Category Archives: Infants

Grant has his first tooth!

By:  Davida Grant

Grant has been drooling and gnawing on his fingers something fierce the last two months.  I knew he was teething. I’ve been waiting and waiting for his first tooth to break through and yesterday it did.  We were playing and he was just a giggling when I noticed something in his mouth. I felt his gums and there it was, the top of a little tooth.  I started clapping and kissing him all over.  This is a first for me.  Simone was still in the hospital when she was this age, with tubes galore, so I missed this stage with her.  I was just tickled pink.

Despite all the excitement with this new “stage,” I was a little sad too.  The days of that toothless grin I’ve come to adore will soon be over and gone forever.  Grant is my last child, so I’ll never experience this “first” with another.  That realization hit me with a bolt and I  shed a tear or two.  But life moves on and I’m embracing it.  I can’t wait for the next “first.”

Look at this toothless grin.  Doesn’t it just melt your heart!!!!!

Grant image

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My Baby is Ready for Solid Food. Am I?

By:  Davida Grant

Grant is 6-months old now and is expressing interest in food. You should see the way he stares at my mouth when I eat.  His jabber jaws start moving, and the saliva starts flowing.  It’s too cute.  I think, actually I know, my baby is ready for food.

Without fail, every Monday morning Grant’s care giver asks, “Have you started him on food yet?” I reply, “Uh, not yet.  It’s been a busy weekend.”  Or, I say, “I haven’t figured out my plan for the transition.”  Once I even said, “He’s still getting over his cold.  I’m going to wait until he gets better.”  I think you get the drift.  These are just excuses.  What’s the real issue here?   Hmmmm.

I know that there is no requirement that I begin introducing solid food into his diet. While some claim that milk is insufficient to address all of a baby’s nutritional needs after 6-months in age, that is not the case for every baby.  Many families choose to wait until their child is 9 months or even older before introducing solid food.  Grant’s pediatrician has given us the green light to start him on solid food, but she emphasized that we have the discretion to decide when to start the process.  So long as Grant continues to gain weight, which he is, and meets his age-appropriate milestones, which he is, she’s not concerned.

Grant is primarily on breast milk ( 15% formula), which of course is extremely beneficial to his health and development.  I’m going to try my best to continue pumping until he’s one-years old, as the hubby and I want his immunity to be as strong as possible.  But if I’m being truly honest, my decision to keep Grant solely on milk for now has nothing to do with the benefits of breast milk.  It has nothing to do with my busy schedule.  It has nothing to do with the fact that I don’t have a “plan” in place for transition.  At the end of the day, I’m just not ready for Grant to move to this next phase in his life.  I want him to stay just like he is.  I know this probably sounds crazy, but it’s really the truth.

I’m the big baby now.   I’ll grow up people, I will.  Sigh….

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Medicaid May Be Available for your Baby, Even if you are Middle Class

Simone2 007

 

By:  Davida Grant

If your child has a serious medical condition, he or she may be entitled to Medicaid benefits, even if your family’s financial resources far exceed the financial eligibility criteria applied to Medicaid recipients.

I feel compelled to talk about this.  There are so many middle class families out there with disabled or severe special needs children that simply don’t know about available Medicaid resources.  I certainly didn’t.  God sent me an “angel” that put the bug in my ear that our family might qualify for Medicaid for Simone’s ailments.  And guess what, WE QUALIFIED!  Here’s my story.

In an earlier post, I shared that my daughter, Simone, now 3.5-years old, was born with a serious medical condition, requiring hospitalization for the first 6-months of her life.   When we finally took her home, we were over the moon.  Words can’t express the stress and torment I experienced seeing my infant fight for her life.  Despite the euphoria we felt having her home, looming in the background was, how are we going to pay for her care?  My husband and I both worked and were not in a financial position to have me stay at home to care for her.  And honestly, even if I could have stayed home, Simone needed skilled nursing care.  Make no mistake, I took every training class there was to prepare myself in the event Simone experienced a life-threatening issue, but professional care was needed and that costs money, the big bucks!

Yes, we had medical insurance, but if you have a child with significant medical issues, you know that medical insurance only goes so far.  The rest is up to you and when those medical creditors come knocking, they are no joke.  I can’t even begin to quantify Simone’s total medical expenses, but I can say with absolute certainty that they were in the millions.  What middle class family do you know that can afford to pay that, even after insurance covers 80-90%?   Simone had already racked up a mountain of expenses before she came home and she still had additional surgeries on the horizon.  Not to mention, the day-to day skilled nursing care and equipment usage she required easily generated thousands of dollars in expenses per month.  We didn’t know what we were going to do to cover these costs.

So how did we find out?  You would think her case managers at the hospital would have advised us of all available financial resources, given that they knew Simone’s recovery would be lengthy.  But nope.  In our case, one of the nurses that provided home care for our daughter mentioned that there is an exception under the Medicaid program for disabled or special needs children with serious medical conditions – the Katie Beckett exception.  Any child that meets the medical eligibility requirements – regardless of their parents’ financial status — can qualify because only the child’s income is considered, which in most cases is nothing or miniscule.  She wasn’t sure if Simone qualified based on her medical conditions, but suggested that I research the program.  I did and it turned out that Simone qualified.  Because we are a middle class family with income well beyond the maximum income thresholds for Medicaid, we never even considered Medicaid as an option.  Armed with this information, I applied (oh that process was a BEAR), and ultimately Simone was approved.  From that point forward, ALL of her medical expenses that were not covered by our medical insurance were paid by Medicaid.  Just to drive this home, we would have had to pay hundreds of thousands of dollars to cover Simone’s expenses, money we absolutely did not have, if we had not qualified for the Katie Beckett Medicaid exception. 

All of this came rushing back because a friend who recently had a baby with serious medical issues is in the same boat.  After celebrating the fact that her daughter was home, we talked about her family’s plan for care.  She had no idea how her family was going to manage the day-to-day care and financial burdens of caring for their daughter.  I shared my experience and, not surprisingly, she had never heard of the Medicaid exception.  She is in the process of obtaining the necessary approvals.Yay!

I know that we aren’t alone.  Resources are out there and unfortunately information is not readily available to many families.  If your child has a serious medical issue, I can’t guarantee that they will be covered by Medicaid, but it’s worth pursuing.

I hope this helps.

 

http://dchealthcheck.net/documents/KB-Fact-Sheet-for-Community-July-2012.pdf

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Fantastic Car Seat Coat for Toddlers

By:  Davida Grant

It’s rare that I find a product that I love.  I absolutely ADORE the Cozywoggle car seat coat.

This past weekend, I attended the Femworking Conference for small businesses and bloggers.  I can’t say enough about the conference.  It was AMAZING!  But in addition to all the great information I received that hopefully will allow me to take this blog to another level (fingers crossed),  I discovered Cozywoggle. Here it is.

photo (2)photo (3)

What I love about this coat is that it reduces the bulkiness my son Grant feels when I put him in his car seat with a standard winter coat.  Grant hates being mushed, which happens when he wears a bulky coat and I have to “fit” him into his car seat.  Not to mention, his other coats make him hot while he’s riding in the car.  Grant takes after his father.  He hates being hot and gets fired up whenever he is and I mean FIRED up!  So how does it work? I put the jacket on Grant and then unzip the sides of the jacket from the bottom all the way to the wrist areas of the jacket.  Then I lift up the backside of the jacket and put Grant into his car seat.  His back rests directly against the lining of the car seat and his arms and chest remain covered with the coat.  In essence, I virtually remove the back of his coat so that he can lay in his car seat as if he isn’t wearing a coat at all. This makes Grant immensely more comfortable.  It allows me to keep the car seat straps in one position so I don’t have to keep adjusting them based on what he’s wearing.  Talk about a time saver in the mornings.  Yay!  Check my buddy out wearing his coat.

photo (4)

Are there other things I like? Yep. It’s lightweight, it’s passed crash testing, and it’s also relatively easy to maneuver the zippers and back of the coat when I opt to place him in the car seat while inside my vehicle  (easiest to do it in the house though).   Bottom line, this jacket is cute, comes in great colors, is available up to a size 5T and most importantly keeps my little buddy warm and irritation-free when he’s riding in his car seat. I even bought one for my 3-year old, Simone.

Maybe Cozywoggle should hire me to do PR.  Seriously though, I love this coat!

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My Infant Has A Serious Medical Condition And Can’t Come Home. Help!

Simone, 7 months Trach and G-Tube

Simone, 7 months
Trach and G-Tube

 
 By:  Davida Grant

You wait nine months for your new bundle of joy.  You get your finances in order, buy and read every baby book out there, get the baby room together, sing and talk to your belly first thing in the morning and just before you go to sleep, pick out baby names, and shop for the cutest outfits EVER.  In essence, you do everything to prepare yourself for your mini me.  The contractions start and through the discomfort you can’t help but think, soon s/he will be here.  You simply can’t wait to meet him or her.  You deliver your baby and you’re overcome with joy. This new chapter of your life begins. Then you get the news.  Your baby has a medical issue and won’t be able to come home.  And, not only will you have to go home without your baby, your baby likely will have to stay in the hospital for months.

Nothing, and I mean, nothing can prepare a new mom for this.  It happened to me three years ago with Simone.  My husband and I were at the hospital, ready to take her home, when her doctor said that she noticed Simone would cough every time she drank milk. This was not typical behavior, so she wanted Simone to see a specialist immediately.  So off we went to Children’s Hospital where they promptly ran a series of tests.  After about an hour, a team of doctors and I mean a TEAM (at least 5) entered Simone’s room to discuss the results.  At first, they couldn’t pinpoint the issue.  They said it could be this or that or the other and needed permission to do even more tests.  I was numb.  Finally, they figured it out. Simone was born with a laryngeal cleft, which in layman’s terms means she had a hole in her windpipe.  Whenever she’d drink milk, some would pass into her trachea because of the cleft.  She simply could not go home until the issue was addressed.  The plan was to repair the cleft (sew it up), but this couldn’t happen until she was 3-months old.  The affected area was simply too small.  In the meantime, she’d be fed through a nasal tube.  Because of the cleft, she had quite a bit of stridor, which affected her breathing.  So they recommended that she stay in the hospital.  I was told I’d have to wait at least 3 months before I could bring my baby home.

When I heard these words, it was like I was having an outer body experience.  I was trying to focus on what the doctor was saying, but I couldn’t get it.  Simone looked perfect.  Of course she was coming home with me.  And if these doctors thought I was going to go home without my baby, then they had another thing coming! Well, after multiple conversations, reality set in and I had to accept the fact that my baby had a very serious, rare condition and would not leave the hospital. I had to accept that she’d be in the hospital for at least 3 months and would have to have several medical procedures.  Yes, I had to accept it.  How?

There’s no playbook available to help a new mom handle this situation.   I had so many emotions coursing through my body.  I was angry, sad, scared, afraid, skeptical — and these are just a few.  I needed help and didn’t know where to turn.  I was lost. So I prayed, putting it in God’s hands.  I also resolved that I had to get myself together.  Simone needed me.  Yes, the doctors and nurses would care for her, but Simone only knew me.  I was her connection to this world.  I would not fail her.

I wish I could say that Simone simply stayed in the hospital until she was 3-months old, had the surgery, and came home.  It didn’t work out that way.  Simone’s respiratory issues intensified so she had to have a tracheostomy.  Then she developed pneumonia, delaying her surgery.  Then she had to get a G-tube.  It seemed that every few weeks something else would go wrong.  And if all of this wasn’t enough, my father died.  Talk about throwing me into a tailspin.  I had been so focused on my baby that I couldn’t be there for my dad as he battled cancer.  I couldn’t help but wonder what I’d done to deserve this.  While I had lots of support during this period, the truth is I didn’t know how to let anyone in.  I didn’t think anyone else could get it, not even my husband.  They weren’t in my shoes.  Only my faith sustained me.

Trust and believe, when you ask God for help, He will answer.  I asked him to guide me and He did.  My spirit directed me to end my “pity party” ASAP and become the chief advocate for Simone.   This would give me purpose.  I’m a lawyer, so I’m trained to ask questions.  I’m trained to analyze the facts.  So that’s what I did.  My daughter’s condition was rare, so I had to ensure that the choices we made for her care were the best.  I researched and confirmed EVERYTHING I was told about her condition and recommended care.  Thank God for the Internet!  I mentioned there was a team of doctors assigned to Simone.  All of them were not good.  I had to get one removed from the team because she recommended a surgical procedure that was not necessary. Thankfully, I challenged her findings.  I actually raised a ruckus. No one was cutting open my baby unless it was ESSENTIAL! Ultimately, the medical team concluded that I was right.  Simone didn’t have to have THAT procedure and that particular doctor was wrong for urging me to simply agree.

Finally, when she was six-months-old, she came home.  She had to go back and forth to the hospital for follow-up procedures until she was about fifteen months, but all issues were resolved.  Yay!

Looking back on it, I have some key take aways I’d like to share. They may help other moms in this situation.

  1. Babies are fighters.  You’d be surprised at how strong and resilient infants are. They will fight to survive.
  2. Educate yourself on your child’s condition.  Doctors can get it wrong.  Do your best to fully understand the medical issue and recommended solution.
  3. Don’t be afraid to challenge your doctor’s recommendations. Ask questions.  It’s your doctor’s job to explain what’s going on.  If you don’t agree, challenge it.  Get a second opinion if necessary.  The more you know and are involved in the medical decisions, the better off you’ll be.
  4. Trust your instincts.  You may not be an expert, but your intuition is EVERYTHING!!!!! Never doubt it when it comes to your child’s care.
  5. Ask for help.  There is another mom in your shoes.  Seek one out.  We’re here.

If you’re in this situation, this may be one of the most difficult things you’ll ever face.  Just remember, you are not alone.

Have you ever faced such an ordeal?  How did you handle it?

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