The Road to Diagnosis - Part Two

     Coming home with a newborn is a crazy time for any parent, but I don't think I was ever as worried as I was with V. After the destats she has at the hospital I felt the need to check on her much more often than I did with the older two.  I quickly noticed that she slept so much more than my older two.  Most of my friends thought this was awesome but really it made things so much harder.  For one I literally couldn't keep her awake to finish a feed.  I was able to breastfeed my older kids, but again with V things were different.  Because she was so sleepy all the time and didn't stay awake for feeds and I had to get calories in her faster.  If she didn't get enough she was more tired and it became a vicious cycle.  At this point she was a few weeks old.  Like most newborns she lost some weight after birth, however, she didn't start gaining it back for almost 2 months. Instead of feeding when she was ready and hungry I had to start waking her every 2 hours, even through the night. I also started pumping instead and was able to get her feeding better.  This created a new problem, even with the slowest flow she was very prone to choking, seemingly out of no where.  Looking back I feel at this point we should have had a swallow study done, but unfortunately our pediatrician at the time wasn't the best at suggesting what specialists we should see. 

    This brings me to my first major tip for anyone else going through this.  Trust your gut. If you feel like something isn't quite right it likely isn't.  Don't panic, but do pursue it.  No one wants to say something is wrong with their child so if you're thinking maybe it is don't be afraid to get a second opinion.  

    By a few months old it was very clear something was different.  V was very floppy even compared to other newborns.  She also still slept for extremely long periods. She had little to no startle reflex and she never seemed to really focus on anything. The day that still sticks in my mind was when I decided to steam clean the carpet while she was napping.  The cleaner I was using was very loud, I ran it under her swing and she didn't even stir.  It really jolted me and made me wonder if she was deaf.  I talked to our pediatrician.  She did give us a diagnosis of hypotonia and Global Developmental Delay (GDD), which was a start but both of these are "symptom diagnosis"  as I call them.  They don't really give you a reason for anything.  Around this time V was starting to miss milestones, I also pointed out her eyeballs seemed to shake.  I was worried about seizures or something else going on.  At this point our pediatrician, who I had really liked until this point, just began repeating,  "I don't do special needs kids" pretty much any time I asked for a referral or tried to figure out what specialists to see.  If this is the kind of answers you're getting switch doctors right away!  I should have and i wasted months not following my gut on this one.

    After much debated I got our pediatrician to order a hearing test with a specialist. Her hearing was perfect both in her actual ears and in her brain processing.  I did find out that we should have been coming to the hearing doctor every 6 months since birth due to the number of days she was in the NICU.  This had never been mentioned by the pediatrician. 

    I still knew in my gut something wasn't right.  After doing tons of my own research I found out about a program called Early Intervention.  This exists in every state in the US.  It's free, but may run through your insurance first then they will pay the remainder depending on your state.  You don't need a doctor referral you can call and self refer.  They will come out and do an evaluation on your child and if any delays are noted (there are different levels of delay required by each state) you will be given access to free therapy and sometimes equipment.  This therapy is done in your home so you don't even have to travel for it!  I signed up for an evaluation and decided to push for an eye exam with a pediatric ophthalmologist as well to address the eye shaking. 

    For the first time I finally felt like I was taking steps towards finding out what was going on and how to "fix" it.  I had no idea how long the journey would be at this point, or that 2 years later I would have some answers but also many, many more questions, but it really felt great to finally be doing something productive. 

Farm Life

    I feel like this is one thing I promised to talk about that I haven't touched on yet, our little mini farm.  We have around 10 acres.  It's in the middle of the woods so it's a little different than most people think of. My whole life I've had horses but after having kids I found myself not having the time and energy to dedicate to them. I rehomed my last two this year (don't worry I found excellent homes for both!). It was really emotionally hard on me, not just letting my horses go but it felt like I was giving up part of my identity almost.  I really knew it was the best solution for all of us though. 

    When E our oldest was about 2 she became obsessed with chickens.  Every time we saw chickens at the county fair or the local zoo she was so excited.  My husband decided these might be great for us.  She loved them and they were an easy livestock starter animal.  Perfect!  Just one problem, I'll admit at the time I was terrified of birds and chickens were number 1 on the list for some reason.  When E was 3 we decided after some research to purchase our first chickens.  I did tons of research and learned everything about breeds, temperaments etc. This is what I do for everything we buy from chickens to toasters, my husband loves to make fun of me for it.  We landed on buying 6 the first time, which was the minimum at our local feed store.  We got 3 Buff Orphingtons and 3 Rhode Island Reds, a perfect little starter set up.  E wanted ducks so bad but our local store didn't have any.  On the way home from visiting friends my husband let her stop at Tractor Supply and low and behold they had ducks!  So we acquired 2 of them as well, and another 2 Buff Orphingtons that were very floppy and being pecked to death in a different tank.  This my friends is called chicken math, look it up I promise it's a thing.  It has continued every year we've had birds. 

    This year we got our first bantams, they're like miniature chickens that fit in your hand even when full grown. We also got our first roosters which has been a whole different adventure.  We've already discovered some will never be family birds no matter what you do raising them. We've got one that is definitely a keeper now.  He is E's favorite chicken and totally spoiled.  In return he allows her to carry him around like a purse puppy and he even looks up when you call his name.

This is our guy Denny, he's a Barred Rock. 

    Due to COVID and food shortages this year we decided since we have some space and most of the set up to try our hand at meat chickens.  We purchased 20 Cornish Cross chicks from Tractor Supply and raised them and butchered them ourselves. They averaged out to 5-6lbs each and the taste was so much better than store bought chicken.  I was really proud of us and we were hooked.  We wanted to be a little more self sustainable but we have no hope of totally going off the grid anytime soon.

     Following our success with the meat chickens and some more research we decided to get into meat rabbits as well. We bought 2 females and 1 male last summer and we're getting close to having our first full grown batch of babies now. I know this one isn't for everyone but we decided it was worth a try based on return for the amount of work and feed needed. 

    Lastly, I've gotten more into gardening this past summer.  As a birthday gift my husband built me beautiful raised beds and my in laws bought me soil to fill them.  I've tried gardening in the past but never had a successful garden.  This is the first year I feel I've gotten a decent return.  I can't wait to get started this year. 

    I'll get more into all these topics at a later date but I know some people have said they were interested in this part of my blog.  I know this isn't a huge farm for many, but it keeps us busy!

The Road to Diagnosis - The Beginning

    So you notice your perfect baby maybe has a delay. Maybe you knew this was possible throughout your pregnancy or maybe like me you felt it the day they were born, or maybe it came later in the weeks, months or even years that followed.  I know for me this triggered hours and hours of googling sessions and there was very little information out there. Most were simply posts to reassure you that your baby was not delayed and how to relax. I found this very unhelpful and even more stressful. I didn't know where to start or who to even ask. Because of this I wanted to share the story of our road to diagnosis.  Full disclosure before we hop in, V is currently 26 months and I still don't have a solid diagnosis but we do have a lot more answers than we used to.  I also hope to share some things I learned along the way to possibly save others some stress later.

    I'll start off by saying my third pregnancy was a little different. I had preeclampsia with each of my pregnancies so it was not totally unexpected.  However with V I also has high fluid levels (polyhydramnios) and had to have tons of extra scans as a result. Never was I told this could mean anything in terms of delays for her.  She was much quieter than my other kids in terms of movement, though I was also told this was due to her positioning.  She was born by scheduled c-section at 37 weeks.  Her initial apgar was good but at just a few minutes old she looked very purple to me.  After checking her they decided to let me hold her for 5 minutes then take her to the NICU for a check just in case.  I was taken to recovery and she went to the NICU.  I was having a hard time managing my pain levels after surgery and didn't immediately worry much because my nurse was very experienced and seemed to think she was fine.  I was then set up in my hospital room and not allowed to go see her until the following morning due to my surgery.  My husband went to spend the night with her.  After a night full of stress I was finally allowed to get out of bed.  My husband came to get me and told me that twice during the night she had oxygen destats and they had placed her on a cpap. As you can imagine this did not help me stress levels in the least.  

    Almost 24 hours after she was born I was finally allowed to hold her. She was so perfect to look at but the tubes, monitors and lines were scary. She graduated from the cpap only to start destats again so she was placed on a cannula to maintain her oxygen levels.  During this time I tried to breastfeed her but she seemed to be getting nothing and didn't have the same suction as a typical baby.  I got my mom to bring my pump in so I could pump for her as much as I was able.  Even bottles were tricky though she would often choke after only a small sip.  Just as we were about to be discharged her bilirubin levels became elevated and we upped the length of our stay.  At this point I was aware something was entirely different. She was a large baby, 8lbs 4oz, however she had very little interest in eating and had to be woken to eat.  It was hard to keep her awake long enough to get a feed in her.  Her whole little body felt like a ragdoll and it seemed like she just didn't think anything was worth the effort.  She never cried and slept constantly. 

    A few days in my best friend came to see her.  At this point I was living in that happy new mommy bubble even with the extra challenges.  I saw her, I knew she was different.  I remember being scared to hand her to my best friend. Not that she would love her less but that it would be a moment that would change everything.  She took V from me ever so carefully.  Looked over her little body, admiring her hair, cheeks, fingers and toes.  She looked at me with the most wonderful look of just knowing on her face and told me she was absolutely perfect.  In that moment I knew things were different but they were still beautiful and good.