November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.
Our fifteenth profile is of twins Ava and Jackson.
Ava and Jackson were born on August 29th 2005 at 32 weeks 4 days.
Mom Kim thinks that they were probably early because they were twins. She said that statistics indicate that 50% of twins are born early, and she remembers one time hearing an interview on NPR of some woman who was talking about multiple births and she said, “The uterus is a Single Room Occupancy” place!
At birth, Kim says her kids were huge, given their gestational age. Their other parent is a registered dietitian and one of the books they read early on in the pregnancy was “What to Expect When You’re Expecting Twins, Triplets or Quads.” This is not part of the “What to Expect” series—this one was written by a multiples specialist. She believes that she is a registered dietitian too, among other credentials. The book said something that, as a nursing student, made a lot of sense to Kim: “The only nutrient that can build tissue is protein, so if you are building more than one baby, your protein needs are higher than those for the average pregnancy.” Kim took that to heart and gorged on protein, especially in the last weeks of pregnancy when she was up to eating a huge container of cottage cheese every day and drinking a large hot chocolate (made with skim milk!) every morning. Ava was four pounds four ounces and Jackson was four pounds eight ounces.
At birth, Ava was born blue and gasping. She was whisked away quickly and put on CPAP in the NICU. They intubated her shortly after that, though, because she was so apneic (Temporary absence or cessation of breathing.) Mom thinks she might have gotten surfactant at that point, but she never really received confirmation on that. Luckily, Ava was able to breathe room air within two or three days and never looked back. Her issue was bowel-related. At about one week of age, her abdominal girth rose about 2cm and x-ray showed dilated loops of bowel and two areas of possible pneumatosis (free air). She was evaluated at moderate suspicion for necrotizing enterocolitis (an acute inflammatory disease occurring in the intestines) and was immediately put on NEC precautions. Luckily, she recovered with just the protocol NEC precautions, though she was NOT happy about being made NPO (no feeds)!! The only other issue Ava really had was that she failed the car seat test and had to be in a car bed for a while.
Jackson actually cried when he was born, but was quickly brought to the NICU because he started grunting and was having trouble breathing. He was on CPAP for a few days. There was some question as to whether or not he had Transient Tachypnea of the Newborn, pneumonia, or just straight up Respiratory Distress Syndrome. He eventually came off the CPAP and was fine, no other major issues, really.
Then, when the babies were transferred to a lower level care nursery, the kid basically forgot how to breathe!
Jackson’s oxygen saturations dipped to the low 80s-high 70s and he was unable to self-correct, even with stimulation. After a half hour or so of low oxygen sats, the hooked him up to a cannula. He had a really hard time weaning off the cannula, and was eventually diagnosed with mild Bronchopulmonary Dysplasia and put on two diuretics (spironolactone and chlorothiazide.) He was also put on electrolytes (potassium chloride and sodium chloride). Jackson eventually weaned off the oxygen after his dosages of each med were doubled, and surprisingly, he passed the car seat test!
Jackson also had a cranial ultrasound that showed he had a cyst on one side of his brain. The doctors were unable to say if it was a choroids plexus cyst or a grade I Intraventricular Hemorrhage. A follow up ultrasound showed a cyst on the other side (that wasn’t there at the first ultrasound at age 3 days) that was indicative of a grade I/II IVH, which mom has always attributed to that thirty minute episode with low oxygen saturations he had in the lower level nursery.
As for lasting effects from the NICU, Jackson has had diarrhea since he was three weeks old. It started a day or two after he started the diuretics. Mom has taken him to at least three different GI specialists, a holisitic OD, an allergist, even a shaman. He has had endoscopies, colonoscopies, as well as the usual stool cultures. Only recently have we come to a preliminary diagnosis that it might be gallbladder-related, perhaps biliary dyskinesia (the muscle between the gallbladder and the small intestine does not work properly.)
Ava has asthma that has been especially bad this year. She spent the better part of the month of October on Prednisone and a flare up this month (November) has her on Albuterol four times a day, Pulmicort twice a day, Asmanex twice a day, Singulair once a day, Xzyal once a day, plus Nystatin for the oral thrush she has gotten from all the inhaled steroids!
Kim has “No other little ones yet!”
If Kim had one piece of advice for a new preemie mom, it would be this: Oh, I have LOTS of advice for new preemie moms! One is to see a lactation consultant if you want to breastfeed because it might be possible, depending on your little one’s medical issues and NICU length of stay. My kids breastfed for 2 and 2.5 years. It wasn’t easy, but we did it.
I would also suggest that they seek out other preemie parents, for a couple of reasons. One is that the support is crucial. I knew no other preemie moms when my kids were little and I felt totally alone in fighting the “Yes, they are home, but they are still preemies and you can’t come in if you’re sick!” types of battles. Everyone thought I was overprotective and crazy, and I might have felt like I had some back up if I had known another preemie parent who could encourage me and side with me and maybe even talk to unbelieving family members. Also, for me at least, learning to advocate for my children was not instant—there was a big learning curve there. And I feel like I missed out on some things because I just didn’t know about them. For instance, I told one of my post partum nurses that I wanted to ask the NICU to notify me if anything at all happened with the babies (this was hours after they were born). My nurse told me, “You don’t want to do that because they will be calling you all the time!” Even though I disagreed, and would have welcomed the interruption anytime, I followed her advice and didn’t ask the NICU to call me. Imagine my surprise the next time I went to see my kids and one of them had been intubated and no one had bothered to notify me!
Also, there were tests and procedures with which I was not familiar. Someone who knew more about those things could have prompted me with what questions to ask, what research to do, what precautions to take.
Take lots of pictures! I was worried that if I went overboard with the camera, I would annoy the nurses, so I didn’t take a whole lot of pictures of their NICU days and I totally regret it now.
I asked Kim to describe her kids in one word and she said: That is virtually impossible! Can I use three words per kid? Ava: intelligent, particular and intense. Jackson: funny, goofy and cuddly.
Other Amazing Preemies:
- Preemie Profile: 24 Week Twins Charlton & Savannah
- Preemie Profile: 25 Weeker Tyler
- Preemie Profile: 24 Week Twins Bryce and Chloe
- Preemie Profile: 29 Weeker Charlotte