Feeding the Turners

This is the best way I have learned to feed two active babies at the same time. I have been told by several people that individually my girls are

both very difficult to feed. They turn their heads to look at everything and they like to pull their bottles out of their mouth. If you are a mom of multiples or if you have an active baby like me, my advice is to invest in Boppy baby pillows.  

 

Our First Trip Out to Eat

Tonight was our first family dinner at a restaurant. I really wanted to take them out before cold and flu season begins and I was finally ready to do it.  The girls did great.  Abigail loved it and Elizabeth looked at everything. Some people may think it's crazy that I waited until they were 10 months old to take them out to dinner, but I waited until I was ready. My advice to preemie moms is to go out when you are truly ready and don't rush it. I am happy that I waited. You will know when the time is right. :) 

                  My mom with Elizabeth        

My sister-in-law Amanda with Abigail

This couldn't be more true.

                 
                              If you are on the roller coaster...hold on! My heart is with you.

What's Worth Buying?!

I thought it would be neat if I started posting some of the things that I've bought that I actually really love. When the girls were in the hospital, I would sit by their bedside for hours. Since I never had a chance to go shopping in stores, I bought pretty much everything online at Target or Amazon. I read many reviews by other parents, and I made my shopping choices based on their reviews.

The first items I want to talk about are my stroller and car seats. I have a double stroller and a single stroller. I had to get a single stroller for the times when I take just one of my girls to the doctors.  I don't like to take out the double stroller unless I need too. I have the Chicco Cortina Together Double Stroller.  It fits my Chicco car seats, called the KetFit 30.

My stroller choices were originally based on the idea that I really wanted the Chicco car seats. They have special support in them and they were exactly what I needed for my little preemie girls. The car seats have extra neck and seat removable inserts. The car seats are made to secure a baby from 4 to 30 lbs.  Many other car sears start at 5 lbs.

I have to say that the double stroller is wonderful and worth buying! I can fit Abigail's oxygen safely in the storage compartment. I can lift it and get it in and out of my trunk without any problems. I drive a Toyota Camry and it fits in my trunk with some room left over. It is very long, but then again you are pushing two babies, so it needs to be long.  I really do like the stroller and I do recommend it.

My single stroller is also Chicco brand. It is called the Liteway Plus. This stroller also has room for Abigail's oxygen. I can actually fit the Double Stroller and the single stroller in my trunk. I usually just keep them in there all the time.

I love the products and they have worked well for my girls. I recommend them and would buy them again.  The Chicco brand name usually costs more than other brands like Graco, but I think you get your money worth.

Corrected Age

I saw this today and it made me laugh. This happens to me all the time.

Today my girls are officially 10 months old. Their corrected age is 7 months old. Corrected age means that since they were born 3 months early you subtract the 3 months from how old they are and get their corrected age. When doctors look at their milestones they look at the corrected age and they are both doing well. 

So happy 10 months... or 7 months Abigail and Elizabeth! :) 

Our New Au Pair

Today our new Au Pair arrived. She came to us from Switzerland and will be staying with us a year. There are several reasons why Dan and I decided to go with an Au Pair rather than a day care or a traditional babysitter, but the most important reason is that Abigail is still on oxygen and has a weak respiratory system. One cold could really set her back. Their pulmonologist strongly recommended that she not go to a day care and I totally agreed. It can be very dangerous for her to get just a cold. Starting in about a month Abigail and Elizabeth will both be on a “lock down” due to RSV and Flu season.  I won’t really be taking them out unless it is to see the doctor or to go to a physical/occupational therapy appointment. I hate to keep the girls inside, but it is really to help them stay healthy.

I am really excited to get to know our new Au Pair and to welcome her into our family.  The company we used to get our Au Pair is called Cultural Care Au Pair. You can find out more information at their webpage http://culturalcareaupair.com/ . I will post more about our experience in the months to come. If you have any questions please feel free to ask!

Enjoy a few pics that I took of the girls this morning. They both were in a smiley mood!

 

It Takes A Village

The old saying goes that it takes a village to raise a child. Who ever coined this phrase was a genius.

I am fortunate enough to have a "village" to help me with my girl. My girls village consist of grandparents, great grandparents, aunts and uncles, Godparents, and some wonderful friends. Currently Abby and Liz have outpatient therapy 3 days a week. I honestly wouldn't have been able to go back to work this school year if it wasn't for the amazing people in my life that have offered to help. The girls' therapy is the most important thing in our lives right now, and I would give up anything to get them there. Luckily I have help. My wonderful friend and Abigail's Godmother Nancy has offered to take the girls to their therapy session on Tuesdays. My grandparents (the girls' great grandparents) are taking them on Wednesdays. Finally, my dad and my sister-in-law Amanda will work together to take the girls on Fridays. I just want to take the time to say THANK YOU for all of your help. We couldn't do it without you!  

My advice to NICU and preemie moms is to take the help when it is offered to you. I had a hard time excepting help when the girls first came home, but the truth is I couldn't do it alone. Ask for help when you need it and if someone offers to help, take them up on their offer. 

It's Off To Work I Go

I went back to work today for another exciting school year. I am a kindergarten teacher for those of you that don't know what I do for a job. I really love my job and I enjoying working. There is something really refreshing about having a job that you like and also that you are good at.  

I had mixed feelings today about going back to work. On one hand, I  was happy to return to work and catch up with my coworkers and hear about their summers, but on the other hand it was also very hard to leave the girls. Over the summer I got to
watch the girls get stronger and become more talkative. They both got teeth and learned to roll over!  I loved spending time with them and just hanging out. Today at work I missed them dearly and I kept thinking about what they were doing.  I hoped that they didn't do anything new without me there.

I decided a long time ago that I wanted to be a working mom, but it doesn't help the guilt that I feel when I am gone. I do, however, think it is really important that the girls see me working and learn the importance of being a strong independent woman. It is my goal that Abigail and Elizabeth will grow up and be strong career independent women too. 

As I sat in our school meeting today and I looked around the room I saw many of my coworkers that were also working moms and I knew I was making the right choice. It's not an easy choice to make, but I want to work so I can help support my family and be a good role model.  What I learned is that every mom needs to make the right choice for her family, and I feel that I have made the right choice for me and my beautiful girls. 

The Ronald McDonald House is Wonderful!

 

I lived at the Ronald McDonald House (RMH) from November until the middle of February. Each family gets there own bedroom, bathroom, and access to the kitchen. Volunteers come and cook the house guests' dinner and breakfast each day. Anyone can request to do this. Sometimes it was a local Baltimore business or a church, and sometimes it was family who came.

 As soon as the girls were born, the hospital social worker began the process to help me get in to the RMH. At first I was very reluctant. The thought of living some place strange did not appeal to me. I found out where the RMH was and I took the hospital shuttle over to take a tour. The building was beautiful and the staff very nice. I decided to give it a try.  Luckily, I didn't have to be on the waiting list for very long. I feel so fortunate to have gotten into the RMH because I was able to stay at the hospital with the girls during the day and it was only a short walk from the RMH to University of Maryland hospital and a short drive to Hopkins. If it wasn't for the RMH, I would have driven an hour and half one way to get to the hospital every day to see Abigail and Elizabeth.

I learned a lot about myself and life living there. Some people came to the RMH only for a night or two and then there were some people like
me who stayed longer. There were some children who actually lived there who received out patient hospital services, and then there were parents like me who had children in the hospital that couldn't leave. I met some of the most incredibly strong parents there.      I met people who really cared about me and always asked about how the twins were doing. Staying in a place like that helps you  realize how precious life is and how important your loves ones are. Some parents had to support their children through some horrible sicknesses or injuries.  It really makes you realize that there are people in this world who honestly don't know how fortunate they have it in life. There is nothing in life worse than seeing your child very sick.

The Ronald McDonald House is an amazing organization. I will always be so thankful for what they did for me. If you are a NICU parent and the social worker asks you if you want to stay there, my advice is to do it!

Abigail's GI Doc and g-tube

Dan and I took Abby to her GI doctor at Hopkins on Tuesday. The appointment went well and the doctor was very happy with the growth she has made with her eating. She said that if she keeps continuing at this rate she will no longer need her g-tube (feeding tube) in 3-6 months. During the appointment the doctor instructed us to keep the amount of bottles she takes during the day the same, but to begin giving her solid foods once a day. She currently only uses her g-tube at night with a continuous feed. The g-tube pumps the food into her belly very slowly all night long. On Tuesday the doctor decided to shorten the amount of time she is fed over night from 10 hours to 8.

I am happy that I decided to have a g-tube put in. It has helped her to gain weight and without it she would be much smaller. The type of g-tube she has is called the Mic-key. It reminds me of a little button. At night we hook her up to a long tubing that pumps the food into the g-tube. It's nice because during the day you can remove the long tubing and close up the button. It hides nicely under her clothes.

There is a con to the g-tube though. A g-tube can malfunctioned. Abby actually had a malfunction a few weeks ago and  it caused her to vomit horribly. It turns out the balloon that holds the g-tube in place under her skin got turned onto its side and caused an obstruction. The doctors explained to me that what happened isn't typically,  but it did cause her to have a 2 night stay at Children's Hospital in DC.

If you are a preemie parent and considering having a g-tube placed in your child, feel free to contact me with any questions.

   You can see her g-tube here in the picture. It is the white button attached to her belly.

Let Them Eat Green Beans!

I am very excited to announce that both girls are now able to eat baby food! A few weeks ago the girl's pediatrician started Elizabeth on cereal once a day, but I learned yesterday from Abigail's GI doctor at Hopkins that cereal can actually be very binding and cause constipation in preemie bellies. She recommended that we not give them any cereal but start veggies once a day. Today I gave both girls their first real taste of food... Green Beans! Elizabeth liked them and ate pretty well. Abigail took a few good bites and then started to spit it out for fun. It was a great first moment. I am just so excited that they got to eat some food before I had to go back to work.

Pregnant Women

It's 9 months later and it still can be hard for me to see a pregnant woman. I guess deep down I am still mourning my pregnancy. I missed the whole 3rd trimester of my pregnancy. I spent the last 3 weeks of my pregnancy on full medical bed rest, so I never got a chance to see how big my belly was before I delivered. I am not sure when or if I will ever actually get over this. It is like my heart hurts a little when I see a pregnant woman.

A NICU nurse told me that she had a NICU mom once who had a hard time dealing with the fact that her babies respiratory therapist was pregnant and she asked for someone different. When the nurse told me this story I could totally relate to the mom, and for once I didn't feel like a crazy person. It was nice to know other NICU moms had the same feelings I did.

Recently I saw my dear friend Jade who is pregnant with her first child. She is someone I care about a great deal. When I saw her pregnant it was the first time my heart didn't hurt. I was so happy for her. Jade and her husband Josh are going to be wonderful parents to their son.

I am not sure if this means I am getting over the hurt I experience or if it didn't hurt so bad because it was my friend. I know this is something I need to work on, but with each day that passes it gets a little easier. I know in life I will see many more pregnant women. It is my hope that as time goes on  I won't be immediately reminded of what I all I had to go through when I see a pregnant woman walk by.

If you are a NICU of preemie mom out there dealing with too just know you are not alone.

This is one of the few pictures I have of me pregnant. I was put on hospital bed rest about a week after it was taken.

Are they getting bigger?

"Are they getting bigger?" The dreaded four words you will hear over and over again from friends and family. Every time someone asked me this I seriously wanted to yell "um Noooo! Did you forget they weighed 1 and 2 pounds at birth?!"  When you are a parent in the NICU or if you are home with your preemie baby doing anything you can to try to get them to eat, the last thing you honestly want to hear is "Are they getting bigger?"  It is like nails on a chalkboard. I do understand that the people saying this are just trying to be nice,  but it doesn't make the comment any easier to digest.   

To help the situaion out I have come up with things that are appropriate to say to a NICU/Preemie parent.

-Let me know if there is anything I can  do for you.

-Hang in there.

-Call me if you need to talk.

-Can I take you to lunch?

- You are a wonderful mom. 

These are nice and appropriate comments to say and they won't drive a mom crazy. I hope this helps. And to any preemie or NICU mom out there...Hang in there and let me know if I can take you to lunch. :) 

A cute pic of the girls playing with each other. Notice Abby chewing on Elizabeth's foot. 

Abby is a Pirate

After our horrible 6 hour eye doctor trip, I learned Abigail now has a lazy eye. I noticed a couple of weeks ago so I called the Wilmer Eye Institute  at Hopkins were she is being followed. Luckily I was able to get her in before I went back to work.  Once again I followed my mom instincts and I was correct. Normally I love being right and don't really like it when I am wrong, but when something  like this happens it's the opposite. I wish during this circumstance I was wrong.

So now that the doctor has confirmed my suspicion and we know for sure her left eye is a little lazy.
Her eye doctor ordered us to begin patching her good eye to force her weak eye to get stronger. We now have to patch her right eye for 2 hours a day. Yesterday was the first day I patched her, and boy was she mad about it. I am hoping she will get more comfortable with it days to come. The good news is we get to play Pirate during the day. It's always fun to say Arrrrr!  :)

Elizabeth's Bowling Glove

Elizabeth has a hand brace that she wears during the day.  One day when my good friends Megan and Sam were over visiting from NJ, my husband Dan was joking with them and called it a bowling glove and the name stuck. Shortly after she was born she had a very bad brain and the doctors told us it would take some time to determine how the bleed would impact her. We now know the  impact. Due to the bleed she has developed a weak left side and has been diagnosed with CP. She is wearing the brace to help open her hand and so far the brace seems to help. Elizabeth receives Infants and Toddlers therapy twice a week and then I take her to out patient occupational therapy three times a week. It is going to be a long road and lots of therapy for Liz. My heart breaks when I see her try to reach for a toy with her left hand and she isn't able to grab anything with her fingers, but I am optimistic that she will make progress. No one wants to hear their child has a disability but from day one when I got the news they both had bad bleeds, I promised myself that I was going to have a good life and do whatever I had to do for them.

Try to Get Some Rest

Ever since the girls were born I have heard this over and over again. "You really should try to get some rest." Really?! When is all this rest suppose to happen exactly? The idea is good in theory but let's be honesty,  it's not going to happen. When the girls were in the NICU I never got great sleep because I lived in the Ronald McDonald House. Nothing against the RMH. You are wonderful and if I ever hit it big in the lottery you will be getting a fat donation from me but it just wasn't my bed at home. Secondly, when your child is sick there is no way you get great sleep. In the back of my mind I always knew that a doctor or nurse could call with an update at any time. Lastly, I got up to pump in the middle of the night to help keep up my breast milk supply.  So that too disturbed my beauty rest.
Now that the girls are home it is a totally different ball game.  I once again don't get great sleep for all of the obvious reasons. And not to mention my Elizabeth is an early riser.  So yeah... Sleep is not happening.

Then someone might even tell you not to worry about sleeping because sleep is overrated and that also is annoying. Sleep isn't overrated, its amazing! I would love to sleep the day away but it just isn't happening.

My advice to NICU moms is to just drink lots of coffee. That really seems to be the ticket. Oh and wear makeup under your eyes that helps too. And if someone tells you to try and get some rest, just try to give them smile and in the back of your mind just say "yeah right."

6 Hours…

Six hours is the amount of time it took me to take Abigail to the eye doctor today. Two hours in the car both ways. She was mad and I was equally irritated.  It is really ridiculous when I think about the amount of time it takes me to get the girls to all of these appointments.  I am thankful that I do live pretty close to really great hospitals and doctors but sometimes I wish I had a Star Trek transporter to get to these appointments quicker.  It just breaks my heart when I think about one of the girls strapped in their car seat for hours.  It is bad enough they have to have 7 doctors to monitor their progress regularly but then they have to spend hours each week in the car just to get there.  I have heard from other NICU moms that the appointments seem to slow down as they get a little bigger but that doesn’t solve my problem now. Anyone have suggestions out there on ways to entertain babies for hours strapped in a car seat?

Giggle Giggle

Today was the first day the girls actually laughed at each other. It was one of the best moments of my life. :)

Colic and Constipation are Crappy

One thing I wasn't at all prepared for was all the tummy troubles my girls would have. Since they have what the doctors like to call "preemie intestines" everything is very slow moving in there and often they have difficulty going to the bathroom.  After Abigail came home from the NICU she had very bad colic. I ended up putting gas drops in every bottle she drank. She had colic so bad she didn't want to eat at all. I called her GI doc several times with no real help or support so I changed her to soy without his permission. Soy isn't ideal for preemies but I finally got her to start eating again and the colic got better.

Once I got the colic under control my fight changed to constipation. Trying to get her to poo was and still is a hard days work. I am constantly keeping track of when the last time she went was, how much she went, and how hard it was. No one gave me the heads up that this can be a problem for preemies. I wasn't at all prepared.  I also wasn't prepared for all of the constant changing of the formula.
Abigail has been on the following:
Breast milk
Neosure
Gerber Nourish
Soy
Alimentum

She was breast feed until 5 1/2 months but when I went back to work I just couldn't keep up with the pumping and with taking care of twins. We then put on full Neosure with extra calories to help her gain weight.  This is really the time when all the trouble began. To make along story short I once again followed my special mom instincts and changed her GI doc to someone that I liked and felt comfortable with and finally found a formula that seems to work best. She still has a hard time going and I have to give her prune juice and suppositories often to help her go but things finally seem to be on the right track.

My advice is to just hang in there. As they get bigger it does seem to get a little better.

                                                                 Abigail feeling better!

An Unexpected Journey

My goal for the blog isn't to just brag about how amazing my girls are (even though they are super awesome) but I did want to tell you a little about my girls journey so you can know where I am coming from.

Troubles in the waters started when I was just 23 weeks pregnant. I started bleeding a little here and there unexpectedly. It turns out Elizabeth's placenta detached. The fancy medical term is an abruption. The bleeding caused some contractions so I was transported by helicopter to University of Maryland Hospital in Baltimore. The hospital is an hour and a half away from home. I made it on full bed rest for three weeks there. Thanks to God!

Bed rest in no way shape or form is fun. It absolutely stinks. I had to use a bedpan and lets just say all the medication that they gave me to stop my contractions made my tummy upset. The nurses were wonderful but my three week stay wasn't a spring picnic. I was worried sick and all I wanted to do was make it one more day. I did have several visitors and I had a TV but in the back of my mind all I could think of was that I didn't want to have the girls yet.

On October 24th I started bleeding again and had contractions. I knew this was it. I cried my eyes out and begged God to stop my contractions. In the thick of my sorrow the Chaplin came in to visit me as he did regularly.  He said something to me that at the time made perfect sense. He said that I did my best and that this chapter was over and that now I needed to prepare myself for the next chapter.  It was exactly what I needed to hear. I stopped crying and as they say "put on my big girl underwear" and tried to mentally prepare myself. My girls were born the next morning on October 25th at 6:01 and 6:04. Abigail weighed 1 pound 11 and Elizabeth weighed 2 pounds 4. Thanks to a hospital social worker I was able to get into the Ronald McDonald House. I would end up living there from November to February.

In the beginning my girls were in the NICU in a room called the ELBW room- Extremely Low Birth Weight. The first few days the girls were in the NICU I cried every time I went in to see them. It got easier as the days went on. The Nurses there took amazing care of my girls and they also helped me out along the way. The girls were both in very critical condition. Five words can sum up there first couple of months in the NICU-intubation, transfusions, ultrasounds, labs, and bradycardias.

At two weeks old my husband and I got the horrible news that both of my girls had severe brain bleeds shortly after birth. Abigail had a bilateral 3 and Elizabeth suffered a grade 4 (the worst possible bleed). The news took my breath away and I cried for a full day. The news was devastating and all the doctors could say was that we just had to give it time to see what damage it had caused. Abigail developed hydrocephalus due to her bleed and then the news came that she would have to be transferred to Hopkins to be shunted and to be followed by the Neuro team there. The bad news was that the girls would be to be separated. For two weeks I had to go back and forth between two hospitals. It was horrible. I had different doctors, different nurses, and different protocols. Every day I reminded Hopkins that Abigail was a twin and requested Elizabeth to be transferred there too. After fighting with insurance I was able to get Elizabeth transferred. It was bitter sweet because I was leaving the hospital were I spent three weeks on bed rest, the hospital where they were born, and the hospital that took such wonderful care of them when they were so sick, but I also knew that there was no way I could keep going between two hospitals. Johns Hopkins is a wonderful hospital and I am thankful that both of my girls were able to go there.

After Abigail was transferred to Hopkins she became very sick. Both of her lungs collapsed and this caused her hydrocephalus shunt surgery to be put on the backburner. I was happy that her surgery was put on hold but very worried when she got so sick. At this time she was only a little over 3 pounds and the thought of a 3 pound baby getting brain surgery scared me to death. As Abigail's lungs healed her hydrocephalus actually got better and she didn't need to be shunted after all. The nuero team continued to give both girls weekly head scans to watch the progression of their brain bleeds.

As time went on the girls got bigger and their lungs got better. Elizabeth was taken off of oxygen and she learned to breathe on her own. The girls began to start taking a few ml's of breast milk to learn to bottle feed.   Right away I noticed that Abigail struggled with feeds like some preemies do. When we learned that Abigail had a hernia and that she would need surgery to repair it, I requested that the doctors put in a feeding tube (G-tube) when she was in surgery because I knew she couldn't take enough by mouth to grow on. I didn't want it to prolong her stay in the NICU and shortly after her hernia was repaired and her G-tube was placed she was able to go home. Abigail went home on oxygen and with a G-tube. Elizabeth on the other hang was taking enough volume of milk on her own but she started to drop her heart rate when she ate. She would drink so fast that she would forget to breathe. She was just a hungry girl and still is. Elizabeth at the time was much bigger than her sister and didn't need oxygen but wasn't ready to go home. She was transferred to a step down hospital and had to stay there for 2 weeks while she learned to slow down when eating. This time of my life was extremely hard too. Having one home and leaving one in the hospital was a horrible feeling. As I got to really learn Abigail's personality and develop a schedule with her I was constantly worrying about Elizabeth. I visited her each night and I cried every ride home. I was so thankful when she was able to come home. My girls spent 123 days total in the three different hospitals. I didn't write about every detail and everything that happened during that time but I just wanted you to get the gist.

If you are a NICU/preemie parent with specific questions about feeding, ROP,  intraventricular bleeds, hernias, g-tubes, or anything else please feel free to email me. MBFowler@comcast.net .

 

 

An Introduction

I am a proud preemie mom of micro preemie twin girls Abigail and Elizabeth. My girls were born at 26 weeks 4 days. Abigail weighed 1 pound 11 ounces and Elizabeth weighed 2 pounds 4 ounces at birth. During our hospital journey our girls stayed in 3 different NICU hospitals. My girls are currently 9 months old and I have learned a lot during these months. I decided to write this blog to help other preemie/NICU parents out there.  My life is not at all how I planned, but I am determined to be the best preemie mom I can be and to help other parents any way I can.