A Two Year Old and Glasses

Well it’s official, Little Man now has glasses as of last night. Less than 24 hours and they are already broken!

Let me start from the beginning. Last week on Sunday Little Man started squinting for brief periods of time and it continued Monday so we called his neurosurgeon. My thoughts, as with everything with him now, went straight to it being pressure related and it must be related to his Hydro. The nurse over the phone said it sounded like he might have something in his eye to go to the eye doctor (I then got a brief lecture on us not having one already) or his pediatrician. Since we didn’t have an eye doctor we booked an appointment with his pediatrician for the next day. Tuesday morning he saw the pediatrician and they did a quick eye test with a funky camera. Turns out he is really farsighted in his right eye (the one he kept squinting) but his left eye is good. They referred us to an eye doctor.

He sees the eye doctor who confirms he is farsighted and astigmatism in his right eye. We get glasses ordered and are told once they come in we need to patch his good eye once a day for an hour.

His glasses come in and get picked up Wednesday after work. He has about an hour of wearing them at home doing really good. He even got upset when he couldn’t sleep with them on. Next day in the morning he is ok with wearing them but has a few times of not wanting to. Talk to daycare about him wearing them other than nap time and give them the case with the cleaning cloth and for them to be placed in during nap.

Pick Little Man up and find out his glasses are already broken! I’m so upset I’m not able to fully understand what happened (there is a slight language barrier with his teacher but not much) and only understand one kid was trying to pull them away and he would take them off to play because it looked like they would fall so he just took them off and would set them down next to him.

I know we need to get a strap but I really thought he could make it a few days at daycare until we could pick one up over the weekend. Luckily since it’s the frame that broke they are covered by warranty for a small price but we won’t be able to get the new frame until Monday. So he has 3 days, 4 if you count Monday since he won’t have them until after daycare, without them already.

I have no idea how to prevent them being broken constantly at daycare if getting him a strap doesn’t help. They want him to wear them unless he’s asleep but I can’t afford to keep buying glasses because I doubt the warranty will cover multiple pairs.

Tough Terrain

In my last post or two I talked about Little Mans shunt being stuck at a 6 and doing a follow up MRI in 2 months. His MRI is tomorrow, but last night he got sick. A week ago he started vomiting at night and of course as always my brain went straight to shunt problem. He ended up with diarrhea as well so we took him to his pediatrician and they didn’t see any neurological concerns so went with stomach bug and prescribed something for the vomiting. He did his nausea meds for the 3 days and his stomach had gotten better, no more vomiting after that and diarrhea cleared in about 3 days. With him getting sick last night I can’t help but think it’s too hard to believe this could still be a stomach bug a week later.

Being 2 and vomiting at night means it’s in the bed and on him so 1am bath time. Little Man has a thing where when I get him out of the tub and wrap him in a towel I hold him up in front of the mirror and say look at my clean boy. This morning, I was tired and wasn’t thinking about it. He however was and said mirror, so I obliged and when I said it and he started to smile then giggle I couldn’t hold it in. The tears flowed and my thoughts went to my baby boy enduring another brain surgery. I can’t help but worry that if he’s at the point of vomiting damage has been done. Hope that it’s something that can be fixed without permanent damage if that is the case, but until I see his MRI results tomorrow I’m going to be one stressed, worried, paranoid mama.

And then we were four

We had always planned on having two kids. When we had miscarriages before having Little Man and then the stress/paranoia I had the entire pregnancy we were thinking of about a two year gap before trying again. Once he was diagnosed with Hydro we started to think maybe we should wait a little longer.

Before Little Man turned two we found out I was pregnant again! Looks like our original plans decided to stick.

Sissy was born on what was Little Mans due date! Both pregnancies had similarities and differences. With Little Man I had practically no morning sickness, and had an easy pregnancy up until developing preeclampsia. They induced me early with Little Man because of the preeclampsia. With Sissy, I had morning sickness, and midday sickness, and evening sickness. It was miserable and they ended up putting me on a medication for it. I was also put on low dose aspirin at 12 weeks to help with my blood pressure since I had preeclampsia last pregnancy.

I developed polyhydramnios. An excess amount of amniotic fluid. Due to this I started to get more frequent appointments and ultra-scans to monitor my fluid levels. With the extra fluid my belly seemed to be getting bigger faster and a whole lot more stretch marks. I started to wonder if I was going to end up in the hospital early again.

I also had a few times my BP seemed high and called the dr. They had me go to the hospital and turns out buying one of the cheaper BP machines was the problem. The numbers did not match what the hospital was getting. My next appointment I took it with me to compare and it was the machine. I bought a better quality one and all was well. For a bit. It started to rise and they wanted to do a 24 hr collection to test my protein levels.

Between both the polyhydramnios and my BP starting to rise they were doing the 24 hr collection but also decided to go ahead and schedule me that week for induction.

Little Man was induced at 34 weeks, Sissy at 37. The second time went MUCH faster. Turns out I was already having contractions with Sissy and had no clue! I thought she kept pushing down into my hips and it was her causing the discomfort. When they started monitoring me at the hospital they asked how long I’d been having contractions and when I said I haven’t had anything they asked what I just felt!

They broke my water (turns out with a high fluid level you can “flood” the bed). Sorry if that’s TMI but you choose to keep reading a pregnancy related post! Then I was able to be moved to labor and delivery where I assumed I would be a while as I was with Little Man. I was wrong and Sissy was in my arms the same day!

During delivery my epidural worked so well I couldn’t lift or move my right leg at leg. Due to this the nurse had to help me hold it up when it was time to push and I couldn’t get out of the bed for a little bit since I couldn’t put weight on it.

They checked Sissy out and my heart sank when they said they were going to keep checking her because her breathing was a little off and it seemed she swallowed some fluid on the way out. I was not ready to have my baby girl be sent to the NICU. I couldn’t go through that again. I don’t remember if we waited in labor and delivery room for an hour or how long, but waiting for the verdict on her was stressful. She did improve by her “deadline” to determine if she was headed to NICU or not so we were in the clear! She was not going to be a NICU baby. That weight off my shoulders was amazing.

Having her in the recovery room was so nice! We made sure to keep the tv on so she would be used to noise and able to nap with Little Man playing. A few times the nurses asked if we wanted if off so everyone could sleep and we said no. It seemed to do the trick and she sleeps through a lot of the noises Jackson and the dogs make.

When it was time to go home it was like I’d never been through that before. I was a different world being able to go home together. I cried on the way home and I remember hubby asking what was wrong. Nothing is wrong, we are all going home together!

There was no pumping and delivering it to the NICU at each visit. No late nights so we could get a visit in after hubby got home from work. We were home, all of us.

Our family of four, at home, learning our new life.

It’s been awhile

It’s been a long time since I’ve posted here. I’ve typed up a few drafts but never finished and posted them. So much has happened since my last post and I don’t know where to begin.

I guess to keep this somewhat short(er) I will save a lot for a later post. I have some family news and Hydro update for now.

First off, Little Man is now a big brother! Sissy is already 5 months old, going on 6 months. I can’t believe how fast time goes by watching these two grow. He does good with her most of the time, but boy does he have a jealous streak. Most of his jealousy comes when I’m nursing Sissy. He is not a fan of me being “tied down” unable to play with him, and has even told me “shirt on” a few times. He does good helping us with her though and will bring her a blanket or binkie and helps us put her diapers in the trash. He does like to try and claim her toys at times though.

Now to Little Man, so much has happened. As far as his Hydro goes it’s been a roller coaster. We had a point we were given the all clear for 6 months before his next follow up! The latest news however is not as good. He had a MRI check and due the ventricles being dilated (one moderate dilation, one mild to moderate dilation) then dropped his setting from a 6 to a 5 to decrease them. Our follow up for that should have been in October. It’s only August and we’ve had a few concerns. About a month ago he fell back at daycare after a few a his friends and him were chasing each other and collided. He hit his shunt and you could see the abrasion where there were spots of blood like when you scrap your skin enough to draw a little blood but not for the blood to pool at all. Daycare said he seemed out of it after and we picked him up. It was coming up on nap time so I’m sure that didn’t help either but he wasn’t himself. Called his neurosurgeon and they said if he’s not vomiting or showing signs of malfunction not to worry. Two weeks later and he’s started at his new daycare. Monday he’s fine, Tuesday night right after getting in bed he vomits. After that he seems fine so we let it go. Thursday night, same thing. Then he vomits again on Saturday. Since he has no other cold symptoms and it’s been every other day we go to the ER. They do a shunt series and his ventricles are stable from his last visit but his setting is showing at a 6, not a 5. The vomiting is being contributed to the new daycares menu that includes a lot more fruit than he’s used to.

Now our concern is the shunt setting. This is twice that it’s at a different setting than it should be. We have a follow up office visit a week later. They attempt to adjust the setting down to a 5, it doesn’t want to change. After a few attempts I start to worry. Ask if the reason for changing it down to a 5 was to get the ventricles to decrease, yes. That was a confirmation of my fears that I had to ask. They borrow a stronger magnet from cardiology next door to try and get it unstuck. No luck. It will change to a 7, but not drop down to a 5.

They sent him for an X-ray to confirm it is at a 6 after all the attempts at adjusting it. It is so they decided since his ventricles are stable we are going to go for another MRI in two months and go from there. Provided he doesn’t show any symptoms of malfunction it will be a wait and see game.

My stress level is insane wondering what’s going to happen. I also plan to discuss why they are now ok with his ventricles being dilated now and if it’s just to avoid surgery or give the shunt a chance to fix itself and hopefully adjust next time.

Well, I guess I will leave it at this for now and in a few days get a post up about Sissy.

Unexpected chaos

So we have the follow up MRI scheduled for June 11th to find out if the setting adjustment has worked to minimize or get rid of the subdural hematoma. Little Man had an appointment with the neurosurgeon office last week and since he is showing behavioral symptoms or shunt malfunction but there hasn’t/isn’t a malfunction they want him to see a neurologist. I kind of thought the office was one in the same but apparently the office visits we’ve been to are just neurosurgeon visits. Anyway, we got an appointment with a neurologist scheduled but we had to first schedule an EEG to be done before the neurologist will see him.

What on earth do I expect for an EEG for an hour for my 16 month old? It’s scheduled during his normal nap time which they said is a good thing. But if he’s all hooked up to wires I don’t think he’s going to go to sleep as easily as normal if at all. They said it will last an hour but is that in the door and out an hour later or is that the time for the test itself? I have a million questions I want to know.

Has anyone else been through this? Any advice or help with what I can expect?

Subdural Hematoma

Little Man has his MRI yesterday. My concern was his shunt was under draining…. I was wrong. We got some good news, his ventricles have stabilized since he was over draining. The bad news, the subdural hematoma that was caused by the over draining we found in March has also stabilized. It is the same size as it was just over a month ago. Since he’s been falling a good bit, there is also some new blood showing up in it. We were told that hitting his head having the subdural hematoma can cause more bleeding than if he didn’t have it. Little Man has never had a seizure. I know with having Hydro it’s more of a possibility, but she said having the bleeding from the falls to keep an eye out for seizures.

My poor little guy has been through so much and it seems like he can’t catch a break. Yet, he still smiles, laughs and remains the happy boy he is. When he has his moments you can tell he doesn’t feel good it hurts to see him like that. He is such a tough boy.

They bumped his setting up from a 5 to 6 hoping this will help getting rid of the subdural hematoma. We go back in 2 weeks if he’s not back to himself still and having his fussy, grabbing his head, not sleeping good times. The plan is to possibly bump it up to a 7 then and then wait till his next MRI in 4-6 weeks from now to see what’s going on.

Little Man doesn’t do so great with setting adjustments. The change makes him crankier, changes his sleep (he took a short morning nap before the neurologist appointment and still took a 3 hour afternoon nap), and it seems to just bother him overall at times.

I pray that this resolves itself, I’m pretty sure based on a little research that if adjusting the setting doesn’t fix it he will end up having another brain surgery. I’m not ready for another surgery, not that I ever will be. He is so close to making it a year to his first shuntiversary, and I know not everyone makes it that first year but I am really praying he does.

Praying over the next week or two he gets better and his subdural hematoma goes away. Will be back with updates on Little Man.

Mommy Instincts

So we had our visit to the ER from throwing up which led to the discovery of Little Man’s shunt over draining. They bumped the setting up from a 1 to a 5, which we felt was a drastic adjustment. After some talking we understand that was a necessary adjustment to prevent the brain from collapsing any more.

Two weeks ago we had 3 nights in a row that he slept all night! That hasn’t happened since last year when he was sleeping all night every night prior to his shunt being adjusted from a 2 down to a 1. My gut says it’s related, so having those 3 nights and then getting back to waking up crying I can’t help but feel that for those 3 nights the pressure in his head was where it needs to be. Now since the pressure has been building back since the adjustment, assuming I’m right and it hit its “sweet spot” now it’s getting to be too much pressure. He seems to be getting right back in to more fussy times, waking up crying, and not always acting himself.

He even had one night it was so bad poor guy was screaming crying and holding and grabbing his head on and off. To me it seemed like he had a headache.

My mommy instinct says his setting needs to be dropped down, preferably one setting at a time, until we find that sweet spot again.

We had set up a neurologist appointment to discuss this for this morning and his 15 month well visit was scheduled for this afternoon. With terrible timing over the weekend he started with a runny nose and by end of day yesterday he had goop building in his eyes as well as a possible fever (turns out our thermometer isn’t in sync with the doctors office so we no longer trust it).

At the neurologist appointment we went over our concerns and explained his symptoms of pushing/digging at his right ear, starting to have balance problems at times, grabbing at and holding his shunt. A few nights ago he woke up screaming and holding his head like he had a headache and Motrin was the only thing that worked to get past that. The PA said a lot of it sounded like it could be from an ear infection so they wouldn’t adjust his shunt and wanted to wait until he saw his pediatrician before deciding what to do. She said if his ears are good then they will probably bump up his MRI which should be in 3 weeks to possibly next week.

Well, at the pediatrician his lungs sounded good, he does have some cold symptoms of runny nose and eye discharge but HIS EARS LOOK GREAT. No fluid, they are perfect. To be honest I was kinda hoping for an ear infection. It would be easier to handle knowing what it is now and treating now. Instead I have to wait till morning when the neurologist office opens to call and tell them his ears are fine and figure out when they can see him again and get this all figured out.

I feel like this year is going to be a tough one with his shunt. I just pray that it is all setting related and he doesn’t have to have another brain surgery.

I’m so upset, annoyed and frustrated that they didn’t listen to us or take us seriously. They say that the pushing and digging at his ear is a sign of ear infection but both times he’s been to the pediatrician when doing that his ears have been perfectly fine.

There’s a thing on Facebook with Mother’s Day coming up about mom fighter. Moms with kids who have Hydro, fighting for their kids, being there to support them. I feel like today I didn’t fight hard enough, I have to be his voice and I don’t feel like I spoke loud enough.

Right now I’m frustrated with myself, feeling like I didn’t do enough and with the neurologist PA for not understanding.

Shunt Over Draining

We had our follow up appointment yesterday from our trip to the ER when we found out Little Mans shunt was over draining. They adjusted his shunt from a 1 to a 5 while we were there. Today we got to sit down with his neurosurgeon and get a better understanding of everything. Since his shunt has been over draining, his brain started to collapse. He showed us images of the CT scan from his ER trip pointing out where the dark areas(fluid) between his brain and skull was caused by the brain collapsing.

Seeing that image it really sunk in. Little Mans brain had started to collapse, we don’t know for how long and we had no idea it was going on. Hearing about Hydrocephalus and excess fluid on the brain to someone might not seem so scary when it doesn’t effect them, but realizing complications like someone’s brain collapsing might put it into better perspective on how dangerous this condition can be.

Luckily adjusting his setting has led to improvements. The neurosurgeon said that there was a 50/50 chance this would work and if it hadn’t have then yesterday we would have been scheduling surgery. The MRI yesterday shows that on the right side of the image there is barely any gap of white/fluid (backwards colors from his CT) between his brain and skull, the left side of the image is better than it was but still needs improvement.

We are so glad that adjusting his setting has helped and hope it continues to do so without the complication of pressure building too much. We go back for a follow up MRI and neuro appt and I’m nervous he might still need surgery. As a parent never seeing this before my brain is thinking if one side improved so much why didn’t the other, will it continue to improve or will he need surgery? I know the day will come when his shunt will need to be replaced. I just pray it’s so far down the road that by then there will be a better option. With this over draining complication this is a different surgery.

I don’t think a day will ever go by when I don’t worry about when he will need brain surgery again. I don’t think about it all day long but there’s always that worry in the back of my mind and when he does something that may be a sign it brings that worry to my immediate thoughts.

Are you the parent of a Hydro Warrior?

What are your worries?

Our First Shunt Complication

I really need to start trusting my gut more. My concerns about Little Mans not sleeping through the night being shunt related were probably right. After dealing with it for months and other things progressively seeming to worsen we found out his shunt was most likely the culprit.

Last night about 1030 he woke up fussing but didn’t put himself back to sleep like normal. Figured dirty diaper so checked and that wasn’t the case just a little wet. Changed his diaper then put him back down and pat his back to help him settle back down and he ended up vomiting. We got him cleaned up and changed, sheet and blanket changed out and went to try to put him back to sleep again. Same thing, round two this time we gave him a bath rather than just wiping him down. He ended up throwing up a third and fourth time within the hour. By the second time during his bath we were questioning going to the hospital to be safe and check his shunt, after the third time it was decided.

We headed to the hospital just before midnight and the whole ride I was so worried he was having a shunt malfunction and would need surgery.

Went over everything going on and they did a CT and x-rays. After waiting for results for over an hour someone from the neurology department came in and let us know his shunt was over draining. I’m so grateful that he has a programmable shunt, they adjusted the setting from a 1 to a 5 (on his 1 is draining the most, 8 is draining the least) right there. He was being admitted for monitoring and received an IV for fluids since they had him as not allowed to eat or drink at first.

He was definitely not himself, part I’m sure from being up most of the night and being poked and prodded. Poor guys heart rate spiked so high when he got his IV it took everything for me not to cry while he was screaming his lungs out. Luckily my husband was there to help hold him because not doing well with needles I started to get light headed. It was the start to a very long day.

The rest of the day he slept on and off, had to fall asleep in my arms since laying down he would move and get caught in cords. He was given the ok to try eating breakfast around 830 and did fine with milk and Cheerios.

I don’t remember exactly what his neurosurgeon said when he came in to check on Little Man but I will have to ask at his follow up in 2 weeks. It was something about the over draining leading to small droplets of blood from the tissue pulling. After having time to process it has me wondering more questions. What damage can this blood cause and what are the chances? Can it clog his shunt, how likely is that? Is it brain tissue damage or other tissue?

Another concern is what is it going to take to get the setting right? He had been at a 1 for almost 6 months and we had no idea he was over draining so how long will it take to get it right? They said now that he’s older and skull is more fused together it has changed the pressure from when he first got shunted. So I’m afraid it’s going to be a guessing game of trial and error until we get the right setting and no idea what kind of stress that puts on Little Man. His waking up crying during the night could have been his way of telling us something was wrong and we had no idea. Until he can tell us what he’s feeling it’s that much harder to know what’s going on.

To all the parents of hydro warriors I say trust your gut. I’ve read it and heard it, but then when asked or brought up his sleep issues was told it was probably a sleep regression or he just needed to be sleep trained. After all that my concerns were legit and I pushed them aside not wanting to be the over paranoid parent. You know what, as hydro parents we have that right. We need to be over paranoid that any little thing can be a sign or symptom we need to look into. Don’t make the same mistake I did and let it continue until something else happens. Check it out.

Well, for right now that’s all I’ve got to share. I’m exhausted and hope we all sleep good tonight. Thanks for taking the time to read this.

Sleep Training Results

So it’s been awhile since I’ve posted. Our first round of attempted sleep training failed. One thing we seem to have learned is our boy does things when he’s good and ready not when we are. It probably didn’t help that while attempting this the first time he ended up catching hand, foot and mouth disease. We gave up but a few weeks ago tried again. This time it went much smoother and was a success. We no longer cradle and rock him to sleep. He gets pjs on, teeth brushed then curls up with a giant stuffed elephant on our bed for bedtime stories. After his final story we lay him in the crib, pat his back for a few minutes until he starts to fade, then he’s on his own falling asleep the rest of the way. It only took I think 3 or 4 nights before it went perfectly smooth, but those first nights were not bad and nothing compared to the first time we tried to break the cradle and rock to sleep habit.

Sometimes if at first you don’t succeed take a break before trying again. Some kids don’t do so great when forced to change things when they aren’t ready. Mine is one of those and has proven that a few times.

He still is not sleeping through the night, however we don’t have to get out of bed unless he can’t locate his binkie then we just put it in front of him and walk back to bed. I am either just being paranoid or maybe I’m not and I am right or maybe I’m just crazy but I think him not sleeping all night is shunt related. He has an MRI and a follow up with his neuro next month and I plan to bring it up.