I thought battling infertility was hard, but walking around with your heart outside your body and fighting to make people hear you when you say something is wrong why won’t you help him is so much harder.
In the hospital I noticed little man had a hard time latching, I asked for help from the IBLC but I really wanted them to diagnose what I suspected so we could get it fixed ASAP. Unfortunately the IBLC was out of town, and no one else helped us in the hospital so we were sent home with no official diagnosis just my suspicion until Friday morning when we had our first Peds appt.
He weighed and measured great. The Dr confirmed what I knew to be true that he had a strong lip tie. We had figured out what worked for us during the week to keep little man happy and I was pumping so he could get breast milk even though he can’t latch. When she heard I was pumping she wanted to know number of ounces he was taking rather than asking about his output like a normal breastfeed baby. Which might I add he was hitting all the markers for wet diapers, dirty diapers, happy baby and sleeping but she kept insisting that I can’t produce enough to feed him and I need to supplement with formula through the weekend because he should be getting 1-2oz every 2-3hrs. My 3day old🙄 (she kept saying four, he was born Monday night this appt was Friday morning) with the large marble sized belly. She even mentioned that he’d be labeled failure to thrive at 12% weight loss, so I asked what his was and she calculated it at 7.5% but she’d be “rounding that up to 8%.” It did not matter that 12 is a long ways from 8 especially when it comes to weight loss percentage. She wouldn’t hear it and we decided it was easier to just take the formula and not use it than continue to talk to someone who clearly wasn’t listening to us.
We left the Dr and went to visit an LC at the hospital, we had a conversation about everything that had happened, what I’d been told and how every instinct in my body said they were wrong based on what I’ve learned through research and general baby prep. The LC said that clearly I had done my research and knew what I was doing and flat out asked me “why are you here honey?” I told her I could read everything but when it came to practice it felt like I was doing something wrong. She worked with us trying latches and holds, after 45 Minutes I had one frustrated red baby, a defeated apologetic LC and the obvious flashing neon sign that nothing was working, his little mouth just couldn’t do it. As frustrating as it was, it was good to know I wasn’t crazy and that we were in fact having a real issue that there was a solution for, correcting his tie.
So we pumped and pumped all weekend, I held my guy mannequin style above the pump bottles or frogged between them. We cluster fed, I was barely able to pump ahead of his appetite; not much sleep was had and I think I will forever despise the sound of this pump (especially as I sit here typing this still attached to it).
Monday morning (7 days old) rolls around and I may or may not have let my snark show in his attire and put him in a skeleton onesie since you know…I was starving my kid.
Petty Level: Expert.
We did his weigh in, the nurse put him on the scale and I laughed when I saw he was up to 8lb 1oz, just 2 oz shy of his birth weight at just one week. We went to our room and waited for the Dr, she said her goal was 1oz a day, a goal she did not share with us Friday. But she also didn’t introduce herself when she walked into the room so I shouldn’t be surprised. 🙄
She said her pleasantries when she walked into the exam room followed by “Let’s see how we did and check what his weight was” when she saw he put on 9oz she asked if I used the formula, I told her not at all it was still sealed, she could have it back. Suddenly she was singing my praises and said we must have worked so hard this weekend to make sure he put on weight. We talked about his stump falling off and that his belly button had already closed, about his reflexes being great, him being nice and alert and his head strength.
At the end of the appointment she said he looked great and that she’d see us at two weeks old, if he still looked as good we wouldn’t have to come back until 2 months.
Victory was ours! 💪🏼
and in case you’re wondering, yes I left her canister of formula on the counter when we left. 😂
Monday afternoon I called the ENT the Pediatrician had supposedly sent a referral to Friday, they never got a referral. So I scheduled the appt myself for correction of his lip tie myself for first thing Halloween morning (8days old) at the appointment they were very sympathetic but ultimately told me because he’s so young he would need admitted to the hospital and put under anesthesia to correct his lip tie, that the pediatrician wouldn’t take responsibility for him at the hospital because they didn’t do the procedure, that his office wouldn’t take responsibility for him because they’re an ENT and don’t do babies. That they usually correct it between baby teeth and adult teeth, so we could get it corrected if it was still an issue when he was 6!!!
So basically I paid $100 to be told “oh yes there’s a problem, sorry he can’t eat, we can’t help.”
And onto the next…none of that sounded right, so I started looking for a Pediatric ENT surely they would do babies. Lip ties and tongue ties are not that rare, they’re corrected all the time someone should be able to help us. I called our insurance to make sure that we didn’t need prior authorization to see the specialist (we didn’t) and to make sure we could cross state lines since we’re so close to the state line and the closest city is across it (we could) the first two pieces of good news we’d had.
I started looking up covered physicians within 100miles. I found one who was in network and not too far. It was end of day so I called and left them a message with the details of what we had experienced and what we needed.
They called me back the next morning, I triple checked that they could do the correction in office with topical anesthesia on a less than 2 wk old. They said yes. I told them what all the other Drs had told me, they agreed that the local ENT didn’t make sense that it is the same procedure whether or not he’s awake shouldn’t matter. They said they’d do it in house unless the child is older and the tie is really thick, then he’d take them over to the ER to do it.
We arrive at the office in GA to get little man’s tie corrected, they are only at this office on certain days of the week so it’s pretty crowded. Add in that the Dr is the only Pediatric ENT in the practice and I start counting the kids in front of us. Four in the waiting room I can see, who knows how many in the back.
We wait for two hours to be called back to an exam room, as the Dr starts talking it begins to sound like yet again we’ve wasted time and someone else is telling us they can’t help. But then he stands up and starts preparing the numbing agent as he explains again what will happen. That he’ll numb his lip with these soaked cotton pads, use surgical scissors to snip it and then I’ll need to apply pressure with gauze for several minutes and baby “will cry some.” What he didn’t mention was that my baby would be full body rigid screaming for several minutes, that despite the numbing agent he clearly felt something and that it would break my heart to see him like that. Once the bleeding stopped we were told we could go.
Cody and I stopped on the way home to grab food, and I’m so glad we did otherwise the following would have happened in the middle of 95N. I had DK in the ring sling when I turned to get paper towels after washing my hands, in the mirror I see he has blood coming from his mouth. I grab paper towels and start blotting away what I can, and head out to Cody. The look on my face let’s him know something is wrong from across the room. We quickly head out to the car where we try to get the bleeding to stop, I was able to get a large clot out of his mouth with a burp cloth and that seemed to help him tons (and terrify Mommy and Daddy) We sit in the back seat of the car with gauze from the first aid kit applied to his gum for what seemed like forever before it finally slowed down. We rinsed his mouth with breast milk to clear out the old and be able to see any new. Luckily it had stopped, we strap him in and head home with a worried Mama staring at him the entire way and Daddy asking “how’s my boy?” every few minutes.
Oh and in case you were wondering what DK was doing this whole time, he was passed out cold; couldn’t be bothered with some blood and the panic he caused.🙈
After such a traumatic day we haven’t been able to latch yet, but we’re working on it. We’re both learning and it’s going to take some grace on both our parts to figure this out. At least that’s what I’m telling myself over and over as we struggle through this.
In the end I know it’ll be worth it, but right now it hurts my heart. It was and is beyond difficult to see my guy in pain even though I know this is the best thing for him and the first step to getting us on the right track to eating like any other baby, the first step to ditching syringe feedings and counting seconds until he swallows the little bit in his mouth. I know this is for the best, but for now my guy is curled up on my chest as we both recover from today ready for the promise of a better tomorrow. 💙
love & baby dust,