Archive | August 2015

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.

Short but Sweet

We had our first physical therapy assessment on Monday evening. The early intervention team sends specialists out to our house and they provide different services for Little Miss Minion. RIght now, she will just be seeing the physical therapist to make sure her head preference gets worked on. I think Mr Minion and I would like them to come out once a week, so when we have our meeting, we will get to pick the frequency.

Overall, the physical therapist (PT) was very happy with her. She was very impressed with her head and neck control, which is far ahead of her adjusted age. Since the stitches are coming out more, I feel like her head preference is going away a little bit, but we are going to do the things the PT suggested anyway. We have a play mat/gym thing that we use for Tummy Time right now, and PT suggested that we lean her back in the Boppy to get her to look up more and to angle it so she has to look to the right in order to see interesting things.

Tonight, we are going to try her out on regular, newborn low-flow nipples. She is handling her food so well and doesn’t usually dribble at all, unless she is tired, so we think she might be ready for the next level. She gets fussy toward the end, just like she did before we moved from the Ultra Preemie to the Preemie size.

During Tummy Time the other day, she kicked herself over from her stomach to her back. She has incredible ab muscles. Its so exciting to see her doing normal newborn things.

Other than that, not too much to report. She enjoys her naps and her food. I wish my life was this simple. 🙂

Another Weekend

The neurosurgeon follow up went well. He snipped the ends of her stitches so they will come out faster, but they could take another month to completely dissolve. Our next follow up with him will be around Thanksgiving. They will do an mri to make sure the shunt is still working as it should.

The next appointment is Monday evening. This one is a physical therapist from the early intervention program.

Tummy time today was impressive. She can push up and lift her head, looking around. She’s started moving her arms more, like she knows she needs to use them to crawl. She can kick off very well against our hands and propel herself across the mat with just her feet. When I’m working, I keep her loosely strapped on my chest so she can build her arms up.

We bumped her volume up to 90 mls tonight. She’s been finishing 80 pretty consistently, and she’s been waking herself up about half an hour before feeding. We think she’s ready for a little more. This will make mixing up her milk easier, since the recipe is in units of 90 mls. She gets a protein fortifier for extra calories and protein (shocker) and rice cereal for her acid reflux. The rice thickens the milk a little, so it stays down easier.

Hopefully the combination of tonight’s bath, which she thoroughly enjoyed, and a little extra milk will help her to sleep better tonight than she did last night. It’s now about 9pm, and I was awake from midnight to 2am, and from 4am until now. There was a 45 minute nap in there around 3. We all need sleep! 

Appointments Everywhere

For being 2 weeks old adjusted, Little Miss Minion is a very popular girl. This week, she has an appointment with her neurosurgeon to check her shunt and make sure everything is working correctly. Next Monday, she will be having a visit from her physical therapist to assess her needs and observe her progress. In a couple weeks, she will have a pediatric neurologist appointment and a NICU follow up occupational therapy appointment.

All of these specialists are looking at her to see if there are any issues that we need to work on. Having hydrocephalus and the shunt, in addition to being so early and so small, puts her at a slightly higher risk of having fine or gross motor skill delays or developmental delays. Her chances are fairly low, given the reasons for the shunt and the fact that she was born early because of preeclampsia and not some structural issue that impeded blood flow or oxygen. The specialists are here to catch any issues early and provide ways to correct them before they become problems.

We’ve increased her food to 80mls. She seems to be handling it very well. She gets reflux medicine twice a day and that seems to be helping with her general comfort level and her behavior during feedings.

Her bath the other day went well. She likes the feeling of having her hair washed and rinsed–but who doesn’t? She hadn’t felt water before, so it was fun to watch her experience it. I wrapped her in one of her hooded towels to dry her off and she just laid there cooing and looking around.

She’s pretty much adorable.

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.

Happy Friday!

Pediatrician appointment on Wednesday went well. This was a weight check and a follow up from her appointment last week. Current weight is now 6 pounds, 7.8 ounces!

We were cleared to go to every 4 hours overnight for her feedings. She was eating every 3, and that extra hour has made a big difference for Mr Minion and I in terms of sleep. She’s sleeping better now too, and is more awake during the day.

We give her tummy time every day and she’s being very impressive. She can lift her head, hold her head up (for the most part), and kicks herself around the mat. The pediatrician was very impressed with her range of head motion and her neck strength. She is a week old  adjusted, and doing things closer to her chronological age.

We got actual reflux medication for her. It seems to be helping with her congestion and cough. She’s also eating a little better, too. We offer her 70 mls now, and she has finished almost all of it for her feedings today.

On deck for this weekend: going to try taking her for a walk outside. I realized after the pediatrician office visit that I hadn’t physically left the house for a week. I’m more of an indoor girl though. 🙂

Moving Forward

I went back to work today-working from home. I didn’t think it would be as busy as it was. Got caught up from my week off. I’m really happy that working from home was an option for me.

We had a visit from an early intervention therapy provider this evening. They will work with us at our house with Little Miss Minion, giving us physical therapists, occupational therapists, anything she needs. We qualify for this program at no charge because she has medicaid.

Speaking of medicaid, I’m so happy that things like that exist. And also that I have such good insurance. I saw the hospital bill for her first month in the nicu. $597,000. She was there for 3 months. And that is just the fact that she had a room there, not actual medical care. Luckily, the part that we owe shows all zeros. Whew.

Busy day today. Repeat tomorrow. Time for me to sneak in a quick nap before her 11pm feeding.

Eat Sleep Poop Repeat

We have settled into sort of a routine since getting Little Miss Minion home from the Nicu. Change her diaper, feed her, let her rest on our chests for a while to settle her stomach, let her sleep, and then repeat every 3 hours. There is occasionally some awake time during the day, when we can give her Tummy Time, but this is mostly what happens. We take shifts for her feedings at night, so Mr Minion takes 11pm and 5am, I get the 2am and the 8am. As soon as she starts to completely finish her bottles (currently offering 60mls), we can start pushing back the 2am to 3am. We’ve cut her 2am down to 30mls, because the second half of the bottle never gets finished at that time and she’d rather sleep. As long as she keeps gaining weight and eats enough to make up for it during the day, I’m good with that.

It’s been so nice to be able to update the blog instead of sending a million text messages back and forth this week. This way, everyone is on the same page and our phones aren’t blowing up at all times of the day and night. With people in at least six states, plus my fantastic fellow nicu moms who sometimes pop in, this has been a great way to update everyone. 

Speaking of updates, Little Miss Minion has outgrown some of her preemie clothes! We have her in newborn onesies and her newborn diapers actually fit! They will be excellent doll clothes though, so I will hang onto them for her.

Agenda for today: grocery shopping (yes, I know I said that was happening like 2 days ago), laundry, working on the nursery.

Happy Due Date!

Little Miss Minion has reached her due date today! She is officially 40 weeks adjusted age, which means we can start looking for her to act more like a newborn. She is already more awake during the day and sleeping more/deeper at night. We talked to the pediatrician and she said its very normal for them to do this after graduating from the NICU, which is never really quiet or dark. One of our primaries also told us this the day she was discharged. If any of you are reading, we miss you all!

I have finally started to go through and organize the paperwork from the hospital. I have one folder for her NICU documents, one for her pediatrician, one for her physical and occupational therapists, one for her neurologists (neurosurgeon and pediatric neurologist), and one for Medicaid/SSI. There are also folders of keepsake stuff, informational stuff about Preemies, and her discharge class documents. Her room is mostly put together, her laundry is mostly done, and the house is coming back together reasonably well. 84 days in the NICU does not a clean house make. 🙂

We had our first official Tummy Time yesterday! I had her on my chest for her post-bottle nap, and when she woke up, she was pushing off me and trying to crawl over my shoulder. We laid a blanket down and laid her on her stomach to see what she would do. She was kicking her legs, like she was trying to crawl, so I put my hands behind her feet so she would have something to kick against–she pushed herself a good six inches across the blanket. Very impressive. She can lift her head up and look around as well. When she was laying on me, she kept whacking her head against my nose or my chin, trying to look around. Mr Minion put her play mat-gym together this morning and she played with that while we ate breakfast. We set it up in the living room, which is pretty much directly in the line of sight from our dining room table, so she was under full supervision. It has a little mobile that plays music and some dangling zoo animals, including a lion in Gryffindor colors that I have named Godric. She was reaching out for the animals and hit a couple of them, but I am not entirely sure whether she meant to grab them or not.

Something we mentioned to her pediatrician and something we will be following up with physical therapy (PT) is her head favoritism, probably due to the placement of her shunt. She tends to avoid laying on that side of her head, which will eventually result in the other side of her head being flatter and her neck muscles being unevenly developed. Until her PT appointment, our pediatrician recommended rolling up a blanket or washcloth and putting it behind her so that it is harder for her to roll her head off of her shunt. I don’t think that it hurts her, but it probably feels different to her and she doesn’t like it. I don’t really blame her.

We have started offering her about 60-65 mls of milk at each feeding. We are going to reduce her 2am feeding to 30 mls, since she is sleeping so much better. Her pediatrician said we could start getting rid of that one if Little Miss Minion tolerates it. She likes her sleep, so I think she will be much happier. Not going to lie, but Mr Minion and I will be much happier as well. We also like our sleep. We also bumped her from the Ultra Preemie nipple to the Preemie nipple because her feedings were taking an hour and she was getting angry and tired. Since the switch, she has been finishing in about 30 minutes and is much happier.

I made cajun chicken pasta last night for dinner. Chicken, mushrooms, roasted peppers, red onions, cream sauce. It is so nice to be able to cook again. I’ve missed it. Tonight, I’m making our weekly menu for the first time in 3 months so I can go shopping tomorrow.

First Trip Out

We went to the pediatrician this morning for her nicu follow up. She is 18 1/2 inches long, and 6 pounds, 0.4 ounces!

We got her first batch of shots today, which she handled like the super baby she is. She goes back in a week for another weight check.