Six Months Old

It’s amazing how many times you hear, “they grow up so fast.” It really is true, especially after the first child.

Reese is now 6 months old… WHAT? We have had a very busy last few days. This week consisted of all of Reese’s 6 month check-ups.  On Monday the 25^th, we went to the ophthalmologist to verify that Reese can see and that she won’t need glasses in the near future. She passed with flying colors, and was a champ the whole time. She got her eyes dilated, and just smiled at the doctor the whole time. He said not to come back until she’s 2!!!

 On Tuesday the 26^th, Reese had therapy with Rainbows, and they have an audiologist on their team. The audiologist came out to our house and checked her hearing, and made sure there was no fluid behind her eardrums. Reese slept through the whole thing (shocker) and passed with flying colors again! Little ones with Down syndrome have very small ear and nose canals. This being said, it is very common to get ear infections, sinus infections, fluid behind the eardrums, and even clogged tear ducts. Testing the ears every 6 months is very important, so we will see them again in December!

Wednesday, the 27^th was the biggest one… The cardiologist… dun dun dun! Reese has a PFO (patent foramen ovale) and an ASD (atrial septal defect). When we got there, we got checked in, talked to the doctor, and did the echocardiogram. Reese did so wonderful. They swaddled her little arms in and she chewed on her pacifier for the whole 50 minutes, while watching Despicable Me. Then we talked to the doctor afterwards for the verdict. I was hoping to go in there and they say that everything has closed up and we can check on it when she’s 2. Unfortunately, that was not the case. She still has the 2 holes in her heart, but her pulmonary hypertension is gone. The holes are the same size (moderate), but her heart is getting bigger. YAY! The ASD has caused the right side of the heart to be a little bigger than the left, but that is fairly common with the situation. We will follow up again in 9 months and pray that it gets smaller. As of now, no surgery, but unfortunately not out of the woods yet! We will get there…  Taylor is always looking at the bright side of things so we got 2.5 out of 3 for her appointments, so thankful for him!

Reese has been trucking along with her therapy! She is rolling over from her back to her tummy, but then gets stuck. Hasn’t quite mastered the rolling over from belly to back yet, but I have no doubt it is coming soon. She can hold her head up, is loving time in her high chair, and her frequent stroller rides! Also, she gives the best smiles J

Advocate like a Mother!

Who knew at the age of 23, I would have a child with Down syndrome... not me! On December 29th, 2017, after being in labor for only 4 days, I did. 

I begged the nurse at the birth care center to admit me after being in labor for four extremely long days. Thank goodness she finally did. Once I got my epidural, I was ready for a nap. However, 30 minutes later I was dilated to a 10 and ready to go. No nap for me! Reese was born in about 6 minutes. She let out a big cry, then it was silent from there. I could tell her color was a little off , but all I could see were the stars in her eyes. The nurses laid her on my chest for a couple minutes, and then took her for some testing in the little bed next to me. I could hear them talking, and Taylor and I just kept trying to look over and see her. They put Reese back on my chest with the tiniest oxygen mask I have seen, and it was still too big. The OB that delivered Reese (not my original OB) came over to make a statement that would change our lives forever. She asked if we had done any previous genetic testing, we said no as we never felt the need. She responded, "Well, Reese is showing some physical traits of Down syndrome, but I do believe everything will be alright." ......... Taylor said, "uhh, what?" From that point on things were a blur. One of the NICU nurses came over to Taylor and I, and started to point out the characteristics. All while I am still trying to hold this tiny mask on my freshly newborn baby! She pointed out her low muscle tone (hypotomia), sandal toe, almond eyes, fatty roll on her neck, brushfield spots (stars in her eyes), and simian creases on her hands. Shortly after that they took her to the NICU for further testing, and to get her O2 levels up. Taylor went with her, and I watched my newborn baby, that I just carried for the past 10 months being wheeled away in an incubator attached to monitors and oxygen wearing the tiny hat with her name on it. I lay in that hospital bed for another 2.5 hours waiting to see my daughter. I was numb. I was nervous, scared, sad, mad, and secretly hoping the nurse was wrong. This isn't what I asked for. I prayed for a happy, healthy, and sleepy baby. -- That's exactly what I got!

Taylor held my hand and led me to our baby girl. She was laying there in her little bed, connected to monitors. Such a bitter sweet feeling. She looked so peaceful, but all I wanted to do was pick her up and hold her. So, I did! What an amazing feeling. After Taylor and I passing her back and forth for the next 11 hours, it was finally time for us to go to bed. The feelings all came back again.  I was numb. I was nervous, scared, sad, mad, and secretly hoping the nurse was wrong. I wasn't supposed to be leaving her there. 

The next few days Reese passed her hearing test, was clear of cataracts, took her first bottle, had an echocardiogram, confirmed she has a PFO (patent foramen ovale), hypertension, and a diagnosis of Trisomy 21. 

After 4 days in the NICU of tests, tests, medicine, diaper changes, IV's gone wrong, and a few more tests we finally made it home. Reese had a big sister waiting at home for her the whole time. No children under the age of 12 were able to come up to the hospital since it was right in the thick of flu season. Big sister, Leighton, was so excited to meet Reese. Her reaction was priceless. Since then, Leighton has been Reese's second mother!

Taylor and I have had so much support since day one. The geneticist from the hospital was very informational, and explained everything to us in detail. When we got home, friends and family delivered food for weeks. The Down Syndrome Society of Wichita brought the sweetest basket with great books, information, an adorable outfit, and of course a blanket. Reese has also started early intervention through Rainbows United, and sees a therapist weekly. Since we are coming up on 6 months soon we do have a few follow up appointments to get her eyes, ears, and most importantly her heart checked again. We are praying every day that her PFO is closed, and the hole is gone!

I never thought that I would be living this life, but here I am Advocat(ing) like a Mother!

I planned to have this blog to keep others updated with Reese and this beautiful life that God has given us, but also for my own sanity. Writing (or typing) is something I enjoy, especially about someone I love. I'm sure I will get sidetracked and post about other things in my family, but we're all in this together. 

I'm going to add some facts about Down syndrome that others may not know:

1. There are 3 different kinds of Down syndrome -- translocation (4%), mosaicism (1%), and trisomy 21 (95%). Reese has trisomy 21. 
2. The average person has 46 chromosomes (23 pairs) - with Trisomy 21, this means there are 3 copies of the 21st chromosome. 
3. Roughly 60% of people born with Down syndrome have heart defects.
4. It is the most common chromosomal condition. 
5. In 1983 the life expectancy for a child with Down syndrome was 25, it is now 60.

DownRightReesey