I have gotten pretty behind on updating my blog and I apologize to those of you who have been following us and wondering how we’re all doing.  Since the day I was hospitalized on October 9th, 2013, I had a hard time even finding the words to update friends and family because I was trying to wrap my own head around what was happening each day, hour, and minute.

We want to start by saying thank you for the outpouring of support we have received from everyone.  So many people have done so much for us, and every bit of help we have received truly is appreciated.  We are experiencing the biggest challenge of our lives, and we’re blessed to be surrounded by so many family members, friends, and even strangers who have shown us so much love and support.

When we found out we were having triplets, we chose to be seen by a MFM (Maternal Fetal Medicine) doctor at a University Hospital.  The good part about being at an educational hospital is that they are using cutting edge technology and are sometimes willing to try new things.  The down side is that things are constantly changing, and there are too many cooks in the kitchen (if you know what I mean).  I was admitted at 26 weeks and 6 days gestation due to some abnormalities in cord flow for one of our babies.  All precautions were taken in case we needed to deliver our babies at that time.  The attending doctor then said he would be happy if we made it to 29 weeks.  Well… we made it to 31 weeks and 4 days!!!  Those 5 weeks were a constant roller coaster of decisions and emotions.  One day we were told that I was very sick and they would need to deliver the babies soon.  The next day, a different doctor, would tell me how great I looked and that we could probably still go a couple more weeks unless something drastic happened.  Well 31 weeks and 4 days is a great gestation for triplets (especially identical where they’re all sharing one placenta) but they were still 9 weeks early.  They were tiny and fragile little beings.  Don’t get me wrong, these girls were strong little fighters from the beginning, but far from full term babies.

We ended up delivering because I had severe high blood pressure and my body was starting to fail me and these babies.  I had a rough recovery because of the weeks of bed rest and losing so much muscle mass, the 30+ lbs of water weight I had gained because of the preeclampsia, the extra hormones from carrying 3 babies, and my pregnancy induced high blood pressure.  Poor Alvin was running back and forth between the NICU and my recovery room.  He was doing everything in his power to take care of his wife and new baby girls without resting or eating… and staying strong for his family.  He did fantastic and I couldn’t have asked any more of him!

This is where our journey as a new family and the struggle of our lifetime began.   We spent all 77 days and 76 nights in the NICU with our babies.  We were there for every diaper change, temperature check, and feeding.  From day one, doctors and nurses kept telling us how great the girls were doing, how good their weights were, how they were the healthiest triplets they’d ever seen, how I did such a good job during the pregnancy to have such healthy babies, etc., etc.  They typically tell parents of preemies to plan on being discharged around their 40 week due date (January 9th, 2014).  Some babies go home earlier and some later.  Well we were optimistic and determined to believe our babies were going home early… by Christmas to be exact.  And then, hurdle after hurdle seemed to be put in front of us and that goal.  In the first few days of life, Grace and Lily were Jaundice and being treated with photo therapy lights.  As soon as their bilirubin levels came down and they were 1 week old, Grace was diagnosed with NEC (a life threatening disease in pre-term infants).  By the “Grace” of God they caught it very early and after 10 days of bowel rest, TPN (IV) feedings, and isolation, she was happy and healthy.  The girls were being given caffeine for the management of apnea events.  Then they all became anemic and were given epogen shots and iron supplements.  They were being force fed large volumes of milk through a tube to their bellies to try to get their weight gain to what it would have been in utero in those last critical weeks and months.  They were vomiting at the end of almost every feeding because their little tummies were too small to handle the volume of food they were given.  The volumes of food were constantly being raised as they grew so they never got a chance to get hungry or have a desire to eat.  Human milk fortifier was added to my breast milk and I was told that my milk was not enough for my pre-term babies (which I never really believed and really struggled with).  I struggled to produce enough milk at times because of all the stress we were under, the lack of privacy to pump every 2-3 hours, and reoccuring clogged milk ducts.  The girls started getting oral aversions which, apparently, is pretty common with NICU babies.  They are constantly having tape ripped of their little faces, tubes and suctions placed in their noses and mouths, bottles and nipples held in their mouth against their will, pacifiers placed in and held in their mouths while they fight to push them out, and they have a lot of negative associations with their faces and mouths so they get to a point where they want nothing in their mouth… not even to eat.  They were being tube fed large amounts every few hours so there was no need for them to eat on their own.  They would actually cry and gag when anything was placed in their little mouths.  Then Lily got the flu.  And not just any flu, we’re talking H1N1.  Healthy grown adults were getting H1N1 and dying and here we are with a vulnerable little premature infant with lung disease who is diagnosed with it.  All 3 girls were put on Tamiflu and Lily remained strong and got better.  Christmas came and went.  New Year’s came and went.  Their due date came and went.  We had now spent Halloween, Thanksgiving, Christmas and New Year’s in the hospital.  We were being told over and over to be advocates for our babies and stand up for what we believe is best for them but it felt like nobody would listen to us.  The nurses who did listen and agree, and feel for us, seemed to have no pull with the team of doctors and decision makers.  We were stressed beyond what we ever could have imagined and so badly needed to get our babies home.  The longer we were there the worse they seemed to be getting with their eating.  I felt like I was missing out on this important part of their lives because each day was filled with tasks rather than being a parent.  Day after day and night after night we sat and watched our babies sleep in their isolettes and felt so helpless and out of control and like we were failing them as parents.

Finally when the girls were 11 weeks old (2 weeks adjusted), they agree to discharge us with all 3 girls going home with NG feeding tubes.  They don’t normally let one baby go home on a feeding tube unless it’s eating the majority of it’s meals by bottle or breast and they anticipate it will be eating everything on it’s own within a few weeks.  We had 3 babies that were eating about 5-10% of their meals by bottle or breast and were continuing to get worse.  Part of their concern with feeding tubes at home is that if the baby were to get ahold of the tube and pull it out while food is being pumped through it, there is a very serious risk of aspiration (fluid going into the baby’s lungs).  We were told that we need to sit and watch the babies during all tube feedings (day and night) in case they try to pull it out.  We were confident that getting them home and having more consistency with feedings and making meal times a pleasant experience would get them to where they need to be and get the tubes out.  We were given 2 months.  If at the end of the two months, the girls hadn’t shown enough improvement, we’d have to get G tubes which are surgically placed and more permanent tubes into their stomachs.

We have been home almost 4 weeks.  We’ve had in home therapy to see how the girls or progressing and help with feeding and development.  We’ve had in home nursing to check up on the feeding tubes and monitor their weights.  Now all 3 girls are currently feeding tube free as long as they can continue to eat enough and gain weight.  They currently look like healthy “normal” babies but are not.  They are still preemies and still need special care.  They’re only eating 1-2 ounces at a time and should be getting about 24-26 ounces a day so that means a very tight schedule of feeding every 1-2 hours and finding time in there to pump enough milk to feed them, sleep and eat.  And then there is the risk of germs, viruses and infections.  These are reasons why we are isolating the babies for a minimum of this cold/flu/RSV season and next year’s season.  If you are not aware of RSV, respiratory syncytial virus, you are among the majority.  Most people have not heard of RSV, even though nearly every child has had the virus by age two.  For full-term babies, RSV typically is not any worse than a common cold, but for preemies, the virus can be quite different.  Babies born earlier than 36 weeks are at the highest risk for serious complications like pneumonia, bronchioitis, and other sometimes fatal complications.  Our babies were born premature, are multiples, and had low birth weights; these are among the highest risk factors for contracting RSV and developing serious complications.  This website offers a great visual comparison of a preemie’s lungs compared to the lungs of a full-term baby: http://www.preemiecare.org/lungs.html

Preventing the spread of RSV is very difficult.  Thus, we must be vigilant about keeping our children safe during RSV season and beyond.  The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object.  The virus can live as long as six hours on hands and up to twelve hours on objects, and it spreads very easily, especially from child to child.  Studies have also shown that infants pose an even higher risk of spreading RSV to others.  There is an incubation period between when you contract a bug and when you start having symptoms where you can feel fine but still spread the virus.  You can also still spread a virus days after feeling sick when you feel like you’re all better.

You may ask, “Can’t they fight it off and build up their immune system? Children need to get sick, right?”  The simple answer is NO.  Since our babies were pre-term, they did not acquire the necessary immunities to fight off infection.  If they contract RSV, they could be hospitalized and develop serious complications.

Our goal is to make it through this and the next RSV season without the babies contracting RSV or any other serious illness.  Their lungs are still very fragile until they are 2-years-old.

Please understand that this is not meant to offend anyone, just simply to provide an explanation.  We hope you understand, and we appreciate your help keeping our babies safe.

Please also read Isolation, From Your Preemie’s Point of View

God Bless!

The Family of much loved Preemies

P.S. These are likely our only babies.  When you try to become pregnant and imagine what it will be like to start a family, you never imagine multiples, high risk, bed rest, preemies, NICU time, not being able to go out and show off your babies.  Being a photographer, good photographs to document my babies lives are VERY important to me.  I have not been able to take nearly the amount of photos I would like since the girls were born because I’ve been so exhausted and focused on getting them healthy and as close to “normal” babies as possible.  My friend and talented newborn photographer in Tulsa Oklahoma, www.tgnewborns.com, volunteered to drive herself to Colorado with all of her equipment and props and take pictures of my not so newborn babies.  She got them to sleep and pose just like newborns and for once… I felt like a normal, new, first time mom Thank you for that Trisha!!!   Also thank you for wearing a mask, sanitizing all of your equipment, and bathing in disinfectant!

Stay tuned for the rest of the images from TG Photography in my next post