First day alone

So, Monday was my first day alone with Wes. It went pretty well, but I have to tell you that it started out with a bang. An explosion actually… from his bum! Yes, I was mid-diaper change and all of the sudden I hear a grunt and feel a splash of warm “Frenches Mustard with seeds and scrambled eggs” fecal matter followed by a golden shower. All of which I blocked with my hand. I just laughed, it was too funny and just perfect for our first day along together. I swear if it were any other kid, I would have been royally grossed out! In any event, after the poopscapade {which I DID NOT photograph, LOL}, Wes had a makeshift bath in the sink {much easier than the tub I might add} and got all prettied up.

Monday was a big day for both of us since we had an at-home nurse visit and I had to make many calls and appointments for Wes. It really wasn’t cumbersome, but having a newborn in general makes it difficult to get much done. I didn’t eat lunch until 2:30 if that gives you any indication of how my day went {all of you SAH/ maternity leave mommas know what I’m talking about}. I think a good momma forgets her needs for her baby’s needs, but food now and then is necessary, LOL. At least I MAKE time to shower. In any event, I felt pretty accomplished because I started the ball rolling on early intervention {waiting to hear back from a case worker type person}, getting an appointment at CHOP and the EPADSC for an evaluation of his needs {should hear back in the next few days}, and contacted my pediatrician regarding Wes feeding followed by a call with the results of the nurse visit.

I have to tell you, my nurse from yesterday is a saint! She is a former teacher who turned to at home nursing visits because she loves babies so much. She shared with me that when she was told that one of her visits for the day was with a child with Ds, she was thrilled. “Adrienne, children with Down syndrome are my favorite children to see. These children are so loved!” {I agree Suzanne, and this little man is adored by so many.} Suzanne checked our vitals and they were good. Wes only gained an ounce from his last check up, but he is up 2oz from his birth weight, so we’re really doing okay! He’s just so teeny tiny and a whopping 5lbs 13 oz that Dr. H would really like to see more improvements; like a half ounce a day. While there, I disclosed to Suzanne that I was struggling to produce, let alone keep Wes’s interest long enough to eat. {Children with Ds are notoriously sleepy babies, but don’t let that fool you that they’re full and content. They need to eat so wake them up!} Luckily for me, she is a pretty well known and highly respected lactation consultant and she was thrilled to help us out! I mean, Suzanne stayed an extra hour with us, it was so amazing! By the end of the trip, Suzanne had Wes feeding and she was in tears that she helped us. She even gave me a kiss on top of my head before she left because she was so happy for us. That woman was so sweet and I hope to meet her again one day.

Dr. H, Wes’s pediatrician, was thrilled with the news once I called him. He just now wants me to get as much food in him as possible {BF & supplement with preferably BM or formula} and keep him awake for longer periods of time. Within the hour, I had Wes under his play yard and he was loving life with Captain Calamari! Within 15 minutes, he gave a yelp and was out like a light. Oh and yes, little one rolled to his side, not sure if you can tell by this picture.

My final call was from Amanda; a mother of three who’s middle child has Down syndrome and successfully nursed for 18 months. I was put in contact with her by a lactation consultant from the hospital She gave me awesome tips that I will share with any momma-to-be in “the club”. Amanda, I know you’re reading, so if I missed anything please feel free to add. 🙂 My brain is still fried from yesterday, haha!


Be a huge advocate for your child, i.e. getting services, even if they excel in areas.
Wes has decent muscle tone and his neck and his joints do not hyper extend. However, it doesn’t mean that he has the typical muscle tone or that his current “state” will remain the same.

Get PT and OT immediately. If there is any hesitation from the service provider to give these services, contact your local Ds center immediately to be evaluated. More than likely if you see it as a momma, they will too. Trust your momma instincts.

Have your child evaluated during their worst time of the day. This will be especially important if you have a happy and chill baby like Wes. If your child is happy, explain what a bad day looks like. Just like it was when I was in triage about to give birth – do not smile or they will send your home! OR, in this case, they may not provide an adequate amount of services.

People will drop you. Yes, it’s true, some friends will distance themselves from you once your child with Ds arrives. These people clearly struggle with coping, though the parents might be fine with the dx. Clearly, they are not friends. You will find even better friends through this experience; ones you never thought you would make such strong bonds with. Tides changes, friends change – it’s all good! So far I have been lucky and have not lost any real friendships, but it’s still early. I think my friends know that I’m cool with the dx and it makes them feel more at ease.

You will drop others… (this is my addition)
I have dropped some really negative, down-in-the-dumps toxic individuals from my life and my Facebook account. These people are not worth your time or energy. They are the Once-ler to your grove of Truffula trees. Be your own Lorax and speak for your little tree. Kick your own behind up into the clouds away from their toxic smog because you don’t need their Thneeds, AKA problems.



The more positive you are about your child, the more others will accept him/ her.
It is true, just look at my blog. I purposely created this blog for YOU. This blog is my way of making you feel comfortable with my son. Just look at him, he’s amazing, and I hope you see that too. The amount of love we received via cards, emails, blog posts, Facebook messages and texts have been unreal; almost to the point that I struggle to respond to everyone. I usually have maybe 50-150 views per day prior to Wes’s birth. The day after he was born it skyrocketed to 1,240 views and has held steady around 250-400 views per day. Keep it going, spread the word! This is my moment when I get all Sally Fields, “You like Wes, you really like him!”

Join some form of support group. I am already involved in great Facebook support groups and have made great connections on there. I also have an amazing friend {who is visiting tomorrow, Yay!} from my hometown that is just two years ahead of me in this journey for support. However, I have still failed to make too many local connections. A lot of it was due to not having Wes with me as my “little supporter”. Wes is my little Golden Ticket and I didn’t feel like part of the club fully until here arrived. In any event, I will be looking into a support group in my county today.

So, that’s what I’ve got for you today… I plan of writing a response regarding the email I received from Leslie Kemm Gudel, the creator of Nap Nanny. She gave me some information about Nap Nanny that I found really important to share. Oh, and I will share my nightmarish night I had trying to figure out how to keep Wes safe in his crib. {boyfriend set off the movement monitor, oye!} Yes, I am a first time mom, and yes, I am THAT neurotic!

Advertisements

2 thoughts on “First day alone

  1. Amanda says:

    I am completely in awe of you! I forgot to mentioned some things just to get you started into the world and take advantage of what is out there for support – i will email just so you have that info. Also if you are struggling to find a support group in your county – Chester County would happily have you 🙂 Wes is a very luckily little one to have been born you you and your husband. I look forward to watching Wes grow and hope to meet you all in person someday soon!

  2. Tara says:

    You were an awesome MoM, even before you had an awesome baby! Anybody in your life I’m sure is proud to call you a friend – and should be.
    And he is just the cutest little boy!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: