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. 

Signs Your Child May Have Cerebral Palsy

Since cerebral palsy is most often diagnosed in the first several years of life, when a child is too young to effectively communicate his or her symptoms, signs are the primary method of recognizing the likelihood of cerebral palsy. Cerebral palsy is a neurological condition which primarily causes orthopedic impairment. 

Cerebral palsy is caused by a brain injury or brain abnormality that interferes with the brain cells responsible for controlling muscle tone, strength, and coordination. 

 The eight clinical signs of cerebral palsy involve:

 • Muscle Tone

 • Movement Coordination and Control

 • Reflexes

 • Posture

 • Balance

 • Fine Motor Function

 • Gross Motor Function 

• Oral Motor Dysfunction 

 I noticed that Elizabeth had very tight muscle tone and her gross and fine motor function on her left side was different from her right side. I noticed this when she was about 5-6 months old. 

Her doctors at Kennedy Krieger diagnosed her with a neuromotor abnormality but after an updated MRI and a visit with her neurosurgeon at Johns Hopkins it was decided that she did have CP. If any parents have any questions about her CP, please feel free to ask. I am happy to discuss what we have been through so far.

  I found the above info from CerebralPalsy.org #CPorgInformation

Happy Thanksgiving!

Today is the girls first real Thanksgiving. Last year they were in the NICU and my husband and I ate Thanksgiving at the Ronald McDonald House. It was a wonderful meal, but nothing beats being home with your family. 

This year I am thankful for my two beautiful girls. They are so strong and they amaze me every day. I am also thankful for my husband who has supported me during this hard year. And finally I am thankful for my family for all of their hard work and support with the girls.  I got a few amazing friends out there too... you know who you are. :) 

We are truly blessed! 

Premature birth rate continues to drop

I recently read the below data. I found it very interesting. 

Premature birth rate continues to drop but is still the highest among other nations. According to a report by the March of Dimes, the preterm birth rate in the United Stated fell for a sixth consecutive year in 2012. 

Premature birth can lead to many serious health complications including developmental delay and cerebral palsy. 

Since 2006, about 176,000 fewer premature babies have been born in the United States.  However, even though last year's U.S. preterm birth rate was the lowest since 1998, the nation again earned a "C" on the March of Dimes report card. 

"Although we have made great progress in reducing our nation's preterm birth rate from historic highs, the U.S. still has the highest rate of preterm birth of any industrialized country. We must continue to invest in premature birth prevention because every baby deserves a healthy start in life," said Dr. Jennifer Howse, president of the March of Dimes.

 

I found the above info from CerebralPalsy.org #CPorgInformation

Map is from the march of Dimes website. Search Report Card Data

Interesting Data

A new study published in the journal Pediatric Research shows that boys are 14 percent more likely to be born premature than girls and are at a greater risk of developing a disability. "One partial explanation for more preterm births among boys is that women pregnant with a boy are more likely to have placental problems, pre-eclampsia, and high blood pressure," conditions which are all associated with preterm births, said the research team leader Dr. Joy Lawn. For the study, the researchers analyzed data from more than 15 million preterm babies worldwide. Of the 13 million who survived beyond the first month of life, 4.4 percent had mild disability and 2.7 percent had moderate or severe disability. 

 Info taken from CerebralPalsy.org #CPorgResearch

And now some cute pics of my girls...

RSV Info

The girls had their first RSV vaccine last week. They will be getting it each month until March. Abigail got her shot first and immediately cried her little eyes out. Elizabeth started to cry because Abigail was crying, so Elizabeth actually cried during her shot and cried even more after her shot was over. And to think...4 more to go! 

Abigail was approved by our health insurance right away for the RSV vaccine, but I had to do some fighting for Elizabeth to get it.  Insurance companies do not like to pay for it because it's over $1,000 per shot.  Elizabeth was originally denied the RSV vaccine, but after several phone calls and  going through the appeals process she was finally approved.

The girls remain on lockdown until flu and RSV season is over. The only places they are allowed to go to is doctors appointments and to their therapy appointments. The girls physical and occupational therapist actually wear face masks when they work with them to be safe. Despite being very careful my girls have already had a cold and an ear infection and had to be on antibiotics for 10 days last month. This is going to be a long cold and flu season, but we gotta do what we gotta do. 

Check out the poster I found the other day. It has some really great info on  it and  it explains why preemies are at such a risk. 

Health Insurance and Early Intervention

As I previously mentioned I attended a preemie conference last Sunday. I learned a lot of information about reaching developmental milestones and taking advantage of therapies, but one thing that I liked most of all was speaking to other parents. It was comforting to know that I was not alone and there are other parents out there learning to take care of preemies just like me. 

I spoke to one mom and it made me realize how well my girls are doing and how lucky I am to have the job I do with the wonderful health benefits I receive.  The mom I spoke to told me about her twins who are currently 20 months old. One of her twins has CP like Liz. He is 20 months old and is just now learning to crawl. She told me that her insurance will only cover 26 visits a year. If you do the math, that is only 2 therapy visits a month. My heart hurts for this mom. She was clearly trying to do and learn anything she could to help her children, but insurance has caused a road block.  

Since Elizabeth is diagnosed with CP my insurance plan has NO limit on the amount of therapy sessions she can receive. When I think about how far my girls have come I know a lot of it is because of all the OT/PT therapy they receive and all that I have learned to do with the girls at home from their therapists. 

The conversation with the mom made me realize how much this country needs healthcare reform. That 20 month year old preemie should be able to receive all the therapy he needs in order to have the best chance possible to move and control his body like he needs and wants to. 

During the conference the doctors and therapist stressed over and over the importance of early intervention.  I encourage new preemie moms out there to start therapy as soon as possible! I known it works. Abigail and Elizabeth are reaching milestones daily. They may still be a little behind, but I know it would be way worse without the interventions we have received so far. 

Abigail's Sleep Study Take 2

I spoke to Abigail's Pulmonologist and it turns out that her sleep study didn't go as well as expected. It wasn't horrible, but it is a small setback. Her doctor who I love by the way, learned some new information about her breathing while she is sleeping.

There are two types of sleep apneas that can occur while you are asleep- Central and Obstructive. She actually had both during her sleep study. 

The doctor told me that it is possible that she will need her tonsils and adenoids out in the future. Her tonsils and adenoids are most likely what caused the few Obstructive apneas that she had. 

Her doctor was most concerned with the central apnea that she has. Each hour of the sleep study she had a few moments where her breathing saturations dropped down to the 89-90 range. The doctor would like her to stay above 92 at the very least. 

The good news is she is very close to where she needs to be, but the bad news is we will have to continue with the oxygen at night. Oh, and the other bad news is she will have to repeat the sleep study in a few months. It is just like anything else...we just got to keep trucking along. 

Abigail showing off her her yoga moves! She is so funny! 

November 17th is World Prematurity Day!

Today is World Prematurity Day! 

Today I thank the nurses and doctors that work hard each day to save babies that were born way too early. You all do amazing work and I thank you from the bottom of my heart! Today I am reminded o the strength of my girls. They both are truly my heroes! 

Better Late Than Never... 1st Birthday Pics

Sorry these are late friends! Enjoy the pictures.