No pictures, but its RSV season!

Since RSV can easily put my preemies back into the hospital, we will be taking precautions this winter to help protect them.  We all have recieved the flu shot and the girls will be getting monthly injections of Synagis to help protect them from RSV.

We ask that if you do come and visit please be aware that this is serious...expecially with Rylan's fragile condition. A common cold can easily knock both girls into the hospital.




I took this from another website.


Although RSV is the most common cause of respiratory tract infection in children under five years of age, most people are unfamiliar with the disease. RSV can be particularly serious in infants born prematurely, children under the age of two suffering from chronic lung conditions, and young children with hemodynamically significant congenital heart disease. Multiples are also at increased risk for serious RSV disease. (1)


Virtually all children are exposed to the virus during the first two years of life and re-infection throughout life is very common. (2) Infants born at less than 36 weeks gestational age are at asignificantly elevated risk for severe RSV disease.

 

According to the Centers For Disease Control and Prevention (CDC), each year, up to 125,000 children are hospitalized with serious RSV disease and some of these children may die from RSV complications. (3)

 

For otherwise healthy children, RSV usually amounts to little more than a cold. However, for preemies and other at-risk infants, the health consequences can be much more serious. In the US, approximately 125,000 children are hospitalized each year with serious RSV disease and sadly, some of these children die.

 

RSV spreads easily from person to person via respiratory secretions. The chance of spreading the virus within a family is very high. Many times school-aged children introduce the virus into the family. Despite strict infection control procedures, hospital nursery units, day care centers and other similar institutions are also at high-risk for RSV outbreaks.

 

To help protect your baby, there are simple steps that parents and caregivers can take:

 

Have family members and caregivers wash their hands with warm water and soap before touching the baby (see more about proper hand washing)

 

• Avoid being around the baby if you have a cold or fever  
• Avoid exposing the baby to other children with cold symptoms  
• Keep the baby away from crowded places  
• Never smoke around the baby 

   
taken from http://www.preemiecare.org/rsv_resourceshtm.htm

Little Heart

We visited the cardiologist this past Friday and received great news!! No heart surgery! We are so thrilled right now!

On Thursday we meet with the surgery team at CHOP to discuss getting a G-Tube yet again for Rylan. We are unsure if we are going to go through with it or not now that she doesn't need heart surgery, but figured we would talk to them and see what they say.

Dakota is fully crawling now. She does the army crawl with a little mix of belly off the floor crawling. She is quite the chatter box too! I love hearing her "talk." Dakota says "ba-ba", "ma-ma" and "da-da".

Rylan has also discovered her voice more recently and is saying "ahhh."

Yup, my girls are tutu models!!! I have started making some tutu's up and they are for sale at RD Hair Clips

VACTERL

Firstly, Rylan did not get her G-Tube due to her bowels covering her belly, so we need to meet with surgery so they can do the surgery in the OR.

Not sure who knows what, but Rylan has a syndrome called VACTERL. For a while I had a hard time believing this and more recently have started feeling comfortable talking to people about it. So hear goes.

VACTERL is an acronym for several anomalies. To be classified with VACTERL you need to have at least three of the characteristics.

Vertebral - Rylan has a few of her vertebrae fused as well as two of her ribs. This should cause her no issues in the long run.
Anus - Rylan has an imperforate anus. She has a loop colostomy in which she stools through. This will need corrective surgery. The surgery will consist of two or more procedures.
Cardiac - Rylan is dextrocardic and has an ASD and PDA. The ASD may or may not need surgery (we find out tomorrow)
Tracheoesophageal fistula - do not have
Esophageal atresia - do not have
Renal/Radial anomalies - do not have
Limb defects - do not have

crawling and g-tubes

So clearly it's been a month and no updates! Maybe that would be a good thing, no news is good news.

Dakota is almost crawling! She is currently turning in circles on her belly and scoots backwards! I am so not ready for them to be mobile.

Both the girls can sit up independently now too! I can't believe 8 months ago they were 3 lbs. each. It is truly a blessing!

We finally broke down and decided to get Rylan a G-Tube. We think it is what is best for her and will help her grow some more. She may need surgery this coming fall to remember an ASD closed. We are still hoping for a miracle and her not to need heart surgery. We go back for our cardiologist follow-up in August.

Picture Post

walk in the stroller, dakota fell asleep

rylan's big smile

rylan and dakota getting ready for our walk

both fell asleep playing

sleeping together in rylan's crib

Rylan's homecoming

Rylan came home yesterday afternoon! I couldn't stop smiling and staring at her. I fell in love all over again yesterday! She is doing awesome is soooo happy to be here!!

Rylan is finally where she belongs...seven months later!

Due Dates

A full-term pregnancy is about 280 days. I was pregnant 221 days. So we were 59 days early. They generally release pre-term babies around their due date. Dakota read that book and came home at day 62. Rylan on the other hand did not! Rylan will be discharged Thursday and it will be day 202! That is almost my full pregnancy!

Some more interesting numbers. Rylan weighed 3lb 2oz when born and is now 10lb 8oz! She gained 7lb 6oz! Dakota weighed 3lb 14oz at birth and is now 12 lb 6 oz! She has gained 8lb 7oz! It is amazing how tiny they look, but how big they look at the same time knowing where they came from.

Rylan did have a rougher start than Dakota, but she is the strongest little girl I ever known. She goes through her day without any tears and always smiling. We couldn't be more excited to finally have our family together under one roof.

Big News!

I haven't blogged in a while. We have been super busy getting ready for... RYLAN'S HOMECOMING! Yes, that's right, Rylan Lee is FINALLY coming home after 6.5 long months! We are so excited. We have been rearranging the house to make it more “Rylan friendly.” Basically our living is now Rylan's room/playroom. Our dining room is now the dining room/living room. I will add pictures when I get things cleaned up. Here's a few from my first Mother's Day which was perfect!



Taking a walk in the hospital

Hanging out on the couch

Daddy and the girls...Dakota was being silly!

NG

Saturday, April 24th at 3:15pm Rylan Lee went NG! So what the heck is NG you ask!

NG is short for nasogastric, which is the type of feeds Rylan is getting. In English, she has a feeding tube that is passed through her nose and travels all the way down to her belly. Before she was being fed past the stomach to reduce any reflux or food aspiration. We ruled out aspiration during a study they did, but we also confirmed she has reflux. No surprise there! So she is on some meds and so far, she is tolerating her feeds.

We also attempted to bottle feed her Monday evening. She drank about 4cc's, which is about 5 drops if that. 30cc's equals an ounce. We tried a regular nipple, but she chews and doesn't suck, so we tried a cross cut nipple (thanks for the idea Alycia W.!) and she got a little milk. She wasn't feeling to good, so it probably wasn't the best time to try. I am going to try and get a hold of lactation today and see if they can meet with Rylan and I and attempt breastfeeding.

Dakota is feeling much better! Thank goodness! She is back to visiting Rylan and being her silly self!

Caths and Colds

Rylan had her cath on Monday and good news, NO hypertension!!! She does have extra blood flow due to the PDA (hole in her heart), but the doctor just said she needs some more time to grow and it should close on its own.

Dakota has her first cold. She had a fever of 101 on Sunday evening, while we were at the hospital. She has had a cough since Saturday and just got really congested today. We went to CVS and bought her a humidifier. Hopefully that will help her.

We are still waiting on the waiver for our nursing care.

short update

Rylan's cath is scheduled for this Monday, still don't know a time, but hopefully we will know on Sunday more details. Rylan just hit the 10lb mark which is a big milestone! I can't believe how big she is getting. She is really doing so much more now. She is able to hold her head up better and when being pulled by her arms to sit, her head doesn't lag. She also wants to stand all the time. She is always smiling at us too.

Dakota got her Synagis shot on Wednesday and also got weighed. She weighs 11lbs 5oz! It is amazing how quickly they grow. Dakota will drink about 5oz every 4 hours and is sleeping through the night (bed at 8pm, wake at 4:30am, back to sleep til 7am). It is nice to get some sleep!