Tag Archive | nicu graduate

Support

I’ve been looking for a mom’s group since we got out of the NICU. I mentioned a couple weeks ago that I had gone to one, and it was really nice to get out of the house. In doing this research, I found that the only hospital groups I can find meet during the day during the week. What about working moms? The others I have found are located indoors and mention bringing your baby with you, which preemie parents can’t really do. If I wanted to go back to that group I attended a couple weeks ago, I have to find someone to watch Little Miss Minion while I go.

I’ve contacted the leader of the NICU parent group from our hospital to ask if there is a graduate group that I’m not finding, but I think I might have to start my own. I can’t be the only preemie parent in town who is desperate for a support venue.

This presents some logistical issues. The most pressing is a location. Somewhere outdoors would be ideal, allowing plenty of ventilation and cutting the risk of contagion. Somewhere with seating, perhaps a pavilion, would be great. We would need year round restrooms, especially for little kids. If applicable, we would need the area to be wheelchair accessible. And then what happens in the winter?

I thought about a home group meeting, but that brings up the question of contagion again. Having several people plus kids in a house would be a small version of daycare, and is unacceptable in terms of risk for passing illness.

I think having a Preemie/NICU support group is a very important thing for those of us who live it every day. Normal groups just don’t work for us. Aside from the physical inability to bring our babies with us, the information and experiences are so vastly different from our own that it becomes more harmful than helpful. Listening to people complain that their child was weighed immediately following their full term birth and there was a two minute wait before they were able to hold the baby just grates on my nerves. I personally had to wait an entire day. Mr Minion waited until the next day because she wasn’t strong enough to be out of her isolette and moved around that much. Other people have to wait days, weeks, sometimes months. We need a group who understands the journey. And no matter what people say, nobody really gets the NICU experience unless they have been there.

Little Miss Big Eyes

We had our first real smiles two weeks ago!  This is usually not seen until 8 weeks of age so seeing smiles at 4 weeks is very reassuring and impressive. She also rolled herself over twice last week, so no more arm swaddling at night.

We also had our first official outing this past weekend! Two outings, technically. The first one was to a local park, and the second was to another garden type thing. The first one was a test run to see how things would work. We hadn’t used our stroller yet. We put her carseat in the stroller, pulled up the sun shade on the carseat, and then pulled the shade on the stroller up over that. She was completely contained and protected from curious, germ covered fingers. We repeated this system on the second day, with the addition of one detail. Getting into the second garden required passage through a building, so I took the carseat and LMM out of the stroller and made a run for it through the building while Mr Minion took the stroller in the elevator. I felt like I was going in for a shot on goal in hockey, ready to hip check anyone who got too close.

Once we got through that, we walked around outside for a couple of hours. It was so nice to be out of the house. Until May and the end of RSV season, we are limited to uncrowded outdoor areas, free of smoking. It will be worth it, to keep her healthy and out of the hospital.

NICU Mom

Something must happen in the NICU that changes people. Maybe it’s the constant alarms and beeping. Maybe it’s the oddly soothing bubbling of a high humidity CPAP machine. Maybe it’s the sight of a tiny human sleeping peacefully amid more wires and tubes than you can count.

When Little Miss Minion cries, I am oddly torn. Part of me is unhappy because there is a problem that is making her upset. But another part of me, the NICU Mom, is happy. Her heart is beating, her brain is working, telling her there’s a problem, her lungs are at full capacity, and her arms and legs flail angrily, able to punch the air with impressive force. The NICU Mom knows that things could have been much different with one week less gestation, with only one round of steroid shots for lung development, or even worse if no one had noticed anything and just continued blindly on for 3 more months.

NICU moms don’t take anything for granted. First real smiles, first laughs, first rolling over–these things have happened to us in the last couple of days. We’ve had to wait longer than other parents, who probably just checked off these milestones from their lists as another normal occurrence. But we know that our wait is worth it, and that some NICU parents won’t get to see their babies smile or laugh or leave the hospital at all. Even when your own child is doing well and her alarms remain silent, the monitors constantly announce that there is another baby who isn’t. And on your baby’s bad days, it was their alarms reminding another family to be grateful for the silence.

Social Life

For the first time in 4 months, I went somewhere just for me. A friend from my old job invited me to a local moms’ group a couple weeks ago and I finally worked up the nerve to go. I was planning to go last weekend, but we had Little Miss Minion’s shunt revision fiasco instead. I debated about going because A) I can’t bring my baby and B) I wasn’t sure if I could handle being around so many “normal” babies with their “normal” problems and their moms with their “normal” pregnancies. 

So I went anyway. 

And it wasn’t that bad. 

I’m sure I looked like kind of a creeper, sitting there with no baby, scoping out everyone else’s. We went around an introduced ourselves and our babies. I need to work on mine, since I was flipping through my phone to find an early, not terrifying picture of her to show off. Most of the babies are around her chronological age, even though she physically resembles the 10 day old baby more. The group is technically a breastfeeding moms group, led by a lactation consultant, so we started off with questions anyone had about that and then general questions, then everyone ended up on this huge blanketed play area with their babies for impromptu Tummy Time. This seems in retrospect to be a natural segue, but since I had no baby with me, it didn’t occur to me to join them on the rugs for about 15 minutes. I sat on one of the couches, listening to the different conversations. There was an exchange of birth stories, where I heard how horrible it was that people had to wait five minutes to hold their babies, how people’s “traumatic” births were really just that they caved and got an epidural, about their Miracle Babies who “only” weighed 6 1/2 pounds when they were born (with no actual medical problems, at full term). 

When I finally realized that the conversation was moving to the floor, I started eavesdropping on the different groups to see where I should sit, based on what everyone was talking about. I heard people talking about their jobs, about breastfeeding, about being parents, and then I heard “my language”: someone was throwing around “OT,” “PT,” neuro, therapy, and NICU. BINGO. 

Her baby had aspirated meconium and was being followed by several specialists. She was talking to another mom, who is a nurse. After I started talking to them, I felt much less awkward. 

All in all, it was nice to get out of the house and talk to other people. It was much harder, mentally, than I thought it would be, especially because our group leader is 34 weeks pregnant. At the hospital, I would power walk from the lobby to the elevators as fast as I could without running to avoid seeing the inevitable round stomachs and hear the whining about how they were sick of being pregnant and why can’t this baby just come now. 

I did feel pretty good about my freezer milk stash. People were talking about being worried about running out of milk and supply issues, and the leader mentioned the “mythical” freezers full of frozen milk that people see on Pinterest and think is normal. I said that, due to her incredibly small volumes at first, I now have that mythical freezer and I’m still worried about running out. 

1 Month NICU graduate

Yesterday was one month since Little Miss Minion was discharged from the NICU. She weighed 5.9 pounds that morning, and she weighed 7 pounds, 14.4 ounces last Friday.

Yesterday, she had a feeding therapist appointment, an occupational therapy appointment, and a pediatric neurologist appointment. These were all follow ups to make sure that everything continues to look good with her.

The feeding/OT appointment went really well. We talked about how much she eats, how often, how she generally does at feeding, etc. I told them we had moved her to a level 1 nipple and explained why, since she was discharged on an ultra preemie size. She was getting tired and angry toward the end with the ultra preemie because she had to work so hard to get anything out. Since she wasn’t dribbling or coughing, we bumped her up to the preemie. When the same thing happened, we bumped to level 1. They were very impressed. We are cleared from having to come back to either of them, unless there is a problem in the future.

The pediatric neurologist visit went well too. He did some measurements, tested her reflexes, looked at her muscle tone (whether her arms and legs flex and relax), and measured her head circumference. We are cleared from him for 6 months. He’ll want to make sure that she is hitting her adjusted age milestones on time. So when we come back in February, when she is chronologically 9 months old, he will want to make sure that she is at least doing things that a six month old can do.

I finally busted out What to Expect the First Year, since she’s 1 month adjusted now. She can do everything for a 1 month old and about 1/2 oz the 2 month stuff. So she’s progressing really well. It does mention smiling, so I’m going to have to work on that. I don’t want her to inherit my chronic bitch face. 🙂

I’m going to a new mom group tomorrow. One of my friends from my old work invited me, and it will be nice to get out of the house for a while. I’ve been looking for preemie groups online and then it finally occurred to me that there aren’t any because none of us can go out!

Looking forward to the long weekend!

Shunt Revision

Shunts have a 30% failure rate during the first year. It looks like we are getting ours out of the way early.

I took Little Miss Minion to the pediatrician yesterday because she was hysterical for most of the day. I figured that she had an ear infection and those are a big deal with shunts. She had also been doing this thing with her eyes called “sunset eyes.” This is a term used for when a person’s eyes look downward and appear wider than usual. Picture surprised eyes, looking down at your feet with your head facing straight ahead. Pupils are in line with the bottom eyelid. This is a sign of pressure within the skull.

The pediatrician sent us to the emergency room of a children’s hospital  (not our previous one) to get checked out. Apparently our usual hospital doesn’t have a pediatric neurosurgeon on call.

I’ll try to keep the language here PG, but the rest of the night was an absolute shit show. LMM was fine the whole time-this was an issue between us and the medical staff at the hospital. As you are all aware by now, she was born at 28 weeks gestation. This means that she missed out on the entire 3rd trimester antibody transfer, which means that she has a compromised immune system. We were told during our NICU stay that she is highly susceptible to infection and that she needs to not be in public places, especially once cold/flu/RSV season begins. Any kind of respiratory infection will send her to the hospital and will probably require intubation (breathing tube/respirator).

We got to the ER and the first thing I see is a little kid coughing. Luckily, the triage nurse put us in an unused office to wait, since she is a Preemie. From there, we were admitted to the ER and got several scans done. They did an x ray shunt series, which takes x rays of her head, neck, chest, and stomach to make sure the shunt is positioned correctly. They did an MRI to see the exact location and position of the intake end of the shunt, and they did an ultrasound through her fontanel  (the soft spot on the top of babies’heads) to see the fluid levels within her ventricles.

After we were admitted to the hospital itself, we were taken to the Neuro floor. Well, we were told it was the Neuro floor. We were taken to our room and were shocked to find that we had a double room with a toddler (maybe 3-4 years old) and what appeared to be the entire extended family.

Little Miss Minion has only been to 4 places in her entire life: the NICU, our house, her pediatrician’s office, and my mom’s house. The concepts of isolation and quarantine were drilled into us at the NICU, and for good reason. She can escape the Hazmat bubble when she’s bigger and her immune system has developed more.

We talked to the nurses, who brought us the charge nurse. None of them seemed to understand the concept of prematurity and immunity problems. It was shocking. It took an hour and a half from that conversation to speak to the on call pediatricians who were following her jointly with the neuro team. We explained the situation to them and they seemed to not really understand the severity either. They managed to get us an empty patient room though, around 2am. We refused to leave her in the joint room with the family reunion going on, so we holed up in a consult room and planned on taking turns sleeping in her patient room, since her nurses told us we couldn’t sleep in the consult room. She had an IV port placed in the ER, and during our 5 hours in the consult room, no one came in to check on us or to flush her IV. If you don’t flush it, the blood will clot and ruin the IV.

After we were moved into a private room, our nurse pretty much ignored us. She came in once to check blood pressure, couldn’t get a good reading, said she’s be back, and never did. We were forced to wrap LMM in adult sheets because there were no pediatric blankets to be found. Her IV started leaking at some point, probably because it hadn’t been flushed. When they hooked up the fluids, they commented about how sluggish it was. I resisted the urge to tell them it was probably because no one flushed it. We also found out that the floor we were on, which we were told was a neuro-only floor, also had general pediatric patients on it. This means kids with actual illnesses, not just neuro issues. Kids with coughs, colds, runny noses, etc. Contagious things.

The empty room we were moved to had an isolation cart outside already. The nurses this morning assumed she was in isolation, and we haven’t corrected them.

What we’ve learned from this experience is that we will never return to this hospital. We will need to figure out how to arrange care for her at “our” hospital because the compete lack of common sense among 99% of the doctors and nurses is absolutely unconscionable. We were told during NICU discharge class that being a nicu grad is a big deal, medically. They told us that when we go to the pediatrician office, we are to tell them about her nicu stay and be placed in an exam room to wait or to go to the well baby room. We were told that she needs to not be in day care. Don’t take her to public places, like restaurants, grocery stores, the mall. Limit her exposure until she’s big enough and strong enough to handle it. I still cannot believe how we were treated here, how no one seemed to understand how big of a deal this is for her.

When we go back to her pediatrician, I will be getting a letter and/or a note made in her chart that she is to be isolated from other patients and their families. I don’t understand how we were told, and told often, about the need for isolation during our nicu stay and then have her placed in a room full of strangers. I will also be writing letters to everyone I can think of so that this doesn’t happen again to us, or to the family of any other preemie.

Her surgery went well. We can go back and see her in a few minutes. Neurosurgeon said we could be out tomorrow.

Shopping Spree!

I finally made it to the store to pick up some things for Little Miss Minion. Since we can’t go together, it severely limits the times that we can go.

We have 7 Dr. Brown’s bottles now, instead of just the one they sent us home from the hospital with. We can clean them all once a day now, which will be fantastic. I found Preemie flow nipples at the store too, which I was surprised to find because preemie stuff is hard to find, now that I’m looking for it. I boiled and dried them all this afternoon, so they are ready to go.

I got her a bathtub, which we will be using tonight. It’s more of a mesh recliner that you put in the bathtub, but she’s never had a real bath before, so this will be fun. I got all of her towels and washcloths and soaps put away in her bathroom, plus cleaned the shower because we never use it and it was dusty.

We also realized/remembered that we have actual bibs for feeding her, so that’s been nice today. I got some more swaddle pods in a lighter weight fabric, so we don’t have to worry about washing the one we had.

I got a mirror for the car so I can see her while I’m driving. I picked up a small package of generic wipes to see if she tolerates them. We can buy 800 for about 14 bucks vs 50 name brand ones for 12 bucks. I picked up some more dish soap, since we are going through that like crazy with washing her bottle and my pumping stuff.

I went through my “new mom” coupons and found a bunch of good ones that I used, plus a 15% registry items one, plus a buy one get one Starbucks. All in all, an excellent shopping trip.