Archive | July 2015

Supergirl

Little Miss Minion weighs 5 pounds 7.7 ounces today!  She lost a little bit at last night’s weigh in, but her digestive system is becoming more regular, so they said that’s ok. They added a little protein to her milk to help her gain weight a little faster.

Her mobile FINALLY came. I ordered it last week with 2 day shipping. It should have arrived Friday. It got here yesterday. They sent me a survey about my transaction: big mistake. It had tracking on it and it hadn’t even left the warehouse on the day it was supposed to arrive. It’s got a duck, frog, bee, and a turtle on it and it plays music. She follows the animals around with her eyes and just kind of stares at it with this excited look on her face.

A friend at work got her a doll that I brought in over the weekend because her mobile wasn’t here yet. The doll is very bright and is filled with crinkly stuff that makes noise. It also has two teething rings and a rattle on it. I made it dance for her and kiss her. She started cooing and moving her arms and legs around. I feel bad for her because she has to be so bored in here when she’s awake.

Feedings are going well. Not sure yet if this weekend is still a go or not. It’s up to her. Overall, she is looking great! She has another follow up ultrasound of her head in the morning to verify that her shunt is still working as it should. Her abdomen is healing up very nicely and very fast. I think we should just call her Wolverine.

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The Home Stretch?!

I put the question marks in the title just so that Little Miss Minion doesn’t feel like she needs to prove us wrong.

She pulled her feeding tube out yesterday, and they said they would leave it out until she needed it again. Which she did. But since Mr Minion and I have gotten discharge classes and CPR out of the way, everything waits on LMM to figure out her feedings. We brought her car seat in this morning so they can schedule her car seat challenge. They did her hearing test again, which she passed.

The current best guess is that she could be home as early as this weekend! Last night’s weigh in was 5 pounds 7.8 ounces. Her shunt still looks good. Her abdomen is healing nicely. She just needs to rest up and nail her feeds!

I got to snuggle her for pretty much the whole evening. When I was done pumping, she was getting fussy, so I picked her up and got to hold her. She doesn’t like to be stroked or rocked, because she’s a Preemie and she can’t handle that yet, but she likes to just lay down on my chest and sleep. She’s very warm and cuddly. I was looking forward to that all day.

1 Week Post Op

The bandage came off yesterday. Her head looks much better than I was expecting. There is an incision, stitched closed, on the back of her head. The shunt valve is a small bump under her ear. The shunt tubing goes from the head incision, down the neck, and into her stomach.

The neurosurgeon came in today and checked everything out. He read the ultrasound while I was there. The fluid is down to almost normal levels! She has four tiny areas of damage, but there is no way to tell if they will cause problems. She could rewire her brain around them or they might cause delays. Time will tell.

She is rapidly improving her eating skills. Last week, she consistently ate about half her food, which was 25 milliliters out of 45. Today, she has eaten all of her bottles with a total exception of 20 mls for the day.

The way out of the NICU for Little Miss Minion is going to be through her stomach. Once she eats all her food for 24 hours, they pull the feeding tube. From there, she’s gotta keep eating all of her food and keep gaining weight and not have any As or Bs  (apnea or bradycardia). Once she does that for about 2 days, she’s out of there.

Little Miss Minion has decided that being held is the best thing ever invented. She must be held all the time. I think she is calling in her 3 months of not being able to be held, because once you pick her up, she’s happy and smiling and wide eyed.

The surgery has really made a huge difference in her. She’s much more active and opinionated and easily bored. Her mobile is coming this weekend. Mr Minion and I are taking discharge classes and CPR tomorrow. We need to get the car seat out so it can air out before she uses it.

Today is day 72 in the NICU.

First Surgery

This has been a rough week for LIttle Miss Minion. Its been a rough week for Mr Minion and I as well.

On Tuesday, LMM had a regularly scheduled ultrasound of her head to make sure that her brain was developing normally. I got a call at work from the nurse practitioner, telling me that they had found enlarged ventricles in her brain. I asked what that meant and she said that the ventricles in her brain were bigger than they should be. No shit. After Googling “enlarged ventricles,” I was in full panic mode. I texted Mr Minion, who left work early to meet with the fleet of doctors I had been told would be convening in her room that afternoon.

When LMM was about a month old, she developed Group B Strep, which turned into sepsis, which (probably) turned into meningitis (brain inflammation). The meningitis might have caused a blockage that caused fluid to build up in her brain. This is called hydrocephalus, or “water on the brain.”

The neurosurgeon explained that the brain floats in a liquid called cerebrospinal fluid (CSF). CSF is basically Gatorade for your brain, containing water, electrolytes, sugars, etc. This fluid is created within the ventricles of your brain and is normally absorbed after flowing through the brain itself. In LMM’s case, this absorption is not happening. There is a blockage between the 3rd ventricle (in the center of the brain) and the 4th ventricle (toward the back of the neck). This blockage is damming up the fluid being created within the 3rd ventricle, putting pressure on the brain and pressing on the skull.

Luckily, since LMM is a baby, her skull is not fused together yet. The plates can spread apart to accomodate the increased pressure being put on it from the increase in fluid. In order to keep the fluid from building up and putting too much pressure on the brain, a procedure is needed to ensure that the fluid can drain properly. On Thursday, LMM had a VP (ventriculo-peritoneal) shunt placed inside her brain to drain the extra fluid into her peritoneal cavity, a space near her stomach, where it can be absorbed. Initital ultrasounds and scans confirm placement of the shunt and show that the fluid levels are going down.

What does all of this mean???

According to her pediatric neurologist, LMM has a small chance of physical delays in fine and gross motor skills. Fine motor skills are things like writing or handling things with fingers. Gross motor skills are things that use large muscles, like walking or swinging arms. She also has a slightly increased chance of seizures. On the other end of the spectrum, she could be completely fine. Time will tell. Babies have incredibly plastic brains and its possible for them to rewire around damaged portions, which would result in no visible problems. She might have slight delays in speech development or a learning disability.

According to her neurosurgeon, the shunt will drain excess fluid from her brain, preventing damage from occuring to her brain tissue. She will need shunt revision surgery periodically to lengthen the shunt or to correct it if there is a malfunction within the mechanism. He is very unwilling to guess on how this will affect her in the future and has repeatedly told us that the baby brain tissue is very resilient.

According to her nurses and her doctors, LMM is very lucky to have Mr Minion and I as parents because they know that we will do everything possible to give her every advantage we can.

It will be nearly impossible to tell if any future problems are caused by the enlarged ventricles. Preemies are at risk for nearly all of the same things that the enlarged ventricles could cause. In either case, therapies will assist her to reach her full potential. Due to her early gestational age at birth (28 weeks 0 days), she qualifies for physical therapists already. They do visits a couple of times a week to see how her muscles are developing and to make sure her movements are good. Occupational therapists also make weekly visits, currently focusing on improving her eating skills. She is enrolled in the follow up program since she was so early and small, so this will provide assistance after she leaves the NICU.

Her surgery was Thursday. Since they put her under general anesthesia, she needed to be put on a ventilator (vent). This is a breathing machine that essentially breathes for her while she is under and while she comes out of the medication that puts her to sleep. It took her until Friday morning to really come out of the anesthesia and to be extubated (have the vent removed). It takes a long time for Preemies to come out of it because they metabolize the medication so much slower than adults or even full term babies. Mr Minion and I stayed at the hospital Wednesday and Thursday nights. I got about 8 hours of sleep between the two nights. Thursday night, I spent most of the night standing next to her crib, holding her hand and trying to comfort her. She was coming out of the anesthesia very slowly and opening her eyes. Due to the placement of her vent, I couldn’t sit in the recliner and see her, so I stood on the other side so that she would see me when she opened her eyes. I slept from about 1am until 4:30am.

On Friday, she had a slow, relaxing day. She slept for most of it, ate an entire bottle for the first time, promptly threw half of it up, and slept some more. Saturday, she had some drainage coming from one of her ears and a slightl fever, and the doctors wanted to rule out an infection, so they started antibiotics, blood cultures, fluids, and an IV. Normally, they would just watch the ear, but since she has a shunt, they pulled out all the stops. Her 24 hour cultures came back negative today, and if they come back negative tomorrow, they will assume there is no infection and can discontinue all the medications and the IV. She was very, very fussy yesterday and the nurses said she was probably upset about the antibiotics. They can cause stomach aches and cramps, plus diarhea. Her nurse gave LMM some Tylenol, which really helped.

Today, her hematocrit levels came back low, which means that she is anemic, and that she needs another blood transfusion. She has had several so far, and Mr Minion and I were discussing how blood transfusions seem normal for us. Babies are unable to make their own hematocrit until around 38 or 39 weeks gestation and usually need transfusions every few weeks. LMM was unique in that she didn’t need one for several weeks after birth. Normally, they need one almost immediately. I held her hand and did a touch hold while they tried to get a good IV stick after her first one started leaking, but they couldn’t find a vein that hadn’t already been used. Babies’s veins don’t heal as quickly as adults, so once they are stuck, the veins take a long time to be usable again. They tried several times before deciding that she had taken enough tries. I’ve been dubbed “Nerves of Steel” by the nurses because I stayed with her the whole time. I figure if I can help her to be more comfortable, I should stay with her.

All in all, its been a long, exhausting week for the Minion family. Little Miss Minion is doing very well and was back to her old self today. Its amazing how quickly they can bounce back from things.

More progress!

As Little Miss Minion gets closer to coming home, they start doing more tests of her senses to make sure they developed properly. Preemies being preemies means that they didn’t get as much time to fine tune things like a full term baby would. All of their systems are in place, they just haven’t finished the small adjustments.

Her eyes look good. The eye doctor checks on most preemies once every week or two to make sure their eyes keep developing normally. Preemies are at risk for retinopathy of prematurity, which can result in the retina detaching itself, which means blindness. LMM does not show signs of this. Whether she will get my crappy eyesight is another story.

She passed her hearing test yesterday, which is good on two counts. All babies, preemie or not, have to pass before they are discharged, but again, preemies are at higher risk of ears not being fully developed. LMM also developed sepsis from a group b strep infection, and one of the side effects of sepsis in infants is meningitis, which can cause hearing damage. LMM did not cooperate when the doctors attempted a spinal tap (3 different times), so we will never know with 100 percent certainty whether she got it or not. But passing the hearing test is another strike in the “no” column.

The hospital is having me bring in some of my frozen milk, which is good because my freezer upstairs is full and my giant basement freezer that is taller than I am is also full. LMM is eating 40 ml every 3 hours, which is quite an improvement on her 2 ml every 4 hours from when she was born.

She was moved into a “big girl” crib yesterday. This is a normal looking crib that they use for babies who have been or will be here for a while. It looks like a normal crib and makes the parents feel better, plus it’s much easier to get to her.

Preemie power!

The Home Stretch

Things are moving so fast. She’s been out of her isolette for a couple days, she’s wearing clothes, she’s keeping herself warm, she’s attempting bottles or breastfeeding for half her feeds, and she’s 4 pounds, 4.8 ounces today. The nurses are talking about discharge class and CPR for us. They have mentioned that we need to have her carseat ready soon, because she will have to pass her carseat challenge before she can go.

They are guessing around 3 weeks, at the earliest. She will have to take and finish all of her feeds by mouth for 24 hours. Her feeding tube will come out. Then they will watch her for 2 days, to make sure she can keep it up. Then she could come home.

Mr Minion and I are finishing the painting of her room tonight. We are doing the last coat on the closet doors and the main door and the windows. He put the glider together last night. We started sorting out all the gifts from the shower this morning. I’m going to get all the thank yous written and mailed this week.

And the mayhem ensues.

Day 50

Today is the 50th day of LMM’s nicu stay. She has come so far! Her weight last night was 4 pounds, point 7 ounces. She had her first bottle yesterday. She got to wear clothes for the first time yesterday. It’s been a good week so far. EDIT: When I got to the nicu this afternoon, she was in an open isolette! Such big steps!

Mr Minion and I are putting the second coat of paint on the nursery walls and doing the trim work tonight and tomorrow. The crib is arriving next week. We are getting a dresser from Mr Minion’s parents this weekend. Maybe we can FINALLY get the gifts from the baby shower in the nursery instead of piled in our living room. She could be home as soon as the end of the month.

So much to do…