We have also discovered the absolute cutest thing the world has to offer: Daphne speaking Motherese to the dog.

Want me go in bed with you, Ruthie?

Squee!

I’ve discovered these frosted chocolate chip mini bundt cakes at Fairway.  Thankfully, the children ate them all before I could reach them.

By the end of the day on Friday, the answering service at the hospital was doing crazy things for me, like trying to connect to the doctors in real time instead of taking messages. Crazy things they do to get rid of pesky persistent parents. The GI called me in the evening, and upon hearing the whole story, said “You know, at this point, I have to wonder whether there is something else going on. She has been on Prevacid for too long to still be so sensitive. We can barely keep her reflux at bay on such a high dose. I am going to speak with Nephro, but I want to look into her with a camera before we think about supplemental feeding.”

The weekend continued the same way. D ate some, threw up some, refluxed the entire time. We could smell acid in her breath. She woke up a couple of times with vomit in her crib. By Sunday, I emailed GI and Nephro letting them know the state of affairs, and asking if I should make appointments to see them both on Tuesday, when we were supposed to repeat labs.

Nephro emailed me back, saying he and GI had already talked, and he thought we should coordinate a multi-specialist appointment, also including the Dietitian. My thoughts were “that would be amazing, but what are the chances we can accomplish that outpatient?” After much back and forth, we got it done. The appointment was made directly through Nephro’s assistant, and GI, who works in the same office but was completely booked, agreed to pop in so we could have a group discussion.

It was magnificent moment of medical coordination, helped by the fact that D was in a stellar mood and feeling great. She gained back some of the weight she lost last week, staying well within her 21lb plateau. We chatted with Nephro and the Dietitian first, poured over all her chemistry numbers, then GI came in. He wants us to schedule an endoscopy in the next week or two. His gut (Ha!) feeling is that what may be behind the reflux is, in fact, Eosinophilic Esophagitis, a condition that was thought to be very rare, but in reality is more and more common. The symptoms pretty much define Daphne:

• Poor weight gain (failure to thrive)
• Refusal to eat
• Vomiting often occurring with meals
• Heartburn
• Difficulty swallowing (dysphagia)
• Pain or discomfort with swallowing (odynophagia)
• Food becoming lodged within the esophagus (food impaction)

Of course, there is always the risk that the endoscopy will show a completely unremarkable upper GI tract, and her issues fall within the muddy area of poorly understood long-term effects of prematurity. We shall see.

Toward the end of the appointment, the medical students showed up, rushing after a mandatory review session. At that point, we had seven grown-ups in the small room. Count them: me and Z, Nephro, GI, Dietitian and the two med students. D was incredibly happy and charming, so much so that everyone agreed she was doing well enough we could skip labs and go home.

In the meantime, D’s CPSE evaluations are being scheduled. She will have a psychological and educational eval, as well as PT and OT. They have not requested a speech eval. Last week, as she was in the hospital, CPSE contacted me to let me know the district’s Doctor will be involved in D’s case, since her main issue is being medically fragile.

Juggling all the evaluations and the endoscopy are giving me reflux at the moment.

I spent some time with Daphne’s medical records last night, putting together the paperwork to start the evaluation process with CPSE. I was looking for the summary of her NICU care, presented to us at discharge – three pages of single-spaced notes – in case she needed to be readmitted elsewhere. I have a blue plastic binder – a masochistic scrapbook, the furthest thing from a baby book – I picked up at CVS to keep track of the mountain of paperwork that accompanied our little bundle home: hospital records, Medicaid and SSI paperwork, Oxygen supply company information, consent forms for clinical trials, insurance company letters, bills, Early Intervention evaluations and progress reports, etc. Missing: instruction manual on getting her how to eat and grow.

It was late last night and I wanted to get the packet ready before bed, so Z could  deliver to CPSE in the morning. I have seen these documents hundreds of times, of course, but it had been a while since I last had to piece together Daphne’s history. Ordinary pieces of paper can became triggers that bring back to boil fear and despair that had been simmering.

Her birth certificate – number of children delivered: 2. Two babies, one birth certificate. One CPSE evaluation.

Her birth story – delivery after no fetal heart rate detected in Twin A. Infant emerged pale, floppy. Epinephrine administered. Chest compressions followed by intubation.

Her first Apgar score: 1.

Her first milestones: No urine output. Respiratory distress. ROP.

I sat on the daybed in my office and cried, not just because Daphne’s beginning was so hard, but because today is still far from easy. Our narrative veers from the story people like to read, the tiny, sick preemie who defies the odds and catches up with peers. Healthy, strong.

I shoved the papers into an envelope and headed to bed. Daphne was still singing in her crib, a loud, perfectly intelligible falsetto. I tiptoed to her room, ready to go in, scoop her up, kiss her neck, rock her to sleep. She didn’t need it, but I did.  I stood at the other side of her door and heard her yawn, shift, then get quiet. I headed to bed to practice my own self-soothing.

When the Renal Fellow stopped by, she told me D’s morning labs showed improvement, but not back to her baseline numbers.  The attending would decide whether we could go home, but she would suggest that we get discharged if D could keep some solid food down. They’d see her at the Renal Clinic on Tuesday and we’d repeat labs. She told me she’d let the nurse know D could start eating.

Before the nurse came  back to repeat the same message to us, I gave D an oatmeal cookie that Z had left overnight. She ate almost the whole thing. The nurse brought Cheerios and she ate nonstop for 20 minutes. I felt pretty confident that we would be able to leave, but didn’t think it would happen for another few hours.

As luck would have it, yesterday was the day when a pretty major project I have been working on for almost a year was going to press. I had go see it at a printer all the way downtown, and decided to drive down since things were under control. Before I even reached the FDR, I get a text from Z that the attending had come by and ordered discharge papers. The nurse was on her way to disconnect the IV. Fantastic, and also, crap! I had taken D’s car seat. Well prepared, as usual. I called our friend J, D’s former NICU social worker, and asked if she’d meet me at the corner and take the car seat back to Z. Five minutes later, I handed her the car seat and got back on the road. This was at 12:30pm or so.

I ended up having to work until 7pm. All you parents who have a night on a hospital pull-out couch can imagine what I felt and looked like. As guilty as I felt leaving D at the hospital, I knew she was OK and about to go home. I just didn’t expect I’d have to be on my feet for hours after two sleepless nights and hardly any food. When it was finally time to head home, I was seriously concerned about falling asleep at the wheel. I got a bottle of very cold water and took sips along the way. Thankfully traffic was clear and I made it home in half an hour.

D was doing well, had been eating pretty much nonstop since getting home, and was having a bottle. She downed over 10oz of milk (insert ominous sound effect here). She was also exhausted and I put her to bed early so I could get some rest. The moment I got myself into bed and put my head on the pillow…. she threw up. Perfect tragic timing. She was pretty upset, and I brought her into our bed. She cried some more, and threw up again. Without hesitation, I called the on-call nephrologist and she returned my call immediately. By then, D was back to sleep. She said if the vomiting continued, we should head back to the ER. If not, we could wait until morning and give her clear liquids again. She recommended going slow with food for now.

As tired as I was, I still managed to stay up and check on D quite frequently. I rubbed her belly at one point and it was wet…warm… as was our entire bed. Gallons of pee. Good for the kidneys, bad for the bed. I changed her PJs while she complained about being wet. She went back to sleep for what felt like five minutes, then woke up begging for her bottle. We tried to distract her with water, put her back in her crib, but she continued calling for us: “My bottle, Daddy, I need my bottle. I don’t want water, I want my BOTTLE!”

We decided to try our luck and give her a bit of formula. We got lucky. The formula stayed down, the girl went back to sleep, and we settled in for another few minutes until my alarm went off.

I called the nephrologist this morning for an update, and she was pleased that D stopped throwing up and had kept down formula, chicken soup, crackers and ginger ale. She agreed we could wait until Tuesday for more blood work, unless, of course, things change.

I am going into the weekend with a good amount of apprehension. Sleep deprivation and optimism don’t go well together.

I paged the pediatrician three times. She was so tired she slept through her pager. Finally, at almost 6am I reached her and she told me to just head in to the ER. Note to self: when you think D needs to be in the hospital, just take her and let the Dr. know. Lesson learned.

She threw up 2 more times in the car but managed to chit-chat all the way into the City, which was extremely comforting to me. “is dark, Mommy?” “Lucy go doctor too?” We were ushered in fairly quickly at the ER, in typical hospital hurry up and wait. Renal was paged, they asked for labs, urine sample and an IV. It was hours before the nurse started the IV. In the meantime, D threw up some more. A young nurse made the first attempt at a vein, with a more senior nurse’s guidance. After a whole lot of screaming and tears, and not a drop of blood, I kindly suggested the older nurse just do it herself, which she did in 10 seconds. I am all for teaching hospitals but I think one should get one try at doing an IV on a dehydrated, miserable 2-year-old.

After a dose of Zofran and the first round of fluids, she looked much better. The nurse asked if she should just bag her for some urine, since she was sleeping comfortably. I told her absolutely not, we would wait until she was hydrated and I would get her a sample in a cup. The nurses were totally suspicious but let me give it a shot. D peed on that cup like a superstar, as if it were the most natural thing in the world. Maybe she remembered the catheter from her NICU days?

After a few hours, when I asked how much longer we had to keep the IV, the nurse told me they had located a room upstairs for us. Nobody had told me D was going to be admitted yet. The renal Fellow came by and told me labs showed D was dehydrated, so they wanted to keep her overnight for IV fluids. At that point, I had been awake for 13 hours and had no food or water (or coffee, most importantly). In my sad and extensive experience in this hospital, I have learned that “your room is almost ready” means “you are going to wait in triage another few hours.” I was lucky, we waited just two hours after the nurse said all they had to do was place a crib in the room.

Zev arrived just as we settled in the room. Nurses and doctors came and asked all the same questions (what color was her vomit? When was the last time she pooped? Does she have any health problems? Ha! Pull up a chair). Child Life brought a bucket with Mr. Potato Head and its various body parts, which delighted D.

Eventually I was convinced to go home for a hot shower, a 15-minute nap and some time with Lucy. And some coffee. In the meantime, D entertained throngs of visitors: her beloved med students, NICU social worker, nephro (who was not on call but came to say hi), her NICU primary nurse… I headed back in as soon as I felt alert enough to drive. D is now sleeping comfortably in her crib while I try to relax on the small, awkward squeaky plastic lounge chair, where I belong. D has had ginger-ale and chicken broth, and looks positively plump from all the fluids. If her labs tomorrow show improvement, she can go home. Where she belongs.

Our med students accompanied us through the entire marathon visit. I was right about them. Daphne LOVES them. They are incredibly nice to her and helpful to us because they keep her entertained, allowing us to talk to the doctors. I think they are getting a lot out of the program, since Daphne is such a complex little patient. Not many people get such a clinical experience during their first year of medical school. It’s a nice sample of what it’s like to be on the other side of doctor-patient relationship too: If we wait 40 minutes in the waiting room, they do too. If we have to answer the same questions 100 times, they get to sit through it. They told me they have an assignment about insurance and would like to set up a time to ask me some questions about our experience. Oh, how much fun that will be.

So, GI. I had emailed Daphne’s nephro and he copied the GI in his response, so he was up to date on everything that has been going on. Daphne has gained over a pound since last week, which gets her back to her weight of three months ago. Barely. She is farther from the bottom of the curve than three months ago. We all agree – begrudgingly – that it is time to start supplemental feedings. Doesn’t that sound better than feeding tube?

The protocol is to first do an NG tube trial, which is really upsetting to me. The reason behind it is that if the child cannot tolerate the overnight feeds, they won’t put her through the risk of the procedure for the g-tube.  Daphne had an NG tube for months in the NICU, and she got really good at pulling it off, even while wearing mittens. I don’t see how she will keep it in now, but GI assures me that kids barely notice it. They will admit her for a night, place the tube and feed her to see how she does. If all goes well, she goes home with the tube and we start night feedings. The tube they use is meant to stay in for two weeks. Yuck. If that goes well, then they schedule the first g-tube procedure a couple of weeks later.

In Daphne’s case, the tube will be used mainly for night feedings, in order to maximize the calories we can get into her in one day. Eat while you sleep – kind of George Costanza-ish, no? We can also use it for medications if we so wish, and for hydration when she is sick.

I have to note that while we were having this discussion, Daphne found a cup of chocolate pudding in her diaper bag, opened it, and proceeded to happily feed herself with a spoon. She also ate potato chips. Little punk.

We were over a half hour late for the endocrinologist appointment. We literally sprinted through the basement of the hospital to get to another building, while Daphne shouted “I wanna walk, I wanna walk!” Why is it that when you are in a hurry, toddlers want to walk, but when you can leisurely stroll they demand to be carried? One of nature’s big mysteries…

The good news of the day was that the HGH continues to do its job. Daphne shot up in the last three months. She is closer to the height curve, and off the charts in the growth velocity curve. In other words, she is growing considerably faster than average for her age. The endocrinologist says this obviously means that she must have been doing well before getting sick. Silly, but it was nice to have such evidence.

After the shriek fest during our last endo appointment, D was completely charming throughout this visit (first appointment was at 4:30pm, we left the hospital close to 7pm). She distributed smiles, high fives, made small talk, told everyone about her new doggie… Crazy kid. Cute, crazy kid.

Not surprisingly, I had a rough night, full of what-ifs and why-Daphne’s. The next few months will be challenging, but we will get through it because there is no other choice.

Let’s give her a hard time about not starting her CPSE evaluation process early enough, even though that would have meant switching school districts mid-process. Let’s tell her that Daphne will surely regress if there is a gap in services. Let’s tell her, also, that even though the pediatrician who knows Daphne since the day she came home ruled her “cognitively caught up,” we should order up some more evaluations. How about speech? You think there’s no delay there? Well, I see one.

She’s a tough Mama with plenty to feel guilty for.

Love always,

Daphne’s therapist

So I do breathing exercises and try to relax one body part at a time, and try, really try, not to think. Thoughts are scary at 2am (or 3 am, or 4am, or even half an hour before my alarm goes off).

Thoughts:

- I am really scared of the tube but even more scared of life as it is right now, without the tube.

- Will the GI judge me for failing to get her to grow? Do other people judge me as harshly as I do?

- When will she realize that she is the size of many babies two years younger?

- Will she hate the scars all over her torso? How can I teach her that they are symbols of her strength?

- Is Lucy going to be damaged by the focus on her sister’s health? Are we?

- Are we going to be able to keep her healthy enough to even get the tube?

- I wish that we could take her out like a normal kid, without fearing every sick person in the tri-state area.

- I wish I didn’t have to stress so much about feeding her, so we could relax and play, or go places, or…

- I need to be grateful. We are so lucky to have her,  I have no business complaining or being annoyed. Grateful.

Thoughts are ugly and noisy and they keep me up.