About myself.....

When I started blogging here, I focused a lot on Sami's development, especially relating to her reflux journey. Recently, I talked about our journey as a family on a more harmonized family life.

Now I would like to turn the spotlight onto myself for a short moment. A lot has happened in my life, and definitely in the past five years.

After Sami's birth, my life has gotten onto a faster roller coaster, and as a mother, you will continue to fight for your little one, so you do your best to remain strong. I have gone through a period of postnatal depression, which was definitely one of the darkest moments of my life. I was lucky to have my husband to lean onto.


Often families with attention demanding children whether it is medical or due to other reasons are struggling on their own with not as much support as needed. Understanding is hard to obtain, and that's not because people around them don't want to, but it is sometimes just hard for others to know what it really involves.

For instance, reflux children often have bottle and food aversion, and the feedback you get from people around you may not always be helpful, because they don't deal with your situation daily. They have no idea the intensity of this.

Sami's aversion is luckily not as bad as some of the refluxers that I've got to know, but still it's very tricky. We are told that she is now missing certain vitamins, calcium and iron. As a mother, I don't mind her being small and short, but I do want her to be healthy. I try all sort of food, menus, different cooking style to get her eating more. Sometimes my son will get jealous of his little sister for the amount and variety of food that she gets, and when she refuses to eat them, he then finally gets them. Sure enough, I try to make as much for both but that would be way too much, and I try to explain to my son why this is happening. He tries hard to understand.

Refluxers are also known to be poor sleepers. I don't know if this is why Sami doesn't sleep through the night. She is now 19 months, and answering whether she sleeps through that night is like playing Russian roulette. 9 times out of 10, I am the one getting up for her as my husband just can't hear her crying. I don't always run to see her, but I'm awake by her crying. I struggle to fall back to sleep at times or she wakes me up again after I have fallen back to sleep. But the 19 months of broken nights do impact my life.

In general, in the current society, women face an ever-increasing demand on playing the role of multi-tasking. We are expected to work while taking care of things around the house. We are more detailed-orientated, and therefore lots of things are taken care of by us.

I am one of those women. I work full-time, and have two children to take care of. My ex, my son's biological father, has left for China for his career, so Julian is with me the whole time which I don't mind or complain. However, it does take time for my husband and Julian to find their ways to build a step-father & son relationship. It's not easy for either of them. Often I deal with guilty feelings because of this too. I also try to facilitate between them, but sometimes I feel I am stuck between them.

Last year, I have been diagnosed for the first time that I have chronic migraine, which explained a few symptoms I have had in the past years. I am now on lifetime medication, and one of the side effects is gaining weight. So baby fat plus this doesn't make it easy on me, and this puts a heavy load on my self esteem. Comments made by others are harsh but at the same time I think they are true. I have gone fat!

With my illness, my experience in depression, abuse, the usual day-to-day push and rush, and "entirely-for-others" approach, I end up feel drained, hardened and disconnected from the inner me.

In the Chinese culture, we are taught not to think too much about ourselves but others. We give and give. If we don't, then we are selfish. We are told that every one has his/ her own challenges, and our own ones should not be seen as important. We should not be under the spotlights. But is this correct? Should we keep on going?

Once in a while I do get an hour or two for myself, and I go out walking in downtown, or getting shopping for myself and the family. I find myself feeling temporarily relieved, but they are just short-term bandage over the wound within the same cycle, and eventually the same drained feeling returns.

So how do I break this cycle? How can I let go and fix this before I run out of battery? Without an energized mother, how can my kids grow up?

So I have decided to go ahead, reach out for help. At first, I wonder if I'm exaggerating things. But the more I have dug into the issues, the more I have come to realization I want to have this sorted.

My picking up on running, to be out there alone in the cold air free up my mind.

My speaking with a few inspiring people helps my finding ways to deal with scars and move on.

So I would really like to urge any of those who are dealing with all that "pushing-through" action after action, day after day, to not only take care of others, but also themselves.

Yesterday after my blogs were posted, I have received some loving complimenting feedback and a few of them are mothers with reflux children. Some are inspired by the thought of writing. I'm happy because to be inspired is great, and to inspire is even more incredible!

Sami, our little reflux fighter, 19 months old!!!

Time does go by faster with Sami growing a bit older, even though she is still not yet fully off the reflux medication that she is taking since 6 weeks old, Nexium. She is a fighter, someone with a strong character! And sometimes that explains why she complained so much when she was in so much pain with the reflux and infections bothering her. On the other hand, that's how she has managed to keep smiling whenever she gets to. Showing us how proud she is of her own achievement. She takes her time to show her milestones, but when she does, she lets us know she is ready for it. This is also why I am so proud of her!

 

 

Recently, I made a post on my Facebook telling others how grateful I am being a mom for Julian, and Sami, that I have learned to be more conscious about gentle peaceful parenting. It's a great learning process for and funnily enough, I am happy to be in it, though sometimes I struggle.

 

Then a mom who has a reflux child has asked me if that is because she is doing better, and that's why I feel better.

Maybe that I've more sleep, so more patience.

 

Actually that's not really the reason. Sami is still small to her age, size wise. We struggle with feeding at times, and her food aversion from reflux poor days gets complicated when toddler hits her (or us!). She tells us clearly what she won't allow to be presented in front of her as being food. We have followed diary free diet for over 6 months now. We don't know if it really has helped, and she is getting smarter to know we are trying to give her non-diary substitute, such as rice milk, so she has started to refuse those too. From the latest report from the diet specialist, she scores low on certain vitamins, calcium and iron. When telling some people, they would suggest to force her eating them, or they just make comments about my not having tried hard enough. Sometimes the amount of food I make can actually feed a few families, and the amount of food that ends up on the floor is so much that Sami should donate to the 3rd world countries.

 

And about sleep.... I still get up often at night for her. Sometimes I don't get up, but her crying does wake me up. At times I am too tired to get out. At times looking at the web-cam from my smart phone (thanks to the technology available these days!!!), I know she may be just crying over a dream. I am finding it harder to get out of bed in the morning simply because my body is just too tired and worn out after a long period of missing my bed.

 

 

 

So where do I get patience from? Well, no where... it's something I have to learn and earn. It's something that I must recharge myself. I have realized that I've waited long enough not to do anything about it but to complain over it. So after having spoken with a few inspiring people, I realized that there are other ways to handle this.

 

They have inspired me how I could look at things differently.

They have encouraged me to seek for help and support.

They have lent me a listening ear.

 

 

 

Surely, all these smiles I get back give me courage to keep moving in our busy hectic daily lives.

 

 

Recent visit at the pediatrician had brought us worries, as she was wondering if she had immunodeficiency. So poor girl, I had to have Sami's legs tightly held between my legs, her right arm under my armpit, and both hands holding her left arm. There were two nurses helping to hold her down and get blood out of her. Because of her small blood veins, we had to wait long for each drop of blood to fill up that tube for an extensive blood test. I felt so sorry for her, but I held my tears back, kept on talking to her to let her know that soon it would be over.

 

Luckily, the results came back alright, but the question remains why she is as often sick as she is. No idea. The pediatrician still wants to go ahead with giving her 6 weeks of antibiotics to see how her body would react to it. I just have strong doubts on it, so eventually we decided not to go ahead with this.

 

I am writing this not to ask for people's attention on us, but hope to help you inspiring others on how hard sometimes it is for families having an attention demanding child. Give these families some support, even if that is as little as just a hello. Don't be judgmental on their choices, because they are making their choices the best way they can.

 

And for those families who are still in this game, fighting for good health for your little ones. You have no idea how great your hearts are, and I hope soon one day you all can see the light at the end of the tunnel. Don't underestimate how much love you have in your hearts!

 

I still want to thank those who have been giving me support in this, even if they are just small messages left on Facebook in encouraging us. Thank you!

10 months and 9 days.... a list of things that spouses, friends, families, or whoever that are involved in caring a reflux baby can do to help....

10 months and 9 days down the road of having a reflux baby in our lives, and this remains to be the hardest thing I have ever had to handle in my life, because it's not like the harder you work on it, the easier it gets.



I've been reading tons of articles and books about reflux, and I have also seen a list of things not to be said to families with reflux babies/ kids. What I haven't seen so far is a list of things that spouses, friends, families or whoever that are involved with people with reflux babies, can do to help. So maybe I will give that a start myself, in the hope of helping other families.

• Whatsapp, text/ message, call, or drop by to ask how they are doing. Reflux families are often isolated from their social network for a much longer period than those who have kids. It doesn't mean they don't need a social life, as in fact they miss it an awful lot.
• Offer help by just asking what you can do to help them.
• Bring food along as sometimes caring a reflux baby is so consuming that putting food on the table isn't something they end up being able to. If you've kids yourself, remember the days that you just had your babies, and how occupied you were in the beginning. That's what some of the reflux families are dealing with daily.
• Take their other kids out as families with reflux babies don't get to go out often, simply because it's hard to feed the reflux babies out there, let alone some that are constantly vomiting. 
• Give them a hug as often as you can, since sometimes even though you can't help them to take the heaviest burden away, a hug helps to release the pressure.
• Help them with their household, such as cleaning if possible. With reflux babies that vomit often, the laundry pile can get real high. 
• Offer your babysitting service if you can. Even if it's just for a couple hours, and certainly if you can even give the couple a night out or a full night of sleep, you have no idea how much they would appreciate it. 
• Help them with groceries shopping, as again, getting out of the door is something some of these families struggle to do. 
• Tell them that they are doing a great job, and they are doing their best already even though right now it may not seem enough to please their little ones. By reassuring them, they will have more courage to hang in there. 
• When offering to take care of the reflux babies, ask them what they want you to do, and avoid giving excessive comments on how different you would otherwise do it. 
• Get yourself reading some reflux articles, so that you understand what it is about.
• Read the list of things that you should not say to reflux families.
• Make them a cup of tea or coffee as often as you can if you drop by. Often these moms or dads are having iced coffee or tea unintentionally.
• Caregivers of reflux babies need to rant and throw their frustrations out. Don't judge them, even if they say they regret having the kids. Tell them it's normal to have those feelings, and reassure them that they are doing a great job. Remind them that soon this will be over, and that they will get to enjoy lives again.
• When offering advices, tell them maybe those advices don't work, and that it's ok if they don't want to hear them, because often these caregivers have been educating themselves so much that they end up knowing more than those theoretically educated professionals. Also, what works for one reflux baby may not work for the other.
• If you've the time, offer yourself to go along and join their appointments with the health care professionals. Even if it's just giving a hand to hold their babies, so that they can have a clear mind when talking to these professionals.
• Just because they're not vomiting everywhere doesn't mean that they don't have reflux. Parents of children with silent reflux will tell you that you can sometimes hear it and that each child has their own tell-tale signs of an attack.
• If the mom is a working mom, don't tell her to stop working assuming then the baby will be better. If the mom wants to stop working, support the idea, but don't ask her to stop if she doesn't want to or can. Sometimes having a job out there can keep the mom going, plus they may need the pay cheque as well.
• If the mom is a staying-home mom, it is also hard as staying-home moms have no official lunch breaks, or coffee breaks. So any of your help is very much welcome.  
• Just because they are thriving, doesn't mean that they're well
• When holding / looking after a reflux baby, respect the requests of the parent with regards to things like what the child can or cannot be fed ((quantities, timings, trying new foods etc) don't try new foods without asking etc), how they should be fed, whether or not the child can be bounced on your knee, and whether or not it is safe or appropriate to lay the child down. 
• Parents know their children better than anyone. Don't assume that because you've had children before them or are "older and wiser" that you know better than baby's mum or dad. Be kind and considerate with words and learn when to step back and let parents get on with it. It is just as important as learning when to pitch in. 
• Keep an eye on mum. PND develops all to easily for mums of otherwise healthy children, never mind a mum whose child had additional needs. Learn the tell-tale signs but also pay attention to things like not eating or comfort eating as they too are signs that something isn't right.    
• All weight gain is good but the wee one might still be falling through the centile lines on a growth chart. Getting the wee one weighed can be very stressful and acknowledging that can be more helpful than you'd imagine.
• 

Tough weeks behind

Since last post made on Sept 17th, a lot seems to have happened, including a horrendous weekend. We struggled getting Sami fed, as she would end up taking only 300-450 cc of milk (10-15 oz) per day, and got very unsettled at night. She didn't enjoy her solid food as much either. So eventually we found out she was having bronchitis, so we got antibiotics from the GP, in which the pediatrician at the hospital wasn't too fond of. After 3 days on antibiotics, her lungs are clear again, and she started to improve 2-3 days after we stopped the medication.

Sami was hospitalized then for the 6th time on October 2nd, since we were at our wits end, and I could not handle it anymore. Actually during the weekend of Sept 27th, when my hubby had to leave us alone at home due to home-moving, I really was at my worst state. I hated feeding times, and it was impossible to hold Sami properly during feeding since she would arch back so much that it was hard not to let her fall. I was in tears, and yet I couldn't get any help. My hubby and I had more fights, and then we made up, realizing that this is all due to the stress we are having.

I am glad however that I've kept in touch with one of our "kraamzorgster" (someone who took care of us at home for a few days right after coming home from Sami's arrival), who has been great. She texts me often, checking how things are. She shows a lot of understanding which I can't always get from everyone. She introduced me to "Babyhuis" which I didn't know about, a place where they will assist moms and dads with their babies if they are in trouble. They will take the babies in and help you to regain your confidence and pick things up again on your own. Though eventually we didn't go there as Sami got hospitalized, I feel relieved to know I've still have help and hope as I didn't feel so in those dark moments I went through.

What is tough with having a reflux baby is that not everyone can understand what you're going through. People may think you're exaggerating, overreacting, over-demanding, and that you should accept life as it is for having a baby. I thought at times that these people were right, and that I shouldn't fuss at all. I also lost hope in getting help from people or from the medical experts. All I could do was praying, and even that I was losing my faith. Having a reflux baby is the hardest thing I've ever had to handle. Not only how to handle her, but also how to fit that into our lives.

I feel awfully guilty when I've less patience and time for my son, Julian. He has been real sweet and understanding, but he is still a child of 9 years old. He still needs me. This week with Sami being in the hospital, we even had to ask Julian to do his homework on a folded table in the hospital, and had dinner much later than usual. He said he would tell his little sister in the future to love me more because of all the effort I've put in now with her feeding issues.



Next to that, I have a job that I love, a job that I must keep to pay our bills, a full-time job that others may not understand why I am keeping. In Holland, most moms either stay home or work part-time. With my job, it's not close to impossible to do it part-time, so luckily in a way, I can have a certain flexibility, and I've a very understanding boss.

Due to my struggles in this, I sometimes ask my hubby if he regrets having me as his wife, as his daughter's mom. Luckily, so far, he hasn't got regrets yet. One thing we both agree to though is that we won't be having another baby for sure. I admire moms who can handle having another baby after a reflux baby. Or even having twins reflux babies. I really don't know how they do that.

Today Sami is being released from the hospital. The pediatricians asked me to come in to have a talk as my hubby was there already since he took days off during this time. We sat down, and I told them my concerns of having all these major ups and downs with her feeding issues caused by the reflux. According to them, the reflux should be under control, and that she will grow out of it (yes...we have heard that many times)... They said she is growing well, and has enough reserve to go by if she doesn't drink well for a few days. They claimed her bronchitis came from a cold and not what we thought from the reflux. Anyway, we aren't doctors, so we can't win that discussion there.

Since they only had her when the horrendous days passed, so it's hard for them to see the bad days but only saw the improvements. They asked me if I had enjoyed the time with my LG, so I told them I've had many days that I really don't. I hated feeding times, and wish I could just stick a pill in for her to live on.

Now they have signed us up for their "eating group" where we get support not only from speech pathologist, dietician, but also children psychologist who can also help the moms dealing with emotions when caring a baby isn't as simple. They were afraid I would take it offended, but I didn't and told them I am open for any help, if only it's to make us a happy family.

I know we will have a long path to go and I'm really hoping this is another new start. They have asked me to try staying positive, and not thinking negatively. I told them it's hard when you've gone thru 6 months of non-stop feeding issues and so. And it's even harder when you're told to lower your expectations when you're the one who gets out of bed 5-6 times per night, and the next day you still have a full-time job to go to!

We do know that in comparing her case to other cases what you see in a hospital, she is very healthy then. I have heard from friends who had seen some mothers having to say goodbye to their babies in the hospital for good. I guess then I must feel very lucky that Sami is a happy baby in general if she is not bothered by the reflux, teething, or so.

Sami now being 6 months old, has not only been able to roll over from back to belly, but now also being able to go back from belly to back. She would keep rolling over now when you put her down, unless you tug the extra piece of her sleeping bag under the mattress, and tug her tightly in with a blanket.

Yesterday for the first time, the hospital also skipped her 11:30 pm bottle, and she did sleep till this morning when they had to wake her up for her 1st bottle. Let's hope we can keep doing so then. I kept giving her that bottle since she was drinking not much and thinking that at least that would help to add the intake up. Now that she is taking more food in, maybe we can try going without. Who knows, maybe she will take more during the day too.

She not only likes eating parsnips, but also broccoli, spinach, and green beans. Hope she will enjoy food as much as I do :-) 

She has learned recently to put her own dummy back into her mouth by having played with it constantly, pulling it out of her mouth and back in... It's cute to see!





In 2-3 weeks time, we will be going on a small vacation together as a family, and a very good friend of mine will be joining us as well. I look forward to it!!! I can't wait to see how she would react when being put into the swimming pool, as I remember how much Julian loved it, and started swimming when he was 7 months old. Sami would be 7 months old then too!