Tuesday, October 27, 2015

Try not to think about what might have been.

Whenever I stop and think about where we are at with our family, I feel immeasurably blessed. But also immeasurably overwhelmed, anxious and all kinds of emotions jumbled up into once. Conyer joined us on September 6th. And bless his heart; his little existence thus far hasn't been super pleasant and it's been that way around the clock. In fact, quite the opposite.

As soon as he was born, and had trouble latching onto the breast, I knew something was up. I pumped and sent the little tad bit of milk to the nursery with Conyer. The nursery wrote in his record "disorganized latch". The nurse told me it took them a lot of work, but they finally got it into him. He was not a super happy baby at this point. I was so ready for the lactation consultant to visit our room the next morning and she confirmed what I already knew: he was having trouble nursing for physical reasons.

His lower jaw was pulled in and on the short side (thus not allowing his gums to align to form a good suck) and it was possible he was a bit tongue tied, though it wasn't an obvious or severe tongue tie. Together, though, it seemed the trouble I thought he was having was a reality.

And I was sad.

 I had this vision of nursing my what would likely be my last baby, singing my calm down repertoire of songs, having my husband pass him over after middle of the night diaper changes for my special mommy-baby time and nursing him back to sleep. Rocking and nursing. Snuggling that milk drunk little guy.


All of that was just plain wrong. Silly me for even thinking ahead with these visions.

In reality, we had about a week of screaming. I mean HOURS of screaming. Around the clock. And hours of nursing. Screaming and nursing. My milk came in, the screaming continued. A few visits to the pediatrician confirmed what I suspected (again); he wasn't gaining weight. He wasn't thriving. Everyone in the office felt for me. I came in crying, in pajamas and I'd weigh him and feel defeated. 

I'd post updates to Facebook, asking for prayers and support. Many told me that I may just need to supplement with formula/bottle and that'd be ok. I know that would be ok! I would have LOVED for that to work. But my sweet baby couldn't figure out a bottle nipple either. We all just kind of passed around the screaming baby, each trying to get food in him in some way or another.

After a visit from a lactation consultant, we had this really detailed and long process way of feeding him. It involved us both being topless, walking, holding him vertical, applying weight of the breast on his bottom (short) jaw, etc. etc. He seemed pretty content for a few days, but the pressure I felt personally was so immense. He couldn't handle a bottle, and every feeding with me was either a struggle of him trying to latch or me rejoicing that the walking/vertical/puzzle seemed to pay off that time. It was all on me, and it didn't seem to be going very well. He maintained his weight, but wasn't growing. And I was beyond exhausted. I didn't want it all to be on my shoulders. I felt trapped and scared and sad for him.

At the pediatrician again, I cried again. It was a weekend. The nurse came in and sat with me. She grabbed some pricey allergen-free formula (Oh, and I should note at this point I'm already taken off dairy because his stool showed signs of dairy intolerance at this day three check up.) and a bottle and tried to feed him. It wasn't working. I tried nursing. He gained 2 oz. That made me feel better. She tried the bottle again. I told her some things the lactation consultant mentioned for bottle tips, and I casually mentioned that a friend had a preemie and we had to hold her jaw up for her while eating. Bingo. We got him to eat 1.5 oz of formula. I cried. Happy cried.

Eight varieties of bottles from Babies R Us later, and we are settled into using Dr. Browns at home and giving him pumped milk. It was the only way I could guarantee that he was getting a good volume of food for the time being. I was sad at not nursing, but at that point, I wanted more than anything to see my baby thrive. To see him not cry in hunger. To see him eat without struggling too badly.

We got into a new normal routine. I pumped. Rusty bottle fed overnight. Joni during the day. I didn't really want to bottle feed him at first because I was sad. I just focused on the pump and how I could see that he was getting what he needed. It paid off. He gained weight at the next check up. The office cheered! Hooray!

We had a good week or so of a more 'normal' baby. He slept and ate and slept and ate and fussed in the evenings. I took him to the chiropractor for her to see what she could do maybe with his jaw. She began some stretches. Everyone assured me that his jaw would grow, it would just take time. He was still very disorganized on the bottle, but we worked through it with each feeding and I just decided to see how the next few weeks went.

They went downhill.

He became a screaming miserable baby again. Hoarse. Lots of mucus swallowing and choking noises. Hiccups all day long. All day long. Waking himself up from sleep, screaming. His body stayed in frown mode. His face looked grumpy and tense. His whole body was tense, actually. It was impossible to get any real sleep out of him.

I again knew something was wrong. And it was - reflux or GERD.

Back at the doctor, I was crying again. I told her everything and that I knew it was reflux. This actually went over well with her because she knows us after three kids, and knows this isn't our first rodeo. She said if Rusty, my sister and me couldn't get him soothed then it was definitely something else going on with him. Asher was a hot mess of a colicky baby, but we could get him soothed. Conyer - we could not. It was awful. Just plain awful.

We started Zantac. First day seemed to be somewhat improved. Second and third were rough again. All over again. Rough. I called and asked for something stronger. We were prescribed Prilosec, and a pretty high dose at that. It's tricky to time it right though. At least an hour after eating, and at least thirty minutes before the next feeding. At around the same time each day. Figure that one out, yeah. Day one, improvement. slightly maybe. Day two, more improvement, maybe? Day three, his voice sounded less hoarse. There was less thick mucus swallowing happening. Less screaming. His face relaxed. His body relaxed. He slept. He wasn't rigid. He was a sweet, sleeping, for-the-most-part calm baby. I felt such a weight lifted. One issue solved for now. And so thankful for meds for infants and for a doctor that listened to me right away.

Here we are at 7 weeks old. He's sleeping well at night for the most part. He still has his screaming fits, but what 6-8 week old doesn't, right? He smiles and even coos from time to time. He still spits up, but it doesn't seem to bother him. We have hiccups once every day or so. His belly seems to be adjusting to the meds (after a few weeks of trouble there, too). We must hold him upright for 30 minutes after each feeding. Carseat always equals puke. No bouncing or jiggling allowed. Lots of burping. We observe what positions or activities seem to work and what seem to cause reflux right away, or later in the day. He's high maintenance. Seriously. And he can't help it.

I've tried nursing here or there, and it works pretty well. But I think that's just because he's my third baby and I thankfully have lots of milk flowage. He won't stay latched and still struggles. Pretty much only Rusty, Joni or me can give the bottle with any kind of success. And if he gets too worked up, it's a real battle even for us. He gets so frustrated and can't seem to figure out how to latch and suck and swallow. It's pitiful.

We went to see a feeding specialist this week, and an ENT. We are continuing the chiropractor visits. We now think that while he has a very minor tongue tie, his frenulum (is that the right word?) is very tight. His tongue only just recently has come out past his gum line. And his gum lines are still very mismatched from the jaw. Combine the jaw and the reflux and the tight, tied down tongue and you have struggles. Lots of them. Could his jaw grow? Of course. And we hope it does. It's much looser now, and he's not holding it tight in pain (as he was when reflux was at its worst). Could his tongue sort itself out over time. Of course. But, if we want to give him the best chance at not struggling with every feeding, and give his jaw the best chance at moving forward and growing, and give his tongue the best chance at sucking efficiently, then we need to have his frenulum clipped. I cringe just typing that. But we need to try. We need to try whatever we can. So, we will on November 9 (if I can't beg my way in before then).

So, I try not to think about what might have been. I miss nursing every day. My heart physically hurts every time I see him trying to drink from a bottle and struggling. I am so tired from reading and observing and reading and observing. I don't want to miss a thing, and I want to do right by this kid. But I'm tired. I relish in the milk drunk baby snuggles during our 30 minute upright times. But I am so over this pump. I try not to harp on the fact that we probably won't be having another baby, and this chaotic, screaming, crying (me), sad mess of an experience is going to be our last. So really, this is our reality. But everything happens for a reason. The Lord sees to that. I know that.

I just try not to think about what might have been, that's all.

Monday, July 7, 2014

You know when you're so behind in blogging you don't know how to catch up? Yeah that.

Since I last posted, a lot has happened. To summarize, in brief:

  • Elias got up to 75 mg of peanut flour in OIT!
  • Kids got sick. Elias had to downdose his peanut flour from 75 mg to 25 mg. Bad, bad, bad croup episode for E.
  • We packed up and spent the week at Disney. 
  • Came back and brought some high fever virus with us. Elias had to downdose again to 12 mg. (One more sickness and we would have been back at the beginning.) Asher had a fever at one point of 104.5 with Motrin and Tylenol in his system. It was a wretched, wretched virus and I about had multiple panic attacks.
  • Tried to catch up on work. Got some cool new opportunities.
  • Packed up to go to the beach for the Fourth of July. Rented a boat and the boys swam in the ocean like little fishes.
  • Blogged about OIT on WRAL's Go Ask Mom. (That's where my writing energy has gone lately.) 
Now, since I feel like accomplished something by posted a fast recap, I will get on board with some legitimate updates. Stay tuned (if you're patient enough). 

Happy Monday!

Friday, April 4, 2014

OIT: halfway through week 2

Well, folks. We're halfway through our second week of OIT for my sweet, vibrant Elias. And, you know, it's been pretty uneventful. Which is AMAZING!

He's been happy choosing between 'o-gurt' or applesauce each morning. Yogurt is the current fave, and has the added bonus of great stuff for his belly. I give him the dose each morning after breakfast, and he is under the watchful eye of his Nini during the two-hour watching period. Asher has picked up that there is medicine each morning, and he doesn't love that this means there is no outside morning play time. But, they are both little champs about it!

How am I feeling? Honestly, I walked away from that second day in Dr. Nash's office and felt lighter. I told my mom that while we are only at a tiny, tiny, tiny, tiny dose, I feel like Elias is on the way to protection. We aren't just walking around on eggshells and trying to avoid everything. We are doing something about it. We are helping him. We are able to tackle this allergy, not just live in fear. And that is so amazing. I'm so very thankful.

And something else that is certainly notable is my support system from other OIT moms. Holy crap those women are amazing. I'm not even sure how I landed in the private OIT groups on Facebook to begin with. But whatever that route was, I'm eternally thankful. I'm in close contact with a handful of these strong women, some even also see Dr. Nash. Others are much further ahead of us on this journey are so wise and reassuring. And they get it. They know exactly how I'm feeling. They don't have to try to understand, they do understand. And that bond and that support and those conversations and advice and stories and laughs are definitely a gift from God. I almost feel like I have a new group of close friends that I've never even met, but they 'get me' in ways that is so impactful in my life. Thank you to each of you. You know who you are.

Two really important things that I want to share with those in our lives. Consider this my Elias Service Announcement.
  1. It's really important that we keep Elias as healthy as possible. If he gets sick, we have to skip doses and then down-dose following that. This early in the game, that means we'd have to go back to even lower than our start dose. Not to mention, if fighting an illness, his immune system will be compromised and could lead to a reaction. Which, would suck. I know germs are everywhere, and Asher will probably bring home something gross from preschool next week. But, in general, if you aren't feeling well -- avoid us. Please and thank you.
  2. It's even more important that we continue to remain nut free and be extra diligent to protect Elias. In fact, we got his blood work back last week during our OIT appointment. His level went from a 9.3 (considered high) to a 74. (whoa). This was in a year's time. Dr. Nash said he has not seen a number go up that much in that short of a time period before. This means we have further to go to get the number down to 0, aka no longer reactive.

    I think the fact that we're in OIT can be a little confusing to those who aren't familiar with it. Yes, we now have tiny crumbs of peanut flour in our house and yes (praise God!) he's tolerating them well. But he is still very allergic, life-threateningly allergic. Please, if you are blessed enough to have this amazing boy in your life, continue to be diligent in helping us protect him. For the next two years or so, we are still nut free and will need to operate the same as we always have as far as protecting him.
Ok. Elias Service Announcement ended. :)

So, what's next? We go to Dr. Nash next week for an updose to 12 mg. I just have this really settled and calming feeling that it's going to go well, too. For now, the anxiety of an updose hasn't even begun to set it. Would be great if it didn't!

Thanks for following along on our journey and keeping our sweet boy in your prayers.
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