So, this has been an amazing medical week for the boys!
You may not know, but Henry and Elliott have been receiving services from an occupational therapist. Well, on Tuesday she informed us that all three boys are doing so well that she is recommending the discontinuation of services when they reach 6 months. They are all doing so well that they no longer score has having deficits!
Most of you do know that Ethan has had ongoing ophthalmology appointments to watch the development of the blood vessels in his eyes very closely. Yesterday the doctor stated that there are no more signs of retinopathy of prematurity. He is clear and his eyes are healthy. The doctor expects that he will have the same field of vision as the rest of us.
It seems as though we are reminded, on a daily basis, just how incredibly lucky we are that all three of our boys are happy and healthy.
And just because – here’s a cute picture of Elliott asleep with his butt in the air. :-)
One year ago today we went to an ultrasound not knowing we were about to see three little miracles. They make us smile every day and we are so in love with them. We feel very blessed to be their mommies!
Henry Grayson – 9:20am on 3/14/16, 2lbs 3.3oz.
Oh our little Henry Grayson. Are any of you fans of the show Once Upon a Time? If you are, then you know that the boy in the show, Henry, became the author. (Sorry if that was a spoiler for anyone, but really, that happened like forever ago…) Anyway – when this little guy’s water broke it was like he was writing the story for the triplet’s arrival. So, when Diane and I were looking at their pictures and trying to decide on names, she said “he has to be Henry because he is writing the story”. Well, who was I to disagree? Grayson is derived from a book series by author Anne Bishop. A character goes by the name Gray – and he is a fighter. He comes back from brokenness to be the man he’s meant to be. So, Henry Grayson – writing his own story toward the man he’s meant to be. :sniffle sniffle:
As many of you know, Henry had the roughest start out of all of the triplets. The first night doctors discovered that there was blood in his stool. After testing they determined it was his and not Diane’s. So, the next day he was moved from the hospital where we delivered (St. Mary’s in St. Louis) to Cardinal Glennon. He went through several tests and nothing was conclusive. So, he underwent exploratory surgery to determine the origin of the blood. During that surgery the doctor said that a portion of his small bowel “looked abnormal”. She couldn’t put her finger on exactly what was wrong, but knew that she couldn’t leave it in there. So she removed 10cm of his small bowel. As it was around St. Patrick’s Day, you can see in this picture that she gave him a shamrock shaped bandage. It was just a little something that meant so much to us. His surgeon is in the reserves and like a week later had to go on location for 2 weeks. On her way out, in her fatigues, she stopped in to check on him one more time.
Because of his surgery, they only gave Henry total parenteral nutrition (TPN) though – no breast milk through a feeding tube. It seemed like daily they were doing some x-ray or scan to see what was happening with his intestines. He wasn’t passing any stool and the doctors were concerned. They put him on a medication called mucomyst and started talking about the possibility of him having cystic fibrosis. Also, they were giving the poor boy enemas every day. While the possibility of cystic fibrosis loomed heavy over us, we were more concerned about his immediate condition. The mucomyst made him miserable. He was puffy and didn’t really want to be held or messed with at all. Add to that the side effect of long-term TPN in premature infants is an impact on the liver. So, his direct bilirubin numbers were high and he was looking yellowed. It was heartbreaking to watch his struggle.
I have to say, we have never been more excited about poop than the day Henry finally passed his last meconium plug. That seemed to be the turning point for him. Once his bowels were moving they started tube feeding breast milk and he never looked back. To this day the boy loves to eat! As the food amount increased, everything else started to fall into place. His liver numbers improved. The IVs came out. He passed his hearing and vision exams. It was like he heard the doctors and nurses talking about discharging his brothers and he was not going to be left behind.
Henry came home on May 4th and our family finally felt whole. We celebrated our first Mother’s Day with all of our babies. Henry continues to be our fighter. He is now the largest of the triplets, weighing in a little over 14 pounds. (This was the old bathroom scale trick, so it’s not 100% accurate, but he feels a lot heavier than the other two boys.) He rolls from front to back and smiles with a little twinkle in his eyes. Out of all three boys Henry has been the most vocal since the day we brought him home. He has been making at least 10 different sounds for months now. In the beginning all of his vocalizations sounded angry, even if he wasn’t crying. I think he was releasing all of that pent up NICU angst – I mean, the boy had more enemas in his short few weeks of life than anyone I’ve ever known. That alone would create some anger…lol. Since he has been home, further testing was done and confirmed that he does not have cystic fibrosis. After all of his issues were resolved in the NICU he has had no further problems.
He’s a light in the darkness of the world, a daily inspiration to keep fighting. He’s our Henry, our author, and I can’t wait to see the story he writes for himself.
Ethan Connor – 9:19am on 3/14/16, 3lbs 5oz.
So, what about Ethan Connor’s name? Well, Diane was working at the SIUE library one night during her pregnancy. It was that point in the pregnancy where almost everything was annoying. One student was practically yelling, trying to get another student’s attention – and he just happened to be yelling ‘Ethan’. After hearing it several times Diane thought, “Huh, that actually doesn’t annoy me. I think I’ll add ‘Ethan’ to our list of possible names.” Connor is a derivative of my name (Connie). Diane offered to use my maiden name (Albert) as a name for the boys. I didn’t like the idea as Albert as a first or middle name just didn’t seem to fit with any of the other names on our list. But, I said to her one day “I do like the name Connor”.
A piece of the story that many do not know: at 8am on 3/14/16 hospital staff wheeled Diane out of her room toward labor and delivery. They got us in an L&D room, started to prep her and got me my cool blue outfit for the event. By 10am the boys were out, she was stitched up from her C-section and we were back in her L&D room for her recovery time…a two-hour recovery time. They would not wheel her through the NICU until they had monitored her for two hours to ensure she was okay following surgery. She had seen all of the boys immediately after they were stabilized, but would have to wait to see them again. Her anxiety was palpable. I had taken pictures of each of them. So, I opened my phone and said “Let’s name them while we wait!” This served to keep her calm and help her wait out the time until she could touch them when they wheeled her, in her hospital bed, through the NICU. It was during that recovery time when we determined that this little guy’s name is Ethan Connor.
Ethan was a rock star from the beginning. He did have that central line through is umbilical cord at first, but otherwise he entered Cardinal Glennon NICU as basically a feeder and grower. He had no issues with his bowels, or keeping food down. Like Elliott, he didn’t have the suck-swallow-breathe skill due to his age, so was started with tube feedings. When he was ready, though, he took to breast and bottle-feeding like a champ. He was the first to be allowed off monitors for short periods of time. This meant we could take him into his brothers’ rooms for visits. It made being together a bit easier. While in Cardinal Glennon each boy had his own room. So Diane and I spent our days and nights moving between them. Fortunately, the staff got Ethan and Elliott in side-by-side rooms and Henry was just across the hall.
As life at Cardinal Glennon was winding down for Ethan, he was diagnosed with retinopathy of prematurity. This meant that the blood vessels that grow around the eye were actually growing abnormally. In Ethan’s case they had turned in toward the center of the eye and were pushing on his retina. If treatment wasn’t administered the blood vessels would detach the retina and cause blindness. I’ll spare you the details of this drama, because I want to focus on the positive – and that is the fact that the treatment provided has done its job. The blood vessels are now almost exactly where they should be for a healthy eye. We won’t know for a while yet if there is any vision damage, but the bottom line is that he is not blind. Hallelujah!
On April 29th, Ethan left Cardinal Glennon and became the first triplet to sleep at home in his crib. He was the first to roll from front to back and smile socially. For weeks he was our ‘Triplet Ambassador”. Whenever someone new met them we would hand them Ethan because he would flash a smile and melt that person’s heart. He is still flashing that smile! He loves to stand up and has been practicing with his voice, trying out new sounds every day. Recently he started giggling and it is an amazing sound. When on his stomach he is working to figure out what those knees are for, so I think we’ll see more than scooting soon.
While he has only a few wisps of hair, several people have commented that it looks red. Are we going to have a red-haired, blue-eyed boy? No matter what his hair and eye color, he already has us tightly wrapped around his little finger.
Elliott Hodgins - 9:18am on 3/14/16, 2lbs 4 oz.
One of the most common questions we get about the boys is “where do their names come from?” So, as we’re coming up on their 6-month birthday, it’s confession time. They are not named after other family members. That is generally the first conclusion made by people. Where else would two lesbians come up with boy names after all? Ha ha! In actuality, their names are just ones that we ‘like’ – either from hearing on the street or from a book, tv show, or movie. Those of you who know me (Connie) know that I’m a huge Law and Order SVU fan. Elliott is taken from that show. Another favorite show is Bones, and Hodgins is taken from that show. Two of my favorite male characters on tv. I told Diane that as long as I got to name one boy Elliott Hodgins, I’d be very compromising on the other two, as long as they weren’t obnoxious or something that would get them beat up on the playground. :-)
Elliott had a bit of a rough start. While he came out breathing room air, not requiring oxygen, he still had a long road ahead before he could leave the NICU. The first very scary thing for us moms was that the central line that they put in was placed in the opening where the umbilical cord was attached. Because of this we had to wait 24 hours before we could hold him. The reason for this was that the line needed to be stable. Instructions for holding him the first time included “if you tug on that line even just a little bit your baby could bleed to death”. I’ve never been so scared in my life. The line was eventually removed from the umbilical cord opening and placed in a regular vein. Still scary as it was threaded through his vein and stopped close to his heart, but it was secured to him in a way that made holding him less life threatening from our perspective.
Because he was born at 30 weeks and 6 days, he was too early to have the suck-swallow-breathe skill that would allow him to eat by mouth. As such he was fed through a tube for the first several weeks of his life. At first he was given donor breast milk through the tube, but as Diane’s supply came in he was fed exclusively her breast milk while in the NICU. It wasn’t long after they started feeding him breast milk that he started having trouble with his bowels. He just wasn’t passing the meconium plug that all babies have. So, they stopped feeding him breast milk, and began a regimen to help him get passed this hurdle. Once he cleared that meconium it was back to the good stuff and he was basically considered a “feeder and grower”.
For us this meant long days and nights in the NICU. He passed his hearing test and his initial eye exam. He was a lazy bottle eater and had to be prompted quite a bit during bottle-feeding. There were four big hurdles he had to cross before we got to bring him home. (1) He had to gain enough weight that he could maintain his body temp – this was over 4lbs. (2) He had to take 16 feeds by mouth. This took awhile. We learned that babies this little actually burn calories when they eat. So, we could only work with him for 30 minutes by mouth during a feeding, otherwise he burned more calories than he was getting from his milk. (3) He had to stop having apneic and bradycardic episodes referred to as As and Bs. Apneic episodes are when they drop their breathing rate. Bardycardic is when they drop their heart rate. Premature and even some newborn babies have As and Bs. Most newborns self stimulate so typically parents don’t even know it happens. But, premature infants sometimes drop their rates so low without recovering themselves that they require stimulation to pick up the rhythms. The boys had to go 5 days in a row with no As and Bs that required stimulation. (4) He had to pass his car seat test. This meant sitting strapped in his car seat for twice the amount of time it would take us to drive home, without having any As or Bs that required stimulation while he was in it.
Obviously he is a rock star! He left Cardinal Glennon NICU on Sunday, May 1st and has continued to amaze us every day. He is our boy that does things at his own pace. So, while he was the last one to smile socially, he has the sweetest little smile – especially when he gets his tongue involved. He loves to sit in the chair in the picture above and rock himself. He learned pretty quickly how to do that by kicking his legs. Also he is our night owl – and by that I mean we try to get him sleeping in his crib by 9-10pm…which is several hours after his brothers. We think he considers it his only child time and wants to hang with his mommas. He has mastered the skill of rolling from front to back and is so close to making it from back to front. If he could only figure out how to get that pesky arm out of his way he’d be in business. Currently one of his favorite pass times is to flirt with his friend Noelle. He is crushing on her, but her husband doesn’t seem to feel threatened. (chuckle)
We are excited to continue getting to know this little human.