5 months and 24 days....

I used to think Murphy's Law should be used only on negative people, but I'm starting to think Murphy's Law can often be applied on life with a baby. On my last blog post dated on August 27th, we thought we had found the last puzzle piece, guess what, we were wrong.

The Enfamil AR that we thought was the answer to the equation got us to our lowest point in terms of the amount of milk Sami drank. She went from roughly a daily in-take of 600-700 cc (20-23 oz) down to 400 cc (13 oz). She was very constipated, and we tried all the natural methods to help her, including extra water, prune juice, olive oil, massage, legs exercises, etc. None of them worked. We called the hospital asking for advice, but we got sent away. We had to go to the consultatiebureau (health center), and they didn't have much to tell apart from what we already knew, plus suggesting us to mix the Enfamil with normal formula. We also visited our GP and he didn't prescribe anything either, so we bought off the counter laxative drink for her but as we didn't dare to give the full dosage, so that didn't help right away until we increased the dosage. Only after a week and my "panic" call to the hospital, the pediatrician who prescribed her this formula gave us another medication. However, as we put the medication in her milk bottle, it was hard to give it to her when she refused the bottle. Eventually one day, I just switched her back to the normal formula, where she drank again from.

We went back to our GP again, and this time the GP listened to me better, as I was at my wit end, and just couldn't take much anymore. Sami was waking 3-5 times up each night, simply because she was hungry I believe. Yet, I didn't dare to go feeding her as I was afraid that she would get a habit out of it. We decided then to put her back on Nexium, the medication she was first on when she was 6 weeks old. Just that this time, it was with a lower dosage.

After we started the medication, things started to improve. We also started to put thickener in her formula, and we just thought things finally were settling down, as she even had once a daily in-take of 900 cc (30 oz), which was amazing! We added solid food as well in her menu, and some things she loves and some less. She loves parsnips, pumpkin with sweet potatoes, and bread. She doesn't like peer nor yogurt that much. I find it challenging to come up with "safe" food for her reflux, since the last thing I want to do is giving her some solid food that would make the reflux worse.

Then I did one thing that I regret terribly. I tossed her old nipples (teats) for her bottle into the bin and replaced with new ones but the same size as the old ones were getting old. I never realized until it was too late that the new ones could be too hard while the old ones were so worn but were what she was used to. So the first bottle after I replaced them took about an hour for her to drink from. It was plain horrible, as she started to get frustrated so did I. We adjusted the amount of thickener, but that only made the reflux worse.

Luckily, after having shared my story out there, some moms suggested me to cook the new nipples longer to make them softer, plus making the hole somewhat bigger by using a needle that that had been heated under fire. So I did those, and yes, I cooked those nipples for an hour just to make sure! That did help, just that we couldn't find the right amount of thickener that fits into the equation anymore.

I decided to just buy the formula that has got the thickener in it, which means at least I know the amount is then consistent. Anyway, I started doing so yesterday, and yes she drank slower, but at least she seemed to be happy and finished her bottle mostly. She had again 925cc (32 oz), which broke her record. She also ate parsnips that I freshly made for her.

She still wakes up at night, but at least it's no longer 5 times per night, it's ranging from 0 times to 2-3 times each night. What I've learned is accepting to get up for her each night, then I find myself feeling less frustrated. Also even though all books and sites on sleep training tell you not to go to her immediately at night when they wake up to train them self-smooth back to sleep, I just can't stand myself being all awake waiting for her to go back to sleep which doesn't often happen, as she would often whine even more or cries. And yes, we put her to bed when she is drowsy but still awake, so she CAN fall asleep on her own. So I just walk to her when she cries at night, and put the dummy back into her mouth. She will then 9 times out of 10 go back to sleep. I'm not sure if this is the right thing to do, but it's definitely something I do to keep some sanity in me.

These days, she still fusses over the first and last bottle of the day. My hubby struggles with the first, and I struggle with the last. Probably with the constant lack of sleep, everyday at around 9, I'm just exhausted after having finished feeding her, sterilizing her bottles and so, getting her bag packed for the daycare, etc. Often I just fall asleep on the couch with my hubby lying next to me watching TV. Sami often then wakes up at around 10-ish crying a bit, not sure why she does that, but the dummy works well so far. I hate having to feed her midnight bottle, as I'm half asleep when I've to get up to feed her. Once I finish feeding her, I would most of the time be too awake to go back to sleep.

Anyway, I guess these all will be behind us in a year time, replaced by other issues. I really hope that reflux is something that will make us all stronger, and that the rest of the things would seem easier by putting things in perspective.

Luckily, we do have enjoyable moments. Apart from the feeding issue and sleep deprivation, I do enjoy seeing Sami developing. She is getting a hang of rolling over. She loves chatting, and laughing. So far we don't have the crying "happy hour" with her, while I used to have that with Julian.





Julian has also been helping out as much as he can, though it takes some effort and time for me to get him into the right mood and attitude. It took him some time to get used having to do homework, household chores, going to bed and getting ready for school on time after the summer vacation. This year he starts having homework also from his normal Dutch school, and I think it's good that he is taking those seriously. I also have to get used to having to help him more with his Chinese homework, since in the past, our Chinese nanny used to help him with that, and now we don't have any nanny for him, I've to help him with it.



I also try getting Julian to be more independent by involving him more in helping us out, like helping out in the kitchen. He does now some preparation work for me, or simple cooking, like cooking the rice. Hopefully that will help him in the future.

It takes time for all of us getting used to things that may keep changing. I try also be more relaxed and calm about things though at times that is real hard. Sometimes I do look at friends I know, and see from their Facebook photo album how things change, how their kids grow, then I know soon our struggles will be less, and we will be rewarded by more pleasant enjoyable time with the hard work we are putting in now.

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. 

Making the right choice for our kids....

As a child, I always looked up at my parents, knowing that they were making the right choices for us. Then the older I got, the more I went challenging those choices, asking why they would know they were really making the right choices for us. Now being a mom of two kids, I certainly have come to realization that it's not really about making the right choices, but making the best choices you can at those moments. Sometimes we cannot tell whether they are really right or not, and maybe there is just no definition of whether they are right. What really matters is we have done our best to come up with the best for ourselves and for our kids.



Recently we had to make the decision to go ahead with an oesophagus pH test to see the amount of stomach acid Sami has in her oesophagus, so better medication against reflux can be given accordingly. The thought of having a tube being put through her nostrils down to her oesophagus really worries me how much pain or discomfort our little one would have. Yet, we know by doing this, we can better establish how much she suffers from reflux.

We noticed after having stopped with her medication, she started drinking much better than ever! This gave me such a reassurance that I have not been fighting this battle for nothing, and that it was real bullshit for those medical staff telling me not to pay attention to how much Sami is drinking. Simply Sami was having discomfort or not feeling well after having taken the medication, and therefore she refused to drink. I just wish the medical staff didn't challenge my mother instinct as much as they did.

I've heard during the last few months of them telling me:

• maybe the way I was holding wasn't right, 
• maybe it was the bottle or teats so we bought the whole drugstore home with all sort of teats and bottles,
• maybe it was me who was too stressed and that the baby felt it so she stopped drinking,
• maybe she just doesn't like milk
• maybe she just doesn't need that much
• maybe she has an attitude
• maybe she associates drinking with a bad experience she had been through

We have asked the pediatricians so often whether the medicine's side effects can be bothering her so much that she therefore stops drinking. The answers we have been getting have been:

• We have never had kids having problems with this medicine.
• Nah... that should not be an issue.

If there aren't any side effects, why would they be mentioned on the leaflets of the medicine?! Our little girl isn't capable of telling us what's bothering her, so all we can do as parents is to be her voice as much as we can. During the last months, because of the lack of support I've been getting from the medical team, I have been doubting myself a lot, wondering if I'm really the issue here, making a big deal out of nothing, and that maybe I should accept having a fussy child.

Now looking back, I can proudly stand up and say they were proven wrong and I've been right all along. Ok, I'm no doctor, and I can't treat my child like a doctor can. Yet, I know I've not been overreacting as much as they claim then!

The nights that Sami now drinks well, I really enjoy holding her after her finishing her bottle, all drowsy, leaning her head over my shoulder. I can now find the bond we have stronger. When I've her in my arms, she would have her little arm around me, and I know she knows I'm someone important to her. I love walking to her when she wakes up (ok, not at night when she wakes up at 2 am or 4 am.) and smiles at me. I love seeing her wanting to look at me rather than playing with her toys. These feelings are now getting stronger and stronger, and I can sense somehow things will turn around soon. The light at the end of the tunnel will be there soon. Certainly there will still be sleepless nights, there will still be struggles and so, yet I think this has been quite a big milestone for all of us.



I've also been learning to accept my limits. I think it's something which we should also teach our kids too. Even though I feel guilty for not being there for Sami when they do the oesophagus pH test, as I sent daddy to go instead, I know it's for the best. It won't do Sami any good if she has a mom all scared or emotional over there while daddy may be more calm and can give her the reassurance that it will be fine. I've to tell myself that it's ok to accept this from myself, and that I can do some other things good too. It sounds selfish to say, but it's important to take care of ourselves first before we can be good parents for our kids.