Category Archives: Health Concerns

Bonding

When I was pregnant with Felix, I had certain beliefs and expectations of becoming a new mom again.  I knew I would be tired and sleep deprived for a while, and sore from the c-section.  I knew I wanted to breastfeed, and I knew the baby would sleep in our bed at least part of the time.  I knew we had family and friends who were looking forward to not only meeting our baby, but helping with him for babysitting and such. And I knew I wanted to stay at home with the baby for about the first year or so, at least.

From the first day Felix was born, he gave me hell about breastfeeding, which continues today.  He has found new and unique ways to make nursing challenging just about every week.  From refusing, to not latching right, to blood sugars requiring supplementation, to LOTS of biting.  Its been crazy!

My expectations about sleep deprivation were very inaccurate.  It’s been nothing like I thought it would be.  Felix does not have typical sleep patterns.  For one, he doesn’t really nap.  He sleeps 20-30 minutes, 2-3 times per day while laying on one of us.  If he gets put down, he wakes up.  And at night, for the longest time he didn’t sleep much.  He was awake for 2-3 hours in the middle of the night, and nursed several times overnight.  He would be wide awake and happy, playing in the dark and keeping us awake.  I was getting 3-4 hours of sleep per night for months.  It has evolved a little over time.  Now he generally sleeps well overnight, but still wakes to eat 2-3 times, occasionally staying awake for an hour or two, or occasionally having a night where he doesn’t sleep much at all. On the flipside of that, he occasionally has nights where he sleeps 10 hours straight.  But its more on the sleeping side now.  Even though he’s still challenging to get to go to sleep.

Friends and family have been few and far between as far as visits.  No one babysits except Felix’s big sister Zoey.  And that’s only been a couple times.  But some of that is just because Felix had CMV and was grumpy and colicky until he was about 6 months old.

And that’s where the point of this post comes into play: illness and colic, and bonding with my baby. For the very tough, colicky period, I loved Felix of course, but I didn’t like him. I hated all the crying, particularly because there was nothing I could do to soothe him. I couldn’t make him feel better. He would look directly into my face and scream frantically as if pleading for me to make it better. It broke my heart every day, and I sobbed right along with him.

And after a while the helplessness made me feel like a shitty mom. It made me angry, not at Felix, but at the universe for making my poor innocent baby so uncomfortable and upset. It also made me angry with myself for being so completely unable to make it better. I didn’t understand why it was happening. I started to have feelings of regret and resentment towards myself and Jarrod for deciding to have another baby in the first place. I was desperately missing the time I had spent with my husband, my older kids, my other family, my friends, and even working. I was entirely consumed with the fact that I now had to take care of this little, helpless, miserable, screaming human that I could not comfort or make feel better. I knew it would be a temporary phase in the bigger picture, but every day felt like an eternity. I didn’t see a light at the end of the tunnel.

Then, as more time passed and Felix wasn’t improving, wasn’t getting past his colic, and now had obvious developmental delays… my already sleep-deprived, depressed and anxiety-ridden brain absolutely ran away with ideas of serious illness and disabilities. He wasn’t physically moving right, seemingly wasn’t seeing or hearing well, wasn’t responding to anything or looking at us at all, had no interest in toys or really anything. Our family doctor really didn’t know what to tell us, so he sent us onto specialists. But before we could meet with the specialists, I couldn’t help but worry myself sick. My brain just would not shut off, thinking he had some severe life-altering condition or issue.

When we met with the developmental specialist the first time, Felix had improved only slightly. That was in August. Genetic tests, body system function tests, and many imaging tests were ordered. Physical, occupational and speech/feeding therapy was ordered. The doc said he wanted to be super aggressive for the best outcome. But while we were waiting for all of these appointments, Felix started to improve on his own.

The only test that came back without a normal result was the one for CMV antibodies. Meaning at some point in Felix’s short life, he had been exposed to CMV and had gotten an infection. CMV is like mono, and it effects everyone differently. Apparently it had a very strong, long lasting effect on Felix in a very important developmental period of his life. So he felt like he had a cold/flu for likely 2-3 months, and that is what was delaying everything.

In October, Felix had his follow up, and by then he was like a whole new baby. And since then he has improved even more. He is babbling, playing, social, happy, communicative, and a complete joy to have in our lives. Physical therapy is helping him learn how to move his body the ways he should have learned when he was sick with CMV. It’s giving him the awareness and confidence to try new things and he’s really blossoming.

His illness and delays really drove a stake into my heart at first, and made me question our decision to have another baby. It was extremely tough, and looking back I’m not sure how we survived it. But now that things are coming closer to “normal,” speaking for myself, there’s an overwhelming sense of relief and joy in my life. Felix is an amazing little guy. I’m so incredibly grateful and blessed to be his mommy. He has taught me so very much already, and I’m sure he will continue to teach me more. The bond is strong now, as I feared it would never be. Thank goodness.

I’m so lucky to have been able to stay home with him and support his extra needs. If I’d had to work or if I wasn’t as involved as I am with him, we may have missed the issues and it could have had much more lasting effects on him overall.

I’m even luckier to have an amazing husband supporting not only Felix’s needs, but me, my needs, and my dedication to helping our son. Jarrod and I make a pretty phenomenal parenting team. There’s no one in the world I’d rather have as my partner in life. He has supported me through all the struggles, listened to all of my venting, and done everything he could do to help in every way. He’s shared in all the joys and triumphs, with just as much excitement. He’s the best husband, father, and man I’ve ever known.

Now the regret and resentment is completely gone, as it has transformed into bliss. We made the right decision to have a baby. Felix makes the most perfect addition to our family. All the older kids adore him, and I feel like his presence is bringing us closer as a family as well. Something we all have in common. I am enjoying watching his personality develop and shine, and I am hopeful and excited for the future with Felix in it.

Cars, Kids and the Concert

I just wanted to follow up my previous posts with some updates. First of all, it turns out we were fully insured. Insurance deemed the car a total loss and paid us out. We were able to find a minivan at a reasonable price and are getting some repairs done Friday to make it last us a while. Felix continues to do amazing at physical therapy except for the last couple days, when he just wants to be held all the time. I’m sure a big part of that is the fact that he’s teething. He’s gotten one tooth and the second one isn’t far behind.But anyway, Felix can roll front to back and back to front now, and when he does the exercise when he’s on his tummy on his boppy, he’s getting strong enough to push himself off and over it. He’s also really been studying faces lately. I’m so proud of his progress.

Andy got his braces off today! He had them for 3.5-4 years, with a jaw surgery during that time. He said it feels weird and a little sore. But he’s happy.

Evan had court today to review his court ordered outpatient committal. The judge dismissed the case, saying Evan was no longer a threat to himself or others. But he’s gotten 2 criminal charges and has violated his probation (recently). I told him the ruling may seem like a good thing, but what it really means is that now when he decides to act a fool, he can’t hide behind mental health. He will just be treated like a criminal. He faces a judge about his second criminal charge soon.

Jarrod had a really good time at Riot Fest despite his shitty adventure on the way home. He got to see a couple bands in particular he was very excited to see: Guided By Voices and Ween. I’m glad he was able to go and enjoy himself, even if I was unable to join him. Hopefully I get so fortunate as to be able to go to a concert soon.

Left: Guided By Voices โ€” Right: Ween, photos by Jarrod

I finally saw a doctor about a few things I had been avoiding and/or putting off. Nothing too serious. I’m not going to go into any of that right now because Felix is starting to wake up from his mini nap and I don’t have time to type about it. I’ll update again soon.

Felix Began Physical Therapy

This is a video update about Felix’s first day in physical therapy. I will do a more detailed update at the end of the week. Thanks for watching.

Step 1

Felix had his developmental specialist appointment. Dr Noble examined him, talked about our concerns, and was very attentive and professional. He did express some concerns about Felix, but in a rather non-specific way. He diagnosed him with hypotonia, but said his muscle tone was good, saying he thought he would really benefit from physical therapy, occupational therapy, and speech therapy (for feeding concerns, at his age). He wants to be really aggressive with therapy in hopes that we can come out ahead of it.

Dr Noble also referred Felix to neurology, gastroenterology, optometry, audiology, and ordered genetic tests, an upper GI, and a sedated brain MRI. It’s a lot to take in all at once. And I have no idea what the doctor is thinking may be the overall issue, but he said he has to rule a lot of things out before we will know what it IS.

Jarrod really has been my rock through all of this. He worries, but nothing like I do. He has a more “take it as it comes” attitude, which is good for me. I tend to sit and stew, and wonder about Felix’s every little new behavior. I’m so anxious about test results or what the future may hold for our boy. I truly just want the best for him. I’m so scared he’s going to have big challenges and… well my mind tends to wander to worst case scenario. I hate that about myself. I just want to shut off that part of my brain and focus more on Felix’s strengths. I’m working on it.

Almost kinda sitting up. ๐Ÿ™‚

The first tests Felix was able to get done were a few basic blood tests and an upper GI. All of those have come back normal so far except for some reflux seen in the upper GI. But that has already been being treated, so nothing new there. His next test is the sedated MRI of his brain. I’m more nervous about that just because he has to be asleep for it, and I’m a little worried about what they may find. I know during his many ultrasounds while I was still pregnant, they always looked at his brain and organs and they were always perfect. So I guess we will see if anything has changed.

We are also waiting on results of blood and cheek swab genetic tests. But those take several weeks.

There’s so much going on so quickly, and it’s overwhelming. But I feel very grateful to have doctors taking things seriously and getting him figured out while he’s very young so he can have the best possible outcome and future.

I’ll continue to update here as test results come back to us.

We NEED Help

Update 12/6/2019
We are still struggling, but I think we have things under control.ย  Many of you made very generous contributions, not only on GoFundMe, but in person, in supplies, and in support.ย  I cannot express the deep gratitude Jarrod and I both have.ย  Thank you so much to everyone, from the bottom of our hearts.

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WE NEED HELP. PLEASE CHECK OUT OUR GOFUNDME PAGE.

Felix has seen a specialist and is in need of lots of therapy. Details on the campaign page. Please help. And share, share, share, far and wide. Thank you for your help.