I’m finding it very difficult to keep up with blogging and/or updates, but today something so monumental, so incredibly special, so close to my heart happened that I have to record it. I never want to forget this day, and I never want to forget God’s faithfulness to us even when we walk through the valley. I know a day will come when I will need to remember what happened on this day in order to get me through whatever horrible thing is happening on that day.
The Roller Coaster
Living in a children’s hospital is like riding a roller coaster. The constant up and down, good news and bad news could drive a person mad, if you let it. Sometimes I think I’m halfway there. Today started out with very bad news. The pediatric surgeons came in at 6:30am and told me they think they found an obstruction in Belle’s small intestine, and that they would likely have to do another surgery. I was crushed. We just got through a week of recovering from three procedures and we were finally ready to move forward. I knew this would mean waiting to schedule surgery, then probably rescheduling it 2 or 3 times. After it finally happened, we would then have to wait another week while she pretty much stayed in bed most of the day healing. It’s always one step forward, three steps back.
I began to pray, but these days, my prayers don’t make it too far past:
Help. Please. Belle. Help us. Please ”
After a few minutes of repeating those chopped up words, I usually just resort to putting praise music on and meditating on the words, which is what I did today. I then contacted some of Belle’s many prayer warriors and asked them to pray because I know their prayers are probably a little more consistent and eloquently communicated then the few, choppy words I can come up with in my current state. (Pretty sure God doesn’t mind though. He knows what I’m trying to get at.)
A few hours later Belle’s Intestinal Care (aka ICare) team came in. They told me the “obstruction” could indeed be that, or it could just be swelling and bruising from the last surgery. Since we are basically bypassing her intestines at the moment, it didn’t really matter. It would need addressed down the road, but our best bet is to let her continue to heal and then do more tests in the future, since she has been through so much already. THEN…they told me the most wonderful news.
Nursing is something that I haven’t really talked about. It’s hard for me to even acknowledge it because it has been a very painful subject for me. From 29 weeks pregnant, I was told, and believed, I would never have the opportunity to nurse my baby girl. It has taken me a long time to come to grips with that, but knowing it wasn’t best for her, I felt that I had finally come to peace with it. I am a huge advocate for nursing and I truly loved nursing my son for 14 months. I told myself I was blessed to have the experience as many women don’t get that opportunity, and to be thankful, even though it hurt to think I could never give that to my girl.
From the beginning, our Icare team told me that there is a chance we can give Belle breastmilk by bottle in very small amounts, so from day one, I pumped……and pumped…..and pumped, not knowing if it would ever matter. But even if I could only ever give her tiny amounts, it was at least something and some way I could provide for her. Eventually the hospital told me they couldn’t store my milk any longer and I’d have to take it home. 5 trips later, our stand up freezer is filled, as well as our chest deep freezer. Recently, I started just dumping milk down the drain because we are out of room to store it. Each bottle dumped down the drain was an emotional experience and a reminder of Belle’s disease, and what would never be. Something told me not to quit though.
I pushed to feed Anabelle milk from the first day we came to Icare. They reluctantly agreed to let me give her 5cc’s by bottle every four hours. It had to be by bottle so they could control the amount. At the time she had an NG tube and they don’t usually give babies, with a condition as severe as hers, and an NG, any milk at all. I was pushing it. I was so excited to be given permission though, and chalked this up as a victory, until I saw her bottle. Do you know how much 5cc’s is? I didn’t.
Belle got 1 teaspoon of milk by bottle every four hours for a few weeks. It was barely enough to wet her tongue but it at least forced her to make the sucking motion a few times. I then pushed to increase it. Reluctantly, they gave me 2 teaspoons. They kind of laughed at my persistence and excitement at such a small amount. The main purpose was to work on her oral skills, sucking, and to keep her from developing an oral aversion. To avoid confusion, let me be clear that Belle is not getting nutrition, or at least not enough to keep her alive, from my milk.
Once Bell had her surgeries, we were able to drain her stomach, so nursing, something I NEVER thought would happen, became a possibility. One of my doctors is currently nursing her son and she got the idea, right about the same time the possibility occurred to me. She actually cried when I asked and said it is something she has been thinking about so much and thought about asking me. I was shocked to hear that only one other Icare mom had ever tried nursing. She explained that it had to be kind of the “perfect storm” to be possible. Mostly, they get children who are a couple months old and have already gone so long without eating that they aren’t interested or have lost their suck. Or, the mother has stopped pumping. Belle being the youngest baby they have ever had, and me still pumping my brains out, was just the perfect storm to give us the chance.
So today, October 18, 2016, after 35 days in the hospital, my Belle got to nurse from her Mama. Baby girl was a champ and latched right on after only a few seconds. I was shocked and fully expected it to be a process that would involve a lactation consultant, probably OT, and lots of trial and error. That wasn’t the case. It was flawlessly beautiful. Who knows if it will ever be that easy again? I don’t even care.
Like so many days living in the hospital, today was a roller coaster of highs and lows. But the high was a gift I will never, ever forget. Praise be to God. <3
Disclaimer: If you find my blogging about breastfeeding disturbing, no worries. I get it. But since it’s MY blog, (not to mention 2016) I’ll write about what I want to 😉