Friday, January 17, 2014

And then..... there was Olivia!

I have waited until now to write this post, even though it has been in my mind for many months, because I was still processing the situation... And I still am, but I am ready to share.  I also wanted to write it down before I forget how things happened!

Ever since her unusual entry into the world, Olivia has been just a little bit different from our other children. Just when you think you have a little bit of experience in bringing up little ones, God sends a curve ball. Haha.
As you know, I was hospitilized when Olivia was 2 days old, and upon my release two days later, we had a really rough time with breastfeeding. I assumed it was merely because she had gotten used to the ease of the bottle so early on -- and that was surely part of it.  I was determined to make breastfeeding work though, so we kept struggling on. It seemed that she was a "lazy" baby when it came to nursing - like she was just waiting around for the milk to fall into her mouth or something! And then she would get frustrated when it wouldn't. And I would get frustrated too! We had these loooong frustrating middle-of-the-night sessions that would most often end with both of us frustrated. Why was this so hard?? "She wants the milk, I have the milk, so just NURSE, baby", I would think.

When she was about a month old, I put her on our home baby scales. I had not been as religious about weighing her as I had been with the other babies - there was just so much going on and she seemed to be doing okay in spite of our nursing struggles. I was shocked when I realized how little she had gained! All of my babies were BIG gainers in the early months. I could practically see the scale go up daily, if I weighed them that often! So, I made an immediate call to the midwife, who assured me that all babies are different, and that I should assess her overall well-being, response after nursing, number of wet diapers, etc and not merely a number on the scale. Which is all true.  I was put to ease, and reckoned that Olivia might be taking after the Japanese (smaller) side of the family more than my other babies had?

She stayed little and I stayed just slightly uneasy through the next few months. She *seemed* to be nursing a little better, but only for a few minutes at a time. I seemed to have plenty of milk, too much it seemed, as I felt full all the time and developed mastitis numerous times. So why was she staying so tiny and growing so slowly? I chalked it up to different genetics. Developmentally she seemed to be fine, alert and becoming stronger - doing all the things babies should do.

At around four months old, I took her to our trusted family doctor, and expressed all of my concerns to him. He examined her and found her to be healthy and assured me that there was no reason to be worried. Different babies are just different.

At five months old, we returned to Brazil, and life became a whirlwind (again), as we attempted to make the move all over again and settle into our house, unpack, figure out life, establish some semblance of a new normal. It was taxing. And our baby scale did not make the move with us.

Olivia seemed to be doing okay, going with the flow of the family, not giving any real cause for alarm.  So it was about two months before I decided we should find a way to weigh her.  Fabio recalled the hanging luggage scale we had, and we devised a way to hang Olivia from it! It was pretty comical, but it did the trick.  Except now she did give me cause for alarm! She had barely gained anything in the past two months! Really?!?

Now I started analyzing everything to death. Suddenly I realized that, particularly in the evenings, she was not having a lot of wet diapers.  Maybe the problem was my milk supply? It was true that lately she had started acting "angry" at the breast when the milk would not let down fast enough... it must be that my supply was low for some reason!!

I began to research how to increase supply, and did everything I could - increase my calorie intake, eat oatmeal every day, herbal teas, everything I read, I tried.  And it didn't seem to make a lick of difference.

I also tried to start Olivia on some solid foods - which she was adamantly against. This was her response to food:
I was pretty sure not one morsel was reaching her belly. She spit everything out! What could I do?

I finally began to take domperidone, a drug that has been used successfully in Canada for milk supply issues for 20+ years.  While it seems to be quite safe, I am *not* one to volunteer for taking any kind of medication, so this was a huge deal for me. But I was pretty desperate to do whatever I could to help my baby.

I should add here that she had become a terrible sleeper, in spite of my best efforts at training. What had worked so well with the other children just did not work with her.  It was incredibly exhausting, and I did not understand it at the time, but now I know that she was genuinely hungry because she just was not getting the nourishment she needed. This was around November of 2012 when Olivia was seven months old.

In December we traveled to my parents-in-law's and I came down with yet another case of mastitis. I couldn't believe it! Again?!? Desperation led me to recall in the recesses of my mind the information of a lactation consultant in the States that a friend had told me about years earlier.  I looked her up and called her over skype.

This was not a skype call; she could not see Olivia. I just described the situation and I am still impressed that she hit the nail on the head without even seeing her! She suggested that Olivia may have a lip tie or a tongue tie that may be the cause of all our difficulties. After hanging up, I started digging into the research. And I discovered that yes, indeed, Olivia has both. A lip tie and a posterior tongue tie.
A lip tie looks like this: 
http://cdn.mothering.com/3/3d/3ddd7a10_liptieNerix.jpg
And a posterior tongue tie looks like this:
http://santabarbaralactation.com/sites/santabarbaralactation.com/files/styles/medium/public/field/image/tongue%20tie.JPG?itok=RH9qJlCX
You can read more about this issue here and here and here

I was actually really relieved to find this out - maybe now we could get to the bottom of our issues and get them FIXED!!!  I immediately began to look for someone to treat Olivia's mouth, surgically.

The very next day was our first appointment! I had chosen a pediatrician with 40 years of experience who was also a lactation consultant and had started the milk bank of the city -- I was sure she would be sympathetic.  But her response? Yes, Olivia has a lip and tongue tie that is affecting her ability to breastfeed, but at nine months old, you shouldn't operate. Just feed her more. She needs 200grams of filet mignon per day." What?!?!   Feeding her a steak every day would magically make up for what she wasn't getting from the breast?? And *how* was I supposed to get her to eat steak when she spit out everything I (forcefully) put in her mouth??

I was not done searching. My next stop was at an oral surgeon. She also confirmed Olivia's problem, but she wouldn't operate either. You see, in the States, they do this procedure with a laser, but here it was going to have to be under general anesthetic, and therefore would require hospitalization and the whole nine yards. She said she would not recommend that until Olivia was seven years old.

At this point, I considered making the trip to the States for the procedure, just Olivia and I, just for a few days, but alas, it was not possible.  But my search was still not over.

A well-respected university is just one town over from here, and there some of the most respected dentists and surgeons teach and practice.  That was my next stop.  While they were all very nice, they also shared the same opinion as the previous two stops.

The bottom line is that successful breastfeeding is just not a sufficient reason for most doctors to want to do a procedure like this. 

I was stuck! Was there nothing I could do? It was a very serious call to trust in the Lord for the health of my child, in spite of the overwhelming feeling of helplessness I felt. But isn't that where the Lord specializes in working? I prayed that in my weakness and helplessness, that He would be strong. That in Olivia's weakness, He would make her strong.  And sometimes I just gave in to worry. :(  Worry that without the right nutrition, she would not develop mentally as she should, especially.  Of course, I kept trying to feed her too, but she did not seem to be warming up to that idea either! The domperidone had helped to increase my supply, but with her difficulty in suckling, she would basically only get the foremilk, and very little of the richer, creamier hindmilk. And on top of that, she wouldn't eat!  You know those curve graphics to see what percentile your baby's in? Well, she fell off the chart. :(   In December I had started a nursing schedule of every hour on the hour during the day and every three hours at night. Must I mention that this was exhausting?

My comfort was in seeing her seemingly behaving like a normal child. She was obviously very bright, alert, curious and interested in the world around her. She was exploring and making discoveries and making life happen. Her physical milestones were just a touch later than my other children's had been, but still not far off. She began to crawl at 9 months, and walk at 15 months old.

At about 18 months, I decided to get some blood work done to make sure she was not anemic or having any other issues that may be impeding her appetite, as she was still eating virtually nothing.  And on two occasions when she did eat more than usual (which thrilled me!), she vomited it all back up! This made me wonder if she had some kind of stomach issue?  The doctor ordered extensive testing, checking every possible issue, and thankfully, nothing glaring came back. She was a little low on a few things, but the doctor said we would just keep an eye on them, and that it was not cause for great concern. She likely had vomited the larger quantity of food just because her stomach was still so tiny and not used to greater volumes.

And sometime shortly after that, she actually began to eat! And when she began to eat, she also began to sleep through the night!  It was a wonderful breakthrough! This was around 18-19 months old.
Eating:
Now she is nearly 22 months old, and she is still tiny, but she is back on the chart, just barely! She eats now -- still not in impressive quantities by most standards, but compared to the "nothing" she used to eat, it is substantial.  She has become a very good sleeper at night which I thought might never happen, and she continues to be bright, intelligent, curious, and energetic. She is almost 22 months old now, and down to nursing twice a day.

There are other reasons why I will still seek to have her mouth treated when possible, which you can read about in the links I posted above. I won't go into more detail here.

I did discover that it is a genetic condition, that trickled down from Daddy, and Israel has a pretty marked tongue tie too! Fortunately, it did not affect his ability to breastfeed, but it is affecting him in other ways now, so we have his operation scheduled for next Wednesday. :) (Incidentally, when I took Israel in for the consultation, the doctor looked into Olivia's mouth as well and said he couldn't believe she had been able to nurse! But, he won't operate on her right now either....)

I will wrap this looong post up in thanksgiving to the Lord who sustains us in all situations, and has sustained Olivia in spite of some difficulties. I thank Him for the difficulties too, which are always for our good and for His glory, and I also thank Him that it was such a minor issue compared to so many others I can think of that are far, far worse.  Most of all, I thank Him for Olivia's life and the blessing she is to our family!










3 comments:

Jason Alexander said...

<3 I am SO glad you have some answers now for what was happening & that Olivia is improving!! (I have a little idea of the stress of getting an infant to nurse from the trouble I had with Zeal & the exhaustion & frustration that comes with that, though not to the extent you have dealt with!) Praising God for sleep-filled nights & full bellies! :) Love you all!!

Jill said...

So thrilled for you....sleep is a wonderful thing for everyone! Was wondering if she would have an easier time of it with a bottle (of breast milk, of course) or now, a sippy cup!
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Unknown said...

Elizabteh, fiquei com o coração apertado em ver tantas tribulaçoes que vc passou com Olivia, mas superou pelo seu conhecimento, sua dedicação e a fé que tem no Deus Todo Poderoso, que dá forças atér onde podemos aguentar, estou feliz por ela estar bem, mesmo com esta questão bucal que rá resolvida, e como vc mesmo disse existem coisas piores.. continue sua jornada de mãe super zelosa e que os resultados sejam plenos.um grande beijo a essa lutadora Olivia e aos papais e aos irmãozinhos, que a Paz de Deus estejam com todos.