Jo share’s her Breastfeeding Journey
The birth of our beautiful twin boys plunged me into a rollercoaster breastfeeding journey. The road has been an emotional one with many mixed feelings, having experienced some of my lowest and most desperate times as well as some of my most joyous and rewarding times. When preparing my birth plan with my midwife, she asked if I was going to breastfeed my twins, I replied with confidence that I was – little did I know that I was taking this privilege for granted.
The birth went really well and my sons arrived safely, Max (twin one) was whisked to the Intensive New Born Unit due to breathing difficulties and Jack (twin two) was curled up on my chest meeting his proud parents for the first time. I was overwhelmed with the experience and relieved my boys were safe after a difficult pregnancy. Jack begin to bob and search for his first feed, I was amazed to see this natural instinct to nurse from a baby who was only minutes old. Unfortunately, before he had chance to latch I experienced severe post birth complications and was rushed to theatre. Jacks condition deteriorated and he too ended up in the New Born Unit.
The following day my husband wheeled me down to see our precious babies. We immediately started ‘Kangaroo Care’ knowing the importance of skin to skin contact, especially when you have been separated from your babies. The boys were premature, so I was expressing colostrum and they were fed through a nasogastric tube. The breast was offered to them every other feed as they were still quite weak. We started with a nipple shield, which is a common strategy for fragile prems. Their sucking reflex was developing as the first week passed, however feeding was becoming increasingly painful and I was beginning to show evidence of damage to my nipples. My milk was very slow to come in due to dramatic blood loss and trauma following the birth. Unfortunately this difficult start was not acknowledged and as a new mum I felt tremendous pressure to provide enough milk for my babies and I felt I was failing at the first hurdle. I expressed eight times per day and supported by my midwife I put the babies to breast as often as possible. As another week passed my nipples were very badly damaged and the pain was excruciating. One evening feed, both my husband and the nurse were in tears watching me in such pain and seeing my heartbreak as I struggled to feed my babies.
The boys grew stronger and continued to be tube fed a mixture of expressed breast milk and formula. At this stage the only thing stopping the boys from coming home was the breastfeeding and my milk supply. Although my supply was increasing with the ongoing expressing and use of a herbal tincture, I was still unable to keep up with one baby, let alone two growing babies. I asked if I could be referred to a Lactation Consultant for support and although my request was noted, I was told it would be unlikely that I would get one. Although putting the boys on the bottle had never been something I had ever thought I would have to consider this early in their lives, I had to make that decision. The pressure from staff to get these babies home left me no option, I felt that time had run out on us. However on discussion with my midwife the goal always remained that I would get the babies home and reintroduce the breast. I knew I was taking a risk – what if they would not go back on? What about ‘nipple confusion’? Feeling very alone and out of my depth I poured my heart out to a friend that works in the hospital and within ten minutes I had a visit from a trainee Lactation Consultant, which was followed up by a visit the next day from Alys Brown (Lactation Consultant). When I told her about my experiences to date, she empathised with me and then asked to look at the baby’s mouths. I must admit I was a little shocked as I was expecting her to check the state of my nipples and give me some advice on latching. However, on a quick examination she said that she suspected the boys may be tongue tied and we arranged a longer consultation in four days time when we were discharged.
The boys were three weeks when we attended the breast feeding clinic. Alys explained more about tongue tie, in particular Type four tongue ties, which our boys had. In a nutshell – the boys had a tight frenulum under their tongue which would restrict their ability to cup the nipple and breast tissue deep in their mouths. They would latch initially and then their tongue would hump like a caterpillar causing the nipple to be pushed forward and therefore abrasion and damage to the nipple would occur. This all made sense to my breast feeding experiences, although I was a bit frustrated that it hadn’t been picked up by health professionals while we had been in hospital, especially when I found out that it was not uncommon. However, now the diagnosis was made I was keen to tackle it, but unfortunately a Type four tongue tie is normally left unfixed and only the Type three, two and one’s would be treated by a snip. I could sense Alys’s frustration in this, as she told me how although breastfeeding is negatively affected by this issue that is was unlikely that anything surgically would be done. She did reassure me that she would support me to improve the latch and hopefully make breast feeding more comfortable. We worked on the latch with both babies and the pain was bearable.
Jack fussed at the breast a lot more than Max and as my nipples were very tender and sore, it was decided that I would work on getting Max to the breast first until there was some improvement. I left the clinic feeling we were on the road to recovery and it would only be a matter of time before the nipples would heal and I would be able to breastfeed both babies. Unfortunately, as the days passed the nipples became worse with each feed. I followed their instructions to delatch if I felt pain, but it was always painful and the cracks were getting worse and beginning to bleed regularly. It was at this point that I decided to use the one to ten system for pain so I could easily relay to my husband how it was feeling (one being – no pain and ten being -extremely painful).
A couple of days later I was back visiting Alys and Debbie Graham, (the Breastfeeding Educator) for some more help with latching and Alys was keen for a second opinion on the tongue tie. It was here that Alys told me that she was working very hard to convince medical staff of the affects of Type four Tongue tie on breastfeeding and the need for intervention. She was awaiting their decision and would certainly be putting my boys forward if it went ahead. There was a similar case in Auckland where a laser had been used and the results were favourable for the breastfeeding problems. There was hope – I just needed to hang in there. At this consultation Debbie confirmed the Tongue tie and we worked on the latch with both babies. She also suspected that I may have thrush, which could also have been responsible for some of the pain. My milk supply was also becoming more of an issue as I was expressing as opposed to breastfeeding and the plastic cups didn’t stimulate me in the same way as a baby would. I continued with my herbal tincture and decided to go on the Domperidone (a gastro-intestinal drug that has a lactating side effect). At this stage I was expressing six times per day and putting Max to the breast as often as I could depending on the breast pain. Whenever the nipples were feeling good I would only need to feed a couple of times and they would be worse than when I started. I seemed to be taking two steps forward and then three steps back.
A few days later Alys rang with some bad news – the health professionals had decided that the risk of using anaesthetic, which was required for the laser, far outweighed the breastfeeding benefits and that no one was prepared to do it. I was bitterly disappointed, but pleased that the decision was made with the babies best interests at heart. Where did this leave me? One thing that had kept me going was the possibility that the tongue tie would be surgically fixed. The pain had also changed from just when I was feeding to remaining painful for up to an hour after feeding. It had got to the stage where I was walking around holding my breasts after a feed so the breast pads wouldn’t touch them. I couldn’t bear for the water in the shower to run over them let alone towel dry myself. I couldn’t describe the pain to my husband, but it brought tears to my eyes and it was definitely reaching a ‘ten’ on a regular basis. I had begun to pace the house an hour before feeding and become very tetchy when the babies woke for a feed. My husband was concerned that I wasn’t enjoying my time with the babies and was beside himself watching me in so much pain while I fed. My feet would curl and bang the floor; my body would go rigid on the couch and tears would roll down my face. He felt powerless to help me as he knew how important it was to me, but he wanted me to know that if I had to give up that he was very proud of me and would support me in any decision I made.
Having treated myself and the boys for thrush I had hoped for some improvement, but my nipples continued to crack and look very raw and tender. On this occasion when I was with Debbie and Alys, Debbie noticed that as soon as I took my breast pad off ready to feed that my nipples turned white. I told them that this happened both before and after feeding. Debbie suspected that I was experiencing vasospasm of the nipples linked toReynaud’s Syndrome. She asked me how my nipples felt in the cold and I explained that they felt painful most of the time, but this was accentuated in the cold weather. There was mediation that I could take for this but Debbie suggested I tried a number of strategies to manage the pain. I made sure that I was always in a warm room when I fed, I wrapped up well when I went out (mid July), I would cover up my breast as soon as the baby had fed and I used olive oil to massage the blood back into the nipple. On further reading about this condition I found out that shallow latch, tongue tie and thrush all accentuate the vasospasm and yes, I had all three. The ritual for caring for the vasospasm, the thrush, the milk production, regular expressing and generally caring for twins became a little overwhelming.
Due to the tenderness of my nipples I had stopped feeding both babies for a couple of days so Debbie decided that we should use the nipple shield to ease the pain and protect the nipples from any further damage. It was amazing – the first time that I had truly fed my babies without my toes curling from the pain. The babies seemed content and so was I. I remember leaving the hospital with a spring in my step and hope. Over the next week the babies fed well and there was only a small amount of pain although, I still was getting the blanching after feeding. The cracks were beginning to heal and I decided that if I have to feed with the shield from now on that this was so much better than not breastfeeding at all. Sometimes the shield was a little difficult to manage as the babies would often knock it off and I could not tandem feed as I needed more hands, however again this was a small price to pay in order to breastfeed my babies.
While I continued to feed with the shield, Alys had been working very hard in the background regarding the tongue tie issue. She phoned me to let me know that there had been progress and a local Maxillofacial Surgeon was willing to snip Type four tongue ties. We decided to place the boys on the list as the procedure would not require anaesthetic. I must admit I was very worried about the pain and had reservations about the necessity of putting the boys though this. When I realised the risks of dental and speech problems later in life, if left untreated, as well as the breastfeeding issues I was compelled to go ahead. While waiting for our appointment time the boys began to start fussing on the shield and within a week they were totally rejecting it, refusing to feed and screaming every time I put them into the feeding position. So it was back to the bottle, but hopefully not for long as there was hope that the boys would go back on the breast after the tongue operation.
At nine weeks of age the boys had their tongues snipped. My husband, Glenn and I were both very nervous for the boys; however the procedure was over so quick. My husband held each of the boys while they had it done and I stood by ready to comfort them and immediately place them on the breast. The surgeon didn’t want me to use the shield as he wanted to view the latch and for me to let him know if the level of nipple pain had reduced. Unfortunately the boys had been off the breast for so long, they wouldn’t accept the breast or the nipple shield at this stage. I wasn’t surprised as they were quite upset, so we gave them a bottle and decided to reintroduce the breast at home. We were expecting to have a few days with grizzly boys as they recovered from their procedure however they were unphased and slept well as usual that night. I was very optimistic about breastfeeding, as the thrush seemed to have cleared up, my cracks had nearly healed and the boys had had their tongue ties fixed. I thought that we had all been through enough and this was the time everything was going to fall into place. Little did I know how wrong I was.
I was fully prepared to have some breast pain as the boys experimented with their tongues and had to be retrained to take the breast. However, the pain did not recede and slowly but surely the damage and cracks began to reoccur. I was devastated as I had been so positive about the operation and we seemed to be back at square one. Max even had an evening at A & E as he was vomiting blood after feeding from me. They suspected internal trauma to my breast, no wonder I was in so much pain! After being on the bottle the boys were reluctant to give me a wide open mouth, instead they seemed to want to suck the nipple in as if it were spaghetti. So it was back to the lactation consultant with ‘vampire and piranha’ (as I had affectionately named the boys) for more support with the latch. We managed to get a good latch with both babies and the pain was manageable, however within a few minutes of feeding on the left side I was bleeding again. I was back down to using one breast and expressing from the other. This would be tricky with one baby, but was nearly impossible with twins. My good breast was not in a great condition and with the intense use it too started to deteriorate. Debbie believed that the latch was good, my technique was good, but it was the vasospasm and perhaps the thrush that was keeping my nipples from handling the babies feeding from them.
Feeling at a loss I decided to go to the Doctor and ask if I could go on the medication Nifedapine for the vasospasm. I filled the Doctor in on the journey so far and she was aghast that I was able to articulate the story without tears. She was concerned that I was feeling pressured to continue and I explained that I was feeling pressure, but it was only from myself. For some reason I had an overwhelming desire to continue fighting to feed these babies despite the hurdles we faced. She took one look at my nipples and banned me from feeding for a week. At this stage my nipples were not really badly cracked but they were very red, angry and extremely sensitive. Suspecting an infection she put me on course of antibiotics and took a swab. I must admit I was secretly a little relieved to have been ordered to have some time out. I could start taking the Nifedapine and hopefully the blanching and spasm pain would subside. This, along with the break should allow my nipples to be in a better state to give breastfeeding another go. A week later my swab came back clear, but the Doctor still believed that my nipples needed a bit more time before I tried feeding again. Now I began to panic as the boys were approaching three months old. The time off the breast was beginning to worry me and I felt my dream of breastfeeding both my babies was slipping away regardless of how hard I was willing to work. Realisation of the fact that it just might not work this time was beginning to enter my mind and I was not ready to accept it. My husband was very worried about how much pressure I was putting myself under. Although he always supported me, I could tell he thought I had tried hard enough and was concerned how I would manage to come to terms with it if I had to call it a day.
The next week was the worst that I had been through. Friends and family members were praising me for my efforts, but in the same breath they were says that perhaps enough was enough. I was so desperate for this to work and for the first time in my own mind I was unsure if I had anymore fight left in me. I am sure I was terrible to live with that week as I felt I was sinking as I too was unsure how I would handle it if I had to give up. I agreed with my husband that we had covered every base and I should give it one more try and if it didn’t work this time that I would accept that it wasn’t meant to be. The day came to start feeding again and I couldn’t do it. You must think I am mad – all I wanted to do was breast feed and now I had the green light from the Doctor, but something was holding me back. I was too scared to try just in case the pain came back and I would have to make that decision. It was safer to not try and hold on to the hope, than try and fail. That day I remember staring out of the car window on the way to see the Lactation Consultant thinking, someone’s got to help me. I walked into Debbie’s office and the tears came. She too, like my husband agreed that I give it another two weeks and then I must move on. I really felt everyone was preparing me for the inevitable and that was why I was so scared to try. Debbie so kindly offered to make a home visit to help me and the boys in our own environment.
By now the boys were three months old and had been off the breast so much, I was so worried that we had left it too late. I was so nervous while I was waiting for Debbie to arrive, not because of the pain, because this was it – our last shot. I knew if it didn’t work this time that for my physical and emotional state that I had to accept that it wasn’t meant to be. Debbie and Alys drove in the driveway and I felt like the cavalry had arrived. We started with Max, soon stripping him down for skin-to-skin contact. With support, I latched him successfully and the pain was bearable. He fed well and I was on cloud nine, but this was only half the battle I still had to work on little Jack. His suck was slightly weaker, so we decided to use the shield while I lay down in bed. This also was successful and I felt a deep connection with my baby as we stared into each other’s eyes. As you can imagine I was ecstatic with the progress, but as Debbie and Alys were about the leave the anxiety hit again. I had been here before, after a break from feeding it usually went well, but it was a few days into feeding that the pain would become unbearable and the cracks would start again. They acknowledged my concerns and committed to supporting me in the home regularly over the next week. I was so grateful and really believed that this commitment along with my grit and drive surely would lead to success.
Over the weekend feeding with Max went well with moderate pain (about a six or seven) for a few minutes and then it would ease to about a four. He would often make a clicking sound as he fed and Alys explained that he was having difficulty maintaining the latch and suction as he learnt to cup the nipple deep in his mouth. This clicking would coincide with an increase in pain so I would delatch and relatch again. Jack however began rejecting the nipple shield and when I tried him straight on the breast the pain was a seven or an eight with little improvement on relatching. Also within a few feeds the cracks and the pain were coming back. We decided to continue expressing for Jack and concentrate on breastfeeding Max. This strategy may also allow Max to harden up my nipples so I could try Jack on again in a week or so. I was really down on myself as I thought I was useless, if the thrush and cracks had healed, the boys had had their tongues released then why was I still having so many issues. Alys explained that the anatomy in the boys mouths would always be different due to the tongue tie regardless of their operation and they had to learn to use their tongues in different ways. Their roof arches were very high, which meant that I had to get even more breast into their mouth to get and maintain a good latch, making it difficult for both of us.
Unfortunately, Max began to reject me again, I was devastated. I was still topping up with a bottle and he knew that, so he just fussed and cried at the breast but took the bottle beautifully. I decided that the bottle had to go if I was going to get him back on the breast and enjoying it, rather than fighting a battle with him each time he fed. I went cold turkey and only offered him the breast all day. Glenn took Jack for the day so I could totally concentrate on Max. When Max refused the breast I just put him down to play or sleep and when he cried I offered him the breast. Time after time he screamed and stood fast, but I was determined. The battle went on for the whole day. I was mortified and felt such a bad mother. Late afternoon arrived and just as I felt I had pushed it far enough and both Max and I had cried buckets, he latched and drank a full feed. Wow I had done it! But what would happen at the next feed? To my delight he didn’t hesitate, latched on and fed beautifully again. Glenn arrived back with Jack to see me quietly breast feeding Max with a rather large smile on my face. After a few sessions Max improved, the clicking stopped and he was maintaining a good latch. The pain was sitting at about a three to four and I was willing to handle this in order to breastfeed. I was still blanching before and after feeding but this was not as bad since I had started on the Nifedipine.
We kept allowing Jack time at the breast, but he would scream and cry if I tried to latch. Both Debbie and Alys started talking to me about the fact that Jack may have chosen the bottle and that perhaps I needed to begin to think about the possibility of only being able to breastfeed Max. I was mortified, how could I share the most amazing bonding experience with one twin and not the other. However, Max and I had worked so hard to breastfeed, was it fair to jeopardise his feeding. I felt so torn, but deep down the only answer that I came up with was that I was going to feed both of them, so I wouldn’t have to make that awful choice.
After three weeks I was ready to tackle Jack, who by this stage was fully on expressed milk from the bottle. I knew that it was going to be a huge challenge as he was nearly four months old and he strongly rejected the breast. I only needed to unclip my bra and he would start to cry, ending in screaming and lots of distress for us both. I decided to use the same approach as I had with Max – ‘cold turkey’. Jack had other ideas; however after a very long day and more tears from Mum and baby, he too latched and drank a full feed. I was on cloud nine; it was so amazing to finally be breastfeeding my twins. I was so proud of both of the boys and we had proved it really was never too late to start.
I have always been interested in herbal remedies and continued to take a mothers milk tincture. Although feeding the boys was going well, the pain was still there so I decided to research Reynaud’s and vasospasm and asked a local herbal shop to make me a tincture up using a few specific herbs. I couldn’t believe it, within six hours the pain was easing and the blanching was diminishing. I was finally feeding both babies with virtually no pain whatsoever.
Now that both boys were back on the breast I had to come up with a plan for feeding as I knew I only had enough milk for one baby. I was happy to alternate the twins from breast and bottle for each feed. However, the boys had other ideas and nipple confusion reared its head again. They began to fuss on the breast feed and hold out for the bottle feed. I was losing the battle all over again and it was affecting my milk supply as the boys were not taking a full feed off me. Back to the drawing board, I decided to feed both babies for every feed until my milk supply was low and then introduce the bottle. This worked a treat as the boys would take the breast fully for the first three feeds and then when the fussing would start at the early afternoon feed I would use a lactation-aid, allowing the babies to receive formula milk at the breast, but through a small tube. This allowed the babies to get the milk that they needed while still stimulating and increasing my milk supply. Their last feed of the day, being the ‘dream feed’ is a drowsy feed and I would allow them as much time at the breast as they wanted and then would top up with a bottle.
The boys are now fifteen months old and we follow a slightly different regime. My milk supply has increased, therefore I don’t need the lactation aid or formula top-ups anymore. Their feeding technique is still not text book and they do need a little encouragement to maintain a deep latch (I believe this is due to their anatomy of their mouths), but we have achieved our goal. I feel very proud of the boys and myself. The overwhelming feeling of love and unity that I feel when the boys make eye contact with me as they feed is priceless. It just feels right.
I hope that sharing my story will help other Mums that are experiencing similar problems have faith that it can be done and the rewards far outweigh the hard work. My personal drive and unwavering determination to breastfeed my babies, has helped me overcome the challenges we have faced. However, I know I couldn’t have done it without the ongoing support from Alys and Debbie. I will always be eternally grateful for their support and belief in me. Still to this day I don’t take breast feeding for granted and feel blessed to share this amazing experience with my beautiful boys.