Baggage of a Special Needs Mom with a New Baby

As I imagine most first time parents are, when Cyrus was first born I was a nervous wreck. I remember being discharged from the hospital with a four-day-old baby and just getting slammed with the horrifying thought that I was completely responsible for this helpless child. 

I remember being so anxious much of the time. I’m certain that sleep deprivation and crashing hormones contributed. I had nightmares of discovering him not breathing, I would start awake and rush to his bassinet or crib, and mostly succeeded only in ruining his or my husband’s sleep.

The first time I was driving with him in the car, I saw all the other cars on the road as potential assassins! I constantly evaluated how I would maneuver the vehicle in the event of a collision to minimize the impact to the rear and side of my car to protect my infant son. 

I worried that he wasn’t eating enough, and then when he started spitting up constantly, that I was feeding him too much in my anxiety that he might not be getting enough.

Eventually, as the days passed without major incident (and the hormones leveled out), and the intense anxiety gradually lifted, I learned to integrate the motherhood roll into my being and function as a regular person again.

Now with Eliana, I have found that my post partem fears have taken a different form. Her movement is often jerky and random, often with her hands floating out in strange patterns in front of her face. And it looks so familiar – it looks exactly like how Cyrus moves his hands and arms randomly at times. And I have to remind myself, no, your daughter doesn’t have chorea. Your son has chorea, which makes him move like an infant. Your infant daughter is supposed to move that way. It will fade as her basal ganglia develops.

And if you move her too quickly, both her arms will extend outward dramatically all at once. And without thinking, my mind instantly jumps to infantile spasms! No, your daughter is not having the infantile spasm seizures. This motion is called a startle reflex. It happened because you startled her. And it’s rather adorable. So calm down. 

Her lower lip starts to tremble or quiver at times. That’s not a seizure is it? And it really doesn’t look like one, and if anyone would be able to recognize a seizure, it’s me right? Like I’ve learned to identify any and all of them (except absence seizures. Those are tricky!) because Cyrus has had all of them at one time or another. But it’s like I simply can’t help going there!

I have been asked a few times if she’s healthy, both before she was born and since. I’m not sure if this is a common question – I don’t remember being asked this when I was pregnant with Cyrus – or if it’s a reaction to the fact that they know I have a son with special needs. I always hedge in answering the question. I tell them that she doesn’t have ADSL and that she has no chromosomal abnormalities. I can never bring myself to say, “yes, she is healthy” because I don't know and I can't promise that.

But I still look for reassurances myself. She’s ten days old and already has better head control than Cyrus. She is loud and is incredibly quick to communicate her displeasure and needs, whereas Cyrus has always been remarkably (maybe impossibly) calm and chill. These are signs that she is developing normally and is healthy. 

But I also know better than most what it’s like to be the one in a million with the disorder, and that there are absolutely no guarantees. I want to say that she is healthy. By all standard observations and standards, she is! But I can’t truly know. 

I can only love her.

General Update: 

Eliana and myself made it home exactly a week ago on Friday. She is currently ten days old. She is really good at eating – she brought in my mild supply so fast and started putting on weight even before we left the hospital, which we were told was uncommon. She is also good at sleeping, sometimes giving mom a whole four hours in a row of respite. I think the plentiful milk supply may have something to do with that. She initially hated being burped (it interrupts her feeding!), but has since learned to trust that the process actually makes her feel better. Diaper changes are the absolute end of the world apparently. I especially enjoy watching her right after she has eaten and stays awake because her eyes are open and actively taking in everything around her. She seems positively riveted. And the awe in her face is just amazing to watch. 

Cyrus came home from the hospital the day after we did. His pneumonia has mostly cleared as far as we can tell, though we’re still doing breathing treatments at home. He has returned to all normal activities, including attending school, and he has been in the best of moods overall. I think being trapped in a hospital bed when he was starting to feel better made him restless and angry. When he gets floor time now, he is smiles and giggles most of the time! He apparently is also a great sleeper and has amazingly not been disturbed at all by his sister’s night time meltdowns. His seizures have been kind’ve all over the place without a pattern where one day he’ll have none and the next he’ll have five pretty significant events. I hope it will settle soon.

Mom and dad are both sleep deprived, but it feels like we’ve turned a major corner. Kyle says that “Today? I am human again.” And I personally feel less like I was hit by a truck, and more like I just ran a marathon. I have gained a lot of my mobility back, and most of my pain is in my breasts from too much nursing and less in my surgery incision, which is starting to just feel sore. We have felt remarkably supported by family and friends who came to keep Cyrus company in the hospital, or afterwards to take care of me or help with the children in these first few days of recovery.

We know we’re on a rollercoaster as we settle into our new routines. But it’s a rollercoaster that we are excited to be on. 

When You Can't Be There...

Cyrus was hospitalized for the very first time when he was two weeks old. He had a case of infant mastitis – which was bizarre but not really life threatening. He was only hospitalized because he need to get antibiotics through an IV because he was too young to take them orally. 

He probably spent three total days in the nursery with all the premies, where he looked huge in comparison. We called him the King of the Babies! During this time, I did not leave his side. It didn’t matter that I was exhausted and still recovering from a c-section surgery. And honestly, I don’t know if he needed me to be there, but I needed to be there.

There were so many tiny babies that had no one with them. And that just made me sad. I didn’t know their stories. I didn’t know if they had been there for a day or three months. I didn’t know if their families had to work, were taking care of a twin, were physically incapable of being there, or simply needed an emotional break. But I remember being grateful that I could be there. That he didn’t have to sit in the hospital alone. 

And when he was hospitalized again at four months, and then again, at six months, it was the same. I was always there! And more experiences in the hospital emphasized that this was a good thing in my mind. Because nurses are in and out because they are taking care of more than one patient. They aren’t going to catch every seizure, they don’t notice a change in behavior that indicates something, and if you’re not there you don’t get to participate (as effectively) when care decisions are made. Like if you miss the moment when the team does rounds, you won’t get to participate in making the care plan. And it may take you hours for the resident to come back and tell you want the plan even is (though nurses usually know what is going on, they don’t always).

But when Cyrus went it for surgery last July, I was exhausted. I knew at that point that I was pregnant. I had my own doctor’s appointments to go to while he was admitted. And I also knew that hanging out at a hospital meant I was more likely to get sick, which was more dangerous for me, and for my soon to be daughter, in my physical condition.

I simply couldn’t be there are often as I wanted to be, and I let myself go home to my own bed to sleep. (Probably a good decision). I have to say it is an absolute luxury to be able to walk away and know that the nurse caring for your son knows how to handle g-tubes and seizures, and has a whole friggin’ team at their back if something should go even slightly awry. 

I remember arriving though one morning around ten, and Cyrus’s was completely alone in his cage like crib, and the television was on playing the movie, Cars, loudly with the speaker at his head. His arms were thrashing around in agitation, while he “yelled” out his displeasure, and his leads were pulling at him in every direction. 

And it was just so sad. I had no idea how long he had been this upset, or if anyone could have recognized him as upset in the first place (his upset is pretty mild compared to most children). And I know that I told the night nurse the day before that he was nonverbal and cognitively more like an infant, but I have no idea if that message got passed along to the day nurse with all the medical things that need to be shared in a limited amount of time. They may not have realized that the movie blaring into his ear would definitelynot hold his attention, and could from a sensory perspective, irritate him immensely. 

I held no ill will towards the nurse. I just felt so bad for not being there sooner. Because hanging out in a hospital room by yourself sucks. Especially, when the people who do occasionally visit you, don’t know you or your preferences at all. 

Cold on Monday

Cyrus caught a cold last Monday. And Monday night things got worse with high fever and rapid breathing. But by Tuesday morning he seemed to be doing way better. We took him to the pediatrician anyway. His O2 levels were a little low and he was definitely congested, but his lungs were clear and his fever had broken. We were sent home with standard “drink plenty of fluids and watch for these things.”

But over the next two days, he really didn’t seem to get any better. He slept a lot, and would wake up only around 4 or 5 pm after sleeping all night and all day. During that time, he did seem active and engaged – irritated and fussy. Just enough, that I would assume he might be getting better, but then the next day would be the same.

On Thursday, we took him back to the pediatrician. He was looking pale and his O2 levels had fallen down to 84. (Generally, you want them to be like 97+, and when you’re sick and congested going down to 92 is considered acceptable. 84 is low). She gave him an albuterol breathing treatment that initially seemed to help, but once the treatment was over, his levels fell right back down.

So off to the ER we went! He was put on oxygen and got more breathing treatments. His levels came up again, but as soon as the support was removed he would crash. So, they admitted him. And Cyrus is in the hospital once again. 

Pediatrician on Thursday

He showed remarkable improvement over the first two days, but then on Saturday suffered a setback as he appears to have developed a secondary infection and his cold has now turned into pneumonia, and was elevated to ICU care. He has since improved again, but it looks like he’s going to remain in the hospital for much of this week.

And as of Tuesday, I will no longer be able to visit him at all.

And though the reasons for that are exciting – we all finally get to meet Cyrus’s sister! – it still kills me. It has been incredibly hard for me to accept. Especially because some of these breathing treatments seem rather traumatic for him. (The cough assist is no joke! It forces air in and gives him puffed up cheeks, and then pulls it back out so hard it makes his tongue stick out).

I am very aware that it’s only been Cyrus for the last four years, and that now we will have to readjust and find a new balance with our growing family. And if we’re being thrown into the deep end in having to figure that out, well, it certainly isn’t the first time.

I am also aware that I am not the only person in Cyrus’s life that cares about him. And I am so grateful that both friends and family have volunteered to come visit Cyrus while I am unable to do so. And that my husband will be able to split his presence to some extent.

Perhaps, it is the vanity of a mother to think that no one can be there for him as well as she can. And perhaps, this is an exercise in learning to let go, to trust others because I need to find a better balance. I need be better at building in actual respite in my life to keep doing all this. 

But when you can’t be there… it still emotionally sucks! 

ER on Thursday

Dinosaur Nebulizer. Be jealous of how cool I am!

Feeling a bit better!

And Being Cute

General Update:

You read the post! Cyrus has pneumonia and is in the hospital. But is much improved and is currently stable. He’s been very sleepy today, but has also had short periods of alert wakefulness. He’s even smiled and laughed a few times. Seizures have been way lower during this week (probably because he’s sleeping so much), but you have to appreciate those small wins.

Sleep time! 

The cat has been on insulin for almost two weeks and she is doing way better as well. Her blood sugar levels have cut in half, and she’s been so much more active! She was even playful yesterday evening. I haven’t seen this behavior from her in months! I guess I thought she was just getting old, but apparently, she was just an untreated diabetic.

Our home is like 95% prepared for a new infant. Cribs, diaper bags, and carseats have been prepared. Floor space has been created. And the fact that all of this happened with everything going on is a small miracle (I blame c. difficile). Thanks c. difficile. I still don’t like you! 

And I’m headed to the hospital on Tuesday for a planned C-section. Will likely be there for the following four days, but will hopefully be able to post a birth announcement soon! It may be awhile before all four of us can be together though for a full family picture. But it will definitely happen! 

Cool vibrating vest thing. He seems to like this one.  Not a fan of the  nebulizer and HATES the cough assist.

The other upside to illness is that when he's finally feeling better, he just loves everything!