We are rarely asked about this topic anymore, but still I wanted to explain further (I have mentioned it here and there on the blog before) why we don’t have a nurse or two that helps us with Emma so Michael can work full time like he used to, or so we can go on dates, etc. And I will admit this portion is going to be difficult for me to word in a really positive and upbeat way since I felt like we kind of had a negative experience with it.
Michael and I knew right from the beginning that we didn’t want home nursing. Emma had been in the hospital for almost 11 months and we felt knowledgeable with her care. We had spent many months doing her baths and trach care on our own (Michael and I together, but without a NICU nurse helping us, simply watching), moving her in and out of her crib, all while she was hooked up to her many machines, most of which we would be bringing home with us. However, with the suggestion of at least trying out Home Health, knowing we could cancel them later if we didn’t like it, we met with a woman a few weeks before Emma’s “graduation” date and she came to our house to make sure it was a suitable living environment and all that.
The first night, on April 30th2018, the nurse was nice, but it was hard for us to sleep because she was watching a show on her iPad. I definitely wasn’t upset by that because if I had nothing to do all night while a baby was sleeping, I would get super bored too. But every single time Emma made a small cough, the nurse would suction her, which of course woke us up because that machine is so loud. Plus, it was totally not necessary. Emma should only need to be suctioned maybe ten times per day! She rarely needs to be suctioned at night unless she gets water down her trach, which did not happen that night. I think Michael had his alarm set for 1am and I had mine set for 4am (or vice versa) because Emma was still getting weaned off some meds for the next four weeks. We didn’t tell the nurse about the meds. We wanted to give those ourselves. And I made sure to label the amounts and the times on a sticky note taped to the correct bottles while my brain was functioning because I knew I wouldn’t be able to figure it out in the middle of the night. Anyway, so when we went to give the meds, while being half asleep and eager to get back to bed, the nurse was excited to have someone to talk to and would quickly strike up a conversation.
Several thing we didn’t like:
1. One girl came to our house two nights in a row with a cough. She said she was fine and not contagious and that she got checked at the doctor. She said she would wear a mask and gloves (pre-Covid), but if you need to do all of that, what makes you think we want you around our baby who has all these lung issues already.. and she just came home from the hospital after 11 months??!!! So I called the supervisor and the girl left within 10 minutes both nights. We asked to have that girl taken off of our schedule and that we didn’t need nursing at night.
2. Only one of the nurses was fine with our small dog being in the house. So not only is our dog now not allowed (by us) in certain rooms because of the “new” baby, but now she can’t come in the house at all between 7am and 7pm? Which of course caused her to bark at the door ALL DAY.
3. We didn’t like the early schedule because Michael and I had to take turns waking up early, showering, getting dressed, and being up to unlock the door for the nurse at 7am. While Emma continued to sleep until 9am. Emma came home on a Monday and by Thursday I think we said we wanted our nursing schedule to be from 10am to 6pm.
4. I felt like these nurses were more for regular babies, not medical babies. One morning Emma’s G-tube came out all of the way, back when her stomach stoma was prolapsed, so her insides were pushing out of her body!! And the nurse said, “Oh I’m glad that happened before I got here because I can’t do anything with that.” I immediately turned to Michael and gave him a look with my eyes wide like, “Then what is the point of her being here?!”
5. We had to explain EVERYTHING to them, which is again understandable when they have never met her before, but annoying. And we had a new nurse almost every day, so we had to keep repeating so many instructions about her care when it was stuff we already knew how to do. So constantly we just kept thinking, what is the point of them being here? Why don’t we just do it ourselves?
We went on a walk after the nurses left and he started talking to me as if he had something to tell me, but he felt bad saying it. He told me that he didn’t want nursing anymore and that he would rather work part time and only have us take care of Emma. I exclaimed, “Oh my gosh, man! I’ve been thinking that since the first day, but didn’t think you wanted that!” We were super in love in that moment!! I called the supervisor the next morning and told her we had talked and decided against home nursing. I said it wasn’t for us and we felt much more comfortable taking care of Emma ourselves. She told me she needed to come to our house again so I could sign a form in person, which I did.
We have only left Emma one time since she came home. It was when Michael really needed to work on a weekend that I was working, and I couldn’t get the weekend off because it was shortly after I went back to work after my “Emma is Home!” Maternity Leave, so I was out of vacation time. So Billie, who was one of Emma’s primary NICU nurses for many months, was able to baby sit for those two days from 8am-6pm (something like that). That was in September 2018, but nobody has babysat since. She did a great job- nothing went wrong at all! I think Billie really enjoyed the Emma snuggles and I loved that she sent us pictures throughout the day, but Michael really hates one of us not being there with her. We wanted this baby, it is our responsibility to take care of her. And I support that family motto he has always had. & I’m not saying anything against parents who do get a babysitter. I actually cried one night a couple months ago about how Michael and I haven’t gone on a “just us” date since we were in Michigan, it feels like.
We have also heard too many horror stories (via Trach Moms Facebook group) of all the bad nurses who sleep on the job or abuse kids, or the child’s trach comes out and somehow the nurse cannot get it back in and the child dies while the parent is at work!! I know there are probably a lot of great nurses who aren’t mentioned, but Home Health is just not for us. Yes, Michael wishes he could work full time still and yes, I wish we still made as much money as we used to, but that is not possible for us. We do what we need to as we have for the past year and a half. Also, I later learned that our insurance (because of the plan/ version my job picked for Home Health coverage) only covers 60 days of this service per YEAR anyway, so if we even really had it, Michael could only work full time two months out of the year.. makes me wonder if nobody at my job has ever had a kid with medical issues like this?
In June 2018, someone, maybe my mom, brought up the fact that we were still waiting to be contacted by Early Steps who would be the therapy company to come to our house and do therapy with Emma. I called the NICU, since they were my contact source, and they told me that when we canceled the Home Health company, we also canceled therapy. We were never told that the Home Health company nurses were also supposed to be her therapists. We had the nurses for six days and they neverdid any type of therapy with her, nor did they ever mention it. They barely did more than sit in the chair in the living room and watch us take care of her, since that is what we wanted to do. I quickly pulled out my copy of the form I had signed for the supervisor in May and read it a couple times. It did not mention anything about that or I wouldn’t have cancelled. Emma definitely needed (and still needs) therapy!
So we had to go back to the pediatrician with new forms for Early Steps and ask him to sign and resubmit them. At the end of August 2018 we finally met Grace, and Emma had her first physical therapy session at the house. Skipping ahead now.. Emma’s last therapy session was in March or maybe April? They were going to end in June anyway since Early Steps ends when the kids turn three years old and then they get turned over to the school system, but for us, especially with Emma’s developmental delays, we weren’t planning on putting Emma in school until she is at least four (so starting next August). But now if the Corona Virus is going to keep lingering and spreading for another year, then we don’t want her being in a school, catching germs during a pandemic!! So we definitely wouldn’t have her start until she is five. However, my friend Lindsey has been sweetly reminding me that kids learn so much and their brains absorb the most information in the first five years of their lives, meaning we need Emma to learn as much as she can in the next 19 months, before she starts school!!
Here are the first few paragraphs from an article in The Huffington Post: The First 5 Years Of Your Child's Life Can Shape Their Destiny. The birth of a child heralds many new beginnings. Each day is a first. Every second is precious with each building towards the development of an entirely new person. With their own particular set of emotions, opinions and views. Your baby is a human being capable of independent thought, but in the first five years of his or her existence, the responsibility to shape that capacity lies in the hands of the parents. Consider the numbers: Babies are born with more than 100 billion nerve cells in their brains. Learning occurs when these nerve cells, or neurons, connect with each other through synapses. By the age of five, 90% of the brain's capacity has already developed. A child's brain is more receptive to learning during the first five years of his life than at any other point in time. What's most relevant here is that the brain is most plastic or flexible in the first five years of life. The more you exercise different areas of the brain in the early years of development, the more lasting an impact it will have on their learning ability. Think of your child as a sponge -- they will absorb all possible information around them at amazing speed. Which is why it's imperative to create an exciting and challenging environment for them. These first five years will form the fundamental building blocks of their future health, happiness, growth, development and learning achievement in school. This is also the time when they will learn how to interact, how to build and maintain social relationships. What they experience today is what they will exhibit tomorrow. So how do you manage to do this to the best of your ability? How do you make sure that the environment you create for your child is challenging enough for him or her to realize their best potential? The key is to maximize the learning capacity of children in their formative years through mental stimulation, attention, encouragement, love and good healthcare. Expose your child to different activities to help them activate synaptic connections to maximum areas of the brain. This will allow children to acquire new knowledge, learn new skills, and set and achieve goals for themselves. Many early learning experts view learning via eclectic activities as one of the most important domains of early childhood development. But there are also a few points to keep in mind before embarking on this adventure. Do remember that each child has his or her own learning curve. They tend to develop at their own pace even if they grow up in the same environment. While interacting with children, it is important to understand subjective growth curves. Each child will take a different route for maximized learning. This means that often as a parent or teacher you will have to use different learning methods and customized curricula depending on their learning curve. The easiest way to do this for parents and teachers is to actively engage a child's curiosity. All those hundreds of questions a child keeps asking -- those are the moments when a child's brain is developing. Answering those in a satisfactory manner -- not only addressing the question but also encouraging them to think further and ask new ones -- should be a parent's or teacher's aim. Alongside interacting in a way that rewards and boosts their curiosity, also let them explore their surroundings as it encourages creative play and positive behaviour.
Back to my own Rachel blog words now: I was determined to get Emma back on therapy, but it seems harder than I thought. Hospital Homebound, the company we were told about in February, won't do therapy at home unless she is already joined in with a school, but we don't want her in school yet, and we don't know where she would be zoned for and she'd have to be in a special class for kids with medical needs, etc. (That just seemed like a confusing, unorganized mess when I was making those calls.) So I called TLC since all of the therapists who worked Emma before had worked at TLC through Early Steps, but not for Early Steps, if that makes sense. Long story short, I found out last week that we can't use them, unfortunately, because my insurance doesn't cover them even though they were in network with Early Steps, and we already have to pay so much out of pocket every year. And when I was looking up occupational therapy companies "near Orlando" for my insurance, the closest ones were in Tampa! What the heck? So I guess I'm on my own. Anyway, I've been looking stuff up on Pinterest lately, so here are pictures of my trial and error games to see what works and what doesn't with Emma. These first pictures are from Monday, October 26th. (I wrote this nursing rant that morning too, but didn't have time to get all of the pictures off my phone until today which is why it is only getting posted now. And the only two "funny" notes I have about the nursing stuff is: 1- one time there was a new "alarm" that sounded and the nurse perked up, looking around and asked what it was. I replied, "That was the stove saying it's done preheating so I can put in my frozen pizza. And 2- the nurse's only "job" one day was to switch out the DVDs each time we finished a disc for the show we were watching. Thank goodness she also really liked The Office.)
She did not know what the heck she was supposed to do with the toys on the fridge and crawled all the way to the front door instead!!
New sensory ball from Dollar Tree that I wiped down with a Lysol wipe. She's really good at throwing this one to us in a variety of different ways! :)
We got her a few of those house puzzles for Christmas, or maybe they were from Michael's mom? She doesn't understand putting puzzles in their correct spots yet, even when we help her, but she loves throwing the pieces. She did do a really great job with the muffin pan though and getting the tape off of the balls and bugs.
"Good reaching!!"
Another new toy that I wiped down. Doesn't like being taught how to stack them, just loves the throwing part.
Since Emma was six months old I try to get her to hold a marker and color on paper, and when she had Lisa for occupational therapy before, she would try to get Emma to actually hold a pen-like object (she sometimes used a reusable
erasable board) and would make Emma hold the pen while she sang to ten before letting Emma throw it. My cousin Jessica is often working from home selling things on Facebook, specifically Norwex cleaning products, but also sometimes during the holidays she sells books from a company called Usborne. They have giveaways and I was surprised that I won one and happy that it was one that I thought Emma could use:It was a great no-mess book where all you have to do is dip the paint brush in water and the color appears on the page on its own. But Emma seemed to want to rip the pages out, so I took the book and "painted" this one witch page on my own, then after it completely dried, I put the book in the closet. We will try again next Halloween.
I told my parents that I should have dressed her up as Dora the Explorer for Halloween with all the scooting around the house she has been doing since October! All the more reason for her to be sprinting more often. She did do an hour and a half this morning and a second hour this evening, and zipped through the house from the dining room down the back hallway in what felt like less than two minutes. I already was talking to Michael about a Pixar themed family costume that might not be too difficult for us next year. Or at least for him, with the new sewing machine that he got for his birthday. Any guesses? :)
As a joke I was trying to recreate this photo of my cousin Jessica and her kids, although I had to use toys in place of extra children since I only have one kid, and because I waited three months to do it (her photo was from July) she didn't notice my effort until I specifically told her about it the other day on her birthday. I even copied her exact Instagram caption! Oh well. 
I love these!! And I love how, even though she can't talk yet (and we don't know when she will be able to), she has the ability to express herself. And I love that she is so silly and laughs a lot, even to herself. 
Matching sweaters that I got for us, as part of her early birthday present!
Note: my mom representing Blood Widow!! So another way Emma was able to communicate without being able to talk- being crabby about not wanting to get her hands in the paint and we figured we wouldn't be able to make fun spiders like I saw on Pinterest, so we just did a paint sensory thing instead. Of course, right after Halloween, Pinterest showed me a much easier spider craft of simply tracing the child's hand instead. Where was that all of October, huh, Pinterest!?
