Ezekiel's Lungs and Kidneys

During my pregnancy, the lungs and kidneys were his main concerns, this blog will explain those in more detail - see my last post to read about my pregnancy.  Somewhere between my first initial sonogram at 8 weeks and the 20 week sonogram is when the LUTO (lower urinary tract obstruction) occurred. Which means that amniotic fluid levels were low, and pulmonary hypoplasia was happening (small underdeveloped lungs).  With that, the kidneys were also being damaged at this time due to the pressure build up in the bladder and ureters.

The Lungs
To develop, the lungs need amniotic fluid. At 24 weeks I had another sonogram and this is where things turned around and the Urachus popped open and allowed the urine to escape into the amniotic space.  Amniotic fluid levels were normal and his lungs could have a chance to grow and develop.  Since working in the NICU, I had the chance to ask around and do some research to see if there are any cases that this has happened to. Unfortunately, there was no research out there about having to low of fluid at the beginning and then normal fluid levels.

I remember all the doctors saying, if there are no lungs then we can’t work on the kidneys.  So the plan was to deliver Ezekiel on February 15th at 39 weeks via c-section and for me to receive 2 doses of Betamethasone prior to delivery.  Betamethasone is a steroid that reduces the risk of lung complications in preterm infants, or in my case, the unknown of lung development.  However, on February 1st at 37 weeks pregnant I had a sonogram.  We knew my fluid levels were on the lower side of normal, but we didn’t know if it was due to normal pregnancy or due to lack of kidney function.  So the sonogram revealed that fluid levels were too low to stay pregnant and was whisked up to labor and delivery to prepare for the c-section.  I asked what about the steroids and they said they didn’t have time. 

Ezekiel was then born 3 hours later at 12:17pm and he came out crying!  All the doctors have been very pleased with his lungs.  We had everyone at the delivery as well: 2 Neonatologists, 3 Neonatal Nurse Practitioners, a Respiratory Therapist, and the Transport RN.  (It helps to know people!).  At birth Ezekiel only needed a little support and was placed on Nasal IMV.  Over the next couple of days he was weaned off all oxygen support and was on Room Air. Even after his surgeries he was able to come off oxygen support quickly.  Very proud of our boy!

He did have a little set back about a week ago with oxygen and needed to be placed on Nasal CPAP.  We think we just changed too much all at once for the little guy.  At that time we were increasing on the amount of food he was bottle feeding quickly, was on room air, and doing mini cycles of dialysis to keep the PD catheter clear of blood.

Currently Ezekiel is doing much better.  The doctors put him on a slower feeding schedule to ease up the volume to full feeds, and holding his oxygen steady on a High flow Nasal Cannula at 2 Liters in 21%. Here in the NICU we can increase the amount of oxygen very slowly and goal is always 21%, which is room air.  The plan is for him to get to the full volume of feeds then take him off the nasal cannula.  One thing at a time is the key with this little guy.

Praise God for working lungs! Because the lungs are good we are able to focus on the kidneys...these are a whole different story.


The Kidneys

Right after birth we were talking to the Urologist and Nephrologist every day.   The second day of life they preformed the Mag 3 Lasix test to see how much kidney function he actually had.  The results came back and they were not good.  His left kidney had no function and the right only had about 10%.  The Nephrologist says that it is recommended to start dialysis when there is 10-15% function left.  So the next day, when he was only 3 days old the urologist placed bilateral ureterostomies so there was some place for his urine to drain and kidneys and ureters to decompress.  Our hope was then he would produce a lot of urine to help stabilize his electrolytes.   

During the bilateral ureterostomy surgery they learned that his kidney’s were half of the size they should be and we definitely would be looking at dialysis and kidney transplant in the future.  Our hope was to then get the PD catheter in place and be able to hold off on dialysis for at least 2 weeks so everything could heal.  Over that following weekend the doctors watched his electrolytes very closely and we prayed for pee.  If his urine output stayed up then we would have a great chance of holding dialysis off.  

On Monday, at 6 days old, he had his second major surgery.  That was full of waiting.  Surgery APN called early in the morning saying his surgery could be anytime from 10:30am to 5pm that night.  He ended up going into surgery that day at 2pm.  I was able to snuggle him all morning and was able to talk to the surgeon and all the other doctors.  He ended up having a Peritoneal Dialysis catheter placed, abdominal hernia repair, bilateral orchioplexy, and a G-tube.  Our goal was to fix everything so that things had a time to heal properly before we start dialysis.  

Everyday they check Ezekiel’s electrolytes to make sure they are not becoming elevated.  Some of the main labs they look at are sodium, potassium, BUN, and creatinine.  Our goal is to hold off dialysis as long as possible and if his labs stay stable and his urine output stays strong then we will be able to wait for everything to heal.

That is the story of his lungs and kidneys. We thank God for working lungs and continue to pray for kidney function as we begin Peritoneal Dialysis. I will share more about Peritoneal Dialysis in my next post. In the mean time, be sure to find me on Facebook for updates and pictures.

Thanks everyone!