"My Story..." Monday: Going to Chicago Instead of Home

C's first eye surgery didn't do the trick. I received a call a week later that her blood vessels were going haywire in there and Dr. Neely said that he'd like to go and do a "filler" laser surgery to zap all the ones he could see. Her first surgery had been a relatively quick and simple affair, so we agreed and he said he'd do the surgery the next morning, Wednesday, at 8 am. My husband juggled work yet again, and we showed up at the hospital at about 7:30 in the morning.

I had spoken to Dr. Neely several times on the phone by now, but this was the first time I met him. I talked to him briefly before the surgery and he said he'd come out to the waiting room to talk to us when he was through.

We waited in the family lounge with our son, keeping him occupied with little books and toys. One of the saddest things for me to watch during our hospital stay actually had nothing to do with the NICU babies... it involved the siblings. So many parents would drag their older children into the family lounge and expect them to just sit there quietly and wait without one single thing to play with or look at. Many a time, children far older than our one-year-old would wander over to check out his playthings simply because they were so bored and no one was even talking to them. When my husband would read to A, he would soon have a whole gathering of children around him, eager to hear to a story. He didn't mind, of course, but it was sad that their parents didn't think to do more for them. This is a hard time for the sibilngs too...

Anyway, I digress. C. had her second surgery and Dr. Neely felt it had been a success. There was only one problem... she had gone into respiratory distress. The anesthesia they gave her, Versed, seemed to just shut her down. She would forget to breathe on her own. They had to put her back on the C-PAP so that the pressure from the mask would "remind" her to draw regular breaths. Our hearts sank. You wait SO long for you child to move off of breathing equipment that to back-slide is simply devastating. They also had to put a heat-lamp over her to help her regulate her temperature. Even though the doctors and nurses assured us that she would be back to her usual self once the Versed wore off, it was terrible to watch. We kept thinking, "Isn't there something they could give her? Some way to reverse the effects?"

But we just had to wait.

Not surprisingly, the medical staff was right and, by that evening, C. was happily breathing with only the nasal cannula again and she was regulating her own temperature without issue. She was back to her usual self and we were delighted, still anticipating a release date just around the corner. Our world was bright and we were optimistic. We started talking to the nurses about what tests she would need before she went home. It was getting exciting!

But the next Tuesday, my phone rang again. I was in the playroom of the Ronald McDonald house with my son. It was Dr. Neely. This is what he said,

"Mrs. S., I just checked C's eyes. I'm very concerned about the progression of her ROP and I can see signs that the retina is starting to detach. If that continues without correction, she'll lose her sight. I feel strongly that she needs to be seen by a retinal surgeon who specializes in premature infants. There are three of them in the country- one in California, one in Detroit, and one in Chicago. I've spoken to Dr. Shapiro in Chicago and he'll be around so that's where we want to transport her."

Believe it or not, my phone lost service at that exact moment. I scrambled to another section of the building with my son in tow to call him back.

"When?" I asked.

His answer suprised me:

"Either tonight or tomorrow."

I got off the phone and called my husband. He had just started a new job. The day before. He told me he'd do his best to get a few days off. As I filled him in, another call came through on my phone. It was Dr. Lemons, the head of neonatology.

Dr. Lemons called to help me secure lodging for while we were in Chicago. He gave me a couple of options and volunteered to make the necessary phone calls. It may seem like a little thing, but I'm not sure most department heads take the time to do that for a family. I was so grateful for his help.

My husband called back to say he had managed to take the next three days off, despite only having been at the job for two days. That was a huge relief.

Next, we had to find care for our son. We couldn't schlep him into the heart of Chicago with us. We didn't know where we'd be staying yet and we didn't know the layout or rules of the hospital there. My husband called one of his sisters and she agreed to watch A. We arranged to drop him off that night.

As we scrambled to pack his stuff, our stuff, and make arrangements, my phone rang yet again. It was a nurse from our current NICU. She told me this:

"Mrs. S., I 'm very sorry, but because- technically- C. is being discharged to go to Chicago, she is no longer considered a patient and, as a result, we can't keep any of her things here for you. Including the breast milk."

The breast milk. All 200+ bottles of it. Eight ounce bottles. What would we DO???

I sputtered, I stammered, I darn near begged her to help somehow. We had a tiny mini-fridge in our room. That's it! We couldn't fit more than six bottles in it. She said there was nothing she could do. Hubby called his sister. She thought they could store some of it. Maybe. I was desperate. I ran to the Ronald McDonald House main desk and told them our issue between tears. The volunteer at the desk said he'd see what they could do.

This all probably happened within twenty minutes and then my phone rang yet again. This time it was another, more seasoned nurse, who apologized up and down and said there was NO reason that we had to unload all that milk. They would store it. We could get it when she was released after our return to Indiana. Phew. I hung up, filled with relief but also frustrated that we had been so overwhelmed for no reason. As I put my phone down, the on-duty manager at the Ronald McDonald House knocked on my door. She offered me the use of their deep freezer, an industrial-sized freezer kept under lock and key. I was so touched by their willingness to try to help us at a moment's notice. Fortunately, as it turns out, we didn't have to transport all that milk.

We loaded the car and headed out to drop our son off at his aunt's house. It was very late by the time we got back to the Ronald McDonald House for the night. Before turning in, we decided to visit our little girl and wish her sweet dreams. We headed to our room and tried to get some sleep. We knew we'd be rising bright and early to follow our daughter's ambulance to Chicago.

We had no idea what was in store for us. But we knew it had to be done. More on that next week...

JL's P.S. Fest: 12/6/08

p.s. These Candy-Cane Cookies shared at A Simple Walk sound yummy and festive!

p.p.s. Amy's latest baby blanket that she knit up looks so cozy... I really need to get better at knitting!

p.p.p.s. This post on Simplifying Christmas over at Life As MOM was a great reminder to enjoy the season... without being preachy.

p.p.p.p.s. Happy 3rd Blogiversary (a day late) to Angie at Baby Cheapskate... hers was the first blog I EVER read! Excellent material over there... make sure you stop by with well-wishes for her!

p.p.p.p.p.s. Here's another great post on the beauty and simplicity of the Christmas season at Amy's Finer Things... great ideas!

p.p.p.p.p.p.s. I think the whole concept behind Style Klutz is brilliant! I really enjoyed her tips for walking in high heels this week!

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Happy St. Nicholas Day! Did you get any treats in your shoes this morning?

Blessed with Hand-Me-Downs

I don't know about you but, to me, hand-me-downs are one of life's great blessings. My husband and I are each the youngest of three children and we have ten nieces and nephews. Since my son was a newborn, I have received boxes full of beautiful, classic clothes to use thanks to my sister who has two boys of her own (and taste very similar to mine!). My brother has girls, so when C. arrived, I had a new source. My siblings and siblings-in-law will tell you-- there is very little I will turn down. Similarly, as we've had essentially back-to-back pregnancies, my sisters-in-law and I have passed a box of maternity clothes between us, each adding more as she goes.

I adore hand-me-downs. I can't imagine how much I've saved.

If you have a preemie, especially a very tiny preemie, you usually end up with a fairly large collection of preemie-sized baby clothes. These are garments designed for babies under 5 lb and, while I'm sure they all look super tiny to most people, there's actually a huge variance in how preemie sizes run. So, within your collection, you probably have a spectrum of sizes.

The thing about preemie clothes is this... hopefully, your siblings, friends, and neighbors won't need them. You can pass on those 0-3 month sleepers and feel confident they'll fit for at least a couple of weeks (!), but preemie clothes? Even small-ish newborns find newborn size clothes a better fit.

If you don't know anyone personally who has a preemie, I encourage you to talk to your local children's hospital. Whatever hospital has the highest level NICU in it. (FYI, this is often a teaching hospital.) Many of these hospitals are happy to accept used preemie clothes. And, in reality, my preemie clothes would be the only size that was completely "new to me". So they're in excellent shape. For all sorts of reasons, there are lots of NICU preemies who don't have families supplying them with clothing. The nurses are happy to have a collection on hand to use for these babies. Clothing, like blankets, can be washed and re-used. It happens, even in hospitals, all the time.

Most clothing drive campaigns for preemies request new garments. And that's wonderful. But if you're looking to contribute, and what you have to offer is gently used, contact your hospital... odds are good your generosity will be much appreciated and you won't have to shell out extra cash to make a difference.

For more frugal ideas, visit Crystal's Frugal Friday!

Three Things to Know About Emergency C-Sections

One thing I've noticed more since having a c-section is, not only how many other women have them, but just how many of them are classified as "emergency c-sections". I was reminded of this just last week as I spoke with a friend and she kind of laughed and said, "although, I don't really think my c-section was truly an emergency..." I thought more about that and realized that, realistically, all unplanned c-sections seem to get labeled as emergencies. Here are three different scenarios, all of which get the same label: emergency c-section.

1. A woman has been in labor too long or has pushed for too long and the doctor decides that it is time to deliver the baby by c-section. There is not necessarily anything "wrong" in this situation. It's just safer after a period of time to deliver surgically. In these cases, they usually get everything prepped and can wait a bit for the anesthesiologist.
2. It is determined that it is unsafe for the baby to be delivered vaginally but the woman is not in any sort of hard labor. Usually there is some risk to the health of the baby and/or mother in these situations. It is imperative that the c-section be performed. Nonetheless, in these cases it is not uncommon for the medical team to wait for the arrival of a spouse or family member. Time is a factor, but it's not a life or death situation to postpone the c-section for a half-hour or so.
   
3. Things go horribly wrong and the baby has to be removed NOW otherwise risking severe injury or death to mother or baby. In these cases, there is no wait for the anesthesiologist; these are the cases that cause "typical" laboring mothers to have to wait for their epidurals. They are high priority. Prep often happens in transit to the OR and the doctors wait for no one. These c-sections happen at breakneck speed.
   

I outline these differences not to "rank" how bad one's experience is versus another. Quite frankly, I *hate* birth story competitions. I just think it's important to know what a wide array of situations the term "emergency c-section" can encompass. I know when I hear that term I tend to think that something went suddenly and devastatingly wrong. Happily, that is not always the case.

Early Intervention

This morning I will meet with our First Steps coordinator for the last time. We have a "case closing meeting" and it's a great milestone!

First Steps is the name of our Early Intervention program here in Indiana. Different states use different names ("Birth to Three" seems to be common), but it's all the same idea. It is a program designed to ensure that children between the ages of 0 and 3 receive any therapy interventions they may need to help them succeed and reach their highest potential.

My little C. turns 3 on Christmas Eve and, as a result, she will be receiving her therapies (speech and occupational therapy) through the school system from here on out. I've already met her new therapists and they're lovely. I'm excited about this next step. But I'll be forever grateful to First Steps.

Early Intervention worked for us in so many ways.

First of all, it was so helpful to have a team of experts come out and evaluate our child and let us know how she was doing. So much more relevant than trying to compare her to charts in those "What to Expect..." books. We were given a summary that broke everything down so we could see very specific skills that would be emerging soon and areas where she could use a little help.

Secondly, once a plan was in place, our therapists came to our home. Since I had given birth to two babies in less than a year, this was a huge help to me. I didn't have to schlep two babies, an oxygen tank, an apnea monitor, and feeding gear all over the place.

Thirdly, because we were already involved with First Steps, our transition into the school system was simple. All of C's paperwork and history was forwarded on, saving us a lot of extra work. Her new therapists have comprehensive reports about her abilities and progress to help them structure a plan that will help her continue to develop and succeed.

I want to encourage other moms of little ones (preemie or not) to educate yourselves about your state's program. Know that you can contact them if you have any concerns. Some things that worried me (like my son not walking until he was 15 months old) turned out to be nothing needing intervention. Some things I may have just written off as an annoyance (my daughter's persistent tongue thrust when we tried to feed her solids) ended up being resolved after a few sessions with an OT. It never hurts to ask.

Here are just a few more reminders to help make the road as smooth as possible:

• Keep your contacts straight- The first person you'll need to get in touch with will have a title like "Intake Coordinator". Then you'll be assigned a "Service Plan Coordinator". There will be an evaluation team. There will be therapists. Make sure you know who you should call with questions.
• Know your rights- I want to be very clear here. I am NOT advocating that you be a demanding, bossy, law-quoting parent. I, personally, do not think that's the greatest way to go about things. But read your packet of information. And don't be afraid to speak up. I made it very clear, in a very polite way, that I wasn't interested in my child working with a "developmental therapist" in place of an occupational therapist (Dev Ther are more plentiful and cheaper to hire in our area). Our First Steps team was very receptive to my reasons and helped me secure an OT within a few weeks.
• Be there when you say you will- Keep your appointments. With the Early Intervention staff and with the therapists. If you can't be there, be sure and call just as soon as you can. This is just common courtesy.
• Try to be your therapists' "partner"- Early Intervention therapists can just as easily meet with your child in a daycare setting as at your home. But if you can be there, that's fabulous. Pay attention. Ask questions. See if your therapist has recommendations for games, activities, or toys that will help expand the skill-set he or she is currently working on.
• And, finally, don't forget these important people at the holidays- I'm not saying you have to buy an expensive gift. You could make an ornament with your child. Bake some yummy cookies. Buy some pretty soaps. Whatever. But, honestly, my kids see their therapists more often than their local aunts, uncles, and cousins. They're a big part of their lives! My son still gets excited when he sees the penguin ornament on our tree given to him by one of our therapists. It's a really meaningful relationship for them. Honor that.

I learned about it after our little girl was born four months early. But, for all children, I would say knowing about Early Intervention Works for Me!

The Kitchen Slack-off Plan

Okay, so I'm actually really embarrassed and pretty reluctant to write this post. But I'm going to write it anyway. Because right now, at this exact point in my journey, this is the advice I have to offer...

When push comes to shove and the thought of cooking brings tears and nausea, just slack off. I have an abundance of chicken breasts, ground turkey, sausage links, and all manner of veggies in my freezer right now. I can barely stand to look at them, let alone come up with a meal plan for preparing them. I'm in the first trimester of a pregnancy and, while I am blessed and thrilled and overall doing great, I am also tired and nauseous. No big surprise.

And so, when my husband got paid and my monthly grocery money rolled in, what did I do? I'll tell you...

I went through my coupons and pulled out all the ones for frozen meals and Hamburger Helper. For chicken patties and ready-to-bake pizzas. For soups and "rice and sauce"-type side dishes. And I hit the store.

As I rolled my cart through the check-out lane, my cheeks flamed a bit. I don't usually shop this way. I can usually take pride in my array of fresh produce, lean meats, and my giant bags of flour because I bake all my own breads. I sometimes glance at others' carts and wonder how they can pay so much for convenience...

But you know what? The teenage cashier didn't bat a lash. And I think my husband was kind of excited to see some of the types of things we used to eat in college. And, as I served my children Lender's bagels spread with peanut butter instead of Mommy's homemade this morning, they didn't notice.

But everyone's happier when Mommy's happy. Slacker or not.

For more tips, check out Kitchen Tip Tuesday!

"My Story..." Monday: Those Two Words

As February came to a close, it marked two months of NICU stay for C. And two months of living in one room at the Ronald McDonald House for the rest of us. Still, our spirits were good. C. seemed to be getting bigger and stronger with each day. She was closing in on 3 lb... finally. She was receiving oxygen through only a nasal cannula and she had made the move to a "big girl bed"... a crib. This was a huge, welcome step! It's nice to be able to just pick up your baby rather than have her "trapped" inside the isolette. She had also just started receiving one or two feedings a day through a bottle instead of just through an NG-tube. Things were moving right along.

Part of the usual Tuesday afternoon routine in the NICU was for the ophthalmologist and his assistant to come through and check the babies' eyes. They were looking for signs of Retinopathy of Prematurity, or "ROP". In a nutshell (and I'm really over-simplifying here), ROP causes the tiny blood vessels in the eye to grow rapidly in a haywire fashion. This can cause problems with the retina and, in the most severe cases, causes the retina to start to detach which will ultimately lead to blindness. Treatment for ROP depends largely on the severity of how it presents. In minor cases, they often leave the babies alone because it seems to correct itself. In moderate to moderately severe cases, they go in and do laser surgery to "zap" some of those random blood vessels and hopefully halt the growth. In the most severe instances, the baby needs to have retinal surgery.

Getting checked for ROP was nothing new on our agenda. So far, things had looked pretty good with C's eyes. That particular Tuesday evening, however, I received a call from the eye doctor. He recommended that C. have a round of laser eye surgery because he didn't like the pattern of vessels that was developing. His partner would perform the surgery the very next morning.

We still weren't overly concerned. Maybe that seems odd but the only way I can explain it is this-- it's all relative. With everything our daughter had been through, this was a pretty minor procedure. And we knew another family whose little girl had had the same surgery.

The surgery itself took less than a half-hour. My husband stayed in the waiting room with our son and I went back to see her after she was back in her module.

I spoke to the ophthalmologist who had performed the surgery; she seemed pleased with how it went and said they would continue to monitor any signs of ROP in their weekly checks.

As she was leaving, the neonatologist in charge of C's care at the time stopped by. At our hospital, the neonatologists rotated which babies they treated every two weeks. This is a little disconcerting at first since it seems like you just about get used to someone and then they're gone. But, over time, you start to realize something-- each doctor has his or her own forte, their own ideas, their own solutions. By changing doctors, you give your child the best opportunity to get that "perfect" fit, that ideal solution at just the right time. Like when Dr. Winchester suggested the steroids to get C. off the vent. It's like getting a "second opinion" over and over without having to go anywhere. I believe it's a wise system.

Anyhow, our neonatologist at the time was a man named Dr. Trautman. There are two reasons I'll never forget him. The first is that he is the one who got us in with our current pediatrician who I love beyond belief. Dr. Trautman did the research in our area (two hours from his own) to find a superior doctor and got us in, though he most certainly was not accepting new patients. I am so thankful for that.

The second reason I will always remember him is this...

As he ran through C's chart with me and talked about how she was doing, he suddenly said,

"I think it's about time we start talking about those two little words."

I know I met his gaze with a blank stare. I had no clue where he was going with this.

He smiled and said,

"Going home."

The impact of those two words is too much for me to describe. For a brief moment, I thought he was teasing me. I quickly realized that no one with a heart could be that cruel to a NICU parent.

When your baby first settles in at NICU, they tell you that your first target release date is your baby's due date. If you make it out by then, well, you can consider yourself lucky. C's original due date had been April 15th so this seemed amazingly early. We chatted for a few more minutes and Dr. Trautman said he thought we, along with the director of neonatology, should start working on a two week timeline to go home. I rushed back to the waiting room to share this amazing news with my husband.

We did indeed meet with the director and he confirmed Dr. Trautman's opinion that two weeks was reasonable. We prepared to bring our daughter home mid-March.

Another call from the ophthalmologist changed all that. I'll tell you about that next week...