The Dell Children’s Hospital Story

Some background before you read this entry. This happened within days of Xander’s birth so we were still on the roller coster of being new parents. At Xander’s two day checkup, it was discovered he was jaundice and we were told to head to Dell’s Children not ASAP, but by end of day. We weren’t too worried as we knew lots of kids who were jaundice and figured it would be a quick trip. It turned out to be some of the hardest days of our journey as parents, even thinking back on it now. If you mentioned it to Stephen, you can actually see his blood pressure rise. He said that’s what he truly felt like a father, when he wanted to murder someone for what they unnecessarily put Xander through.

It was a hard time for us and we made an official complaint about our visit afterwards. We weren’t expecting much, but we wanted to do it to make sure it didn’t happen to anyone else. It was a third party company doing the satisfaction survey and they actually got us some money back!

So anyways, this is the story I wrote out to send to the third party company. I feel it will be a hard read, especially if you have kids as it was hard for me to write. But I figured I would share it anyways as a reminder to always fight for your kid, even if it seems no one is listening.

Note I did take out the doctor’s and nurses’s names. I didn’t want anyone to go on a witch hunt after reading this  🙂

Read at your own risk of emotions.

After spending most of the day already at a few doctors appointment, it was tiring to then have to repack our bags (that I just unpacked) to go to the hospital for jaundice. We were told to go to the 4th floor and meet up with Dr. H in the NICU

So we get there around 7:30PM, checked in at information desk and went up to the 4th floor. The nurse we first encountered looked at us confused as we didn’t have a room up there, but she ushered us into a small waiting room where we met with Dr. H. Turns out, we needed to actually go to the third floor to check in and she said we would also be in the third floor as he actually didn’t need to be in the NICU.

So we go back down and wait. She sat with us a few and we talked about his jaundice in broad terms and told her we found out we needed to supplement his breast feeding with formula for a few until we can get his tongue tied fix. We left the feeding tube at home, but she said she would get us what she can. She got us formula and a needle-less syringe but she didn’t know what feeding tube we would need. I told her it was a tiny thin tube that attaches to the end of the syringe that I would then lay next to my breast so he can suckle but still get some food. She told me to ask the nurse once we’re settled.

After like an hour (there was only one checkin person) we started processing our own check in. This took a while since they just got a new system and she was still learning it. No worries; we both work in the tech world and knows this happens often.

Once we were done, turns out, we were on the forth floor again. By this point, it’s like 9PM and I’m exhausted. I have a two day old son and I needed rest and time to feed him. We get to room 401 and see Dr. W, who I believe is a resident. He was really nice, but some of his questions were just the start of a very long 36 hours.

He started asking the usual doctor questions but then he asked about the birth. I told him we had Xander at the birthing center and Dr. W ask, like a home birth? I told him similar, but not quite. Then he asked me if it was a c-section or a vaginal birth. I really wanted to ask him to guess since really, a c-section requires a surgery theater. But I said vaginally and let him continue on. I should have known this was just the beginning as he actually asked that question a second time.

After they weighed Xander, Stephen was putting on the diaper (his 3rd one ever) and asked the nurse for help. She told him she had no idea. This should have clued us we were not in the NICU (unclear where) but we were too tired at this point. They then tell us they need to draw blood for the jaundice test and said they needed to take him. I told them no and I would go with them. They tried to do a heel prick, but apparently his blood was flowing too slow (which I told them it would happen as that happened when we got the first jaundice heel stick) so they had to needle him.

I asked them if I could hold him and/or nurse him while they do that as I know it would help with the pain of being stuck. They said no, that he had to stay flat on the table. I know this not to be true, but fine. Fortunately, they were fairly quick about it.

We get back to our room and this is when Dr. WM comes in; he seemed to be Dr. W’s attending. He goes over what jaundice is and what’s going to happen. I honestly don’t remember much as it’s going on 10PM now and I’ve been awake for nearly 24 hours. They tell us one of the causes of jaundice is blood type incompatibility of mine and his, but since they already did the stick once, they will try and do it again later if possible since they need like 3mL of blood for it. Note I had actually asked about a blood type test when they were drawing blood and it said it wasn’t necessary. Then I found out later it was added to the blood work AFTERwards.

This whole time so far, we have Nurse M and Nurse O as our nurses. You can tell Nurse M is a veteran at this while Nurse O was new. While they were nice enough, sometimes, they way they handed Xander, you can tell they don’t seem to do it much. While he was laying in the incubator, they were testing the light and it was not high enough. So they decided to move the bed higher by adding towels underneath him. This would be fine, except at times, it lookalike they were not paying attention to him directly and it looked like he was gonna get rolled off the bed! They stopped just in times so he didn’t, but it didn’t look safe for him at all the way they were moving around him.

So this starts our first few hours at Dell’s. Nurse M tells us they will give breast feeding moms a free meal and then showed Stephen where the snack room was. That’s what we thought they meant by food for me (found out later there was actual food we could have ordered and we didn’t have to live off cereal and Powerade).

She also comes in with a stack of papers and asked me if I was Vinnie Carter. We’ve been here for HOURS at this point, and I was very confused why she was asking. Turns out, there were papers left out from our birthing center and they didn’t know who they went with at first but know they know and she’ll add it to his file. I’m pretty sure this is a HIPPA violation as who knows where those papers were sitting until she made the connection (my legal name being Vinh-Nghi Carter but my nickname is Vinnie). She then set the papers asides to help Nurse O with something, then proceeded to leave the stack in our room. Never asked about them.

I don’t know when, but later, I asked about a feeding tube for Xander. We had been with a lactating consultant and due to his tongue and lip tie, feeding is hard for him to latch, boob or bottle. So the feeding tube is placed next to my breast and with the nipple simulating his mouth, we would slowly have him drink the formula. Again, the nurse didn’t know what I was talking about.

I didn’t push it because from everything they were telling us, we would be out of there by mid/late morning. I knew he wasn’t able to eat well, but we had him out for 30 minutes every 2 hours (the max they said they wanted him out) so we thought he would be fine until we got home.

Next morning, there is the shift change and we get Nurse B1. She was really sweet but still didn’t know what I was talking about regarding the feeding tube but she said she’d call around. Comes back later, they don’t have anything like that.

Next comes in Dr. P – I believe a 1st year student. Asked me some of the same questions as before and checks him out. I asked HER about the tube and she has no idea what I’m talking about. By this point, I’m getting frustrated as he hasn’t had a wet diaper in the 12 hours we’ve been there. But they kept letting us think it won’t be too much longer as most don’t say long, so again, I didn’t push.

Then comes Dr. S; he’s really soft spoken and asked about Xander’s shots. I told him we were currently doing our wellness check at the birthing center as we haven’t had time to set up anything with a pediatric doctor, since he’s only two days old. We’ve done some meet and greets but since he’s two weeks early, we’re trying to figure things out. He starts asking about HepB shot and how that should have been given at birth. I told him again, we haven’t had time to really pay attention, but we do plan on getting him to a pediatric soon, once we get everything figured out. Priority was getting him to the pediatric dentist so he can get his tongue/lip tie fixed so he can eat! So the sooner we got the jaundice fixed, the better as we had an appointment the next morning for the dentist already.

He seemed so focused on the fact we hadn’t given Xander his vaccine – I was like, we do plan on it, but right now, we have priorities. He doesn’t NEED it right now like he needs the tongue/lip tie issue and now the jaundice. That’s what we’re focusing on. He left but I think he started making assumptions about us right there.

I don’t remember the order of everything else, but I do know his numbers were not moving down as quickly as they want.

Somewhere in all this, Dr. F came in with the slew of residents and we went over all this again. I told everyone who came in, it’s because he’s not able to eat! If he could eat, he would pee out everything they want and help bring that number down. All I needed was a feeding tube. They told me they can get me a bottle. I told them he can’t take a bottle any better! That’s not what he needs. But I guess all they hear is I WON’T give him a bottle, which is definitely different.

Dr. F talked to us in the most condescending way and I KNEW it was because we were in a birthing center for him. Later, we believe part of this thought was, there was nothing in our files about his birth and that’s because it was left in our room and made it look like we had no records. Or maybe she just doesn’t like birthing centers, I do not know. But I work in customer service and I trained quite a few classes; I can tell she was not listening to a word I was saying and just pretending to hear my words.

She did checked his mouth out and says she does see he is tongued tied but it shouldn’t effect his eating. I keep telling her it does but apparently, she knew better then I did. I also wanted to take Xander out of her arms at once point as it seemed like she didn’t think that he was a real baby; I was worried the way she handled him.

Again, no one here knew what I was talking about regarding the feeding tube and his numbers were still high. I then asked if I could just take him to his pediatric dentist appointment to get his tongue tied fix and then come back. It’s just because he hasn’t had a good meal! His stomach is growing faster then he’s able to drink. Again, I was heard but not listened to.

So this goes on, back and forth. I’m frustrated as no one seems to know what I’m talking about. Then the billing lady comes in and tells us it’s $14,000 so far; at our shock expression, she tells us we’re only responsible for a portion of it. I asked for an itemized receipt and she said there isn’t one yet since he hasn’t been discharged. My brain is exhausted by this point but thinking back, how can they charge us if there is a list of what’s being charged??

I sent my husband to deal with her, but I’m sure he wasn’t in better condition then me by this point. But because they were asking for money, we assumed that meant we would be leaving soon and we didn’t care much besides trying to get home.

Again, Dr. F and P comes back in and talk to us. Again, F seems to be talking at us and not to us. P mentioned a lactation consultant will be coming in but after the sticker shock already for our stay, we tell them we were just with one the previous day and don’t need another one. I was afraid they would charge us even more for someone to come by and just repeat what we already knew and talked about. We had a plan in place; we just needed help executing it. And again, F looked down her nose at us as it looked like we were trying to be difficult or something. But really, no one would explain the WHY anything was being done and when we try to have a conversation, it seemed one sided! We just wanted to deal with the jaundice so we can get other things taken care of for him.

P tells us he’s trending down at least so hopefully we will be gone before she comes back for her morning rounds. She will get he discharge papers ready for us so we can get out of there quicker.

Turns out we were wrong. His numbers still has not gone down and we need to stay another night. We’re worried about the bill but really, we’re worried he’s starving. It’s now been over 24 hours since his last wet diaper so we know he’s not getting enough food at all. This is also when we learned we were in the oncology ward so that’s why no one needs to know anything about babies (like letting Stephen put the diaper on the baby backwards).

So this is when Stephen decides to drive home to Georgetown to get the one we had already. While he was gone, I tried feeding him with just the syringe, but he has trouble swallowing so it takes nearly an hour to get him 5mL of formula. I know I was only suppose to keep him out for 30 minutes but I was desperate.

While Stephen was gone, I was sitting there in tears as I’m so frustrated by this whole ordeal and that no one seemed to care our son was starving under their care. Nurse B2 comes in at this point and as I talked to her about all this, she asked “Like an NG tube? like one that goes in the nose?” and I’m like YES! I didn’t remember the name of it, but it is a feeding tube except we won’t put it in his nose. I just needed the tube! Not even 3 minutes after she leaves, she brings back everything I have been asking for the last 24 hours. I’m crying in earnest now as some one finally listened.

Once we got the tube, formula and syringes, we were able to feed him. He had 20mL the first feeding and was just eating faster then he can swallow. With the tube next to my breast, the nipple is able to simulate him and go far enough in his mouth to get other parts working enough for him to swallow better then just putting formula in is mouth via a bottle. Also, this way we can control how much he’s eating so he doesn’t just choke on it.

Dr. P came in at the beginning of her shift and we showed her what we were talking about. She looked like she had no idea what the feeding tube does but she showed her and hopefully this helps her learn from this ordeal.

He had a wet diaper within hours of finally getting fed and within 6 hours, his numbers were better already and we were told we were going home. The nurses (Nurse B1 and Nurse B2) were celebrating with us and we told them we just wanted to get out as soon as possible and thank you for finally listening to us.

Dr. F and P comes back in ( I think the rest of the students too, but I was too mad to turn around). At this point, I’m beyond my feelings and want to give them the silent treatment. But F try to make it sound like it was because he was under the light longer so she’s glad his numbers are better and I just lost it. I told her it was because she wasn’t listening nor anyone else was that he was starving and that’s why his numbers took so long to come down. He was just able to eat enough to still be alive and that her staff needs to listen. She makes some condescending sounds like she’s listening and tells us she will talk to her staff and I’m like, it’s also you!

Again, she’s not listening and moves onto the next topic: She tells us before we leave, there is one more test she wants to run. I told her can we do it later with a pediatric doctor as his heel is all messed up already and I don’t want him stuck again. Every heel test was multiple pokes as his flow was slow; and I told them it would be but they tried anyways. So I didn’t want anything else done to him. She says it’s just a drop and it would be quick; should be fine with a heel prick.

So I tell her, okay, fine. But if they need to stick him because he’s not able to do another heel prick, to also run the blood type test Dr. WM had asked for (after the first draw). That way we can just get it all done with at once.

The new nurses come in (one was Nurse W but I forgot the other) to draw his blood. I’m still holding him and feeding him while they do this so I know the first nurses were lying when they said I could not hold him for the draw the day before. Anyways, he takes this as a champ and they draw some blood. I get my blood drawn every 6-8 weeks so I know once you’re done with the draw, you can release the arm tie and get some more blood. She tells me it’s not the same for babies so I let it be. But low and behold, they took what they can, though they’re afraid it was not enough for both tests and when they took out the butterfly needle and took off the arm band, his hand bleeps freely. She looks at me but I say nothing. I just hope she learn it’s possible now even for babies for that trick to work since that tells me they could have gotten enough but whatever, we were done and hopefully go home soon.

The second Nurse W brought in the papers for us to sign, we were out of there. We were packed and out the door right after her.

We get home and later that night, kinda late, we get a call from Dr. S. I’m sure he got the short stick and had to call us as he tells us it was not enough blood drawn for EITHER test, though the P6PD test was only suppose to be a drop of blood. I’m not sure why it was not enough, but I was short with him as that means they stuck him for NO reason even after I told them I was tied of him being bleed.

This whole ordeal from beginning to end was a mess. This was the whole reason we wanted to go to the birthing center in the first place. Our medical system is not so patient focused but money focused it seems; how many tests they can run, how long they can keep us (especially if we have good insurance), how little they can talk at us but pretend they are talking to us.

No one understood it was a catch-22 situation we were in: he wasn’t able to clear out the bilirubin because he wasn’t eating enough to produce wet/dirty diapers but he couldn’t eat enough to do that because he was tongue/lip tied and wasn’t able to eat efficiently. I mean, he’s two days old and still trying to figure out how everything works!

The fact I had asked 5 doctors and 6 nurses before anyone actually listened and got me what I needed for my starving son is ridicules. The fact they didn’t tell us where we were so we better understood WHY they didn’t know anything about infant care is irresponsible as they knew we were new first time parents. The fact they didn’t tell us how WE could get food so essentially they starved us too (thought we did live on the snacks they provided). The fact they didn’t respect my wishes when I said I didn’t want him to be stuck anymore but instead convinced me for ONE MORE TEST. The fact my son nearly starved for over 24 hours and no one seemed to really care WHY it was happening and HOW they can help is beyond belief.

I hope to never have to stay in the hospital again but if we ever did, I have no desire to go back to Dell’s Children because no one listened and put our son in danger when they in fact are suppose to be helping. We hope you get this all figured out and are willing to help so another family would not need to suffer like we did. He was only 4 days old by the time we left, under 96 hours old, and he spent 40 hours of his new life, in an incubator, not being held, not able to feel the love around him and starving because no one was listening, and that breaks my heart.