The First 24 Hours

The first 24 hours are pretty critical for a CDH baby. There's just so much that they don't know while the baby is still in utero and once they're born the NICU has to get them stable and find out all sorts of things so they can determine the best option for surgery. It's also sometimes a honeymoon period though, giving parents false hope. In Jonah's case we were blessed that they thought he was doing wonderfully but we were still scared. In this case my research was very helpful as I knew many of the things I would see in the NICU.

Here is a photo of our darling boy when he was only about 9 hours old, I'll explain the different things attached to him as I remember them since they are pretty typical of what you'll see for a CDH baby the first day with the possible exception of a ventilator-type or the addition of ECMO which thankfully we never needed. Starting at the top is his cerebral (head) monitor that measures the oxygen level in his head. The tube in his mouth is his ventilator tube going off to the right side of the photo, to deliver oxygen to his lungs and the peachy/orange guard around it is to keep it in place and at the right depth. You'll notice there's also a tube going from his mouth to above his head, this is going to a suction tube that keeps his stomach compressed so it doesn't push on his lung. You can't see them, but there were stickers on his chest for measuring breathing and heartrate and another for temperature, you can see what they're plugged into off to the right of the picture, where there's three plugs, one white, one black and a green just out of the picture. The things on his right hand and left foot are called Pulse Oximeters (Pulse-Ox or POX) and they measure oxygen saturation levels, it's a tiny red light on a stretchy band that goes around their hand/foot and then the blue/white spongy thing wraps around that to keep it in place. This was the primary number we watched until Jonah went home. In his belly button you can see thin white tubes, this is how they feed him TPN solution (Total Parenteral Nutrition=his nutritional needs) and also to take blood gases to measure the Jonah's oxygen and carbon dioxide level in his blood. The syringe you see of to the left is heparin to flush out the line whenever blood is taken so that it doesn't clot or saline, I can't remember which at that point.

Now I'm aware that every NICU is different but don't be too surprised if they have limited visitation of some sort. Ours allowed parents and grandparents only (you could substitute grandparents for someone else if you didn't have any nearby). This was to protect the babies there because its critical that they don't get sick. It was hard to have our siblings and close friends visit us and not be able to see Jonah but we knew it was for the best as there were 40 children in the NICU times 6 visitors plus all the doctors and nurses was already a lot of potential for contamination. The letter they hung up said they will reevaluate it after flu season was over, but they didn't lift it all summer to my knowledge but with H1N1/swine flu going around everyone was a little on edge. I felt mostly for the siblings of the children in there and their parents, how hard on them.

One piece of advice I'll offer is to take lots of photos. Thank goodness my mom came and took this one as we didn't have a camera with us since we weren't expecting to deliver and these are the very first photos of Jonah and it was already the next day. And really, this is the best he looked for the next 2 weeks, still all pink and not dry skin and not retaining water. I really regret not taking more photos, it's probably my biggest regret of something I could have changed, I know most hospitals (CHOW included) have a camera somewhere if you ask for one, it was checked out the one time we tried but we should have tried harder as we missed most of his first week except when grandma came to visit.

My mom took these photos that first morning but then had to leave as I had a baby shower that afternoon, we thought planning it 6 weeks in advance was far enough. My mother-in-law was throwing it and she decided to have it anyways. My best friend from the night before was already going so she could tell the "going into labor" story and my mom opened the presents while my mother-in-law took pictures to show me in the NICU later.

At the bottom down here I'll put a photo of the monitor screen in our NICU, click on it to make it larger (this is much much later, so don't be surprised if the numbers are different for your baby). The numbers on the right are Jonah's, the ones on the left are another patient's as we were sharing a nurse, this way she could see both children's stats if she was in either "room". So, from the top is:

1. Green = heartrate (137) - target rate of 80-200
   We very seldom had a problem with this, but when his heart rate dropped it was called a "Brady".
2. Yellow = respiration rate (79) - target rate of 15-100
   This was kind of hokey according to several nurses as if the baby isn't laying just right or was moving around it would go off as a false alarm - but better safe than sorry.
3. Blue = Oxygen Saturation (96) - target rate of 90-101
   This is the one that we had most problems with, we alarmed all the time! THIS is the number I watched all the time.
4. White = Blood Pressure (92/48) - target rate of 30-90
   We had some blood pressure problems right after the first surgery, but it was quickly resolved so I don't know too much about this one, after a while they went to only measuring this at every 3 hour assessment so this was a static number.
5. Last Box is any alarms that have gone off. You can maybe see that ours were usually "desats" (meaning his oxygen saturation dropped below 90%.