Must Haves For Baby: Basics

A couple weeks ago a girlfriend emailed to ask about must-have baby registry items. It got me thinking about what you REALLY need with a new baby and what things you can totally do without. Babies R Us has a list of "250 items... that you truly need" on their website; not only is their list overwhelming but there are many things you can definitely pass on. I am a research junky so naturally as soon as I found out I was pregnant I went to town studying everything I could find online and in print. I wanted to have a cute, well-supplied nursery without breaking the bank. A girlfriend sent me a copy of the book Baby Bargains which does a great job of explaining items that you may need and their various price points. (I also think that this book makes an awesome congratulations gift for a first time mom!) I also leaned on my sister, mother of two, for a lot of help in deciding what I really needed for baby.

Today we'll start with the basics, and over the next several days I'll post about additional items that will make life easier with your new baby.

Let your friends know that you are open to hand-me-downs and watch the clothes grow!

Bare Basics
If you really want only the essentials for the first week or two you can get away with just the following:

• Diapers/wipes - Lots of people suggest that even if you plan to use cloth diapers it's easier to use disposables those first few weeks when baby poops upwards of 12 times a day! You can also skip the newborn size and go straight to size 1 for most babies.
• A pack of 2-3 onsies
• A couple of receiving blankets or swaddles (I loved the HALO SleepSack Swaddle for the first several months.)
• Nail file or clippers (I was too scared to use the clippers so I filed baby's nails until she was older. Also, don't waste money on those baby mittens. A nurse in the NICU said that they keep babies from sucking on their fingers, which is soothing and will help them sleep.)
• Car seat - Required and should be new! Some hospitals give them to new mothers so make sure you check before purchasing.
• A sample of formula and a few bottles - experts recommend breastfeeding your baby, but if you initially have issues (and many women do!) you might feel less stressed about it knowing you have a temporary back-up plan (with that being said, babies only need a very small amount of colostrum those first couple days since their stomachs can only hold 5-7mLs!)

Tomorrow: If you have a little more time and money these things will make life easier!

In support of Obamacare

Not that my opinion matters at this point in time since it's up to the Supreme Court to decide whether Obamacare will stay or get tossed, but I came across yet another reason to support the Affordable Care Act this morning.

Sonji Wilkes, a mother of three, wrote about her battle with lifetime insurance caps for the Colorado Consumer Health Initiative (which was re-posted at Moms Rising this morning). In summary, her newborn son was diagnosed with hemophilia - a very expensive blood disorder - and her husband's insurance imposed a $1 million lifetime cap on benefits. After only 18 months her son's medical bills already totaled about $750,000. What is a mother supposed to do in a situation like this? Her family considered multiple options - including getting divorced so that her son would qualify for Medicare as a single-mother. Luckily, Obamacare was passed and lifetime limits were done away with. Sonji is grateful that she is able to keep her child safe.

Although always supportive of Obamacare, after the early birth of my daughter I became more so. Similar to  Sonji, our daughter has amassed over half a million dollars in medical bills in the first eight months of life. With a lifelong disorder, she will require medical care and expensive medications for the rest of her life. We've been thankful knowing that she will never be denied coverage due to a pre-exisiting condition or lifetime caps and that she can stay on our plan until she has a job of her own or is 26 years old. These benefits  are important to all families, but especially to those who have sick children.

As I wait (rather impatiently) for the Supreme Court decision I plan to continue posting stories highlighting the benefits of the ACA. If your life has already been impacted positively by Obamacare please feel free to share your story! You can comment below or email me.

Discount on Wetbags

If you need wetbags for your cloth diapers (or for your produce), check out these awesome bags from 529 Baby which are currently on sale!

My large wetbag from 529 Baby - I love it!

(From 529 Baby's FaceBook page):

• 5% off any order. Discount Code: 5off
• Buy 4 produce bags and I will send you an additional XS produce bag free. This free produce bag is smaller than the regular size produce bags. I will automatically include this free produce bag, but you can make a note with your payment, if you like. This can be combined with any other offer.
• Buy any 2 wet bags or pail liners, & get 10% off. Discount Code: 2Bags
• Buy any 3 wet bags or pail liners, & get free shipping. Discount Code: 3Bags

Texts From Hillary

Hitting the internet today:

From Texts From Hillary

I heart Hillary.

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!***

Fairwell Dear Breastpump

We had to buy a freezer to hold all of the milk!

 I have a love/hate relationship with my breastpump that is sadly coming to an end in the next few days. As a firm believer that if you can breastfeed you should breastfeed, I spent my pregnancy imagining the closeness and bonding that would take place between my daughter and I as we snuggled in for midnight feedings. Alas, this was not to be in my case due to Sweet Pea's health conditions.

The night my daughter was born and for several days thereafter I did put her to breast and she fed like a champion newborn. Because she would be spending some time in the NICU (she was born two months early) - and because I got excellent advice from a friend who happens to be a lactation consultant before giving birth - I knew to start pumping immediately and not to stop until my supply was built. I never would have thought that eight months later I'd still be pumping.

The Medela Symphony was there for me like a good friend through the ups and downs of having a sick baby. Sweet Pea was first at Dartmouth-Hitchcock where there was HUGE support for breastfeeding (almost to the point of being annoying, actually) and where there was a "pumping lounge" for the moms. This lounge was the only place I could really flee to without guilt while spending hours with my daughter. Eight times a day I was there pumping like a pro and getting in a quick break from the drama of the hospital. Because it was a lounge concept you would often pump with other moms; this may sound weird - and it was at first - but I ended up meeting two dear friends who supported me throughout my NICU stay and beyond.

During our time at Dartmouth the doctors weren't sure what was going on with Sweet Pea, so in between every bout of infection I would again attempt breastfeeding my daughter. This usually lasted for about five days until she would get sick again (which is such a long story that I'll save it for another time) at which point I would stop, the doctors would cut off her milk, and she would be given IV nutrition until the new infection cleared. By the time we had Sweet Pea transferred to Children's Hospital in Boston I already had a freezer full of stored milk. In the end, my daughter spent 38 days (out of a 90-day NICU stay) not eating anything but IV fluid.

Kangaroo Care the day after she was born

At Children's there were no lactation consultants running around each day to remind you to pump or to help you with breastfeeding. Because it's a sick-baby NICU, not really a preemie NICU it's just not their focus. Here they had two pump rooms that you could use alone (sadly this meant that I never really connected with other moms who had been a great source of support at Dartmouth). I would often time my meals with my pumping so that I wouldn't have to be gone from my daughter's bedside for long. Pretty immediately the doctors at Children's realized that we needed to measure every drop of milk that Sweet Pea received, which meant that I couldn't realistically breastfeed her. (I know, I know... we could have weighed her before and after every feeding but that wasn't something the nurses seemed willing to do.) I was very sad but continued to be hopeful that once we were discharged I could breastfeed her at home.

After 90 days in the NICU it turns out that Sweet Pea just plain forgot how to nurse. I worked and worked and worked on it the week before discharge but it was heartbreaking. At this point she was eating great from a bottle but when put to breast she would kick and scream and I would always end up crying. Once we were home I continued to try for another month or so but it just wasn't worth the stress in the end. (And trust me, I read every book and website on breastfeeding so I tried it all.) Additionally, we needed to fortify her milk to give her extra calories and I still needed to know how much milk she was getting down to the mL each day; feeding from a bottle definitely helps with that.

So here we are almost eight months (tomorrow!) from when my daughter was born and I have weaned down to pumping just twice a day. I'm only getting enough milk for a couple of bottles but I still have about two months worth of milk in the freezer. Although there is nothing fun about pumping, it for so long was the only thing that I could do to help my daughter in a pretty awful situation. Now that I am near the end I am experiencing bittersweet emotions as I'm sure all moms feel when they stop breastfeeding. When I return the pump I will probably shed some tears but am hopeful that after a few days I will instead enjoy the extra time I can spend with my daughter without a machine attached to my chest.

5 Minute Treats

Not pretty but it does the trick

I am a big fan of quick and easy. Especially if it comes in the form of dessert. A few weeks ago I was craving brownies but didn't want to make a whole pan of them for fear that I'd end up eating them all. Instead, I found a recipe for a "brownie-in-a-mug" that looked interesting. I had all the ingredients on hand and decided to give it a shot; the result was exactly what I needed: a warm, chocolaty, personal-sized brownie in less than 10 minutes. It doesn't get easier than this! (I've since made it so many times that I now have the recipe memorized - so much for self-control.)

Now that I am an expert on brownies I've started searching out other "-in-a-mug" recipes. Over at Prudent Baby I found "a cup of coffee cake" and "2-minute French toast."  If you have time and want to get really fancy with your mug-dessert the Boston Globe has a feature on other recipes by author Stacey Miller who has written two cookbooks on the subject. However, if I had enough time to make her desserts I would go ahead and make the real deal.

If you know someone who might enjoy a gift of pre-packaged "-in-a-mug" goodness, there is a PDF online that has recipes and instructions for preparing your pass-along treat. (I think these would be a great idea for a student going off to college or maybe a other with a newborn and no time for treats!)

So now I am thinking, what else can be made in a mug? Leave a comment with your fave recipe!