A Sigh of Relief

Today was a long day. Actually, this morning was a long day. We arrived at the hospital at 7:40 to visit with Grace before her surgery was to take place. About 10 minutes later, the OR nurses began wheeling in a vast amount of equipment, carts, and curtains to block off her "room" to prepare it for surgery. The time moving the stuff in and out and preparing for the surgery more than doubled the actual amount of time that the surgery actually took.

After saying goodbye and telling our little one how much we loved her, two nervous parents went to sit in the waiting room. The anesthesiologist came in first to explain how our two pound daughter would be on morphine and all sorts of other drugs to take care of pain, keep her comfortable, and keep her from moving her tiny little body, including her tiny little ductus and nerves around during the surgery. She left and the surgeon arrived next, to explain to us (again) what the PDA is, why it needs to be closed, and what the procedure would entail. Now, I have to give St. Joe's some credit here. They make absolute certain that we are well informed about what is going to happen with this surgery. In the past three weeks, not including any research we did before or during this whole timespan, we must have had upwards of 20 people explaining the PDA and the surgery. Don't get me wrong, I'm not complaining about being educated. I simply feel that now I could teach just about anyone about a PDA.

Will and I occupied ourselves during Grace's surgery today attempting to make the laptop connect to the internet (it did not oblige) and writing thank-you notes. Before we knew it, the surgeon returned announcing the glorious words, "Everything went well and Grace is doing just fine." Whew, there's that big weight lifted off our chests immediately.

According to Grace's nurse tonight, she is doing excellently. Finally, we have heard something other than, "Most babies do well with this surgery." While this may be useful information when talking about most babies, it really tells you nothing about how your own child will handle it. So, at last, we have an answer for Grace.

Preparing for Grace's PDA Surgery

Tomorrow morning Grace will undergo PDA surgery to close her ductus. As I try to process this, I wrestle with conflicting emotions. The rationale-thinking teacher side of me reasons that this is fairly common surgery for premature babies. Everything Jeni and I have read indicates that this surgery has a high success rate and that children tolerate it well. Our doctor does not seem overly concerned about it. The nurses at St. Joe's don't seem terribly worried either. I've been told by some that this surgery has been likened to a tonsillectomy. Many people I know have undergone a wide array of surgeries and have been just fine. Jeni and I have had surgeries before and we're fine. Ben Sheets and Yovanni Gallardo, along with many members of my beloved Milwaukee Brewers have had surgeries, and return to playing professional baseball in a a matter of weeks. Surgery is just a part of the medical repertoire and is used to make people well.

Rational Will processes this information, looks at Grace's symptoms, notices that Grace is clearly uncomfortable on the breathing tube and thinks, "Thank God we are living in an age where we can do things to help these kids." This surgery could be the best thing to happen to Grace and a step in the right direction in aiding in her respiratory system's development and, ultimately, getting her home.

Surgery deals with anesthesia. Surgery deals with scalpels and cutting. Surgery leaves scars. Surgery is yuck! Over the past 19 days, I've realized that being a parent is not always rationale. Being a parent means constant worry, and for me, this worry centers around two very little people, the combined weight of which is less than 5 pounds, meaning that their combined weight is 1/12th the weight of Maggie our black lab. While I'm no math teacher, we can infer that these girls are teeny tiny!

Grace herself is a mere 2 pounds, 2 ounces. Grace is less than 3 weeks old. I have not held Grace yet. Grace looks fragile. Grace IS fragile. Grace is too small and too young to need surgery. There are possible complications with the surgery. And then the "what ifs" come, and we won't even go there.

So, tomorrow morning, I will go to St. Joe's with Jeni. We will sign the papers that need to be signed. We will visit with Grace. We will say a prayer. We will try to think rationally. We are parents- and admittedly, have challenges keeping sheerly to the logical/rationale side of things, so, chances are, we will worry.

As with anything in life, being in balance is important, and while it is hard to do so, striking a balance between the logical outcomes based on medical statistics and the emotional worry-based fears of being new parents will need to meet in the middle with, chances are, and Lord willing, a worrisome day for Mom and Dad which will result in a step in the right direction for Grace.

Getting Used to Life in the NICU

Nothing can really prepare you for having a baby in the NICU (although the tour before hand was helpful in seeing the size of the tiny babies). As Hope and Grace entered their third week of life this past Friday Mom and Dad are getting increasingly used to the realities of the up-and-down ride that is life in the NICU each day. When visiting the girls there are a host of beeps constantly going off, a revolving line-up of doctors, nurses, lab techs, parents and visitors in and out of the rooms, pushing buttons, writing on charts, and looking intently into the isolettes. Babies too come and go- getting transferred to different rooms as they get bigger and stronger. We have become accustomed to the NICU lingo, and the countless acronyms that get thrown around each day- blood gasses, green residuals, ET tubes, de-sats, PDAs, "tolerating cares," and my personal favorite term, "stooling" have become new vocabulary words added to our ever-growing repertoire of neo-natology knowledge that grows a little bit more with each trip to visit the girls and each conversation with our doctors and nurses. Each visit begins with us picking up the beige phone and asking for admittance. Each visit ends with Jeni and I holding hands walking back to the parking structure, thanking God that we have each other and asking for His grace in helping get our girls home safe.

In the NICU the status of things change quickly, so much so, that updating this blog would be a near full-time job if we were to post on every new development that takes place throughout the day. As we get ready for bed on Sunday evening, Grace has been on and off of feedings twice and has gone on more assisted breathing, but, despite of all this, gained two ounces (she's now 2 pounds 2 oz.), gotten off of her "billi blanket" (which made her look like a glow worm... too bad we didn't get a picture of that) and was the most snuggly person in the world Saturday when Jeni kangarooed her for the second time. The PDA continues to linger for Grace, and, after tomorrow's echocardiogram it looks like Grace may indeed need the surgery. In many ways, Jeni and I have come to peace with that decision and just want things to move forward for her.

Hope, on the other hand, has been the tortoise in this race- slow and steady. She is still on the ET tube, has been on and off of feedings once, has gained five ounces (she's up to 2 pounds 10 oz. now) and loves to be held by her Daddy. Kangarooing with her for the second time on Saturday was the highlight of my week and a truly remarkable experience. I hope Jeni and I never take the gift of being able to hold our daughters for granted, as it is such a special experience for us both.

This week, no doubt, will bring us new vocabulary words and hopefully new progress for the girls. As Jeni put it optimistically, if the girls have until July 7th to go, we are about 10 weeks or so away. While that may seem like an eternity for us, the good news is, at least we're 2 weeks closer to them coming home than we were when this stage of the adventure began just over 2 weeks ago.

Holding Our Girls for the First Time

There are some things in life that you can't describe in words... holding our daughters for the first time and doing "kangaroo care" with them is one of them.

Jeni holds baby Grace for the first time since her birth. 4/23/08

Will holds baby Hope for the first time. 4/23/08

Embarrassing moments and Surgery news (or lack there of)

As a teacher, it drives me a little bit crazy when kids leave stuff behind in the classroom. A sweatshirt here, a shoe there (though I never quite understand when there's only one shoe), books, folders, etc. I must pick up at least 10-15 pencils off the floor on any given day. I feel like I'm forever holding stuff up in the air waiting for the owner to claim it. In reality, it's a bit hypocritical, as I tend to leave a trail behind me. As my wonderful husband can attest, I have a variety of things strewn about the house, often prompting a statement to the effect of, "Are we now keeping the ____________ (shoes, coffee mugs, magazines) in/on the _________________ (kitchen table, desk, etc.)?" Ok, well I don't actually leave my shoes on the kitchen table, but you get the idea. Needless to say, neither he nor I were surprised when a nurse from the antepartum unit brought over a bag of my stuff. Upon inspection, I was horrified to find a bag full of my "unmentionables" that she had packed up for me after my departure from the hospital last week. Swift move, Jeni.

When I was a kid, I always believed that there was a simple cure for all medical issues. You have a headache, take a Tylenol; a stomachache, some Pepto will cure it. As an adult, you begin to realize that there are very few cut and dry issues when dealing with a person's health and well-being. Throughout my entire pregnancy, I had to cope with the unknown factors. I had to constantly explain to people that if I could actually get to the point of being inpatient in the hospital, then I might be there for anywhere from one day to eight weeks. It never really made sense to people, I believe, and how could it really? Between one day and eight weeks? That's a pretty wide span of time. This was a huge gray area for Will and I to work with. Now that our girls are here, the gray areas don't even begin to stop. The echocardiogram from yesterday showed that Hope no longer had an open ductus, but all her symptoms are still there. Apparently the thing can open and close at will and was closed at the time of the echo. But, for now at least, she's saved from the surgery. The doctors and nurses will continue to watch and see what happens with it. Whatever the final outcome may be, I'm very pleased that my baby girl does not need the surgery at this point!

Luckily a bag of underwear was not my only gift at the hospital tonight. Hope is now also off the bili lights just like her sister. Both girls are doing well and no surgery is needed right away. The big event for today is that they began their feedings. Since they are nowhere near being ready for suckling, a tube is stuck down into their tummies and the milk gets shot in from a syringe. These feedings lasted approximately eight seconds, but Mom and Dad were there, camera and all, making a huge deal of the whole thing.

Finally, the most exciting news for the day is that we'll be able to kangaroo with the girls hopefully beginning tomorrow if they're stable. Kangarooing is basically a marathon session of holding an infant skin on skin, lasting anywhere from one to three hours. I cannot believe how excited I am to hold my baby girls again after not being able to except for a few minutes after birth. For Dad, this will be his first time.
It's such an easy thing to take for granted that after your child's birth you will be able to hold them whenever you/they want. For us, it's an incredible blessing.

Tummy Time

Just when we thought our daughters couldn't look any cuter, the nurses rolled them both over onto their tummies today. Hope seemed incredibly content to be on her tummy and have her arms and legs all bundled up. The nurses seemed pleased, too, as she wasn't nearly as squirmy as usual. During our evening visit tonight, Grace graduated from being under the bili lights and was swaddled and looking adorable. Ahh... such small things bring us great joy.

Today also brought good news from the doctor. Both girls gained about 2 ounces, which is two servings of Baked Lays, since birth and are looking good. The doctor is pleased with their progress and if he's pleased, we're pleased. While it still looks like Hope will need a PDA ligation (Grace continues to be a maybe), Will and I have finally come to grips with that fact. This surgery has been likened to an appendectomy and having a tooth pulled, so I suppose it's time to try to relax about it. However, we've learned our first parenting lesson: Things that sound very minor for other people's children are huge when involving your own child(ren).

One week old

Hope and Grace rang in their first week of life in a fairly uneventful fashion (and in many ways this is a good thing). The doctor has opted to give them one more round of medicine to try to get their PDAs to close. So far the fourth dose did not help Hope close her ductus, and Grace is a day behind Hope in these treatments, so we'll wait to see if Grace's fourth dose helps her today. Other than that, the girls now have IV lines in their hands which, when bandaged, makes them look like they're wearing lineman arm pads from my high school football days. Barb, one of the nurses whom we've gotten to know, turned down Grace's phototherapy lights while we were visiting last evening and shaded her isolette so she opened her eyes for us. We hadn't seen her without her phototherapy mask for a few days and it was reassuring to see her beautiful eyes underneath all of her protective gear. The nurses continue to describe both girls as feisty and comment about how we will have our hands full with them when they get older. We only hope and pray that that is the case.

One week in the NICU down means one week closer to the girls coming home with their Mom and Dad.