Tag Archives: cmv

Felix is 10 Months Old!

Felix is 10 months old today. He is so happy these days, and is a delight to spend our days with.

We are doing better with routines now, and I think that has helped him understand when bedtime is. Sleeping remains a struggle, and naps are nearly nonexistent, but weโ€™re going to continue to work on it.

The developmental specialist said we should try to re-introduce dairy into Felixโ€˜s diet, and so far itโ€™s going well in small quantities. He is eating a pretty wide variety of foods now, and is finally starting to try and feed himself.

He is not crawling yet, though he is getting closer every day. His physical therapist reduced his visits to every other week rather than every week because heโ€™s making such wonderful progress. She said she anticipates him being caught up with his peers by age 2. We are just all so happy that he is getting caught up, and that he has passed his fussy first several months.

I canโ€™t believe we are nearing one year old! Onward and upward!

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.

Felix is 8 Months Old!

Felix is 8 months old today! In the last month he has really blossomed. Whatever funk he was in for the first 6 months of his life has definitely passed.

Things he does now:

โ€ข Looks at faces, makes eye contact, smiles, and has stranger anxiety.

โ€ข Rolls front to back, back to front.

โ€ข Reaches up and out with his hands to grabs objects.

โ€ข Sits for a few moments at a time, with improvement every day.

โ€ข Stays on hands and knees for a few moments with help.

โ€ข Squeals, babbles, and razzes all the time.

โ€ข Enjoys bath time (and swimming at the Y).

โ€ข Likes playing games and singing, like โ€œPat-A-Cakeโ€ and โ€œItsy Bitsy Spider.โ€

โ€ข Actively and happily participates in physical therapy at appointments and at home.

โ€ข Drinks breastmilk on demand, and eats purรฉed baby food twice a day.

โ€ข Sleeps in his crib (no longer his bassinet) for longer stretches of time at night. But still doesnโ€™t nap well.

โ€ข Still prefers the outdoors.

Iโ€™m sure there are a few things Iโ€™m missing. But these are all big changes that came all at once. He also got his 6 month shots today since he was on a delayed schedule due to his previous CMV infection. At his appointment he weighed 18 lbs 1 oz, and was 27 inches tall.

Now if I could just get him to smile for a picture, it would be really helpful for these monthly updates. Haha!

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.

Felix is 6 Months Old!

Felix is six months old! He had his six month check up today, and updated his vaccines. He was running a little behind on vaccines because for his four month check up he was fighting quite the virus. It turns out he had CMV. If you don’t know what CMV is, I very strongly suggest that you research it. I knew nothing about it before Felix was diagnosed as having had it. I believe he contracted it after he was born rather than in utero, so we have that working in our favor. However, since the symptoms last so long, his development is delayed a bit. That would be why he wasn’t meeting his milestones or doing much of anything for a couple of months earlier in his life.

However, as of today, the doctor and nurse both are not concerned with the way Felix behaves or appears in the doctor’s office. The nurse has been doing her job for well over 20 years, and said Felix seems like a pretty average six month old baby now. As of today, Felix is 16 lbs. 10 oz., and 26 1/2 inches long. He is in the 30th-40th percentile for baby boys of his age. It seems odd to me that he is so small on the percentile chart now, when he was so huge when he was born. But he’s been growing on that path all along, so that is clearly the size he was meant to be. There is no concern there.

Developmentally, when it comes to his milestones, he is a little behind still. I truly believe it was because he was feeling crummy for so long, however he does still have an AEA evaluation and developmental specialist evaluation next week. We want to cover all of our bases so that if there is an issue, we can address it early so Felix has the best chance at having a typical childhood.

As of yesterday, Felix started rolling front to back a little, and understands how to roll back to front with help. When he gets put into a bouncer seat, he scoots his butt forward until his feet touch the ground, and then he scoots out of it. He sits up without support for a few moments at a time, but likes to throw himself backwards so we have to be careful. He still isn’t good about eye contact, but he is looking at things and tracking movements much better. and he absolutely loves playing around with our new piano. I swear he’s going to be a piano star when he gets older. Lol. Other things he likes are going swimming, taking baths, and most of all, the porch smoking. When he is having a bad day, and is the most upset, we can sit on the porch swing together and he’s happy for the time we’re there. He has also started solids, and really loves meal times. He is still breast-fed for the rest of the time.

Overall Felix is a pretty happy, good spirited young man. But when he’s having a bad day, everyone knows it, and there’s not a whole lot we can do to get him past it besides just get through the day. I’m hoping with time, the bad days are fewer and further between, filled in by many more happy days. He is such a joy to be around when he is in a good mood.