New Pics

Girls are now 14 months old (11 months gestational). 

The girls and their new trike. We can't wait to take them out in the Spring. 

Another Article About Flu Season

I found this article on Johns Hopkins Children's Center's Facebook page.

More info on the importance of the flu shot and the high risk for preemies. 

The holiday party season is no time for very young infants to be mingling with germs that prevail this time of year, according to the Centers for Disease Control and Prevention.The holiday party season is no time for very young infants to be mingling with germs that prevail this time of year, according to the Centers for Disease Control and Prevention.

From November through April, respiratory syncytial virus (RSV) typically has its season in Maryland, said Dr. Julia McMillan, professor of pediatrics at Johns Hopkins Children’s Center. The virus hits its victims with symptoms similar to cold virus, but RSV can threaten the lives of those with immature lungs, either because of youth or premature birth.

It may be spread by older children and adults, who get it.

“It’s very contagious,” McMillan said. “(Older patients) just don’t get very sick.”

She estimated that almost every child has had the virus by the age of 2, but getting it before the age of 3 months – or older in a child born prematurely – can land them in the hospital. They may need oxygen and intravenous feeding in the most serious cases.

Infants’ airways are narrow, and RSV makes breathing and nursing difficult, she said. Babies may exhaust themselves and dehydrate, laboring to breathe and eat.

They may struggle to breathe as much as once per second. Age, larger airways and immunity after the first infection make subsequent RSV infections less likely to seriously affect the child, she said.

RSV is the major cause of the condition bronchiolitis, and may cause pneumonia.

So far this season, the number of cases is high, according to the CDC, and about as predicted, McMillan said.

“Every year, we have a very big epidemic,” she said.

Follow Patti S. Borda on Twitter: @FNP_Patti

RSV facts

Leading cause of infant hospitalizations

125,000 infant hospitalizations each year from RSV

400 infant deaths each year attributed to RSV

Under 2 months old or premature* babies most at risk

Maryland season: November-April

Symptoms: persistent coughing; rapid, difficult breathing; fever over 100.4 in infants under 3 months old; bluish color around lips

Details: www.RSVProtection.com

* Born before 37 weeks gestation

Source: Centers for Disease Control and Prevention

World Map on Preterm Births

Interesting world data on preterm births.  The map is a few years old, but I think you get the point. 

I am sorry I can't remember where I found this. If I see it again I will update with the source. 

Merry Christmas

It was the girls 2nd, 1st Christmas. Their first Christmas was technically in the hospital, but it is their first Christmas home. It was an awesome day with visits from their grandparents, great-grandparents, and an uncle and aunt. The girls sure are loved! 

10 Lessons My Preemie Taught Me

1. Community – Having preemies taught me that sometimes we are on the giving side and sometimes we are on the receiving side.  And being on the receiving side is not a bad thing.  It blesses others to be able to give, so receive with a thankful heart.
2. Patience -  In the NICU, you hear the term “wait and see” often.  You are told you will have to “wait and see” what the brain scan shows.  You will have to “wait and see” the results of the eye exam and the hearing test.  “Wait and see” is not easy to accept.  We want answers now.  In life, sometimes “wait and see” is all we can do, and we have to learn to accept that.
3. Perseverance – If you have ever seen a premature baby learn to breathe, you know the meaning of perseverance.  Breathing is an involuntary reflex unless you are a preemie.  Many times they repeatedly try to wean from the ventilator.  They may have many trials before successfully moving on to lower oxygen support.  Preemies don’t know the phrase “I can’t”; they just keep on trying.  It’s a beautiful thing.
4. Trust – You learn to trust your child’s doctors, nurses, and therapists.  Most importantly though, you learn to trust yourself.  I learned to make decisions on who I trusted to care for my babies.  I learned to trust my own instincts.
5. Hope – When you are given impossible statistics yet still believe it is possible, you have learned what it means to hope.
6. Resilience – The surgeries, the tests, the tubes, the scars – it is amazing what these premature babies overcome.  Most of these babies have had more medical tests and surgeries in their months in the NICU than the rest of us have had in our lifetimes.  They show us what it means to be resilient.
7. Gratitude – I never understood the depth of gratitude until I had my preemies.  In the NICU, parents are grateful when their baby gains an ounce, drinks a few milliliters, breathes on their own, and even pees or poos!  It’s the little things in life.  My preemies have taught me to be grateful for everything!
8. Strength – My twins were so fragile and weak on the outside.  Their tiny lungs were too weak to function on their own.  They needed ventilators and steroids and too many other drugs to name to survive, and yet, their spirits were so strong.  They taught me to be strong when I felt broken.  I knew I had to be strong for them.  I had to believe in them.
9. Empathy – Before I had my twins, I felt I was a compassionate person.  After our NICU journey, I feel I am a much more empathetic person.  Compassion is defined as the consciousness of others’ distress; whereas, empathy is defined as the ability to share someone else’s feelings.   While everyone’s journey in life is different, I now can relate to the feelings of fear and hope and joy on a different level than before.
10. Perspective – The biggest lesson of all I learned from my preemies is perspective.  If it’s not a “life or death” decision, it’s probably not that big of a deal.

I saw this on my friend's Facebook page and I had to post it to my blog. The article comes from Preemie Babies 101. It was written by Michelle Hensel. Michelle is a mother of twin micro-preemies like me. 

Preemie Babies 101 is a great Website for preemie parents to check out. You can also follow them on Facebook. 

Christmas Eve

Last Christmas Eve Dan and I were surprised by one of our favorite NICU nurses. She arranged with the respiratory team and the doctors for our family to be together and spend some time together just the four of us. With a portable heart monitor and oxygen Elizabeth was able to take a visit to Abigail's hospital room. The girls were just a few rooms apart, but it would be the first time that our family would be all together. It was truly the best Christmas gift anyone could have given me. It's so hard to believe that we spent last Christmas in the hospital and today the girls are crawling and laughing. I feel very blessed! 

In this picture I am holding Abigail and Dan is holding Elizabeth. 

I hope everyone has a wonderful holiday. 

If you are a Parent of a child in the NICU this holiday my advice is to try to make the best of it. The truth is it really just stinks, but just focus on how beautiful your baby is and remember its only for the time being. It won't be this way next year. :) 

A Crazy Week

It has been a crazy week. Abigail and Elizabeth  both have been under the weather with ear infections. They both got some new teeth this week. Abigail got 3 new teeth and Elizabeth got two. 

I have been under the weather myself and I am beyond tired. My job as a kindergarten teacher wore me out this week.  My class was so excited and extra busy, but I can't blame them. They are excited for the holiday and I am excited for 2 weeks off! I love being a working mom, but I am thrilled to get to spend the next two weeks with my girls! 

Pray that my girls feel better soon! 

Toys R Us Differently-Abled Ad

A big thanks to by aunt for sharing the below info! :)

Did you know that Toys R Us has a Differently-Abled ad? I didn't know anything about it. It's pretty cool because it groups toys together by skills like fine motor or gross motor. The ad even recommends toys that help promote language. 

Check it out at:

http://www.toysrus.com/shop/index.jsp?categoryId=3261680 

A Dirty Diaper...

What I love about NICU nurses is that from the beginning they encourage parents to be hands on. It may not be a lot, but changing diapers was one of  the first ways I got to bound with my girls. 

Baby Giggles!

Liz laughing at her sister. :)

 

 

Great-Grandparents

My girls are so lucky to have great grandparents in their lives.  I was blessed with wonderful grandparents and now my daughters get to spend time with them too. I can make a list of all the amazing things my grandparents have done for me, but one thing that really sticks out is how much they care and do for Abigail and Elizabeth. They are there in a drop of the hat to help in anyway they can. My grandmother even drives them every Wednesday to therapy because I have to work.

I love you both so much and I am so grateful for all that you do to help with the girls.

Abigail, Elizabeth, and GG (great gran). :) 

Great Pop feeding Abigail.

Cooking it Up

Here are some great pictures of the girls that I took yesterday. I am trying to keep them busy the best I can. They sure make cute cooks! 

Any moms out there with recommendations on ways to keep two babies busy? Remember we have to stay in the house. 

Extreme

According to this chart my girls were "extreme." No surprise there. Everything was extreme. The 145 days in the NICU was extreme. Abigail's time spent on the ventilator was extreme. The amount of times Elizabeth dropped her heart rate and stopped breathing and then turned blue was extreme. My anxiety level was extreme.  I can go on and on here but I won't. 

I would have given my left foot for my girls to have made it to any other section of this chart, but thats just not what happened. 

I remember being jealous of babies that were 30- weekers in the NICU,  but I also know for those parents it is a stressful situation. 

The truth is having a baby in the NICU is extremely hard no matter what.  If you are a parent out there with a little one in the NICU keep strong! Just love your baby to the extreme and take it one day at a time. 

Throwback Thursday

I decided to post some pictures of the girls this time last year to show how far they have come. 

They sure were small then, but they have always been very cute! 

Elizabeth

Abigail 

Abigail GI Update

A few weeks ago Abigail pulled her G-tube out. I always knew it was going to happen and finally it did. The day it came out I called over to her doctors office to just let her doctor know it was out. 

Abigail had not been using it for 2 months, but her GI doctor was just being conservative by leaving it in just a little longer to watch her weight pattern. When I left a message with the nurse she instructed me to put in the replacement G-tube that we had at home. I told the nurse that the G-tube hole in her tummy had already began to close up. The nurse then told me that I needed to take her to the closest hospital in the area so they could dilate the hole and get  a replacement in. I told the nurse that Abigail was a twin and that I was home alone with them and that I wasn't going to bring my infant preemie twins to the hospital to replace a G-tube that she wasn't even using. 

The nurse the proceeded to lecture me on the importance of her weight gain and that she may need the tube in. Well, lets just say this really upset me because no one knows more than me the importance of her weight gain. It is one thing that is always on my mind, so I told the nurse exactly that. I then told her to just let the doctor know her tube was out and ended the call. Her doctor later called me and we came up with a plan. 

Since that phone call I have been working like crazy to try to get Abigail to eat and gain weight. I have been trying different foods to see what she likes and adding calories to her formula per the doctors orders. I was determined for her to gain weight without the tube. 

Fast forward to today...

Abigail had her regular check up with her GI doc. She has an appointment every 3 months. Today she weighed 17 pounds and 2 ounces! That was a great weight gain for her. Her doctor was pleased and said that she gained more weight than expected!  So we did it! Take that mean nurse! 

The doctor now wants me to introduce yogurt on this crazy schedule to see how her tummy handles it.  On to the next battle. :) 

Just remember moms we have to speak up for our precious babies and remember moms know best. 

Here is a pic of the little scar left behind from the G-tube.