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! 

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.