NICU Development Clinic

Yesterday was Little Miss Minion’s third NICU clinic. This is the big appointment where she is evaluated by physical therapists, occupational therapists, speech therapists, a neonatologist, and a NICU nurse. We don’t have her official write up yet, but I have the rough numbers. She did really well!

For those who are unfamiliar, her age is measured by two numbers. One is her chronological age-this is how old she is based on her birthday. The other is her adjusted age-this is how old she is based on her due date. So, by her birthday, she is 22 months old. By her adjusted age, she is only 19 months old. This doesn’t really seem like much, but in terms of early development, it is a big deal. 

Her speech was scored at eighteen months, which is a HUGE improvement. This score technically means that she is no longer considered delayed in speech, which is amazing since she’s only had about a month of speech therapy. They gave us some tips on how to encourage her to talk, but said that she is so close to really talking.

Her cognition was scored right at her chronological age, which is also fantastic. This means that she is scoring three months ahead of her adjusted age, which means that she is pretty much caught up for now in that area. With her early birth, the hydrocephalus, and the brain damage she incurred as a result of either the meningitis or the initial pressures of the hydro, this is really a best case scenario. The doctor told me he had to double check her chart to make sure she was the right kid. 

She’s pretty much on track with her adjusted ago with regard to her fine and gross motor skills. They looked at how she walks, how she holds things, whether she can stack blocks, how she picks things up. 

All in all, I think her average score was twenty or twenty one months, which is great, great news. I’ll post more details once we get the official results in a few weeks. But for now, yay for LMM!

NICU Support

The formal orientation for the nicu parent group was today. We learned more about what the group does, what our roles can be, and talked about how to be an effective parent advocate. I think I am going to focus on the dinners, bedside visits, and seeing the moms in antepartum. 

When we were in the NICU with Little Miss Minion, we looked forward to the bimonthly dinners that were hosted by the group. It was a good chance to get to talk to other parents, meet graduate parents, see the light at the end of the tunnel, and get free food (hey, eating two or three meals a day in the hospital isn’t cheap). We learned a ton of helpful info at the dinners, such as picking primary nurses, how to blacklist a nurse, the little perks of the parent lounge (stocked fridge with juice, milk, jello, and other snacks), and we got a little break from worry. 
Bedside visits are another facet to the group. On a purely utilitarian level, bedside visits are the best way to distribute materials like flyers, welcome bags, treats, etc to each child’s parents. On a support level, it’s a great way to interface with the parents and let them know that we are there for them. Their child has a team of people, but the parents often get overlooked, understandably so. We can serve as a backup for the parents, to be cheerleaders for them, to make sure they are handling things ok, to help get resources if they need extra help. 
Antepartum visits are the last area that I want to focus on. I was on bedrest for three days in April (I was about 25 weeks) and then for two days right before she was born. Being able to talk to someone who had lived through it and could help navigate the process would have been invaluable. Plus, I was bored out of my mind in April, and talking to anyone would have been a nice break in the monotony. I think talking to the immediately post partum moms would be something I would also like to do. I was so out of it in the days after her birth, it would have been nice to have someone to talk me out of the shock. 
I’m excited to see what this new opportunity holds. 

Back to the NICU

Last night was the first part of orientation for the NICU parent support group. This is group of people who have had children in the NICU. They host dinners twice a month for current nicu families, visit parents on the antpartum wing, visit families in their nicu rooms, and generally try to make the nicu stay a little  better. They do fundraisers, which I have helped with, that allow them to do things like bring a dad to the nicu from overseas before his baby passed away.
Yesterday was the informal informational meeting. There were seven of us, plus the leaders. We talked about what the group does and then there was the “tell your birth story” part. Normally, this is the part where I kind of back away. It’s hard when your story is so far from the ideal and the other stories are what you wanted yours to be. This time, instead of cringing when someone complained about how fat they got and how they were so upset that they had to wait five minutes to hold their baby, I found myself nodding along as someone mentioned the to do list they had written out in the morning and found themselves being admitted to labor and delivery at 34 weeks when their water broke early. We laughed at the crazy stuff we said or did while we were on magnesium. We grinned when we remembered how the nurses called our babies  feisty or cranky or angry because it meant that they were fighting. There were many overlapping similarities, which is something I have not experienced when telling my story. 

After that, we were told that any of us who wanted to could take a walk through the nicu. None of us had been back through the doors since we had been discharged. The atmosphere of camaraderie shifted as we neared the doors. Everyone seemed to pull back inside themselves. We were buzzed in and I stepped into the nicu for the first time since August 3, 2015. Everything was the same. We scrubbed up at the same sinks. We walked down the hall, each of us pausing for a moment as we passed the various wings that our babies began their lives in. I got a glimpse of our first room, at the end of one of the long wings. We walked through the parent lounge, then entered the second half  of the nicu. I stood in front of the door to the room where we learned about hydrocephalus, the room where Little Miss Minion took her first bottle, the room we finally got to leave and bring her with us. 
I hope that I am able to help someone on their NICU journey. 

Moving Up Again!

We got the news today that Little Miss Minion will be moving up another level in classroooms! She will be in this new room until she turns two, and then it will be into the room where they start potty training! Not sure how that will work, since she will be two chronologically, but only 21 months adjusted. The new room will have mats instead of cribs for nap time, and they eat lunch at a little table with toddler sized chairs. 
We also have our bi-annual early intervention meeting coming up on Monday. This will include our case manager, the physical therapist, and the speech therapist. We will be adding speech therapy sometime in February, since LMM seems to need a little extra help with that. She is babbling more, since we started implementing the suggestions from our speech assessment, but no words. 
In non-LMM news, I have decided to volunteer in the NICU grad parent group at the hospital that LMM was born at. This is a group of parent volunteers who have had a baby in the NICU. They host monthly dinners, special events, and other things for the families in the NICU. They have two days of orientation and the first one is next Wednesday. I’m excited to be able to help out others who might be in the same boat we were in. There weren’t any micropreemie parents in the group, and I heard about their four and five pounders born at 34, 35 weeks and wished I knew someone with a preemie closer to LMM’s situation. The world of the NICU is so different from a full term, healthy birth, but within that, the world of a preemie vs micropreemie is vastly different. 

Preemie Christmas Part 12

It’s finally here,  albeit a little off schedule. 
On the 12th day of Christmas, the NICU gave to me: 12 feeds to freedom, 11 silver linings, 10 specialists a-knocking, 9 dads kangaroo-ing, 8 moms a – pumping, 7 monitors chiming, 6 nurses charting, 5 needle sticks, 4 brain surgeries, 3 minute scrubs, 2 blood transfusions, and a micro preemie in an isolette. 
In the NICU, we never said “when is Little Miss Minion going to have her next bottle?” It was always “her next feed is in an hour.” Nicu jargon seeped into our lives so much, people actually thought I had medical training, with my talk of vents and shunts and tpn and csf. 
When things were starting to look like she would be coming home soon, the nurses talked to us about what she would need to be able to do in order to leave the nicu. The easy parts, the parts that she would either do or not do, included passing her car seat test (90 minutes in her car seat without setting off her monitors), a hearing test, going a week without setting off her monitors, and maintaining her body temperature without the help of the isolette. The big one was that she had to drink all of her milk by herself for about three days. 
From the time she started getting milk, she took it via a thin, flexible tube that went from her nose to her stomach. When she started taking bottles, it was very tiring for her, so they would give her a little bit from a bottle and “gavage” the rest through the tube. As she got better at drinking from the bottle and her mouth muscles got stronger, she took more and more at each feed. 
In order to leave, she would have to drink all her milk by herself for 24 hours. At that point, they would pull the tube. If she could keep it up for two additional days, or 12 feeds, she would be out the door. 
About a week before she was actually discharged, when we were playing a game of “so close, but not enough,” she pulled the tube out herself. The nurses decided to leave it out and see if she still needed it, which she did, but for those 2 hours, we could see her face without nasal cannula, without tubes, without duoderm tape on her cheeks. We had seen her face without some of these things when they would redo the tubes and tape, but never all at the same time. She looked like any other baby, even though she was almost 3 months old and only 5 pounds. We could really see her face, her expression. It was wonderful.  

Preemie Christmas Part 11

On the 11th day of Christmas, the NICU gave to me: 11 silver linings, 10 specialists a-knocking, 9 dads kangaroo-ing, 8 moms a – pumping, 7 monitors chiming, 6 nurses charting, 5 needle sticks, 4 brain surgeries, 3 minute scrubs, 2 blood transfusions, and a micro preemie in an isolette. 
The thing about the nicu is that it makes you appreciate things you wouldn’t normally think of as a new parent. Things that most parents probably take for granted. Here are my top 11 silver linings. 

11. The fact that there is a special team in the operating room just for your baby. This means they have a fighting chance. 

10. You will congratulate every pregnant person you meet on reaching term (37 weeks).

9. Being in the nicu gives you 24/7 access to medical advice. 

8. Hearing your baby cry. Babies on ventilators cannot cry. 

7. Cares. This is the time of each day when you can interact with your baby. Every three or four hours, the nurses will open the isolette and you can take your baby’s temperature, change the diaper, and see her without the thick plexiglass between you. 

6. Farts. Getting excess air out of the intestines means its easier for your preemie to breathe. 

5. Getting to see (not touch) your baby. After a quick kiss in the operating room, I had to wait several hours to see her again. I’ve heard of other moms who had to stay in the ICU for several days, unable to go to the nicu. 

4. Taking care of your baby. Changing diapers, taking temperatures, arranging the baby back in their Snugli. The nurses will have to show you how to handle all of the equipment.

3. Getting to hold your baby. Sometimes it takes hours, days, weeks, it even months until they are stable enough to be touched. 

2. Getting to leave the hospital as a new mom, even though you can’t bring your baby with you. Preeclampsia/eclampsia is one of the biggest killers of new moms.

1. Getting to take your baby home from the hospital, no matter how long it takes for you to leave. You’ve watched countless other parents take their (giant) newborns home, and now it’s finally your turn. You’re waiting for the nurses to come get you and say they made a mistake. You don’t really believe it until you are home.

Preemie Christmas Part 10

Having a cold can really derail things. 

On the 10th day of Christmas, the NICU gave to me: 10 specialists a-knocking, 9 dads kangaroo-ing, 8 moms a – pumping, 7 monitors chiming, 6 nurses charting, 5 needle sticks, 4 brain surgeries, 3 minute scrubs, 2 blood transfusions, and a micro preemie in an isolette. 

Preemies are often “followed” by various specialists in the nicu. Depending on their specific health concerns, some babies could be followed by several doctors in addition to the normal neonatologists. 
Little Miss Minion had a very diverse medical team looking after her during her 3 months, so get ready to meet them! 

1. Neonatologist: a doctor who specializes in preterm/newborn babies. These are the main doctors of the NICU. Every baby in the nicu is followed by the neonatologists. 

2. Respiratory therapists. These people are assigned to babies who are using any kind of breathing assistance, whether it’s a ventilator, CPAP, or cannula. They come in periodically and check the settings, adjust hoses, and generally make sure that everything is working perfectly. 

3. Physical therapists.  Even in the nicu, physical therapy is a big deal. PT is there to create a plan to keep baby’s muscles developing properly. Babies in utero have the resistance of the womb to push against, while “outside babies” have nothing but the special beds of the nicu, which aren’t quite the same. PTs are also the main players in keeping the baby from developing a flat head and/or torticollis, which is imbalanced neck muscles. 

4. Occupational therapists. This one threw me a little at first. What could a Preemie possibly need with occupational therapy? Turns out, they serve a pretty important purpose: setting the plan for baby to learn to use a bottle. Many preemies find bottle feeding to be easier than breastfeeding, Little Miss Minion included (see my previous posts about the joys of pumping). The occupational therapist determines the best position for each baby to feed in, the size of bottle nipple, and they pin point the stress cues that each baby exhibits during a feed. Little Miss Minion was fed by “pace feeding,” which is when the baby is propped up like they are sitting in a chair and the bottle is only slightly inclined. This allows the parent to control the flow of milk. She used an Ultra Preemie nipple for several months before graduating to the regular preemie nipple, and then FINALLY the regular newborn nipple. 

5. Opthalmologist. This is a medical eye doctor. Many micro preemies develop ROP, or retinopathy of prematurity. This doctor’s job is to monitor eye development and see if ROP is occurring or if other issues are happening in the eyes. 

6. Pediatric neurologist. This is a doctor who specializes in the workings of the brain. They make sure that the brain is functioning correctly, that the messages are being transmitted and received. This doctor can easily be confused with…
7. Neurosurgeon. This doctor also specializes in the brain, but in the physical function of it. In Little Miss Minion’s case, the neurosurgeon monitors her hydrocephalus and makes sure her shunts are working. 
8. Lactation specialist. This is a person trained to help new moms breastfeed or pump. 

9. Nicu follow up team. This is a group of nicu personnel who test and measure the progress that the preemie makes once they graduate the nicu until they turn 2 or 3. 

10. Pediatrician. This is the doctor that the preemie will see once they graduate.