Lessons from the NICU: Strength

Sweet Pea's first 90 days of life were spent in the NICU at Dartmouth and Boston Children's Hospital. Tomorrow she'll be nine months old and we will celebrate having been home for twice as long as we were in the hospital. Although it's been six months since we left the hospital, it often feels like it was just last week.

I often think about the things that I learned (about myself and about life in general) from spending so much time in the hospital with her. Over the next few Friday's I'll share some of the insights I had from that time.

Glacier National Park - a pic from our honeymoon

I never thought of myself as a particularly strong person. I've survived my share of crap in life, but I've done it with a lot of worrying and crying and lost sleep. However, I became strong - or perhaps just aware that I am strong -while we were in the NICU.

When Sweet Pea was born at 32 weeks gestation I thought we were doing pretty well. The docs were able to stop labor at 28 weeks and I successfully baked her another month (while on bed rest). When she was born on August 5 after 18 hours of scary labor (more on that another time) she was a good size for her age, she had 9s for her Apgar scores, and she came out screaming. I even got to hold her after they got her cleaned up!

Later that night I got to breastfeed her and she seemed to be doing great. Although sleep was interrupted all through that first night because I had to pump, I felt good knowing that Sweet Pea was healthy and had hoped we'd be part of that lucky few who get to take their babies home from the NICU before her due date.

Day 3

The next day we were told that she was slightly jaundice and needed to be kept under the lights. We understood that this was nothing out of the ordinary and actually thought her "sunglasses" were cute; she looked happy under the warm lights in her little incubator. My husband and I got to kangaroo with her off and on over the next few days - although not for very long because we wanted her to get as much photo-therapy as possible so we could take her home. I continued to pump away and would offer her the breast on occasion. On day 5 things started to look bad - this is what I wrote on my personal blog:

We spent the day with Caroline but she wasn't doing so hot. I tried to nurse her but she wasn't at all interested, instead she just fell back to sleep. They continued to feed her my milk but she stopped digesting it and thought perhaps she had a slowed digestive system from the jaundice. We left around 5:30PM and I just had a bad feeling. She was so out of it all day but I am hopeful tomorrow will be better.

Day 5 - under the lights, but we'd been moved out of the critical side of the NICU

Around 9PM that night the NICU called to say that after we left Sweet Pea started to have a lot of As & Bs (apnea and bradys). She had also started throwing up and she was very lethargic. (To this day I don't understand why they didn't call sooner.) We rushed to the hospital:

The doctor's suspected an infection of some sort so they started antibiotics. They took blood and urine for a culture, took x-rays, and did a spinal tap to check for meningitis.  ...She was continuing to stop breathing and her heart kept slowing down, in addition her blood sugar levels were sky high. As we were standing there my nightmare came true. My poor baby would not breathe and turned an awful shade of purple and we were told to leave her area. They tried a C-PAP to get her some air but it didn't help, so they had to intubate her.

The "nightmare" I spoke of was literally a nightmare I had had the night before. I dreamed that Caroline had died in front of me.

Day 6

This was one of the longest nights of my life. Throughout it all I kept telling myself that if I could survive this, I could survive anything - and that mantra came in handy as we experienced similar trauma two more times over the course of Sweet Pea's hospital stay.

Within a week of this event Sweet Pea would be diagnosed with NEC (necrotizing enterocolitis - which, as it turns out, she didn't actually have; instead she would later be diagnosed with a stricture in her sigmoid colon and would require surgery to remove it) and central diabetes insipidus. She would have her first surgery to place a subclavian IV line, her first ultrasound, and her first MRI. We would also experience the DDAVP drug shortage for the first time - we had to wait a day for a diagnostic test because the hospital couldn't get it in.

Things would get worse before they got better, but today we are home with our precious baby girl and she is going great!

She's a reader, just like her Mama!

Got some...

Just wanted to update everyone on our DDAVP issue. I spent Tuesday on the phone trying to get some answers re: the shortage. The FDA website showed that one company had the injectable in stock so I called them (Sanofi) and spoke to 5 different people - but the last person was incredible. She is a pharmacist for the company and explained that they did have DDAVP in stock but that it was brand name, not generic (apparently they are no longer making generic). She suggested calling our mail order place to make sure that they were checking for both products. I also picked her brain about the shortage in general (she said it was not a raw material issue since they are able to make the other versions of DDAVP but she didn't know why they keep running in to shortages) and asked some more specific questions regarding the rhinal tube (on back order because of the tube, not the medicine) and the nose spray (she tried but was unable to pry the lid off the container). All in all, very helpful stuff.

Next I called our mail order company - I now have the direct number to the backorder department - and asked them if they had checked both brand name and generic. What do you think their answer was? Our conversation went like this:

Me: "Do you have the brand name DDAVP in stock?"
Agent: "Let me check...... Yes, we do but it will cost you $40. Are you sure you don't want to wait?"
Me: "If my daughter doesn't get this medicine will have to go to the ER; so yes, I want the medication now."

I wanted to scream. She proceeded to tell me that yes, the prescription is written for either product so in the future they will check for both. Why they didn't check for both on Monday is beyond me.

Because I wanted to make double-sure that the nose spray cannot be broken into, I went to my handy-dandy DI Facebook group (love them) and asked if anyone had done it before. Not one, but two people responded with pictures and descriptions of how they pry the tops off. Fabulous! There has NEVER been a shortage of nose spray so at next week's appointments I hope that we can come up with a plan to switch to that product (which we would give to Sweet Pea orally, thus the need for breaking into the bottle).

As a side note, once I cleared up the generic/brand issue it took exactly 22 hours for me to receive 4 vials of her meds + supplies for giving it. They sent it all overnight... we now have 6 months worth of meds. Hooray!

DDAVP Drug Shortage (Injection and Rhinal Tube)

Once again I am having heart failure over the national drug shortage of Sweet Pea's medication. Last week I called to get her next shipment and it was scheduled to be delivered tomorrow. Today I got a call from the mail order pharmacy (Curascript - the specialty division of Express Scripts) alerting me that the medication - DDAVP 10mL vials - is on back order until May 31. It had been scheduled to arrive in their warehouse on April 27 but was just pushed back.

I inquired about the rhinal tube as that was our back up plan and was told that they do not carry that in their inventory at all. (Our local pharmacies also do not have either product available.)

We see our pedi endo next week and were supposed to put together a new medication plan at that time but what do we do if both forms of DDAVP are unavailable? Currently the rhinal tube isn't even listed on the FDA drug shortage list - which means no one even knows the problem exists!

There is a nose spray and a pill form but babies cannot take either. If we could break open the nose spray bottle we could make that work by giving it to her under her tongue - but I am not sure how feasible that is. A mom I have befriend online is going to try it out and let me know before the appointment.

And to top off the craziness, DDAVP nose spray is now being sold online as a memory enhancing drug!  Why any healthy person would risk seizures (from hyponatremia) to improve their memory is beyond me... it seems very unsafe.

To report a drug shortage to the FDA you can email drugshortages@fda.hhs.gov. You can also ask your pharmacist to report drugs on back order to the ASHP (prof. organization for pharmacists).

I wish I could end with some sort of call to action but I can't. I have no idea how to fix this problem...

Drug Shortages Impact Sick Babies

Way back in January a nurse-friend of mine posted on Facebook that there was a national drug shortage on pediatric cancer drugs. I was shocked. Many discussions took place amongst my family and friends about just how appalling this was. While we were in the NICU we heard about these drug shortages (we had to have a test delayed a day for Sweet Pea because our docs couldn't get the meds they needed) but did not know the full extent of the problem.

DDAVP vial and ampule with filter needle

Fast forward a month and it was now time for us to refill Sweet Pea's DDAVP - which we need in a reusable 10mL vial for nightly injections. We went to the pharmacy and were told that they only had 1mL glass ampules and that they would not be able to get our regular drug because it was no longer being made. WHAT!?! Of course, I freaked. More than freaked, actually. I panicked. Sweet Pea needs this drug in order to stay out of the hospital. She has something called diabetes insipidus which requires her to drink a tremendous amount of fluid each day. Because she is so tiny, she cannot physically drink the amount required for her to stay healthy.  The DDAVP gives her about a 12-hour "break" from drinking; this keeps her sodium in check and allows her to sleep through the night.

As soon as I heard the news I emailed Sweet Pea's pediatric endocrinologist and called her pediatrician to see what they knew about this. To my surprise they knew nothing. (To be fair this is a very rare condition so they can't possibly keep up with everything there is to know.) I then got online and posted in the Got DI? group on Facebook to see if this was something that was impacting other people as well or if it was just in our area. I quickly learned that this has been a problem off and on since 1998. Again, I panicked.

It took two months in the NICU to figure out the correct method and dosing of DDAVP to get my daughter home. Now I was imagining life without this medication and it was frightening - we did not want to end up back in the hospital. Although DDAVP comes in other forms, a pill and a nose spray, these won't work for us because there is just too much medicine in the product. This is why these injectable products are so important to babies - they are all just too small to take other forms of the drugs that they need.

After a three-state search (with no results - every hospital had ampules, but not vials of the med) I finally located a stash of DDAVP through our prescription mail-order company. It's a seldom requested drug so they have a small stockpile. Our problem is solved for the next three months, but then what?

I've been researching injectable drug shortages for the last month or so and have learned that there are several reasons why the shortages are happening:

• some drugs were found to be contaminated with foreign particles
• some raw materials required for certain drugs are unavailable
• production of more popular, and more profitable, drugs ties up the manufacturers

That last one really breaks me heart.

Experts are saying that this problem will get worse before it gets better. In October of 2011, President Obama signed an executive order asking drug companies to alert the FDA when they know there will be a shortage and to encourage the FDA to support companies who want to make a drug that is in short supply. In reality, this order does nothing. You can't force manufacturers produce an unprofitable medication.

So what can be done about this problem? First, you can keep yourself informed on the topic; education leads to positive change. I've started posting links to important drug shortage information on this blog. Bookmark it and come back often. Second, you can tell everyone you know about the crisis. I don't think most Americans are fully aware of the problem. Finally, you can write letters to your legislators (Representatives and Senators) and to the FDA (druginfo@fda.hhs.gov) encouraging them to find a solution.

We hope to go to Washington in July with Sweet Pea to speak directly to our legislators about this problem as part of Family Advocacy Day sponsored by all the children's hospitals across America (in our case Boston Children's). We'll know in a couple weeks if we were selected. Keep your fingers crossed for us!

***UPDATE: There is also a petition on Change.org re: permanently eliminating the shortage of generic drugs. It's written about methotrexate, a drug used to treat a certain form of leukemia, but could be applied to all generic drugs. Please sign it!***