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

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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.

76 responses »

  1. I can’t say THANK YOU!!!! enough. You are amazing. XXXXX. I never had (or will) any doubts in you or baby T. Momma always knows best!

  2. I just wanted to say that you and your beautiful daughter are an inspiration. Thank you so much for sharing your story.

  3. I APPLAUD YOU!!!! Congrats on being a wonderful mother!! For your perseverance and your strong will! So many women give up for much less. You inspire me to never give up. T is beautiful and I hope that things are smooth sailing from now on! God bless you all. He has great plans for you all.

  4. She is absolutely beautiful. What a little trooper.
    Huge congratulations to you and your family on your success with the breastfeeding. You should be so proud of yourself for believing in yourself and your gorgeous baby girl. I wish you lots of love for the future and will hope to follow yours and T’s journey from now.

  5. Hi, I never leave comments on blogs, but I found your story through Breastfeeding Today and was totally captivated. Thank you for sharing this amazing story. Your perseverance is such a testimony—so inspiring. I had a similar (but much less challenging) experience with my first when she was in the NICU, fighting for her right to breastfeed. I found myself remembering those feelings and moments as I read your story.

    Congratulations on your success! Your daughter is beautiful!!!

  6. What an incredible story. You are an amazing, strong woman with a beautiful little girl. Congratulations on your hard work (the both of you!). Much, much love to your beautiful family, thank you so, so much for sharing this. x x

  7. Does removal of the trac. tube mean that she has to breathe through her mouth between sucking etc.? Will you then be able to hear her cry ?

    • Hi Blossom, it is unlikely that she will be able to continue to breastfeed as she will have to rely on her mouth for breathing after decannulation. I am hoping that she perhaps is able to figure out a kind of paced feeding where she stops to breathe but it will be depend how comfortable it is for her. And she will have totally normal vocalisation too although now at 13 months old when she cries very hard (a after a bump on the head for example) she is strong enough that some cry is audible. And she can get out attention with some noises. I really can’t wait until she can babble with her brother and sister. Gráinne

  8. I would just like to let you know I think you have an amazingly beautiful family!
    Your youngest is so beautiful and so strong for fighting for what was right for her!! Your/her story is heart breaking and yetheart melting at the same time! I just hope other can hear your story and gain hope that the human body knows what we are supposed to do and how strong we can truly be.

    Thank you!!

  9. Grainne, I feel so blessed to have come upon your story and your beautiful family. My son, now 22 years old, was born with the same medical condition arhinia as Tessa. He is an amazing young man who has seized life by the hand. My husband and I are so proud of him, as are his four sisters who love him dearly. I would like to share more of our story with you if you would like that. Wishing you and your family the best of everything!

  10. I have read every write-up on your blog and I must say that it’s a wonderful, touching and encouraging story. Tessy’s smile is just wonderful. After reading a little bit, I always go back to her pictures and stare at her smiling face for a while. It’s a wonder how much she smiles in spite of all the challenges, no wonder she has been able to achieve so many milestones (a merry heart doeth good like medicine-Proverbs 17:22). You’ve done a wonderful job mom. God bless your efforts.I pray for many more splendid and smiling years for Tessy, you, her siblings and dad. Pls keep us updated 🙂

  11. Hi, thank you so much for your story! When last year one of my best friends had her baby boy born after only 25 weeks of pregnancy, there had been lots and lots of questions. As he had serious difficulties in breathing, he got a Tracheostoma at the age of three months. As a lactation consultant here in Germany I tried very hard to find any information about breastfeeding and Tracheostoma. And there it was, your wonderful article about it! Thanks to it my friend and I gave it a try – and after trying and trying again it worked. ❤ He was exclusively breastfed until he reached his 8th month and now, at the age of 14 months, still breastfeeds about 3-5 times a day along with having solids. I don*t know if we would have had the determination to try on. Hope all is well with your three wonderfull kids!

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