Still of the Human Species

Dec 5, 2011 -Throughout Jacob's existence, whether that be in utero or in the hospital, I have had a inner instinct telling me when Jacob needs extra care. It began when I was pregnant and started showing warning signs that something was amiss. Everyone-my midwife, a radiologist, and a perinatologist, all agreed everything was fine. Only through following my heart and with encouragement from my mom, did I seek out further answers and eventually found out Jacob had CDH. If we had not found out ahead of time, Jacob would have been born at a free standing birth center where he would have surely died. Shortly after surgery, I had an overwhelming feeling that I couldn't explain telling me something was wrong with Jacob. I was nervous and crying and trying to explain to the nurses (who probably thought I was nuts) that I just felt something was "off" with him. I couldn't put my finger on it, but it came to be just an hour or so after that he had an unexplained fever and was put on antibiotics. Days before Jacob got really, really sick, Andy and I voiced over and over that Jacob's vitals were showing that something was "off" once again. They were trending in the wrong direction. We were told, "CDH babies just breathe faster than other babies" or "CDH babies often do this" but it wasn't the way our CDH baby normally looked or behaved. The next thing we know, Jacob is being put on the oscillator and diagnosed with pneumonia.

The past few days have been much of the same. My heart was telling me something was wrong and I couldn't let it go.  Jacob had had a ND tube placed at one point that was functioning to give him his feeds. It was difficult to place and had to be done by a radiologist with the use of x-ray to check for continuous placement. Just before leaving the NICU, it seemed this tube was not longer working properly and had slipped out of place making it an NG tube (in his stomach.)  The doctors decided to keep it there to see how Jacob would tolerate gastric feeds. It wasn't long after that Andy and I along with Jacob's nurse noticed his stomach was strangely distended. The nurses were able to draw 50cc of milk out of his stomach which was two and a half hours worth of feedings. It was decided his stomach was not ready and another ND tube placement was attempted bedside. Andy and I knew this would not be affective because two radiologists had a difficult time even with the use of x-ray. As we predicted, it did not work and Jacob began throwing up all his stomach contents. Jacob was then sent to radiology where another radiologist attempted unsuccessfully to place the tube and another doctor with a high success rate was called in. He was able to get the tube in with his unconventional methods which were torturous for Baby Jacob. I have never seen a baby writhe is such pain before. Again Andy and I noticed Jacob's stomach growing and growing hours after feeds were started again. Then Jacob began to throw up continuously until his tummy was empty. At some point his tummy would fill up again. Eventually, his stomach contents were drawn out and this time it was 60 cc of milk and mucous. I brought up to one of the fellow surgeons that it seemed he wasn't even processing his own secretions and questioned if there was another problem. The fellow mentioned pyloric stenosis but it would be really rare for a baby "like Jacob."

The next day the doctors decide another ND placement attempt is necessary. To me, something was not right, but all I can do is rely on the doctors that keep telling us his stomach is just slow because his system is working so hard to breathe. This time I insisted Jacob get a bolus of morphine before the procedure. The nurse thought this was unnecessary for such a simple procedure that is done a hundred times a day, but she did not have to hold down and already restrained 5 week old. Andy and I have become desensitized to watching our baby go through difficult procedures after all he's been through. I was not being overly sensitive or dramatic. This was torture!! Jacob would be given something or I was not going to allow it. Thankfully, I won this small battle and Jacob was given extra morphine that helped take the edge off. Andy was not with me and I had to fight this battle on my own. It is hard to stand up to medical staff and be persistent. It is easy to feel small and intimidated. It is these times I am thankful for my big mouth and feistiness, but if I feel intimidated, I can only imagine how difficult it is for other parents that my not be so outspoken as I am.

Prior to the doctor starting the tube placement procedure, Jacob threw up. Massively threw up! It was all mucous. This was telling me that he wasn't even digesting his own secretions anymore. Something was wrong and getting worse. The radiologist told me afterward that everything looked okay but Jacob's anatomy made it very difficult to get it in the right place, and he could not get it in the ideal spot.

Once his feeds were started back up, it didn't take long for his stomach to fill again.  It was obvious the tube had worked its way out of the pylorus and back into the stomach...again. I wanted to drain his stomach to see if it was milk (meaning his tube had moved) or just mucous (meaning he wasn't digesting his own fluids.) A surgical resident was called and her brilliant advice was, "Well, I don't want to do anything. We should just let him get to the point of throwing up again and that will motivate the team to do something more about it." Really?! We have to let Jacob get worse to "motivate" doctors to do something about this?! This is about the time our nurse and of course myself became unglued and I started throwing fits. I couldn't let the doctors let this one play out in their time. Something needed to be done now! This same resident had an x-ray done to check on his tube placement and "confirmed" it was in his stomach, but something was clearly wrong and I was not going to wait until morning! Our nurses were great! They continued up the chain and a more senior doctor was called at home and the hospitalist was brought in. The hospitalist came in, listened to our frustrations, and then showed us Jacob's x-ray. His feeding tube was no longer in the intestine, in fact, it wasn't even in the stomach anymore as the resident said. It was actually looped in the stomach and half way back up his esophagus!  Needless to say, it was pulled back nine centimeters and left in the stomach to be used as a drain to prevent further throwing up.

The next day all of our regular surgeons were VERY apologetic. What was funny was when I would bring up pyloric stenosis, the doctors acted very skeptical saying it would be so uncommon for a baby like Jacob, or we never see this in CDH babies. My mom and I brought it up to the doctors multiple times~Jacob is not just a "CDH baby," he is still of the human species! I asked our attending surgeon, "If we brought Jacob to you with all these eating problems and symptoms what would you first lean towards?" and he said point blank,"Pyloric stenosis." At some point, the doctors need to stop keep their patients in the box of their diagnosis and look at the whole person. They were so stuck on the fact that Jacob had CDH and reflux is extremely common in these babies along with slow digestive systems, that they couldn't see beyond that.

Luckily, studies were ordered to figure out what was wrong and a simple ultrasound showed that Jacob has pyloric stenosis. This is a condition were the pylorus (the valve between the stomach and intestine) is too narrow to allow correct passage of stomach contents into the intestine. Well, our stay on the floor was going to be short lived. Jacob is going to have another surgery today.  He will be returning to the NICU so they can monitor him more closely.  The good news is that he will probably only need an NG tube in his tummy for awhile and maybe he really doesn't have as bad of a reflux problem as we thought. Most babies begin feeding within hours of coming out of this surgery and possibly Jacob will be feeding normally sooner than expected. Fingers crossed! When not changing his clothes/blankets (that he's constantly throwing up on), we're holding him just to get him to feel relaxed and to forget that he's starving (he hasn't eaten in 4 days!) Poor Jakey, he has had a really rough couple of days and nights, not mention the first 42 days of his life. Please continue your prayers for our little sweet pea.