To swing or not to swing... that is the question

Hi friends.

Well, October basically flew by - but what a fun month for our family. We started out with a trip to the lake with the Eltz, Luckett and Pickard crew. Followed by our first big road trip to Galveston with the Luckett family, and then Halloween!

Caroline is doing wonderfully. She is developing quite the personality. Very smiley/happy baby - but will turn on you in a second if she's not comfortable with her situation. I'm contributing these mood swings to boredom - but either way - she let's you know in a hurry! I can't figure out if that's more my personality or Dan's. I'm leaning toward Dan's - but I know from what my family tells me that I was definitely "spirited."

As an update on her "head" - we have decided to seek a second opinion with a cranial specialist. I have yet to set up an appointment and need to do so in the next week or so... My inclination is that if the shape of her head isn't going to affect the look of her face - then I don't think we'll do a helmet.

And, regarding the title of this post... I have a confession to make.

I don't know who loves the swing more - me, or Caroline... Little did I know that when my wonderful sis-in-law gifted us the amazing fisher price swing, we were looking at what would be our temporary solution to a few more hours rest. When the time between feedings was so short, the swing was a great way to get her to sleep a little faster - hence her (and me) getting more sleep in between feedings.

However - now that she can go 5 hours - we need her to start sleeping in the bed - and not in the swing, and not on me. Let's face it. She's 18 POUNDS... The swing will not swing for much longer!

So, we've started sleep training and so far, we have gone 3 nights with no swing sleep! She's still having a hard time with the bed - but we're no longer leaning on the swing to solve our problems. I have faith that in a month - she'll be taking naps and longer stretches of sleep in her bed. We can do it!!

And then eventually, we'll get her upstairs. I don't know when - but soon it will happen. Prayers appreciated :)

GOOD NEWS!

Whew!! Well, after Caroline had her ultrasound yesterday, we heard from the doctor and her brain is good!!! Thank God! No, seriously, Thank GOD!!!

Just the thought of her having to go through what I did as a baby was almost too much!

We go back in a few months for another head measurement and there's a possibility for another xray and maybe a helmet - but nothing's for sure just yet.

thank you for the prayers - we very much appreciate the love and support!

Asking for prayers

Yesterday Caroline saw the doctor for her 4 month visit. She's still in the 90's for head, length and weight. However, the doctor is concerned about the size of her head and the continued growth. She took another jump from last month in size. Given my history (having hydrocephalus as a baby), she wants to do an ultrasound over her soft spot to make sure everything is ok.

Despite the fact that this condition is rarely hereditary, I'm a little bit paralyzed until we find out more. I'm asking for prayers that when we do the ultrasound, everything checks out as normal. I've been praying for peace until we know more - but it's in my nature to worry incessantly.

Deep down, I really feel like everything is fine. She's the baby of two parents with above average heads. Even still, we need prayers. I do not want her to have to be sedated for more testing.

We hope to go to childrens for the scan tomorrow - but will know for sure today.

much love,
Jessica

Another day, another dollar

Well, little Caroline turned 16 weeks yesterday. Time is officially flying now that I'm back at work. Days go by like minutes and she's changing and growing all of the time... some of our new talents include:
- better head and neck control (finally)
- grasping
- sucking our thumb
- rolling on our side
- lots of cooing and talking!!
- blowing bubbles
- and getting upset in the morning when we can't poop!

As for momma - I'm starting to adjust to the new routine. I still get sad when I leave her and very ancy to get her back - and I don't expect this to change anytime soon. Breastfeeding is still going well. Finding time to pump at the office has been a bit of a challenge - but we're making it work - and believe it or not, I'm surprisingly productive during my closed-door sessions!

We're looking forward to a few firsts this fall as well. First time at the lake, first time at the beach, and her first Halloween! More cute pictures to come!

And that about sums it up. My girl is strong, happy and healthy, thank the Lord!!

xoxo

Day 6... How we're doing

Well, today my girl is 13 weeks old. She'll be 3 months tomorrow, and we have survived 6 working days so far!

Baby girl is doing great with her two aunties. Mama on the other hand is still having a hard time coping. I'm shedding a few tears every morning and race home to get her every evening. I'm told this is perfectly normal ;)

Sleep is even harder to come by, but I'm doing ok up until about 5 PM. That's when I start to really crash. On the bright side, I'm getting to work much earlier than before. I mean, when you get up at 5 AM to feed, pump and make bottles, there's no real reason to fall back asleep!

Everyone at the office has been amazing and supportive. I've only pumped in my car twice so far. I even have access to a lovely cubbie at the client's office to pump when I'm in Plano!

Caroline is taking the bottle ok. The first bottle feeding of the day seems to be the most challenging. Her first morning with my aunt, she only took 1 ounce of milk before napping, which triggered me to call Children's. They indicated that 1 ounce is the minimum that she should take in every 4 hours. Whew! Glad we know that now!!

Looking forward to the long weekend and more time with my girl. Daddy doesn't have any fishing plans this weekend either - so we should have plenty of family bonding time! Yeah!!

P.S, Here's a picture of her first day with aunt Lori another of her at her aunt kim's. I love that everyone has iPhones!

A new day... a new era

Well, the time has come. I have to return to work after 12 amazing weeks with the most beautiful, precious baby girl (and I'm not partial ;-)). How I choose to deal with this separation is a battle that I must wage between my rational and irrational self. The rational side of me knows that she is in VERY good hands. She will be loved unconditionally by two of the best people I know. The irrational side just wants to be near her all of the time. While I have been mentally preparing myself for this day for a long time (even before I was pregnant), nothing can really prepare you for the connection that you feel with your child. It's pretty much the most amazing, awe-inspiring relationship. She needs me and I need her. What a beautiful thing.


Enough of the heavy. On a positive note, I get to spend more time with my sister and my friends at work. If you have to work, it's nice to have your sister a few offices down the hall, along with a great group of wonderful friends to support you! I'm also lucky to work on an account with great clients who just so happen to office in Plano -- which on a good day, gets me that much closer to my girl!

Wish us luck :)

P.S. Check out Caroline's snazzy shoes from her aunt Heather! Still a little big. We can't wait to wear them one day!!

xoxo

my little honey badger

For those of you who are close to our family, you may know that we have referred to Caroline as our "little honey badger" since she was just a couple weeks old. The reference stems from a youtube video narrating the activities of a very hungry "don't care" honey badger. And our baby has been the same way. She wants to eat - doesn't care where, why or when... And, her momma has been acutely aware of her schedule due to the MCAD - so between the two of us, we managed to bring her from the 50% percentile for weight at 2 weeks to the 97% at 2 months. This, apparently is a huge jump. So much so, that the doctor told me to back off on the feedings. I was so offended! My girl needs to go on a diet???

While I don't want an overweight child, EVERYTHING I've read indicates that breastfed infants can not be overfed and that they typically gain weight faster at first. So, I'm listening to my gut and the ONLY change I'm making is my alarm (which is used as an FYI)to every 3 hours instead of 2. If she makes it to 3, great... If she wants to eat sooner, that's fine too.

On a similar note, I did get a little more clarity on the "3-4" hours between feedings until 5 months. The metabolic counselor said that they want parents to be actively feeding their child at 4 hours - instead of just starting the process of making the bottle at 4 hours. That clarification has been such a relief!! If we go 3 1/2 hours during the night, I don't have to feel guilty :) Every little bit helps, right?

So, in light of both of these changes, I feel like a free woman... Today was the first day that I let her go 3 hours and I got so much more accomplished!

For fun, click here for the honey badger video... fair warning - profanity is used (which we think makes it a funnier video) - but probably not safe to watch around your kids.

Sleep

With Caroline as my primary concern, sleep is both my friend and my enemy. Prior to becoming a parent, I got a lot of it. Even when I was big and pregnant, discomfort never got in the way of my precious sleep. Or my husband's for that matter.

For the next 3 months, I won't be getting more than 3 consecutive hours of sleep at any point of time. And, to be honest, my body has totally adjusted. Yes, I need a nap here and there - and we may figure a way for Dan to take one of the early morning feedings when I go back to work in order to get a couple more hours. Either way - I will be fine.

That being said, because of Caroline's MCAD, I have a huge fear of oversleeping. I've learned that my "REM" cycle occurs during my first few hours of sleep. I've been setting 3 or 4 alarms just to make sure I wake up. So far, I have not exceeded the maximum amount of time she can go without eating, however the fear has me looking for better ways to wake up out of a very deep sleep. My latest thought is to buy one of those alarms that has a vibrating component that goes under my pillow. I've also considered recording myself saying, "Jessica -- wake up and feed your daughter!!" Other suggestions are welcome :)

I do have to say, that while other parents may have 7 week old babies that sleep through the night, I'm pretty impressed that my little girl can nurse, then go back to sleep successfully 3x a night :-) Go Caroline!

P.S. Just for fun, check out this video that I sent to Dan. The reason I love it so is because I think it gives an indication of her little personality - boy does she have one!

Control Freak!

To my detriment sometimes, I may be considered a little "Type A." Since we have learned about Caroline's condition, I've prayed every day for peace and to remember that God is in control of our future.

One of my biggest concerns after seeing the specialist was childcare. Long story short, we have worked diligently over the last few years to get our finances in order, so it's important that I return to work full time in the fall. This decision was not taken lightly and lots of alternatives have been considered. One thing that we did agree on, was that day care was probably not the best option for Caroline during the first year - as our number one goal is to eliminate as many colds, viruses and ear infections as we can over the next 11 months.

And, all I have to say is that prayer works! Ironically, both of our aunts are willing to watch our baby in the fall! What a blessing :)

My next task is to put together our protocol for if/when she runs a fever or will not eat. I still have a few unanswered questions on when you make the decision to jump in the car and head to the Children's hospital.

In the meantime, we're all loving watching her grow and change. She's almost 5 weeks old and approximately 11 pounds already! Guess those 1 hour feedings served their purpose after all!

A visit with the specialist

The following Tuesday, we left for Children's Medical Center in Dallas to visit with Dr. Lewis Waber - a metabolic specialist. As we entered the hospital, chills ran down my spine - realizing that my 2 week old infant was at another hospital.

The genetic counselor and the doctor sat down with us and immediately calmed my fears about treating her condition. In a nutshell, here's what I learned:

- Until Caroline is 5 months old, she can not go longer than 3-4 hours without eating (which means she'll never get more than 3 1/2 hours sleep in between feedings)
- At 5 months, she can go 5 hours, 6 months, 6 hours. Up until 1 year, the amount of time she can go increases each month - with the max being 12 hours beginning at 1 year of age.
- At one year (and beyond), we will give her a snack at bed time (crackers and milk, etc), and then breakfast once she's awake.

If/when she gets sick, we make sure she avoids any period of fasting. Measuring blood sugar levels is a not a good indicator, because at the point they are low, she may already be in the middle of a metabolic crisis. Our rule of thumb (once she's a year old) is that if she can't keep down two meals (breakfast and lunch) - then she goes to the ER. Prior to a year, we will have to watch even closer, and quite possibly take her if she goes 4 hours and will not eat due to illness.

They provided us with an emergency protocol letter that indicates she will need 10% intravenous glucose upon arrival to the ER.

Bottom Line: If she eats, she will stay healthy, if she won't eat, she needs glucose.

The reassurance I received at the clinic was that as long as you bring her in at the first sign of a fast (due to illness), she will be fine and can avoid any metabolic episodes.

Regarding the genetics associated with her condition, we learned that she's 1 in 20,000 infants. We also learned that we have a 25% chance of having a second child with MCAD. Our siblings all have a 50% chance of also being a carrier, so it may make sense for each of them to have genetic counseling prior to conceiving - just so they are prepared if their spouse is also a carrier. If Caroline marries a carrier, they will have a 50% chance of having a child with the disorder.

We also learned that Texas has only included the MCAD deficiency on the newborn screen for the past 4 years. Given the fact that my husband and have been married for 9 years, it was a blessing that we didn't have children sooner!

And speaking of blessings, I finally have come to terms with the fact that given everything we know, early detection has been and will be a blessing for Caroline. I must not dwell on why, but focus on how we can keep her well with God's help.

My daughter has what?

My intention with this blog is to document our family's journey, and in the process provide support and reference for others who are dealing with the same diagnosis. Here is the beginning of our story...

Caroline was born on June 1, 2011 via c-section. It wasn't a planned c-section, however, we were blessed to move forward with the procedure, considering her umbilical cord was wrapped 3 times around her neck at delivery. That being said, she came out perfectly healthy and happy :)

After 3 days in the hospital, we took our little girl home. She started to really gain weight, as I was exclusively breastfeeding and my milk came in on day 3.

By the following Tuesday (she was 7 days old), I received a call from a nurse at our hospital explaining that Caroline's newborn screen had come back positive for MCAD deficiency. At this point, I wasn't totally alarmed because as far as I knew, my baby was totally healthy and this might just be a little something that needs to be treated temporarily. The nurse reassured me on the phone that as long as I was feeding her every 2-3 hours (which wasn't a problem), she would be fine.

As the day went on, I got a call from my new pediatrician, as well as the residing pediatrician that I used at the hospital. Both seemed alarmed and concerned about the potential diagnosis. My new doc even told me to look for signs of lethargy and if they existed to rush her to the nearest emergency room. At this point, I really started to freak out.

I wanted so bad to google her condition, but I held off because I knew that would just set off more alarms in my head and heart. I was already an emotional basket case from giving birth, and even more so now that I was learning my daughter -- my newborn baby girl had a chronic health condition.

Thankfully, my husband went to the internet, read up on MCAD and gave me his very safe, interpreted version of her condition.

The next day we visited the pediatrician, who, again was very alarmed about Caroline's potential for having this deficiency. She explained that out of their very large practice (4 MD's and 1 PA), they have only had one other patient with MCAD and he is now 13. She reassured us that Caroline should have a very normal childhood and that the fact we know about her condition is a blessing. Albeit, I wasn't seeing it as one at that point... All this said, it was fairly clear that her experience and knowledge of this disorder was very very limited due to it's rarity.

The same day, we went to the children's hospital for lab work - and that was probably one of the most terrifying experiences of my entire life. Holding my precious baby while they draw blood from her arm as she screamed bloody murder. Needless to say, I was also hysterical.

Surprisingly, the results came back the very next week with a confirmation that she was indeed MCAD deficient. I was even more distraught. We had read so many things about diet, restrictions, illness, "episodes", complications, etc. The pediatrician told me to expect a call from the Metabolic Clinic at Children's Medical in Dallas to schedule a follow up appointment the next day.

At this point, I knew two things-- 1) I needed to pray for peace, understanding and acceptance and 2) the specialist clinic was the only place where I would seek the answers and reassurance we needed to move on.

And, I'm not always right, but I was certainly right this time -- on both accounts. By 11 AM the following day, I went ahead and called the clinic myself. And, of course I got emotional with the receptionist, which apparently set off alarm bells throughout the clinic -- and in turn got me an appointment for the next Tuesday! (I guess being crazy, emotional first time mom can pay off).

Next up --- the visit with the specialist...