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My Hyper-Mobile Child

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So it turns out that Ruby has hyper-mobility. This is something that I had never heard of until Ruby was diagnosed with it and yet, I found out that it’s something that I also have, although not to the same extent as Ruby. Someone who suffers from hyper-mobility is basically really flexible, there are differing degrees of it…Ruby is super flexible, like rubber. If you go to pick her up under her arms she’ll basically slide out of your hands if you’re not aware that she has it. I first noticed that something was up with her joints when she was about four or five months old. I noticed that when she was held up in someones arms, that her arms would bend right back behind her, same with her legs when changing her nappies. Considering her birth story, I of course jumped to all sorts of conclusions as to what could be causing this. So when she was called for her six month check up I mentioned it to the health nurse who took a quick look at her. She checked her joints and confirmed that she had hyper-mobility. She explained that it meant that Ruby’s joints were more flexible than what is deemed normal and that it is normally hereditary. So with that she checked both myself and my mother (who came to the appointment with me). She said that we both had it. My mam had it only slightly in her arms and elbows and I had it in my arms, elbows, lower back and hips. And like Ruby I was always really flexible as a child. So the nurse said that Ruby would need to attend physio to assess how much she would be affected by hyper-mobility. Initially I thought that it just meant that she would be really flexible. I had visions off sending her off to be an amazing gymnast or something. But apparently there are a whole host of other problems that can occur because of this condition, depending on its severity. Some of the other problems that can sometimes occur are as follows:

  • Late learning to sit, sit with a very rounded back or W-sit.
  • Skip crawling and bottom shuffle instead.
  • Walk later than normal.
  • Hate tummy time.
  • Avoid activities that are new or require effort and may have sensory issues.
  • Develop coordination and attention problems as they get older.
  • Develop digestive system problems.
  • More prone to develop dyspraxia as a result of low muscle tone.
  • More vulnerable to injury.
  • Suffer from extreme tiredness.
  • Have limbs that appear to be floppy and weak.
  • Pain in the knees, fingers, hips, elbows and lower back.
  • Joints can dislocate easily.
  • Hyperelastic (very stretchy) skin that bruises easily.
  • If there is a more widespread effect on the body, it can usually involve conditions or syndromes like Marfan or Ehlers-Danlos syndrome.

textgram_1492461824So far Ruby doesn’t seem to be affected by too many of the above symptoms, but we will have to watch her for a lot of the other symptoms as she gets older. It’s important to remember that people who have this may never have any other symptoms besides being really flexible. Hopefully this will be the same for Ruby. I didn’t even know I had it and I don’t think it has effected me in any ill way that has effected my quality of life. Looking back now, perhaps the digestive problems I have and being tired all the time have something to do with my own level of hyper-mobility, but at this stage of my life I am not going to go looking into it!  As for Ruby, she was a bit late on her gross motor skills – she was late to roll, sit, crawl and walk. But she was, and still is ahead in her fine motor skills, language and communication skills. She didn’t start crawling until a week before her first birthday and she didn’t walk until she was 18 months. But at that stage we were doing work with her at home that was given to us by the physiotherapist in order to help strengthen her muscles. So if we weren’t doing that, it could have been a lot later. She 100% hated tummy time – although, this is something that I think most babies hate. The only way we could get her to do it was on my bed.  We will have to keep a close eye on her – apparently hyper-mobile children can plateau at any stage in their development. She definitely has low muscle tone as a result – her muscles feel like jelly if you touch them and if you wave her arms around they go really floppy. But at the same time, she is a strong as an Ox and always has been.

textgram_1492461970Thankfully at her last physio check up everything was spot on. I have to bring her back when she is two, by which time the physio said she should be climbing the stairs without my assistance, jumping and kicking a ball. She said if she is able to do all of these things, and as long as nothing else pops up in the mean time, that she would be happy to discharge her, which is fantastic news. So hopefully everything will balance out. I am sure I will document it here should anything else develop. I just wanted to share this as I don’t think it is something that people are aware of – I mean, I suffer from it and didn’t even know about it! Please feel free to contact me if your little ones have hyper-mobility. I would love to hear other peoples views and experiences on the topic.

*Update* October 2017

So Ruby just had her check up for her hypermobilty. For this check up the physio wanted Ruby to be able to kick a ball, climb the stairs with little to no help, run and to jump. She was able to do three out of the four requirements. She can’t really jump yet but she is trying very hard. The physio was pleased with this as she is only gone 26 months and is still a little young to jump properly. The muscles in her legs have strengthened and her hypermobilty has lessoned in this area. However she is still hypermobile in her feet and ankles, which can make her trip a lot so I have to ensure she is wearing shoes with the correct foot support and her hands and wrists are very mobile. But thankfully the physio was so happy with her progress that she has discharged her from the service. She has asked me to watch out for anything out of the ordinary and if the tripping increases to come back. But overall we are all delighted with her progress!!

Until the next blog.

Orla the Irish Mammy xx

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To Boob or Not to Boob. 

breastfeeding meme 1Before I get into this blog post, I just want to stress that I am neither pro-breastfeeding or pro-bottle – I am of the view point of fed is best. The most important thing is that your baby is fed,  regardless of whether it’s done by the boob or bottle. Not everyone is able to breastfeed, both mother and sometimes baby too, every circumstance is different. I feel that sometimes we are too quick to judge before knowing the full story. Even before I was pregnant with Ruby I had made up my mind that I would breastfeed. I thought that it was something that was easy (little did I know then!). My sister breastfed and even though she had some problems with it, I was still determined to give it ago. But what really made me determined to do so was when I was diagnosed with gestational diabetes while pregnant with Ruby at approximately 32 weeks. I had to attend a lifestyle class in the Coombe, where myself and some other ladies were given a talk on how to make better food choices and what foods effected blood sugars etc, as well as being shown how to check our bloods. I found the whole thing extremely daunting. But I thought that if people who actually had diabetes had to eat this way and document so many things every day of their life’s, that surely I could do the same for a few months for the health of my unborn baby.

At the end of this session another nurse came in to chat to us about breast feeding. She said that we 100% had to breastfeed, we didn’t really have a choice in the matter – I have to say, I didn’t really agree with how she approached the talk. I felt like breast feeding was being forced on me as such, and that’s after I had already made the decision to breastfeed. God knows how the other women in the room were feeling if they hadn’t made their mind up yet. We were told that breastfeeding would help to regulate babies blood sugars once born (gestational diabetes babies have to have their bloods checked twice after birth to make sure there are no problems), and that it would help them with their weight in later life, along with passing on nutrients etc on to the baby. I knew a lot of this information already. But because I had this nurse telling me all of this in a force fed sort of way, I felt that I had to breastfeed and that was it. We were told that if we couldn’t make the breastfeeding classes in the Coombe, that it would be covered in the antenatal class that we would attend. I would have loved to have attended the breastfeeding classes in the Coombe, but unfortunately they were on a Wednesday morning and with a very busy full time job I felt that I couldn’t take more time off to go, so I decided to go with whatever information I was given in the antenatal class. This was mistake number one – I should have gone to the breast feeding classes! Due to work and both myself and Andy’s availability, we decided to do a day long antenatal class, but the lady who was giving it ran out of time and never covered anything to do with breast feeding. So the first time I ‘properly’ covered anything to do with breast feeding was when the midwife put Ruby on my boob after I gave birth to her. This was at the end of a very long and tiring 18 hour labour at 3.30 in the morning, so anything she was telling me or showing me went in one ear and out the other.

breast feeding meme 4So my next attempt was about four hours later when the nurses woke me and said that I needed to feed her as they wanted to check her blood sugars. I was in a room where all but one lady was breastfeeding so for some reason I felt like I had to deliver. So I picked up Ruby and tried my best to remember what the nurse had showed me just a few hours earlier, but sure I hadn’t really a notion of what to do. Ruby was roaring so wouldn’t latch on….not that I new how to do that correctly either, I think I was just trying to put my boob in her mouth and was hoping for the best. A few minutes later I completely broke down crying. I felt like every other mother in the room was looking at me and I remember clearly thinking “they must think I’m a terrible mother because I can’t feed my child”. I was so worried too about needing to feed her as she needed to get her sugars done. So I rang the bell beside my bed and a few minutes later a health nurse came in and pulled the curtain around me and asked me what was wrong. I just broke down crying.  I explained that I was just so tired, physically and mentally from the labour and I felt so overwhelmed and that I couldn’t feed my baby. I have to say, she was really nice and tried her best to reassure me. She said that she would send one of the nurses on the ward to come and properly show me how to breastfeed in a few minutes. But, of course that never happened. So I was sitting on my bed trying to feed Ruby while waiting for a nurse who would never come. In the end I asked for a bottle of formula. I told myself that she needed to be fed regardless of how I had to do it. Breastfeeding clearing wasn’t working for me so the bottle would do until I figured it out. She hoovered the bottle – she must have been starving. But it was a few more days before I actually got to give breastfeeding a go because Ruby had to be taken up to the high dependency ward (you can read all about that story here). So I was told that I would have to start pumping so that she could get some colostrum. The idea of pumping hadn’t even crossed my mind, so I went down to the hospital shop and bought the parts for the pumping machine that I needed. I found pumping so much more easier and it turns out I had a massive amount of colostrum and when my milk came in, I had a huge supply of it.  The only problem was that there was only one machine on my ward and one on the high dependency ward so it was a carefully planned out plan of attack as to who could get to them first. Because of this, one of the nurses suggested hand pumping for the occasions where there were no machines available. Again, I had no idea how to do this. So I was randomly squeezing my boob this way and that to no effect. So I asked one of the nurses to help. She said to put boiling water on two nappies and to place one on each boob to help with the let down of milk which would make it easier. She said that she would be with me in a few minutes after that to show me how to do it. But again, the nurse didn’t return. I walked around that ward a few times to try and find her, I saw her alright but it was like she was trying to avoid me. I was so annoyed over this, it was the second time a nurse said they would help me and then just didn’t bother following up on it.  So I just kept pumping like a demon and in the end my mam bought me my own pump so that I could use it when ever I needed to.

So by the time I was allowed to try breastfeed Ruby again, I still had no clue how to do it correctly. They had started to feed her my milk via a small bottle and I just explained that I really wanted to try and breastfeed. So the nurse on Ruby’s ward said that she would ring my phone when it was time to feed her (this was during the night). So I’d hop out of bed and Run up to the ward to try and breastfeed. The nurse didn’t actually show me how to hold her or give me any assistance really. I’d barely start and she’d whip Ruby off me to bottle feed her. She just said that it wasn’t working and to go and pump instead. It was the same nurses for most of the next day too and she acted the same way at each feed. By the time the shift was changing again the following evening, I was so up set by the whole thing and I felt like such a failure. By pure luck, the nurse who was taking over was an expert in breastfeeding. I explained that I had been trying since the night before without much luck and that this was something that I really wanted to do. So she promised me that she would try her very best to get breastfeeding established for me. She was so helpful. Each time we tried for ages, she showed me the correct positions to hold Ruby and we discovered what suited both myself and Ruby best. She introduced me to a breastfeeding pillow, which was a game changer. Each time we got a little bit better at it. She totally man handled by boobs but to be honest, at this point I didn’t care. I was just so happy that someone was was actually willing to spend the time helping me. Ruby seemed to be having huge difficulty with latching on so the nurse checked for for tongue tie. It turned out that she had a severe case of it – it was so severe that it was pulling her tongue inwards in the middle and she also had a lip tie as well. So the poor child wasn’t having any luck. So morning time came and the nurse said that we were almost there. She suggested that I go to the shop and get some nipple shields to make latching on a bit easier for her – as well as Ruby’s tongue and lip ties, I had a really inverted nipple which also didn’t help matters. So I got the shields as soon as the shop opened and by lunch time we were breastfeeding. I was beyond delighted. All it took was that one nurse to take the time to help me. Before we were both discharged, I asked the doctor if I needed to get anything done with Ruby’s tongue and lip ties. He said that he didn’t think so but to get my doctor to have a look at it at her 6 week check up and to go from there.

So we were home for four days before we had to take a trip up to Crumlin Children’s Hospital with Ruby (click here to read more about that story). The breastfeeding had been going ok at home. But as soon  as I got to the hospital, I was there on the first night trying to breastfeed when they told me to start pumping again. I can’t remember what the reason was, I don’t think there was one really, they told me. In hindsight I should have said no, that I wanted to stick with beast feeding. So I started pumping again, but by the time we got home again I just couldn’t re-establish breastfeeding on my own. So I continued with pumping and told myself that she was still getting breast milk, just via a bottle instead. I lasted just under 8 weeks before my milk dried up. I tried to pump every three hours to keep my supply up but eventually at each pumping session I was producing less and less milk. In the end I was getting maybe two feeds in a day. I couldn’t keep it up. I was getting up ahead of Ruby’s scheduled feeds to try and pump what little milk I had left (the pumping and feeding schedules had become out of sync), then by the time I was finished with pumping, it was time to feed Ruby and long term I just couldn’t sustain that kind of schedule. So I decided to use up what ever breast milk I had left in the freezer and I slowly weaned Ruby onto formula milk.

breastfeeding meme 3During those eight weeks though, I noticed that while I was feeding her breast milk via a bottle, that she was having trouble even sucking/latching on to the bottle so I brought her to the doctor to take a look at her tongue and lip tie. My doctor said it was very bad and that it would most definitely affect her eating and speech when she was older. So we were advised to get the ties snipped. We brought Ruby when she was eleven weeks old to a specialist named Dr Dermot Murnane who did a fantastic job. If I had have been told how severe it was by the doctor when I actually asked him in the hospital, I would have gotten the procedure done straight away – maybe I would have had a better chance at breastfeeding Ruby. If I ever have any more babies with tongue tie, it’s something that I will definitely get done again. Also during this time, I brought Ruby to a breast feeding group in the health centre, more so to keep an eye on her weight. I spoke to the health nurses about the difficulties I was having with breast feeding and filled her in on Ruby’s story. Her answer was something along the lines of ‘well sometimes if you’re under that much pressure it can effect your supply’. That was it. There was nothing else offered regarding help with re-establishing breastfeeding – baring in mind this was still within the 8 weeks before my milk supply stopped. I got no advice on where to go or who to talk to. All she gave me was a little flyer with tips to help with breast feeding – all of which I was already doing. I just felt that there wasn’t a lot of help given or available to me for breastfeeding. I think that the nurses etc just expect that if your breastfeeding that you can just go and do it and if you happen to have any problems along the way, deal with it yourself. I found that there was very little advice available to me from the time I was in hospital right up until I could no longer breastfeed. I don’t think there are enough resources out there for women. I know there are websites etc that explain how to go about it. But I mean there is very little hands on help out there – unless you can afford to go to a lactation consultant. Of which was never mentioned to me as an option when I was in hospital. As I mentioned above, breastfeeding isn’t for everyone, whether it’s by choice or not, which is absolutely fine. You need to do what is best for mother and baby. But I think that if it’s something you decide to do, that there should be at least more help out there. Just because it’s something that is natural, doesn’t mean that it will happen naturally for mother or baby. Maybe I am wrong, but all I can draw my opinion upon is my own experience on the matter. Hopefully, if I ever give Ruby a little brother or sister, that my experience will be far better and easier than it was with Ruby. Here’s hoping.

Until the next blog.

The Irish Mammy xx

 

P.S. Here is a link to Breastfeeding.ie for anyone who is interested.

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