Almost December?!

So apparently December begins tomorrow. Where did the year go?

Little Miss Minion rolled over twice on Thanksgiving morning, which was a nice treat for us. We’ve been working with her on rolling for weeks. She lost some of her skills after her back-to-back surgeries to correct her hydrocephalus, but she’s still meeting or exceeding all of her therapy goals. She gets oatmeal cereal now, twice a day, in her highchair like a big kid. We will be starting her on real baby food tonight, so hopefully she will like that. She has taken a couple of 6 ounce bottles recently, so the food will help me to keep up with her demands. Usually, she takes between 4 1/2 and 5 ounce bottles every few hours, plus cereal at night.

LMM was fussier than usual this weekend. We weren’t sure if it was having her routine disrupted, having different surroundings, or if something else was bothering her. Last night, we realized that she might be teething. I scrubbed my finger and felt around her gums and sure enough, there are little tiny lines of hard things right where her first teeth should be on the top and bottom. I joked that we should call the neurosurgeon today and ask him to take a look at her MRI and tell me if she’s getting ready to start teething. I saw her teeth on the first MRI she had, which was crazy to see, considering she was only like 4 pounds.

LMM and I went shopping in her closet this weekend, pulling out the clothes that she fits into now. She is pretty much out of newborn now, and into 0-3 months. I also went online shopping and got her some stuff that was hugely discounted for Black Friday. She’s got some more 0-3 onesies, a jacket, and a couple of other things coming. I also ordered myself a baby book for her 1st year to put together, since she will be 7 months old in about 2 weeks. (!!!) I ordered a TON of pictures as well, since we haven’t really had time to go through them and those were on sale to be developed too. Now I just need the time to put this stuff together.

We put up our Christmas stuff over the weekend. We’re doing an abbreviated version since we don’t want to stir up all kinds of dust. I’d like to get some of those clear plastic or glass ornaments and put some of her NICU stuff in there. Right now, we have the Weeping Angel tree topper that I made a couple years ago, 4 strands of lights, and a handful of tinsel that Mr Minion threw in the middle of the tree. 🙂 We haven’t decided what we are going to do for “baby’s 1st ornaments” but I’m sure we’ll pick out at least one. She LOVES to look at the tree with all the lights. I was putting them up and she was just laying on her play mat, transfixed. And then she was keeping herself awake by staring at the lights, so we had to turn it off so she wouldn’t get overstimulated. She needs quiet and dim light or no light to fall asleep and stay asleep, which is very important for any baby, but especially Preemies. One of the “Preemie Things” she does is get overstimulated very easily. She hates to be rocked quickly, hates being loudly sung to, hates lots of things going on in the room. When I calm her down or when Mr Minion puts her to bed, we very VERY slowly sway back and forth, or more often, we just hold her securely and gently pat her back. When all else fails, we just lay her down and play Frankie Valli songs for her. She LOVES Frankie Valli.

I hope everyone had a great Thanksgiving and a nice, relaxing weekend!

Happy Thanksgiving!

I always manage to scrounge up a few things that I’m thankful for every year, but this year, I have so many I don’t know where to start. I’m thankful that I’m alive. Between the low platelet count (the stuff in your blood that makes it clot), the sky high blood pressure, and the stress of the NICU, I’m happy to have made it here. I’m thankful that Little Miss Minion is here with us, and that she’s such a fighter. Taking on GBS, sepsis, meningitis, hydrocephalus, 4 brain surgeries, and starting every day out with a half hour of smiles and giggles makes me remember how lucky we are. I’m thankful for Mr Minion, who has been such a huge supporter for me and such a great advocate for Little Miss Minion. I’m thankful for our families, who have been there for the good and bad this year. I’m thankful for coworkers and friends, near and far, Internet and real life. I’m thankful for the NICU nurses who took care of LMM when we couldn’t do anything but watch through plexiglass, for the doctors who oversaw her care, and for the countless strangers who donated things to NICU families like us. We got hats, blankets, books, care packages. We got prayers for LMM from literally all over the world. I’m thankful for the technology that alerted us to the problem, to my medical team for taking it seriously, and for the medicines and machines that saved my life and LMM’s. 

I hope you enjoyed today with your family and that you have lots of things to be thankful for.

Looking Good

Little Miss Minion had a follow up MRI this morning to make sure that the old shunt is working, the ETV is working, the new shunt is working, and that there aren’t any pockets that aren’t being drained by the aforementioned methods. And the verdict is….Cleared until February 2016! The neurosurgeon was “ecstatic” and “very happy” with how her MRI looked, so hopefully we are in the sweet spot where everything is in balance.

Her physical therapist is pretty happy with her lack of regression over the past month. We’ve had to cancel 2 sessions because she was either in the hospital or still recovering. Usually, babies regress much more after surgery and she had two in two weeks.

She’s started playing with her toys more. She grabs them and actually grips things. After her bottles and 20 minutes of upright reflux rest, we usually lay her down on her mat and let her play with her toys. They hang from a support so she can bat at them and grab them. Her favorite is a zebra that Mr Minion named Paul, because “why not?” Next is a fish that I named Joe after Joe Pesci, whose real name is Joey Fisher. Then we realized that we had Joey and Pauly, the Goodfellas gangsters, so we named a doll that she loves Marie, since all the guys were married to girls named Marie in the movie.

She holds rattles, sucks her thumb, puts everything in her mouth, sucks on clothes, her hands, toys. She smiles and laughs all the time. She’s really nailed rolling onto her side, but she can’t quite make it all the way over consistently yet.  Her abs are not as strong since they added the second shunt and catheter, but she’s bouncing back really well.

She got her first RSV shot this week. She’ll get one per month for 5 months to help boost her immune system’s response to rsv. Most recent weight: 11 pounds,  9.3 ounces.

Finally

So, in my last post I talked about Little Miss Minion’s recent shunt surgery. It was at the hospital we hate (see other shunt revision posts for more details), and this trip was no different than the others. Between having roomates, having her sedation reaction not being noted in her chart, and the general air of incompetence, we can never get out of there fast enough. If it wasn’t for her neurosurgeon, who is FANTASTIC, we’d be getting medical care elsewhere.

Immediately following her surgery, while she’s being bandaged up and taken out of sedation, the neurosurgeon comes to talk to us. He always starts off with how surgery went, how she’s doing, and explains exactly what he did (sometimes the plan changes due to what he sees). Then it usually takes about 10 minutes for them to call us back to recovery to see her.

It was 40 minutes before Mr Minion went to the desk to ask what the delay was. We were thinking that something was wrong. Was she having another sedation reaction? Was she bleeding? Was she not waking up? What was taking so long?

We think they forgot to call us back because as soon as Mr Minion went up to the desk and said it had been 40 minutes, the attendant said they were just getting ready to call us back. I call shenanigans.

We hurried back to the recovery area, knowing she would be upset from sedation and still worried that something else had happened. We turned the corner and saw her being rocked by a nursing assistant was was attempting to feed her Pedialyte while LMM cried. Not only was a stranger holding MY DAUGHTER (cue panic of contamination, contagion), but she was already coming out of sedation and was hysterical. I immediately went to take LMM from the nurse assistant, but before I could, she backed away from me and moved LMM out of my reach, telling me to sit down and how to hold my arms, reminding me about the IV, telling me that LMM was groggy and upset. I held back the verbal assault that nearly escaped from my mouth because I wanted to hold MY DAUGHTER.

Since I can’t tell her in person, and since she clearly didn’t read LMM’s chart about her 84 NICU stay and her complications, I’ll put it here instead.

Dear Nursing Assistant Lady,

Don’t ever try and keep my daughter from me. I’m her MOTHER: I have watched her struggle to breathe, to live, with a sheet of plexiglass between us because she was too fragile to be held. I have held her with an IV, a PICC line, a feeding tube, a CPAP machine, nasal cannula. I have held her through three blood transfusions, through countless heel sticks, and with a respirator when she had meningitis. I have navigated around heart monitors, apnea monitors, and respiration monitors while doing my first ever diaper change on a baby that weighed less than 2 pounds at the time. I spent 84 days with her in the NICU, learning how to touch her, how to hold her, how to interact with her. I learned to read her body language, her cries, her cues. You may have medical training, and you may think you know her, but you don’t. You certainly don’t know me, or you would have called us back much sooner than 40 minutes after surgery. You say she “was fussy” after surgery and that’s why you delayed calling us back. Who wouldn’t be fussy after their 4th brain surgery at 6 months old? What would make you think that you can calm her with rapid rocking (Preemies hate that) incessant singing (also hate that) and shoving sugar water down her throat? Why wouldn’t you immediately page HER PARENTS back to calm her, instead of letting us sit in the waiting room for 40 minutes, thinking unimaginable things.

We are her PARENTS. We know her best. But I do have to say thank you for one thing. Thank you for finally making me feel like a mother, even though its taken 6 months to get there.

Shunt Revision #4

Little Miss Minion is currently sleeping off the sedative from shunt surgery #4.

Her last surgery was mostly successful. The goal is to drain extra fluid from inside the ventricles in her brain. Two weeks ago, the neurosurgeon opened spaces in between the two main ventricles so the fluid could flow freely between them. He also opened a drain in the third ventricle, allowing extra fluid to drain that way. Today’s procedure was necessitated by the fact that back half of one of the ventricles had sealed itself, possibly because of the meningitis scarring or because of the recent surgery.

The neurosurgeon added a second shunt today, to drain that back section. There was no way to try to open spaces for it to drain to the other side because the last surgery worked so well.

After her surgery, we were moved to a room with roommates. LMM is a Preemie and needs to be isolated from the public, so this was a problem. Long story short, the roommates got discharged and we’ve been promised that they will try to avoid giving us roommates.

Preemies and isolation go hand in hand. Ever since she was born, we’ve been drilled about hand washing, limiting visitors, reducing contact with others, no daycare, no public places. This hospital seems to have no concept of what being premature really entails. It’s cold/flu/RSV season. We haven’t left our house with her except for doctor appointments.

It’s incredibly frustrating to try to explain isolation to someone who supposedly went to medical school.