We found the last puzzle piece?

Instead of just telling everyone how I have been struggling with Sami's silent reflux and feeding issues, let me put something positive now on here.




Last Friday, I called the pediatrician as I was at my wit end on how to handle her silent reflux, which causes feeding issues as well as sleep deprivation. He then prescribed us this formula which is "anti-reflux". What it does is that when the milk gets to her stomach, it will use the stomach acid that she has got, and the milk will be thickened in her stomach to avoid spitting up. It's advised not to use any medication and sometimes it's used to wean off the medication for some cases. Now in our case, the pediatrician also agreed that it may not be wise to try another medicine since we had tried 3 and she only got more miserable from them. Unfortunately, the pharmacy in our village didn't have it in stock, so we had to wait till Monday.

On Monday, Sami refused to the bottle at the daycare, so they fed her porridge by mixing her milk with rice cereal, as a desperate measure so that at least she had eaten something. So on Monday after work, I immediately rushed to pick this up. We started giving it to her on Monday evening after her bath. She took the whole bottle without fussing. I didn't dare to declare victory just yet, and the midnight bottle didn't go as well as the previous one. She fussed and it could be because she was woken up by us and we also noticed that the milk is still somewhat thicker than the normal formula she had. So down to trying out which size of teat she would need then.

On Tuesday morning, she took the bottle very well from Papa which was uncommon. Papa tried also using Stand III instead of Stand II, which is slight bigger, and she pretty much finished her bottle. At the daycare, she also took her bottles again.

Today is Wednesday, and she even took 180cc in without fussing at all in the morning while normally her morning bottle had always been a battle. And when she burps, she only has a normal small burp, unlike those major loud burps which you would expect from an adult man after their beer or so. Probably because of the milk staying in her stomach, so when she burps, she doesn't get the stomach acid coming back up which was painful to her in the past. After her bottle, she was chatting and laughing happily. Yes, I've actually got a happy camper in the house again!!!!



To a lot of reflux babies' mommies, we often feel depressed when our babies don't eat or don't sleep, or don't do both of these essential things. Our mood is always depending on how much our little ones has drank, or how often we have to get up at night. I know it's crazy, but we can't help that.

We sometimes even joke about putting our babies on ebay, marktplaats (in Holland), or any other selling stuff sites, to rent out or lease our babies. And those people who rent them can bring our babies back when they are reflux-free!

During the last few months, I've got to know quite a few moms around the globe who are dealing with similar issues as we are. And it's really amazing how much we understand each other even when we share thoughts that may sound so alien to others including moms with babies without reflux. Even though we cannot always help each other, but the understanding already makes a world of difference.

Again, I want to thank those who have been sending their love and care to us during this tough period, especially those who even offered to help. This means a lot to us! Now let's hope the peace stays with us, so that we can enjoy our family time more.

Coming Friday, Sami will be going to our trustful nanny for two nights stay-over. Yes, I'm so darn lucky to have such nanny. I will then spend some time with Julian, as I hardly spent time with him during this summer vacation, and Friday will be his last day of vacation. I asked him what he would like to do, and he asked to go for a movie, so we will do that then. My hubby is looking forward to getting a relaxation massage, so let's also have that done. And on Saturday, we will go out for dinner with my family as it's my dad's birthday. Some people may not agree with me not bringing our little girl out as well, but it's just no fun to her to stay out late. I'm really looking forward to this weekend, and it's not because I won't have Sami with me, but it's because we can take a mini-break while I know Sami will be in good hands plus her getting better gives me a good feeling about this. 

As a reflux baby's parent.....

I've read the other day somewhere of these top things not to say to a reflux parent, and it's so darn true!!!!

Quoted from top-20-things-not-to-say-to-a-reflux-parent

1. All babies cry you know.
2. All babies vomit you know.
3. Is this your first?
4. He’s feeding off your stress.
5. But she seems so happy.
6. Oh my baby used to vomit all the time too!
7. But he’s a healthy weight?
8. Don’t worry! They grow out of it.
9. You need to stop breastfeeding  / have you tried formula?
10. He’s just got colic.
11. She’ll eat if she’s hungry.
12. He doesn’t vomit so it can’t be reflux.
13. Sleep when baby sleeps (not helpful when baby doesn’t sleep).
14. Don’t let your child rule your life – they need to fit into your schedule.
15. Send him to me. I’ll sort him out.
16. Stop spoiling her.
17. You’re over-reacting. Just relax.
18. He just needs more cuddles.
19. She doesn’t look sick.
20. Screaming is good for their lungs.

What more can I think of?

1. Don't pay attention to how much she drinks as you will stress her out.
2. She looks chubby enough, so she doesn't look like she has feeding issues.
3. Lower your expectations on how much she drinks. 
4. She just doesn't need that much feeding like other babies.
5. Let her cry it out, don't spoil her as she will get used to having the attention.
6. Did you try using a different bottle or a different teat? 
7. Maybe you should restart breastfeeding? 
8. Maybe you need to work less and spend more time to take care of her yourself.
9. Just start her on solid food and she will be fine.
10. Before you know it, she is a grown up. Time will fly by. (Try telling that when I'm getting up at night walking over to her when she cries for only the 3rd/ 4th time that night. Or when I'm struggling with feeding her.)
11. Stick to the routine.
12. Don't stick to the routine, and feed her when she wants it. 
13. Feed her smaller bottles.
14. Try less hard.
15. Relax. ( How can you relax when you've been dealing with this for months?!)
16. Oh she doesn't really split up or throw up, so what's the problem?

We are also considering getting Sami a nanny (either her going to the nanny's house or having the nanny over). Initially my hubby is very reluctant to even think about having a nanny, because of the poor experience we have had in the past with my son. However, I kept on reminding him of the good experiences I also had and have! Unfortunately the wonderful nanny Julian had before isn't living around the block, so it's just logistically not possible to have her taking Sami in a long run. She is wonderful and sweet enough to help me out from time to time, so that I can have my break in between to catch up on some sanity.



Right now at the daycare, because of their having numerous of staff with other kids needing attention as well, Sami's feeding issue becomes more challenging there and her sleeping pattern is heavily impacted. Also, you can tell one personnel there ten times of the points you need to pay attention to when taking care of a silent reflux baby, but the next thing you know, it's another person taking care of her that day. Or they just get bored with having to read the instructions you put down, so that won't help Sami. A daycare is basically good for kids to start learning to socialize but at Sami's age, all she does when she is awake is sitting in a bouncer seat watching other kids running around. I bet that can be also tiring, if I imagine myself sitting in the crowd watching them running around and making all sort of noises.

However, finding a proper nanny who is willing to take a reflux baby, and who is experienced enough, plus affordable to us is one major task. I remind myself to be patient on this, as I guess we need to also bump into such person like we did with the great nanny I've met for Julian at the time.

Again, this is the support we as parents with reflux babies miss. Our lives definitely need to keep on going, including our jobs, our attention for my son, household, etc. Yet, without proper support, it can create such a big stress on our shoulder. I know there are a lot more serious and life threatening illnesses out there which need more awareness and support. However, what I don't quite get is in such a modern advanced medical world, how come no one seems to be able to give a solution that can help our daughter to feel better?! Even with certain medical staff, they have no idea what reflux really means!

5 months

For those who have been following my Facebook or my blog will know that we are still struggling with Sami's silent reflux and feeding issues. Probably people are getting bored with my mentioning this over and over again, or repeating how much sleep I'm missing, how much Sami isn't drinking, etc. To be honest, I'm tired of that too, but I've no other choice than to keep looking for ways to make her life and ours eventually easier.

I really hope somehow I will be able to help other parents in the future on raising awareness in the society on baby reflux issues. Yes, reflux won't kill a child! Yet, it kind of kills the bonding time between the mom and the child, as feeding should be the time that is most wonderful thing a mother can do with the baby in the first months of the baby's life. Instead, often we are battling in trying to feed our babies, since we can't afford the idea of our babies starving. No matter how much patience one has, eventually when struggling with lack of sleep and feeding issues along with the crying, you will lose it at a certain point.

I have found myself going from losing it all to losing it for a few seconds, and then calming myself down by talking to my little baby. It's tough really, as when a little creature is arching herself, or getting real mad, you really almost want to fight back but you know you can't. I think most of the parents who have dealt with reflux will fully understand what I mean by this.

I have had evil crazy thoughts which I am ashamed of and feel guilty about, but sometimes I wish I could run away, or not have Sami at all at a certain point. Well, please don't get me wrong, I love her loads and I would like to protect her with my life. Just that life with a reflux baby can be like a roller coaster without an end to it. Basically I got myself up there on the roller coaster, and I need to just wait till it comes to a stop. Again, most moms who have dealt with reflux will probably nod their heads if they are reading this. 

Everyday I get up and tell myself it's a new day, a day closer to her silent reflux leaving us and that there is hope. I'd a melt down moment yesterday morning when trying to feed Sami, and her refusing the bottle after 50 cc. I'd a hard time to let go and let it be. We have this log book, putting down how much she drinks, and sometimes the quantity of milk she has drank feels almost like a score from school. When my hubby went telling me it wasn't Sami's fault, I just lost it and broke into tears. Of course I know it is not her fault! It's no one's fault, and that's the tough part. As parents, you know something is bothering her, but you can't do anything to help fixing it. And when being tired to your bones, you have less capacity to cope with tough times, especially at night or early morning. 

Today I'll be picking up the new formula which the pediatrician has prescribed, so we hope that will also help her, which then can help us. People say between 4-6 months with teething starting, this can cause reflux to flare up even more. So that probably explains the frequent night wakings. I am starting to find myself being "used" to being called out of bed these days. Just that at times, as I'm so tired and stressed, I end up not being able to fall asleep even if Sami is asleep. Isn't it crazy? I think only people who have been through this know what it means by being too tired to sleep. My hubby can't understand it and tell me to learn going back to sleep. When he said that, I really felt no one could understand me which was probably why I'd that melt down moment. 

So my advice to people who have friends or families dealing with hardship, please try to have some sympathy on their feelings. Don't deny their feelings, allow them to express their feelings, acknowledge them instead of judging them, and try to come up with ways that you can help them with, instead of making suggestions on what they should do. And if you don't know what you can do to help them, ask them what you can do to help them instead of staying silent. Also hugging them would really help them to go through this stormy period. Just be there for them. Use today's technology to show them you care, even it's just a few whatsapp messages or facebook posts. If possible, even go by just to say hello, have a cup of tea, or just chat with them. You've no idea how much you can already brighten someone's dark moments. 

I'm thankful that I've some friends who have been doing some of these. I don't have that many friends who would come by to chat or to take over some workload from me, but when I do, I'm so grateful. I'm thankful that I've a nanny who has dealt with reflux from her own kids, so she knows how to handle Sami. She won't mind taking her even if it means she needs to get up at night for her. Even though she doesn't live close by, but at least once or twice in a month to have her helping us out already means a lot to me. 

@ 21 weeks

Today Sami is 21 weeks old. If it was a pregnancy, then that would mean I would be half way through the pregnancy. Also, that was when we were all anxious to know the gender of the baby. Every week is a milestone to me. For others who spend their weeks as usual, to me, every week is special.

There are hard times definitely during all these weeks. Sami had drug free for about 1 and half week and she started drinking much better. Then after being put back on meds, she drank really poor again. So now we are on day 4 without meds, which I hope she will start drinking like she was a week or two ago. Today she got her 4 months vaccination, so maybe she would be more fussy than usual anyway. These days, we often are hit by restless nights. We don't know what the cause of those sleepless nights are, but we are hoping it will get better.

What I've learned over the last period of time is that it's ok to accept the emotions you've as a mother. Being a mom of a silent reflux baby, you don't get much support from the local health providers such as the consultation office as their knowledge in it is so little. And you have to be lucky to have the right pediatrician to treat your child properly without them first blaming on the mom being the overreacting freaking out mom instead. Often you get to hear from people that it's normal kids split up, or that kids don't drink their bottles from time to time, or seeing your baby not skinny and so you should not worry. Well, these people have no idea what we are going thru daily. It's not just about how we feel, but most importantly how Sami is feeling. With silent reflux, she doesn't toss anything out, but her stomach acid gets up which gives her pain and discomfort. Yes, the older she gets, the more likely she will grow over it, but there is no time line set when that will happen. If you look at some forums of what the baby reflux moms are dealing with, I've seen cases where it keeps going until they are 3. Then it feels almost as if we were being lied to for those timeline they initially guessed. So I really don't dare to think too much of when this will be over for us.

And yes, it's also difficult to receive proper support from people around you. Everyone is occupied with their own lives. If you get hear from a friend who offers the help and is actually standing in front of your doorstep ready to help, you are the luckiest person in this universe, since this doesn't really happen often. I don't blame anyone for this, as I may have not given such support to others as well before, as often this is done without consciously knowing. That's also why I've created a group on Facebook known as "Baby Reflux Moms in Holland", in the hope that we can have more awareness in this, plus giving moms some support in this by sharing experiences. I've picked up so many tricks that are handy or even important in handling reflux babies. I've recently shared this information with another young mom who is new to reflux, and she was overwhelmed by all these tricks.

So yes, parenthood is hard, especially when you've more to deal with than just standard baby issues such as teething and so. Ok, Sami isn't so sick that her life is threathened, and I'm grateful that's not the case. Just that it doesn't make it all that easy. And what is also very important to get through this period is having a partner who doesn't deny your feelings, doesn't judge you or tell you're wrong to have those feelings. You need a partner who then accepts your feelings, and does his/ her best to support you. Sometimes a hug helps, sometimes taking off some workload from your shoulders helps. I'm lucky to have my hubby who does do a lot of household chores, so that I can have time to rest or to come around.

At the same time, I also am reminding myself that every day is a new day, a new start, and who knows what that will bring us. I try to enjoy each smile our little girl gives us, and cherish each moment that I see her developing new skills. Yesterday after having got a tiny push from me, she went from her back to her belly. Then she was even trying to make crawling movements in order to grab her toy. She likes grabbing things now and is getting a hang of it. She likes swifting objects from her left hand to her right hand and back. And she not only has discovered by scatching different surfaces with her finger nails will create different sounds, she has also found her toe nails do that too! And when I feed her now with a spoon, she likes grabbing the spoon, and tries to put the food into her mouth. I let her play with a bit, though it's messy, but I think it's good for her to feel it.





I am thankful also that babies are forgiving, or at least that's how it feels. She seems to forgive/ forget the frustrated mommy, and will laugh when seeing me, or will let me hug her. I do enjoy the moments when holding the sleepy Sami, with her head resting on my shoulder. I know then those moments would only be temporary, as the older she gets, the more independent she will become.

Sami is definitely using up a lot of patience quota from me, a lot more than Julian at the time. And I'm learning each day, even with carrying my panda eyes around (black circles, especially eye bags), because I know soon she will be 5 months, then 6 months, then 9 months... then 1 years old... Now I'm counting by weeks, and soon will be months, and then will be years only. Look at Julian now, I don't check anymore how many weeks old he is, or how many months old he is.

0 years old... 4 months old...20 weeks old.....142 days old....

Dear Sami,

I don't know if you would get to read this one day, since these days it's hard to tell how much I put onto the internet will still be when you're old enough to read this. I started blogging with your brother, and tried my best to blog every day to write down his daily experiences as well as mine as a mom. Just too bad eventually yahoo has stopped the blog service completely.

You're now over four months old. With your brother, I was very much involved in reading each expected development every week, hoping to check mark what he could do out of those lists. With you, I'm less conscious about this, and have been more involved in how to get you drinking well, and how to make you a happier baby and minimize any discomfort or pain from your silent reflux. We have been battling together on this all this time together. We have seen numerous doctors and nurses. What I notice myself though is that I've become more confident and secure of myself than I was when I was a mom for the first time with your brother. So you definitely has benefited from that, for being my second child.

Yet I do realize it is also nice to put more focus on other things, like your development. Things you're learning each day.

You have not only found your voice, you've been more chatty these days.

You can not only smile but also laugh with laughing sounds.

You have not only found your hands and your arms, but you've also figured out by scratching with your fingers onto certain surfaces, you will get different sounds.

You have been able to roll from your belly to your back, but that is probably you didn't enjoy being put onto your belly. I've read mixed information about whether to train a baby by putting the baby often onto the belly. So now I just see how you are each day, see if you would fancy that.

You have been drinking slightly better after you stopped the medication. Just that unfortunately after we have a pH test done on you, the doctors say you should still be back on medication to lower your stomach acid level. We hope we now have got the right suitable medicine for you, so that you will stay being a happy baby.

You have started with solid food, namely pear which you didn't seem to appreciate, parsnip which you initially liked but seem to start having problems with, brown beans which your papa is proud of when you start passing gas, cauliflower that you dislike, and carrots with apple which you seem to enjoy. I don't always give you solid food as sometimes when you don't drink well at the daycare, then I will give you a bottle instead of any solid food since at your age, bottle is still the best feeding for you for now.

You started splashing the water with your arms and legs when you're taking a bath. You probably are amused by the reaction mama and papa make when we get wet.

Everyday is a new day for us all. Some days you give us a hard time at night, and then some days you amaze us by letting us sleeping in a bit. No matter what, I still love you to the moon, even sometimes I'm still learning how to be more patient. Yet, I think this time being a mom, I've been given by God the opportunity to learn being a better person as well as a better mom.



Love
Mama