A post regarding Becky’s current medical condition.
Time is strange in the NICU. And things change too quickly for me to keep updates posted. Here’s where things stand right now.
Abdominal issue – There were concerns late in my pregnancy about a potential abdominal blockage. An x-ray shortly after Becky’s birth showed no blockage. After several days of feeding (and elimination), there is no problem. Hence, no abdominal surgery is required. This is a huge relief as a surgery would have kept her in the NICU for at least 2 weeks.
Cardiac condition – Becky’s Level 2 ultrasound at 20 weeks was the first indication that we were dealing with a special needs child. There have been ongoing concerns since that time about the size of Becky’s left ventricle. If her LV was too small, this would necessitate a complete re-routing of blood flow to the heart. This re-rerouting would have taken place over the course of three open heart surgeries in her first 2 years.
A drawing of what the cardiologist thought Becky’s heart looked like
The AMAZING, downright MIRACULOUS news, is that it appears Becky’s left ventricle has grown and is likely big enough to support normal cardiac function. The general consensus is that Becky will be able to live with a normal 4-chamber heart rather than a re-routed, and weakened 2-chamber heart.
Throughout my pregnancy and over the course of consultations with four separate cardiologists and surgeons, the consistent diagnosis was that Becky’s heart was unbalanced and unable to support life long-term. Every Wednesday, since July, the pediatric cardiology team met and reviewed Becky’s case. The prognosis was always the same. Never was it even once suggested to us that Becky could possibly have this result at birth.
I can’t explain the relief and joy when the cardiologist gave us the news. It came shortly after Becky’s Baptism and Sacrament of Anointing in the NICU. The cardiologist came to my post-partum room with the echo results. When she showed me the images, I told her that it looked like a completely different heart.
Sam and I literally wept at the good news, a raw release of months of fear and concern. And how appropriate that this cardiologist was an ND graduate. Here Come the Irish! I credit the intense prayers and loving thoughts of so many known and unknown people – from nuns in the Philippines to monks in Illinois, to Bible studies and Rosary groups, to a fellowship of Jewish women in Chicago and the intercession of 101-year old Sister Jane Francis, not to mention relatives, friends, and even strangers.
I think my brother Dennis summed it up best in a text to our family: “Don’t let anyone convince you that the doctors must have missed it when reading the images during the pregnancy. These are the best doctors in the world. This is the power of prayer and faith – no question/no doubt.”
Now there is a very slight possibility that this could change. And this is why I hesitated to report the good news here. Nothing is certain in life. The cardiologists need to observe how Becky’ heart grows over the next few months. Hopefully there will be no change regarding the balance of the right and left ventricles.
She will need a surgery to correct the malformed valves that currently allow the blending of oxygenated and nonoxygenated blood in her heart. One of the nurses let me listen to Becky’s heart. A normal heart goes thumpity-thumpity. Becky’s goes swooshy-swooshy (an opportunity for a Nike sponsorship?). But this is a much simpler operation (if simple is a word that can be applied to open heart surgery) with excellent outcomes. This surgery will likely take place at 4-5 months of age at the children’s hospital next door. It should be the only surgery she needs.
Genetic Diagnosis – We are still waiting for the results of Becky’s genetic testing. Clinical observations do indicate a positive diagnosis of Down syndrome. But the lab will officially confirm it. I had a prenatal blood screening test called the cell-free DNA test. It screened for an increased chance of specific chromosomal problems, such as Down syndrome. It is 99.5% accurate but is still consider a screening test. Becky’s test will be a diagnostic test which will give us a 100% certainty of her genetic makeup.
So what is the road map from here? Well Becky is in the driver’s seat now and we will take our cues from her.
- They hope to remove Becky’s IV line soon. This line was placed in her umbilical cord and remains open for about 10 days. Removing the IV lines sooner helps eliminate a potential source of infection. Once her feedings are increased to a specific level, they can remove this line.
- Becky needs to wean off forced air/oxygen. They are giving her room air (and sometimes a bit of oxygen) forced through a high flow nasal cannula which looks terribly uncomfortable. They have tried weaning her off this but she occasionally still needs the support. Once this nasal cannula is removed, we can move the OG tube (in her mouth) to a NG tube (in her nose). This should make feedings easier. She gets nutrition through this tube as she learns to use a bottle and eventually to nurse.
- Becky needs a swallow study. I began working with a speech therapist. Babies with Down syndrome are more likely to aspirate their food (meaning it goes down into their lungs). Becky’s swallow reflex needs to be strong enough to support oral feedings. As I learned today, this is a safety risk for Becky and something that needs to be closely watched.
- Becky needs to put on weight and show she can hold her food down. We are using a special bottle to help her learn to feed. Cardiac babies can have trouble putting on weight as they burn through calories trying to breathe and feed. She is making some great progress and I am encouraged with every feeding. She has to have two solid days of feedings without the tube before discharge is even considered.
I think that about sums it up. We are receiving the most amazing care. Medicine is a unique calling and NICU nurses are true life heroes. I have made some fabulous new friends including Pastor Michelle who prays something fierce over these little ones, Christine who taught me all about beagles, Michelle who wants to start a blog for aspiring NICU nurses, and Eileen whose crafts bring cheer in the midst of tubes and machines.
Sam is back home with the kids. My sister loved on them the entire time he was with me in the hospital. My mom and I have moved into the Ronald McDonald House. There are truly no words for the amazing work of this charity. Feel free to enjoy a vanilla cone or a cheeseburger knowing that it supports families in their greatest hour of need.
Many of you have kindly asked how I am doing. Well, yesterday was the first time I have felt human since March. I had a couple 3-hour stretches of sleep and a some Apple Jacks and felt I could conquer the world. Although my mother isn’t allowed into the NICU (a story for another post where I will introduce you to Nurse Ratched), she lovingly waits for me at RMH, eats breakfast and dinner with me, and welcomes me home at night with a bowl of ice cream and some cinnamon apple tea.
I continue to feel your prayers and know of your affection. I am the luckiest girl in the world, full of gratitude for all of God’s blessings.
The State of the Becky is strong, growing, and downright adorable.