213 Days!

malachi 7

Y’all has 7 months really passed by? WOW! It’s been so so busy this summer, and so many changes have actually happened with Malachi within the last two weeks!

It’s hilarious that he actually does NOT want to crawl properly (he always falls down and does like a superman position in order to not do it right) but he usually gets to what he wants by turning precisely in the right direction and streeeetcchiiinnggg his long body to reach the object he is wanting.

He is getting SO big, so fast and I swear with the way things are looking (as he is seriously trying to already pull up on stuff) he might just be walking before he crawls! I have been trying to keep up with weekly pictures of him, because when he turns one, I want to make a collage for him and hang it up in his room.

Weight: 20 pounds (but feels like 40 when you are carrying him all.day.long) LOL.

Length:27 inches taken at home


-To be held! This teething machine has stuck to me like glue lately!
-To be loud!  I swear he thinks the way to be heard in this loud house of ours is to scream! Lol!
-To eat! He literally doesn’t want ANYTHING to do with baby food, and will eat smushed up table food, or just taste flavors of different foods!
-To suck his thumb when he is sleeping! I was a thumb sucker (and it did a major number on my teeth–sorry mom–but I am glad that he uses it just for nap/bed time and he doesn’t keep it in his mouth all the time).
-His bath! He recently learned how to splash and it is his favorite thing!!

– When are out of sight and he thinks he is by himself–cue the elephant tears!
– Getting dressed/undressed! He still doesn’t like the fact that people have to wear clothes!

Teeth: He has gotten 2 teeth in the past 2 days! Poor kid!! But yay, all that drooling and fussiness will hopefully subside soon once these pop through!

He says mama when he is with Shane and won’t do it for me, lol–but he hasn’t really said any more words.  He is trying to sign milk and more, but hasn’t gotten that fully either! He definitely know when you sign those two things to him though!

Milestones: He just started to pick up his back left leg to try to crawl to what he wanted but won’t fully do it yet, and he walked in a walker at my parents house (yay!) and he officially is a belly sleeper! Shane and I both are (as are all of our older 4 kids) so we knew it would probably be in his future!


MD appt:  9 month well check! And I need to schedule a dental visit now that he has some teeth!

I will leave you with a couple of adorable pictures! Thanks for stopping by!

©2018 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved.

43,800 minutes

1 month with the johnsons (1)

I can’t believe baby girl has been with us for an entire month already! To say it’s been a whirlwind, is an understatement.

She seemed so fragile when we were taking her home from the NICU, not really knowing what to expect, especially in all that she has been through in her short 4 months of life in the hospital.  Now she seems so much stronger, more vocal, more awake then ever, and makes people fall in love with her, after meeting her for the first time!

She still likes to give us a scare, when she chokes on her saliva.. and the nurse mode comes out of me, and I am like:

  1. Sit her up if she is laying down
  2. Pat her back to help the secretions flow down
  3. Suction, Suction, Suction to give her help, so she won’t have to try to swallow a ton of saliva at one time
  4. Reassure her that everything is going to be okay.. just hearing our voice makes her know she is in good hands.
  5. Love on her once she has loosened her body, and isn’t so stiff any more, and let her know she can finally relax.

She has had 4 family visits, 5 doctor visits, and 2 visits from CPS.  It’s crazy to me that we have literally spent hundreds(actually over a thousand) miles driving her just in the last month, and taking her to all of her destinations, and we wouldn’t trade it for the world.  Our biggest concern is the unknown future for baby girl. She is supposed to be on the track for adoption.. but the way the legal worker was talking to me on Tuesday after her visit with her parents, sounded to me like he is trying to get mom and dad to better their life, to get baby girl back.  Either way, I know God has already planned out her future, and will place her where and when she needs to be, and that Shane and I shouldn’t worry.. that we should just follow His lead and trust in Him. Sometimes, it’s just hard.

She has transitioned SO well to basically our entire family.  She loves all of our voices, and loves when the kids (little man and Brielle) are playing and running around the house, because she will try to turn her head and look for where the sound is coming from.   I can’t wait to watch their relationships grow and nourish over these next few months.

She has had all 3 of her major appointments this week, and let me just give you a little update.. Her eyes have not changed in the last month (which is great news considering if you read my post here to see what she started out with).  Her pulmonologist appointment went great as well, he doesn’t see anything wrong with her breathing, and very happy she doesn’t have a cough and he did suggest that we get her synergis shots this flu/cold season because if she develops RSV (which you can read about here if you don’t know much about it), she will most likely end up in the hospital on the ventilator, because she isn’t strong enough to fight off an infection. Her developmental specialist actually didn’t assess her this appointment, because her adjusted age (the time she was supposed to be full term) is only 1 month old, so we have to wait until November (she will then be adjusted to 4 months old) to do a full assessment.  The nurse did an amazing job giving me tips and exercises to do (to prevent her from getting stiff joints) and ways to just help her grow (and we also left with 5 cans of formula.. that nurse was seriously amazing!!).  I have already started the exercises, and I can’t wait to watch her soar in the next few months.


We are so very blessed to be able to love on her, and take care of her, and can’t wait to see how much she grows!

©2016 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved.



The anticipated confirmation


So this morning I received a voicemail stating the heartbreaking news that any genetic counselor can deliver.( I told her to leave a voicemail stating the results because I was scheduled to be working on the expected day the results came and I didn’t want to not know.) She did confirm that our result from the amniocentesis showed that for sure that our baby girl has Trisomy 13.  Trisomy 13 happens in about 1 in every 10,000 newborns.  It is where there is 3 copies of the chromosome 13 instead of two (the usual).  When the extra genetic material is attached to the extra chromosome it is called translocation.  Our genetic counselor stated there was no translocation.  In other words, this means that it did not come from Shane or I (inherited), instead it occurred when the sperm and egg formed the fetus.
Usually some signs and symptoms show that the baby might have cleft lip or palate, clenched hands, extra fingers or toes, low set ears, small eyes, small head and many more problems.  The results from our 18 week ultrasound described that she one had one artery and one vein which is usually a sign of a congenital heart defect.  Our MD did state that she may have seen a hole in her heart, as well as some white matter floating around on the inside.
I know most people would think this is the worst news in the world to hear, but from having experienced this before with our first son having trisomy 18, spontaneous as well and not coming from Shane and I, definitely puts in a different state of mind then we were during our first pregnancy.  We are going to research the best hospitals and doctors and make sure that she has the ability to live life to the fullest, even though many articles state that these babies don’t have  a long life-expectancy.  Shane and I feel like God doesn’t give us anything we can’t handle and even though it may seem tough at first, God already knows the plan of what’s going to happen to our baby girl.  We are going to fight and give her the best life possible, regardless of what any doctor might say or disagree with our wishes.
Most people at the age of 25, would have no idea what it’s like to be Shane or myself going through this at such a young age.  This happens, and yes even though it is very rare and most people just hear of healthy babies being born all the time, it happens way more often then many people think.  This is just a diagnosis and it is not going to change how much we love and care about her.  I just wish that before people want to judge us negatively with continuing on with the pregnancy and giving her a fighting chance at life, despite what all the doctors may think, that you keep the negative opinions to yourself.
We pray every day, and if we could ask for many extra prayers as we continue with this pregnancy that people pray that we can carry her to full term and that we have a safe and healthy delivery for the both of us.
We appreciate all of the continued love and support from our families.


©2014 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved