail, like climbing Everest, like my Sistine chapel.

Breastfeeding T in our ring sling

Breastfeeding T in our ring sling

The failures hurt in a place deep inside. They were more than failures, they were rejections. The agony of holding your own baby, offering yourself and being rejected was painful on a cellular level. When I had tried every position and trick I could think of, I would sink down into the chair, give T the bottle it felt like she was crying for, and dry my tears until it was time to try again.

These days seemed so long and were only possible due to the incredible support of my extended family. They cooked, cleaned and looked after me and my toddlers, while I dedicated my time and efforts to our newest member. I will be forever in their debt for the way they cared for us during that time…… then something happened that strengthened my resolve to continue -something so wonderfully powerful that I believed we could move mountains every time it happened …T started smiling, she started and did not stop!

Her first smiles were pure joy.

Her first smiles were pure joy.

Happiness is a smile like that.

Happiness is a smile like that.

Slowly, (agonisingly slowly to me) the tide began to turn and we had more successes than failures, I remember realising one day that T had had more breastfeeds than bottle feeds. It was just the sign I needed, I was spurred by our milestone and so we continued to work hard …and my family continued to keep my household running …and T continued to thrive.

Unbelievably three weeks after being discharged from NICU, fully tube fed, T was EXCLUSIVELY BREASTFED!! She was eight weeks old, and I no longer had to express milk or measure feeds. I was done with tubes and over bottles. We had made it. We were living our impossible dream. Our baby, born without a nose, who breathes through a tracheostomy is still exclusively breastfed at six months. She made it without fortifier, without thickener, without formula. She thrived without introducing solids early or weaning my toddler. I believed in her and in my body’s ability to feed her. I believed in breastfeeding and it came true.

breastfeeding with a tracheostomy.

breastfeeding with a tracheostomy.

Breastfeeding 6 months

at last breastfeeding was second nature

We even celebrated our first tandem feed recently with Miss C (T’s trachy had previously made positioning tricky for tandem feeding) An another amazing moment that I never thought we’d get to experience. I was so proud of us and so full of love for my babies, it was beyond anything I had dared to hope for.

Our first tandem feed with big sister.

Our first tandem feed with big sister.

We would face more challenges in the coming months including, a traumatic surgery on her eye, that caused her weight gain to slow and subsequent pressure from our dietician to offer solids and or fortifier again. But we held firm and now at six months she is back on her original centile line, has met every milestone and continues to develop normally in every other way. She brings so much happiness and love to our lives, we can’t imagine life without her.

Our consultant is planning to de-cannulate T (remove tracheostomy) before her first birthday and any nasal construction will likely not be until she is a teenager. There is still much uncertainty about the future and our options regarding her face but these last months have shown me that she is stronger than we could have ever hoped and that with the right support, sometimes things aren’t as impossible as they seem.

My beautiful baby exclusively breastfed at 6 months.

My beautiful baby exclusively breastfed at 6 months.

Please click HERE to read an update on T’s extraordinary first year.

~

~

If you would like to help our family ease the financial strain that T’s condition brings, please consider Donating what you can HERE.

      We are grateful for your generosity and support.

Breastfeeding; Tracheostomies, Tears and Triumphs. (Part One)

Standard

Breastfeeding with a Tracheostomy. Part One.

The story of our breastfeeding journey from birth to our first feed .

It was the 14th of February. St. Valentines Day. I had just achieved the birth I had been dreaming of. The birth I had had to fight hard to even attempt, a triumphant vaginal birth after 2 cesareans or VBA2C. A Valentines VBA2C ! A water VBA2C at that, with nothing but gas and air …And I should have had my moment, the moment I missed out on with my two previous babies, the moment that I see immortalised in so many birth photographs – the moment you first meet your baby and lift them on to your chest and the two of you melt into each other. My ‘I did it’ moment, my ‘my body isn’t broken’ moment ….but what happened was quite different.

I will write about T’s beautiful, positive birth in another post and give it the attention it deserves, but right now I’d like to tell our breastfeeding story (so far) and to do so I need to explain what happened instead of my ‘I did it’ moment;

T was born without a nose.

She has what’s known as Complete Arhinia.

Despite concerns about her facial profile at our 20 week scan and subsequent amniocentesis, no-one was expecting this. So when I lifted my tiny miracle out of the water and the medical team saw her face, alarm bells, literally, started ringing, and people started shouting… and people started running… and people started crying. The midwife, hastily, severed her cord and whisked her away before I could even speak. To say it was traumatic would not do it justice. My whole world had been snatched from me and I was reeling …and bleeding, as it happened, and alone in the pool. As moments go, I wish someday I might forget how painful that one was.

When T began to breathe and stabilised (her cord should never have been cut as it was supplying her oxygen but I’ll not get into that now) I was allowed to see her for one brief cuddle before they took her to NICU.

first hold

Our first all-too-brief cuddle.

I wasn’t able to feed her. A baby needs two airways to breastfeed. The cruelty of that cut me like a knife. I was a breastfeeding advocate,  activist even. I was still breastfeeding her big sister, Miss C, who had just turned two, I had a painting of myself breastfeeding Miss C hanging in my living room, I had attended conferences, I was training in breastfeeding support to help other mothers, I write breastfeeding poetry for crying out loud!!!   Breastfeeding was a huge part of my life and here I was with a baby I couldn’t feed. It felt like the cruellest joke, it was hard to believe.

To be honest, the shock of everything and the physical aftermath of a long labour and jarring emotional trauma, means that I’m a bit fuzzy on exact events for the following 48 hours, but what I do remember is how broken my heart felt. I remember being in the room that night after my husband had gone home to my other two babies, who were just two and three years old. Being alone in that room. Alone and empty.  I remember crying so hard I couldn’t breathe  and I remember how it hurt not to have my baby, how it hurt not to know if she was, or ever would be, alright. The pain inside was so raw, so heavy, I didn’t think I’d ever recover.

When they wheeled me down to NICU to see her, it was shocking! As I’m sure it is for every mother who has to see her new born baby lying behind a plastic wall with wires and tubes coming out of them. Her face, the face I love so deeply and completely now, looked strange to me then, although the layers of tape holding her breathing and OG (oro-gastric) feeding tube in place, didn’t help. I was so scared.

2013-02-15 13.44.00

Vented after sedation for a head CT scan.

I was scared for her and for me and for what this meant. My head hurt with questions; Would I love her enough? Would she be ok? Would I ever be able to feed her? Would I be able to cope? Would anyone else ever love her? Would she forgive me for leaving her in that box with strangers every night? Would she ever be happy? Would I?  The list seemed endless. Of so many things, I was scared.

I was only allowed to hold her briefly every couple of days due to strict ICU staff.

I was only allowed to hold her briefly every couple of days due to strict ICU staff.

I cried while the consultants explained what they could about T’s face. They admitted they had never dealt with, or even seen this condition before. We were told that a total of 37 cases has been recorded in medical literature.

Thirty seven.

That’s historically. Worldwide!

That feeling of being alone was magnified with this information. We were very alone. We were, 1 in 500 million, alone. There was no website for this, no support group for us, no charity championing our cause, no glossy leaflet about what to expect.

Thankfully tests revealed her brain and heart were healthy and normal, (apart from one small hole in her heart that we were told was not uncommon and not to worry about). And initial genetic tests showed a normal karyotype and no evidence that T had any known syndrome. It was just the news I needed and I clung to that information while doctors scrambled to provide us with any other insights.

I cried when they explained that she would need a tracheostomy so she could breathe while sleeping and eating.  A tracheostomy would require huge amounts of care, it would mean I wouldn’t be able to hear her cry or coo or giggle. It would mean a huge change to our family life and much less freedom. I couldn’t imagine how we’d cope and I was sure you couldn’t breastfeed a baby who didn’t have a nose and breathed through a hole in their neck. It was devastating news, any hope I had was disappearing. …… But I was wrong, finally one consultant said she couldn’t see why we wouldn’t be able to try, at least, and some further research proved that we had every reason to be hopeful. It took a little digging, but I did find a short thread discussing breastfeeding babies with trachys. It was theoretically possible. We would just have to wait and see if T’s sucking and swallowing co-ordination were up to the task. Until then she would be tube fed. I was told to take comfort in the fact that she would still be getting my breastmilk. It was a small consolation but I knew where she needed to be and every cell in my body ached to feed her.

I loved her so much.

I loved her so much.

I expressed my milk for her. I found the pumps kept causing me pain and I already knew how to hand express and quite quickly established a good supply. I continued hand expressing every 2-4 hours. I couldn’t bring myself to leave the hospital without her so I stayed in a family room in the ward. Walking down the corridor at night to make a milk delivery was so important to me. It was the least I could do.  Walking back to my bed without her never got easier.

She had her tracheotomy operation when she was 8 days old. I felt sick to my stomach the whole time, but by now I was anxious to have the  procedure done as it would mean she would get out of the incubator and that the large intubation tube, that was so crudely taped to her mouth, could come out. It meant we’d get to see her sweet little face. She was admitted to PICU (pediatric intensive care unit) following her operation and…

…And then there she was….

post-op, T sporting her new trachy.

I was no longer worried about the trachy, we’d deal with that, but now I could see her and kiss her little lips and hold her tiny body. And of course I hoped against hope that I could feed her.

The staff wanted her to recover from surgery before attempting to breastfeed so I waited.  I was now allowed to hold her, so much of this waiting was done while she slept in my arms. How much faster the time went  now I was holding her. It felt amazing, I never wanted to put her down. It was so healing and not surprisingly my milk supply took a giant leap. Oxytocin for the win.

When we did get a chance to try a breastfeed, it was awkward and tense. I was terrified of hurting her by pushing on the trachy, which, as she was so small, came out further than her face. Positioning was difficult and circumstances were far from optimal. Sitting in an upright, armless chair, watching this wire and that one, trying to get her face close enough to latch with out touching her new neck accessory with my swollen post-partum breasts. It’s no wonder we struggled. I told myself to give it time, that it was to be expected after this long being tube fed.

After much fumbling and failing, late at night on her 10th day in the world, we did manage a latch eventually and we celebrated our first breastfeed,  it was a moment I will treasure forever.

first feed copy

Our first breastfeed 10 days old

“She’s doing it, she’s doing it” I whispered to a nearby nurse, not daring to breathe or move in case the magic stopped. We would struggle to repeat this moment in the coming days and weeks but every now and then it would happen and my world would feel right again. They were scattered moments of bliss throughout some of the worst days of my life.

It would take us another 4  weeks of OG tube feeds and 3 more of bottle feeds,  before our dreams of exclusive breastfeeding became a reality.

T would eventually thrive as a fully breastfed baby.

T would eventually thrive as a fully breastfed baby.

Follow our journey to exclusively breastfeeding with a tracheostomy in Part Two, click HERE.

If you would like to help our family ease the financial strain that T’s condition brings, please consider Donating what you can HERE.

We are grateful for your generosity and support.