Sunday, June 24, 2012

Bloody Burps

WARNING: Long story from pissed-off mother ahead.

On the first night that we had him home from the hospital, Aiden spit up blood.  We didn't realize it at first.  I found a spot of blood on the outside of my bra, but none on the inside (where I had a nursing pad).  That was in the middle of the night, and when we turned on the lights in the morning, we realized that there was also blood on the sleeve of Aiden's pajamas and more on the Boppy where he lays when eating.  Hmm, we wondered, did this blood come from him or from me?  I couldn't find any cuts or blisters that would indicate that it had come from me, but that did seem to be the logical conclusion.

Until the next night, when I had a truly horrifying experience.  I have been using a nipple shield when nursing Aiden, and when he pulled off at the end of a feeding, there was a gigantic blood clot on his side of the shield.  Ben says I am never to use this phrase again after this, but it was pretty much like a big pacifier of blood that he was sucking on.  SO SCARY.

When I burped him after his next feeding, he spit up blood instead of milk.

After that, we started finding bloody spit-up on every surface he had touched: his crib sheet, multiple pairs of pajamas.

At 8:05 am on Friday, we called his doctor.  Let it be said that none of us have actually met this doctor yet.  We switched the kids' insurance about a month ago, so now we can see this doctor that has been highly recommended to us, but we haven't actually been there yet (his birth follow-up appointment is on Monday).  Ben talked to a nurse at that office, and she said that it sounded like I was the one transmitting the blood and that I might have an infection of some kind, so I should call my OB.  That didn't make any sense to me, especially in light of the blood clot, and it didn't sound like something that an OB could handle, so I called the lactation consultant instead.  I left her a message, then waited several hours for her to call back.  When she hadn't called by afternoon, I tried calling her again and got her message again, so I figured she probably wasn't at work on Friday.  Then I called my OB, and the staff there said that 1) this was not something that they would typically deal with, 2) that given what I had told them, it didn't sound like there was any way that the blood was coming from me, and 3) we should take Aiden to the ER.  We then called back the family practioner and told the story to a different nurse, who consulted a different doctor, and told us to take him directly to the ER.  So after wasting 8 hours on attempting phonecalls, we packed up the baby and headed back to the hospital.  The older kids stayed with my mom, who had arrived on the scene in the midst of all these phonecalls.

When we got checked in to the hospital, the nurse wanted us to give her Aiden's medical history.  Um, he's 4 days old (actually 3 at that point, but he turned 4 days about 2 hours later...); his entire medical history has occurred at this hospital and should already be in your system.  The nurse then told us that we would be seen by a PA, who she praised as "very thorough."  When the PA came in, the first thing he did was look inside Aiden's mouth to see if there was any blood in there.  After that, he told us that he was baffled because he had never seen a baby so little before, so he was going to call and consult with a pediatrician.

After he walked out, Ben kept looking at Aiden, then said, "I know that guy said he didn't see blood, but I thought I did.  I'm going to check."  So he used a washcloth from the exam room to wipe out Aiden's mouth, and sure enough, it came out bloody.  At that point, it had been about four hours since I had nursed Aiden, so clearly, that blood came from him, not me.

When the nurse came in again, we showed her the washcloth and she decided to do a test to see if it was actually blood.  That seemed ridiculous to us, since obviously it was blood; we wouldn't have gone to the ER otherwise.  But she wiped the blood from the washcloth onto a testing strip, then rinsed the washcloth and tossed it into the laundry bin.  Sure enough, the test showed that it was blood.

After that, we waited.  I nursed Aiden.  Ben went to the cafeteria.  And an hour later, the PA came back and said that the pediatrician had finally called him back and said that in 99.9% of cases, the blood is coming from the mother.  Yes, we explained, we know that; I even experienced that with Shay.  But we found a blood clot in his mouth, on his side of the nipple shield.  And now we've wiped blood directly out of his mouth.  And oh yeah, the two times that I have pumped, there hasn't been a single speck of blood in it.  Did you tell the pediatrician all that?  Well, no.  Exit the PA to call the pediatrician back.

Next a nurse from the mother/baby unit came down to see us.  That was the best part of the night.  We'd had a really good experience there, and it happened to be one of the nurses who had cared for me earlier in the week, so I felt good about that right away.  She listened to everything we had to say, then did a breast exam to see if I had any cuts or blisters--which I did not.  She said that it sounded to her like it was utterly impossible that the blood was coming from me and that she would report that to the PA and (theoretical) doctor (who we had not yet seen).  Because she was such a sweet woman, she also called the lactation consultant on her cell phone and left a message.

Then we waited some more.  Another hour passed.  Finally the PA came back in and said that the pediatrician had called back and (without ever having seen our child or talked to us) ordered an x-ray.  So we took our poor little 4-day-old over to x-ray.  And what did the big, expensive, scary test reveal?  That his onesie had metal snaps on it.  Ohhh, right guys, maybe you should take that off first.  So they did two x-rays.

Back in the exam room, a doctor finally came in to see us.  The first thing he said to us?  "So, I hear you have a lesion on your breast."  Um, no.  The whole point of the nurse's report was to tell you that was NOT the case.  If that had been the case, then it would be pretty obvious where the blood was coming from and I wouldn't have brought my baby to the ER.  But he kept coming back to that idea, in spite of the fact that we kept correcting him, and he never did an exam himself to show otherwise.  Awesome.  He repeated the statistic that in 99.9% of cases, the blood comes from the mother.  We argued and again presented our evidence that it didn't (clot, wiping out mouth, pumped milk).  Fine, he said, if we had a sample of the blood, we could run a test on it to see where it came from.

That was great news.  By that point, we'd been at the ER for almost 5 hours, and every person we had seen and talked to was wasting their time arguing over where the blood came from.  We felt sure that we knew it was coming from Aiden and had gone to the ER in the first place to figure out what was the matter with him, but no one else seemed to be caught up to that idea yet.

The only problem was that he hadn't spit anything up since we'd been at the hospital, so we didn't have a sample.  Finally we reminded them about the washcloth and--I am not kidding you--they dug through the dirty laundry to get it out.  We reminded them that the earlier nurse had rinsed it out, but they took it off to the lab to try to run a test anyway.  Not surprisingly, the test was inconclusive.

Then we asked about the x-ray, and the ER doctor said that even if Aiden's GI track  had been swimming in blood, that wouldn't have shown on an x-ray, because they only show bones and organs.  Um, yeah, so then why did we just have one??

At that point, it was like they all just gave up.  The doctor and the PA just kept repeating that statistic about 99.9% of cases and that he was "probably fine."  And they sent us home.

As we were checking out, the wonderful lactation consultant called my cell phone.  She listened to everything we had to say, then reiterated the mother/baby nurse's opinion that there was no possible way that the blood was coming from me.  She was shocked that a doctor who had actually seen the evidence of his blood on the washcloth could have concluded otherwise.

So basically, the only two people who actually listened to us at the ER were the lactation consultant (via phone) and the mother/baby nurse.  The doctor, PA, ER nurse, and whoever that pediatrician over the phone was just kept repeating statistics about "usually," not taking into account any of the factors in Aiden's individual case.  And after 5 1/2 hours in the ER and two very expensive and completely useless tests, they sent us home with no answers.  Not very reassuring to the people whose 4-day-old baby is spitting up blood.

We came home exhausted, hungry, and beyond frustrated.  We've been keeping a close eye on him, and he hasn't spit up any more blood today (although he has spit up milk).  The working theory that Ben and I have developed (which none of the useless people in the ER even suggested) is that perhaps he had swalled some gunk (for lack of a better term) during birth and was coughing it up during those first few days of feedings.  We're really, really hoping that this is correct and that these bloody burps don't signal some much greater problem yet to be discovered.

Oh, and as an addendum to the story.... This morning, while Ben was at work and my mom was watching the kids, Liam somehow escaped her, ran into my bedroom, and woke me up.  He then climbed up on the bed, jumped, and fell directly across my chest (which was already severely sore and leaking milk, since the trip to the ER had completely wiped out Aiden, who then ate poorly in the night).  Somehow or other this caused me to lose a large chunk of skin, so now I actually DO have a raw, bleeding spot on my nipple.  I have had to pump rather than breastfeed all day to avoid giving him more blood, and clearly now any medical professional that we see is going to point at that and be like, "duh, obviously the blood is coming from you."  So, so frustrating.  Not to mention painful.

So, friends, please just say some prayers that Aiden is okay and that this doesn't all indicate some greater problem.  Aside from the spitting up blood thing, he's perfect.... great appetite, great sleeping, alert and strong.  So we've had a scary first few days and a rough transition home from the hospital.  Please pray for us and for things to get easier!


Cathy Willman said...

I'm telling you, take him to Riley if he spits up again. No messing around. And they trust the mama's instincts. At least the baby floor folks seem competent.

Chris, Britta, Grace, Gianna, Toby, Josh, and Sam said...

Amy - I'm so sorry that you had to go all through all of that just to realize that a mother's instinct is a far better measure of problems. My blood pressure was seriously on the rise as I was reading your post and I wanted to get ahold of those practioners and tell them to WAKE UP! Anyways. I will pray for peace during the rest of your babymoon. Enjoy this time with Aiden, who by the way is super stinkin cute :) Wish we could visit, but know that you're dear to me.