A New Approach, and Finally Some Answers

Tuesday, November 25, evening

So, today was one of the only times we've ever left Faith alone, without somebody at the hospital in case something happened. My mom and I had a couple of errands to run, so we went out quick to do them... we were gone maybe 4 hours. I'm not used to having a cell phone, so I had forgotten my phone at the hospital. We got back, and I thought it was weird that when I walked by the nurse's desk there were a couple of other nurses there, including the charge nurse, and I heard her say "Oh, there she is."

I went into the room and checked on Faith, because that made me a little nervous, but everything looked fine. I noticed her Fentanyl was dropped again, to 1.5 now, and her rate on the vent dropped from 35 to 32, but otherwise everything looked pretty much the same as when I'd left her. Then I went to check my phone, since I figured Dave had probably called, and I noticed a missed call from the hospital, and I really started to wonder what was going on. It took probably 10 minutes or so before Liz, the nurse, came into the room and told me that they had tried to call because surgery wanted to do a tap to drain off some of the excess fluid, and they needed my consent.

Then I got more nervous, and called Dave and my mom to tell them what was going on, and to get my mom to come up to the room so that when the doctor came in she'd be there to hear what he said, since sometimes I don't necessarily absorb the information as well when someone's just telling it to me, so I try to always have a second set of ears when it's something really important.

The nurse told me that the surgeons had talked to the neonatologists, and they had weighed the pro's and con's of the procedure, and thought that Faith would benefit from it. The neonatologists have been paying more attention to her the past couple of days. The surgeons are still in charge, but it seems like the neonatologists want to know more of what's going on. They even stopped outside her door earlier and talked about her while they were on their rounds.

While we were doing her cares, I asked when Faith's next feed was; Liz told me they weren't feeding her anymore. That was disappointing news. They had been getting more green stuff from the tube into her stomach, so they had to stop feeding until it went away again. I know she had one feed, I think maybe 2...

By that time, my mom and the boys were upstairs, so I went to let them into the NICU, and we came back to Faith's room. I told my mom what the nurse had told me, because my mom had the same initial reaction that I had to the news that they wanted to tap her- her doctor, Dr. Partrick, had seemed opposed to that idea yesterday, so we both wondered why he would change his mind today. I mentioned that Liz had said the neonatologists were involved in the decision, and said that I wondered if we could talk to Dr. Hall, the neonatologist who was directly involved. I went out and asked Liz to have him come down.

About 1/2 hour later, Dr. Hall came and explained the whole procedure and the reasoning behind it. I got to ask my questions, and he actually listened and gave me straight answers. (I think the surgeons should be politicians, because they all answer questions the same way, really talking around the question.)

He explained that the fluid in her chest is actually a pocket of fluid between the lung and the chest wall (the pleural space). He said that what they'd do is just put a needle into that pocket and drain it off, and what that would do for her is relieve some of the pressure on her lungs, and give them a chance to look at the fluid from a diagnostic view, and make sure that it's the kind of fluid they think it is (just "effusions", the fluid that leaks out of her blood vessels) and not from something else. He said that he called and talked to Dr. Partrick personally, and that they discussed the procedure together and decided it was the next logical step.

Hearing him explain everything made me realize that it really was something that was a good idea, and then Dave called and my mom told him everything Dr. Hall had told us (I was pumping). I talked to him after I finished, and we decided to go ahead and let them do the tap.

Dr. S (it sounds like Sandeval...) came into the room then and had me sign the consent, and I held her little hand while they did the procedure. They gave her extra medicine, so she went to sleep and it didn't hurt. It reminded me of an amnio; they stuck a needle with a catheter (kind of like an IV) into her chest, and then used a syringe and drained out the fluid. They took 80 mL (about 2.7 oz) of fluid out of the pocket by her right lung. They came and did an x-ray right after that, and said her right lung looked much better. They said they would come and do her left side the next day.

Wednesday, November 26

Mary Ann was our nurse again today. Dr. Potter came in around 8:30 or so to drain Faith's left side. I was pumping when he came in the room, so he just told me what he was going to do and then left until I finished.

He came back in and got all set up to do the tap. I held Faith's hands while he drained the fluid pocket on her left side; he drained off about 60 mL (about 2 oz) of fluid. They did another x-ray afterwards.

When the x-ray came back, it showed that all of the fluid was back on her right side. Once again, the doctors were stumped. They had been sure that when they got the fluid drained off, her lungs would expand and it wouldn't come back.

The good news was, all of the tests they had done for infections had come back negative. The tests on the fluid they'd drained from her right side showed that there were white blood cells in the fluid, but no bacteria.

The bad news was, that meant they didn't know why she was still swelling and having all of this fluid in her chest.

The doctors ordered an ultrasound of her legs to check for blood clots, and another echocardiogram to make sure her heart was ok and that all of the main vessels around her heart were functioning correctly and that there weren't any clots there, either.

The nurse practitioner came into the room to explain, saying that they were sure it was a clot, because if there was a clot it would cause the swelling in her chest and head. As soon as she said that, I got very worried, thinking of the possibility of stroke, cerebral palsy, etc if the clot moved...

Luckily, she came back a little while later and said there was no clot. Good news, but again, bad news, because once again, they had NO CLUE what the reason for the swelling was. She said they might have to put chest tubes in to keep the fluid drained.

She said that a doctor would be coming in to talk to me some more, so I sat around the room and waited. And waited. And waited. Shift change came, our night nurse was Amy, and I asked her if someone was still coming to talk to me. She had to call surgery with the results of a blood gas, so she asked them if someone was coming. The only person there was a resident, which means she's just learning and doesn't really know anything, so she tried to explain that there was no infection and no clot, so they were just going to keep doing what they had been doing. Not what I was looking for.

Dave and my dad came down after Dave got off work; we all ate dinner together, and the boys kept us entertained until it was time for bed.

Thursday, November 27

Faith is 2 weeks old today, Thanksgiving. She was very upset this morning. I think as she gets more awake, she is more annoyed at having the breathing tube down her throat, and based on the amount of air they get from the tube in her stomach every time they irrigate it, I am sure she probably has a stomachache (not to mention she's probably HUNGRY!).

She was also extra pale this morning... and looking pretty darn swollen. Dave and I saw the doctors go by on rounds, and I watched them the whole time they were in the hall, hoping that one of them would see me and realize I was still waiting for someone to come and talk to me. Just before they moved on, Dr. Hall poked his head in and said he'd be back to talk to us, and that they now had a PLAN!

This was exciting news. I told Dave not to be surprised if the plan was to put in the chest tubes to keep the fluid drained. We hoped that having a plan meant that maybe they had an answer WHY she is swollen. I called my mom and told her that the doctor was going to come and talk to us, and that they should come in so they could be here when he did.

Finally, Dr. Hall came back to talk to us. He explained that they know now what is causing the swelling, and why the fluid came right back. He said it is not normal "effusions", fluid that leaked out of her blood vessels. He said that it is fluid from her lymphatic system, called chyle. It was leaking from her thoracic duct, which he said goes from the intestines and empties into the vascular system in the chest. This duct is the one that deals with fats that we eat, particularly long-chain fats. They could tell it was chyle because of the white blood cells that were in the fluid from her right side; the cells were lymphocytes, which indicated that the fluid was chyle. He said the condition is called "chylothorax", and usually happens in babies as a result of post-surgery trauma, but that it is very rare after gastroschisis; it usually happens in babies who've had surgery in their chest. (I actually read an article written by a surgeon about the condition, and it lists the frequency as 0.2-1%, after cardiothoracic surgery, which is surgery in the chest... so I'm guessing it's probably even more rare when there hasn't been any surgery in the chest...)

He told us that their new plan would have a 3-pronged approach. First, they would insert chest tubes on both sides, to keep the fluid drained. Second, they would use a medication called octreotide, to help the thoracic duct stop leaking. Third, and most disappointing, they would not feed her until after the leaking stops. And, because the predominant fats in breastmilk are long-chain fats, when she is able to start eating, she will not be able to have breastmilk, because those fats would cause the leaking to come back and the fluid to build up again. He said that this doesn't mean she will never be able to have breastmilk, but that it will probably be a few months until she is able to process those fats. So I guess the pump is going to become my best friend over the next couple of months... I hope that I will continue to have as good of a supply as I currently have, so that once she is able to breastfeed, it will still be a possibility.

Dr. Potter came around 1:00 to get our consent and start getting things together for the procedure of putting in the chest tubes. He also told us that they'd be putting in a PICC line, to give her medications through. Because everything needed to be sterile for the procedures, we had to leave the room, so we decided to go ahead and leave early for Thanksgiving dinner.

We went to Traildust Steakhouse, they were doing a Thanksgiving buffet to raise money for a charity program called Step 13.

When we got back, Faith looked so much better. Her face was less swollen, and her chest seemed to match her legs and arms better. Her headband is almost too big again!She was also much more comfortable, resting very well, but not completely drugged. She even opened her eyes and spent time looking at me, Dave, and my mom.

We aren't able to hold her anymore until her chest tubes are out, but just knowing how much better she is doing with them in makes it ok, and hopefully they should only be in for a week or so, until the medication works and the fluid stops coming back. And, once the tubes are able to come out, the ventilator should follow quickly.

Dave and my dad had to leave tonight to go home; Dave has to work in the morning and my dad is going elk hunting. They'll go hunting together on Saturday, and then come down either Saturday night or Sunday morning. I think Faith will be doing much better by then, and Dave will be really happy with her progress.

Please pray that this is the answer, and that the doctors' plan will work, and that Faith will not have to be on formula for an extended period of time.