Breanna holding William for the first time.

My birth story starts almost exactly 3 years ago.  Yesterday was the third anniversary of my son's death.  I had a pretty typical twin pregnancy until my water broke at just 22 weeks.  That night I was taken to the hospital and told I would not leave until my babies were born and they would try to hold that off as long as possible.  I was told to even have a small chance we would need to make it to 23 weeks and 24-25 weeks to have a decent chance.  Even if I did make it that far it didn't look good for my son William, his amniotic sac was the one that had broken and there was not much fluid left to help mature his lungs.  

The next few days I just waited and talked to the never ending train of doctors that came in to talk to me about what my babies future could hold and honestly I don't remember any of it.  The waiting continued until around 1AM on day 5, something didn't feel right.  They discovered that I was ready to deliver my son William and I was rushed to labor and delivery.  Just before 2AM my son William was born weighing 535g (1lb 3oz) at 22 weeks and 5 days gestation (barely).  As soon as he was born he was rushed off to the NICU while the medical staff turned their attention to trying to stop my labor.  

William, born at 22 weeks and 5 days

John, born 39 hours after William now watches over his brother.

Later that evening I was able to see my babies for the first time, I couldn't believe how tiny and fragile they looked behind the glass.  The next few days were pretty uneventful, just waiting on my boys to grow.  

This changed when John was 5 days old, we received a phone call early that morning that John was not doing well.  When we made it to the hospital he was barely hanging on and there was nothing they could do.  He had pneumonia with a very aggressive bacteria and by the time they realized something was wrong it was too late.  That morning John passed away and has been watching over his older brother William every day since then.  

William on his way home!

Slowly but surely William started to grow and after a long 6 month NICU stay he came home!  William is still on a feeding tube, has limited vision, and mild CP.  He does not let this slow him down!  William's entire NICU story as well as current updates can be found at www.maravytwinwatch.com.

Here's William now!

   

Grayson - 26 weeker

Our daughter, Grayson, was born at 26 weeks.  I had sudden eclampsia with a seizure.  She weighed 1lb 3oz, was 12 inches long, and was a 10% chance of surviving through the first day.  Since that day, Grayson has continued to overcome obstacles and battles that have come her way.  She had ROP laser surgery as well as a gtube nissen surgery.  Due to being intubated for almost 6 months she developed chronic lung disease.  After 236 days in the NICU (2 different hospitals), she is home!!  Grayson currently weighs 9lb 14oz and is 22 inches!  She is our miracle, our hero, and the strongest girl we have ever met.  We are so honored to be her parents!  

Meet my g-tube baby, Gracie!! Gracie was a former 27weeker, born on August 3rd and because of the g-tube she is thriving, gaining & doing great. In the NICU she was always referred to as a “pukey baby”, because every time they gave her formula she would throw it back up. They thought a milk protein allergy, and put her on strict broken down formula. It wasn’t until an October ultrasound finally found a Hiatal Hernia in her belly. The hernia was “very large”, according to the surgeon. Who said she didn’t expect it to be as big as it was, when she went in to repair it. While having that repaired, a g-tube was placed in her belly at the same time. We had many discussions around the g-tube prior to the surgery, we weren’t absolutely sure that she needed it. But after a few weeks of waiting to help her gain weight for the surgery, we soon realized that the g-tube was the best choice for her.

Gracie’s surgery was on November 7^th, and she weighed 4lbs. 1oz. By the time we finally left the NICU on December 5^th, she weighed 6lbs. 2oz. Way to go, Gracie!!

I’m not embarrassed that my daughter eats differently than other babies. In fact, I’m proud of her and how far she has come. As with many preemie babies, there is always the fear they aren’t going to make it; not only has Gracie made it, she’s doing it with flying colors. She’s a brave, strong little baby.. destined for only the best.

I’m not sure how long she’s going to need the g-tube. We have a really good G.I. Specialist, that we see every two weeks. He’s not very concerned about taking the g-tube out. But when asked by my husband, he says maybe 8 months to a year. He wants her to continue to get good nutrition and be healthy. Whatever it takes, I say. “Whatever it takes.”

The only downsides of the g-tube I would say is that it leaks A LOT!! Unfortunately, I don’t think Gracie is really ‘wearing’ the right g-tube size. The smaller one causes skin friction, but the larger one causes a lot of leakage, which means the acid of the stomach gets on her skin & makes it ulcerated. We put some special cream on it a few times a day, to help the ulcerations. It’s been a fine balance to make sure she’s getting the correct nutrition, and to have her not be in pain with it. But all in all, it’s helping her grow.. and that really is what it’s all about. She is currently 10lbs 8.5oz!!

Thanks for reading about Gracie.. I’m sure you’ll be hearing from us again!!

My boys were born at 29 weeks, 6 days.  From their birth, there was a rather large size discordance.  Baby B, Hilyer, was diagnosed as IUGR and the boys were delivered via c-section 2 days after the diagnosis.

Hilyer was born weighing 1lb 7oz.  He was (and is) my Itty Bitty.  After birth his weight dropped to 1lb 4oz, but he seemed to rebound quickly.  He was able to start on small feeds of breast milk (BM) within 5 days of birth.  Initially, he was on 27 calorie (fortified) BM but he wasn't gaining weight as quickly as his brother.  Due to his IUGR and immature lungs, it was explained to my husband and I that his little body was "running a marathon day and night".  Even though he was doing well with the BM, he was burning all the calories just lying in his isolette.  Then the neos bumped him up to 30 calorie (fortified) BM.  After reaching the 4 pound mark, he finally seemed to be on track.  Gaining every day.

When we were given the green light to start bottle feeds, I thought "YES! He will be home soon."  He took his first bottle a couple of weeks after the boys due date.  I just knew that he'd be home in no time.  First bottle was in early/mid June.  He wasn't discharged until July 31st.  That's a long time to work on feeding.  We worked with PT, OT and Speech on his bottle feeds.  Everyone agreed that he could drink from the bottle.  His suck, swallow, breath (SSB) was functioning, but it was just too hard for him and his weak lungs. Everyone kept saying "Once he hits 5 pounds, he'll turn the corner."  Five pounds came and went...."It won't be long now.  He's growing new lung tissue every day."  Six pounds came and went.  After weeks of therapy, one of the speech therapists (our favorite!) suggested something -- pull his NG tube see what happens.  This was a Thursday.  His NG tube was pulled and we went to an on-demand feeding scheduled.  The neos agreed to minimum amount of BM that had to be taken per 24 hours for the next 48 hours.  I roomed in Friday and Saturday night.  If Hilyer was awake, we tried the bottle.  On Friday, he exceeded his daily goal.  Woo Hoo!  Then on Saturday, we barely made it but met the goal.  We were discharged on Sunday morning.  Finally, we were all home and done with the hospital.

We were discharged with oxygen.  Hilyer was diagnosed with BPD after not being able to lose the oxygen support within 28 days of birth.  When we left the hospital, we had follow appointments made for every specialist possible.

You always hear stories about babies that "thrive at home".  I guess it depends on what your definition of "thriving" is.  He was happy.  He slept very well.  But he didn't care to eat.  We had our first weight check on Tuesday afternoon with our pediatrician.  He had gained a measly ounce in nearly 3 days.  Our pedi wasn't too concerned, just chalked it up to adjusting to being at home and being overstimulated.  We went back on Friday -- no weight gain.  Our pedi still wasn't too concerned, but stressed that we offer the bottle every other hour over the weekend and be back on Monday.  What a frustrating weekend!  Back to the pedi on Monday morning.  Up an ounce.  If you're counting that's 2 ounces in a week. Not exactly ideal.

I love our pedi.  She didn't "wait to see" what would happen.  She got our follow up appointment with Hilyer's pulmonologist moved up and they could see us the next Monday.  Part of our pulmonary plan includes a nutritionist and she was quick to mention a feeding tube.  I scoffed at her.  He could eat.  He would eat when he was hungry.  We modified his diet a little to see if it would help.  We watched his weight for the months of September and October.  After seeing very little progress, my husband and I started discussing the possibility of a g-tube.  Finally at our November pulmonary appointment, Hilyer was officially diagnosed as "Failure to Thrive".  What a blow!  He was doing so well at home.  He was happy.  He was getting stronger, but still not gaining weight.  For him, weight gain equals new, healthy lung tissue.  New lung tissue equals FINALLY ditching the oxygen.

After doing my research, my husband and I agreed to the surgery.  In addition to having the g-tube placed, we also had a nissen fundoplication done.  Hilyer's pulmonologist thought he may be silently refluxing and possibly aspirating.

Hilyer had his surgery on November 22nd.  Before surgery he weighed just under 9 pounds.  Since his surgery, we have been feeding him 22 ounces a day.  Initially, we were doing BM and Similac Sensitive.  After a couple of torturous weeks, we finally saw a GI.  He suggested switching Hilyer to Elecare due to a suspected dairy protein issue.  Since the change, it has been smooth sailing.  Hilyer receives about 24 ounces of Elecare a day.  He is fed every 3 hours during the day and then continuously over the pump at night.  Just last week, he weighed in at just under 13 pounds.  Yep -- 4 pounds in just over 2 months!!!

It's amazing how different he is now.  He is full of energy.  He has a double chin and a Buddha-belly.  He's meeting milestones much more quickly.  He talks all.the.time!  Without the gtube, I do not think Hilyer would have broken the 10 pound mark yet.

For us, the gtube is necessary.  How long will he have it?  Who knows.  I hope we're able to ditch it sooner rather than later.  Right now, our main goal is weight gain.  All of our specialists assure me that we can get him to eat when we're not dealing lung issues.  They've been spot on so far, so I just have to trust that they are right about this.

Please stop by the Feeding Tube Awareness page and read the success stories.  They are truly inspiring!

Meet Addison… my ex-26 week preemie… twin sister to Blake.


Addison is primarily G-tube fed.