Wednesday, February 19, 2014

Two Weeks in the NICU

Now that Shrimpy is a little over one month old, gaining weight consistently (4000 grams last week!), screaming at her sneezes, grunting at her hiccups, vocalizing and catching our eyes with hers- our stay in the NICU seems so long ago!

It all started in the middle of the night on Sunday the 19th. I was holding her in bed, trying to get her to calm down from crying to feed, when she seemed to have a fit, getting quite upset (it seemed to me), and then falling asleep. Exhausted, I decided to try later and put her in her co-sleeper and slept myself. Surprisingly, she didn't wake up again, and we changed her diaper when we woke up at 8, where she had another fit, then fell into a deep sleep. Broom and I found it odd, but had no idea what was going on, and knew the midwife was going to visit us at 10. While we waited, Shrimpy was too tired to nurse.

When the midwife arrived and I told her about Shrimpy's refusal to nurse (and she had been such a vacuum suction-feeder prior!), she looked concerned and said that she couldn't go that long without eating- and we explained that we couldn't get her to feed. While the midwife was holding her, she had another fit- after which she told us she was going to call the hospital to tell them that we were coming and that she was also writing the admissions desk a letter about her observations- all the while staying quite calm but making clear that we needed to leave immediately.

The 5 minute drive was hell- Broom drove well, though- considering this was her 2nd nerve-wracking drive in a few days, just a week after getting her license. The admissions desk was nice though, getting us into a room really quickly, despite the fact that that nurse was incompetent- failing to realize that we had no clue what was going on, and talking a mile a minute about other things, like weighing Shrimpy daily, taking her temperature and such- and we had no idea whether or not we would be staying! The doctor on call that day was also weird, coming in and picking up Shrimpy without talking to us or introducing herself. Once I realized that she was getting ready to leave the room with her I stopped her with "Excuse me- the nurse said that the doctor would be coming in to examine her?!?". To which she replied "Oh, yes, that's me, I guess I should have introduced myself."

That shift failed to ask us what we saw and why we were there, but did hook her up to sensors measuring her breathing, heart, and oxygen saturation and putting in an IV to rehydrate her. After several requests, I was shown where I could pump, since I wanted to get my milk coming in as soon as possible. Only after we asked did they ask if we were ok giving her formula until my milk came in- of course, giving her anything I could pump first.

During the first shift, she had a few episodes, during which we rang the incompetent nurse- but no one seemed to believe us! Unfortunately, at night, Shrimpy had an episode every hour- and I rang the nurses every time, even though doubt was still there- but eventually, the nurses saw an episode and decided to wake the weird doctor, and explained that it was seizures. At that point, the doctor finally decided to check for head trauma, which came back clear.

In the morning, (Shrimpy had been seizing all night on a regular basis), she had another seizure right when the doctor's had started their rounds- including the head doctors. Luckily, all 7 of them were able to see her have a seizure, and they ordered that she be given meds via IV to stop them. The meds made her even more lethargic, but gave her peace.

In the coming days, a multitude of tests were run to see what could be causing all of this. As a precaution, she received antibiotics since some of the lab work took a while to get back. Each and every test came back negative, and we tried to get as much skin-to-skin time as possible, learning to navigate all of the wires and her incubator like experts. With time, the medical team (who was excellent, with the exception of the team working when we were admitted) came to the conclusion (which could only be made by the process of elimination) that she was having benign infant seizures. My mom did research for me while we were there, and discovered that there are several women in our family that have had the same thing.

They switched Shrimpy to a less harsh drug, even though I still had to wake her to feed- mostly from the bottle, as she didn't have enough energy to feed from the breast. Luckily, my milk came in on Tuesday the 21st, and I had her exclusively on breast milk by Thursday. In that week, they even put us in a normal ward for an evening- but Shrimpy had mild seizures all night that night, and a few where she couldn't breathe. Her longest seizure yet, which happened after a nice bath and feeding from the breast, was one where she turned blue around the mouth, causing me to start screaming like a banshee (something along the lines of "get my baby some fucking oxygen!!!"). Broom took her from me (we always tried to hold or at least touch her during her seizures as a comfort measure) and screamed back at me to get me to calm down.

At that point, we were promptly re-admitted to the NICU, where they spent the next few days trying to get her meds right. Luckily, after being re-admitted to the NICU, she only had 2 more seizures where her breathing was an issue. Two meds, administered twice a day turned out to be the right combination for her. Her last seizure was the 26th, and within a week of them keeping her meds steady, she developed a regular wake/sleep pattern, although we still keep an eye on her.

After being home a week, the midwife and I worked on getting me off of the medical grade breast pump (I had too much milk) and purely using Shrimpy's cues- and it worked! In about a month, she has another EEG to see if her brain is still seizing. If not, then we will wean her off of her medication. A week after that, she has an echo cardiogram to see if the normal, newborn "heart hole" that hadn't closed for her yet (the midwife said that she has seen this with babies who have been under stress) is now closed.

Her two weeks in the NICU were some of the hardest of my life- and I don't think I have ever cried that much- ever. Watching her small body be in so much pain (after some of the seizures, she would whimper- talk about breaking your heart!) and not be able to do anything about it was extremely difficult. I would have gladly switched places with her ten times over- but we couldn't. She is such a strong girl! And Broom and I were thrown into the deep end of the parenting pool- and realized, that if we could do this, we were gonna be fine. Our relationship seems to have grown even deeper through that family trauma, and we were able to alternate who was the strong one, while keeping our spirits up when we could. We kept an eye on one another, and after I had spent 4 nights in the hospital with Shrimpy, Broom convinced me that we needed to alternate so that I didn't lose my shit. It was a good call.

Despite everything, I am grateful for the following: that, if our little girl has to have a sickness, that it is one that doesn't leave any damage (and if it does turn out to be epilepsy, that is manageable, too!), for a health care system that is excellent (all of her care is at no cost to us), for a relationship as strong as ours, and for family and friends the world over! We asked for positive thoughts and prayers and wow- were they given. I really, truly believe that they helped, and am so glad that we all got showered with that positivity. Our Shrimpy has quite the fan club- as she should, since she is incredibly adorable!

Once this is even more behind us, I will be even more at ease- but it is pretty neat how my brain has been able to regularly forget and not worry all the time- even though we both keep a close eye on her.

All in all, we are a very lucky family.

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