The day we checked out of the hospital, (technically day 3 for Ben)we were both checked out by our respective doctors. Both of us were given a clean bill of health, though Ben's pediatrician did note that his bilirubin levels were slightly elevated, but had not been increasing quickly and weren't high enough to cause concern. We packed up, changed Ben into his cute little blue and white striped one piece outfit, and made the 45 minute trip home. Any of you dear readers who have experienced bringing a newborn home, it is wonderful, miraculous, life changing. It is also stressful, terrifying, and anxiety-filled. While it is true that I did not feel the same overwhelming feeling of terror and adrenaline that I felt with Will, bringing Ben home had its own set of ups and downs.
The first 2 nights home were just as hard as we expected, which is actually a good thing because they could have been worse than we expected. Sleep was minimal at best, but I think we both had the feeling that we were going to survive a little better than before. My only problem was that as time went on it was getting harder and harder to nurse Ben. He was extremely lethargic, to the point that by the time I actually got him awake enough to eat, he was so upset that he wouldn't eat for screaming. We would go on like this for 45 minutes to an hour, after which he would finally eat, but not for very long before he fell asleep again.
(Small break for a soapbox moment here.) As far as the old adage "never wake a sleeping baby"- which people have felt the need to say to me on far too many occasions- it is NOT true for newborns. Many newborns take quite a while to respond to their biological cues, like hunger, and their systems are not meant to go too long without eating. They actually will sleep even longer if you don't wake them, but because they go into a shutdown mode where their bodies think they have to conserve energy because they are not getting food when they need it As they get older this changes, at which point the adage makes more sense. So when I say I had to wake my baby to feed him, I was doing it not only based on my own reading on the subject, but based on specific instructions from his pediatrician and the hospital staff. (End of soapbox moment.)
I was getting very frustrated with the nursing situation, but honestly even then I wasn't overly worried because I had such difficulty nursing Will, and had to use so many aids to get through, that I was still just impressed that when the little guy finally did eat he was doing so completely naturally, and reasonably efficiently.
That Wednesday, 2 days after we came home from the hospital, we had an appointment with the pediatrician for a weight check. This is a normal part of the routine with our pediatrician (and most I believe) to keep track of weight gain until it is clear the little guy is thriving. I dressed him in a cute little outfit and we all loaded into the car to make the 45 trip to the doctor (I know, a long way for a doctor, but you go where the good doctors are, right?). We all had to go because as a post-op patient I couldn't drive, but I also couldn't stay home with Will because I had to be with Ben to feed him before the drive home. (One of the downsides to not living close to any family; no one to watch little ones on the fly.)
When we got there, I noticed that Ben looked a little orange under the florescent lights. Ok, he looked ORANGE. Not yellow, not tan, but bad fake tanner orange. When our nurse Kay retrieved us from the waiting room to take a us back for the check-up, she notice his color too. She weighed Ben, and he was 11 lb exactly, which was his weight the day he left the hospital. I was actually pretty happy about that number because babies will often continue to lose for a day or two before they start regaining their birth weight, so no change was a good thing. The doctor came in and did the normal checkup, and was generally happy with his responses. I told her about the nursing problems, but since he was having plenty of wet and dirty diapers, the doctor wasn't overly concerned, feeling we still needed to find a routine that worked for us. She then told me that she thought Ben's billirubin was probably somewhat high, given his color, and she wanted to test him to make sure the levels were not too high. She said that levels under 14 were fine for his age and weight, and levels between 14-18 were elevated and might require a home billirubin bed for a few days.
I have to say that I was very unconcerned with this information, all things considered. I know several people who had to "bake" their babies in a billi bed, and it all sounds very routine. A little jaundice seemed like no big deal, and honestly I was relieved to know that Ben's sluggishness to nurse had an easily identifiable cause. So I took the lab sheet the Dr. gave us and took Ben downstairs for the heel stick. Any time your child has to have blood drawn or a needle used on them in any way, it is not fun. Heel sticks are bad particularly bad because they often have to squeeze the heel to get a good flow to fill the tube. Little guy turned pretty red on top of that fake tanner orange, and everyone got to hear just how strong his lungs were, but thankfully it was over quickly. Following the Dr.'s directions, we then headed home- if his levels were high enough for a bed she was going to send home health to the house to set up the bed and show us how to use it.
We drove the 45 minutes home and decided to stop at the park to give Will some much needed playtime and bake the baby in a little natural sunlight. The baby slept peacefully while Eli ran Will as hard as he could. We then came home and made lunch. I had just sat down to have my sandwich when I got a call from the Dr.'s office. She asked me if we were home yet, and I happily told her about our trip to the park. She then apologized to me and told me we would need to come back to the hospital because Ben was going to have to be re-admitted. Ben's bilirubin level was 22.9, and if the levels increase past the mid-20s and up into the 30s, a condition called Kernicterus can set in. The NIH describes Kernicterus in the following way:
Kernicterus is caused by very high levels of bilirubin. Bilirubin is a yellow pigment that is created in the body during the normal recycling of old red blood cells. High levels of bilirubin in the body can cause the skin to look yellow (which is called jaundice).
In some cases when there are extremely high levels of bilirubin in the body or the baby is extremely ill, the substance will move out of the blood and collect in the brain tissue. This can lead to serious neurological complications, including brain damage and hearing loss.
I was crying before she got much else out. She apologized again and again, but honestly, I saw the same things she did, and in my follow-up reading on the subject I agreed that Ben really didn't present symptoms indicative of bilirubin levels that high. I was so upset that we had to go back the hospital, but I was never upset with our doctor. I always felt she was doing what was in Ben's best interest, and glad that she was cautious enough to go through the testing despite the fact that Ben didn't have all the symptoms. So I got off the phone with her and spent the next 10 minutes crying and repacking bags that hadn't even been fully emptied. Eli ran all over the house for me grabbing things for us. I was being admitted with Ben since he was a breastfeeding baby, so I would have the luxury of a bed- which is so much more than many parents get when their child is in the hospital.
We arrived at the hospital and went to the small section for Pediatrics. The nurses were waiting for us and had a room set up. They had me take Ben's clothes off so he was just in his diaper, and after taking his vital signs, they slipped and eye mask on him and put him on a flat bassinet with no bedding, under lit with a strong blue light, and rolled another large blue light over him. He hated it. He cried and cried, and of course I cried too. He couldn't be swaddled, which is a big way newborns get comfort and security when they aren't being held, and we could only hold him to feed him. Thankfully, he was able to get comfortable after a while and drifted off to sleep.
So we were admitted Wednesday afternoon, and the plan was to keep him under the lights as much as possible, and re-test his bilirubin levels every 8-12 hours. Eli and Will went home after a couple of hours because Will just couldn't be expected to stay still and calm for so long. I know Eli absolutely hated leaving us there, but without anyone close by to help, we had to be practical. So I mostly sat in this room by myself, either watching Ben, or mindlessly staring at the tv. As the afternoon went into evening and I started getting used to the routine they would take us through, I was able to relax a little and read some. I was still nursing every 2-3 hours, and they were having me supplement him with formula after I was finished nursing, since one of the causes of jaundice can be a lack of fluids when breastfeeding isn't yet well-established.
They checked his levels fairly late that night (another heel stick) and were happy to report that his levels had come down a bit. The next morning when they checked again the levels had dropped even further, and after a check-in with the doctor, it was decided that if he continued through the day at the same rate we would be able to go home the next morning. I was so happy that he was responding to the treatment. Friday morning came, and as expected his levels were great- 14.3. When he came out of the bed and took his eye-mask off you could tell a big difference between the exposed and unexposed skin- he was all pretty and pink where the lights had shone, and had yellow raccoon eyes where the mask had been. We went through the discharge paperwork, and the Dr. asked us to come in the following Wednesday for a weight and color check to make sure everything was back to normal feeding -wise.
We went home and basically started the routine of settling in all over again. Ben was definitely more alert starting out, and nursing was going a bit better. We got through the weekend and the couple of days that followed, and I looked forward to his appointment to see how much weight he gained.
Once again, when I took Ben into the office, he seemed orange to me again, and while our nurse noticed the color too, she didn't seem too worried. Ben had only gained 2 oz though, and when the Dr. examined him she decided we should do another bilirubin test just to make sure. She told me that in 14 years of practice she had never had an infant get re-admitted twice for jaundice, but just to be safe we should stick around the hospital until the results came back.
When the results came back, his levels were at 23.2- even higher than the first time. The Dr. came in to talk to us as they were getting a room ready for us on the Pediatric floor. I sat there nursing Ben with tears streaming down my face as she explained that they were going to have to do a much more in depth series of tests, because this kind of rebound in the bilirubin levels was not at all typical, and they needed to check his thyroid, kidneys, and do lots of blood work. She also told me that I would have to completely stop nursing, at least temporarily, to make sure my milk was not contributing to the problem.
I am going to stop here as this post has already gone on forever. I will finish this part of the story in the next couple of days I promise, but typing all this out is a little emotional, and I want to clear my head and start fresh tomorrow.
Oh, my goodness! What an ordeal for you all. I'll be waiting for the next chapter!
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