When Abigail survived her first 24 hours, her doctors started making plans. Plans for her treatments, plans for her medications, and most importantly to Anthony and me: plans for when she will come home.
No doctor can tell for sure. It is far too early. But they have all said that if they HAD to predict, they would go on averages. The average Micro Preemie that does NOT have any significant setbacks (like surgery for example) will go home approximately two weeks before their original due date. For Abby, that would be right around 3 months from birth. If we play our cards right, she could actually come home ON Anthony’s 25th birthday (Sept. 3rd). And I thought getting engaged for my 25th birthday was the best gift ever. 😉
Well, if all that holds true, then today means we are one-third of the way there. Today, Abby is one month old. (And for those of you keeping track, tomorrow, she will be 29 weeks gestation!)
I can’t believe it! I mean, I know that everyone says this time passes so quickly and before you know it they are 16 and dating, but come on people! I swear to you, I JUST gave birth to her the other day. There is no possible way that a month has passed. A week or two, maybe, but 30 whole days? I cannot explain to you how mind-boggling that is. Nor can I tell you where those 30 days went. I know I spent her first 5 days in the hospital with her. But the other 25? Nope, no clue as to what happened to them. I have spent this time recovering and doing my darndest to get our lives back to “normal” but really… if the rest of the time she is in the NICU is going to pass this quickly, then I know we can do this!
I have been told that the average length of stay for a baby in the NICU is 10 days. Most babies we see are there for minor treatments and observations. At this point, we’ve tripled that! And it seems like no time at all. And it truly JUST dawned on me, as I sit here typing, that this means I have been a Mom for a month already, too. Wow. Just… wow.
Anthony seems to have a better grasp on time than I do. I asked, “Can you believe our little girl is already a month old?” and expected the same “yagada-yagada-yagada” double take I had. But no, he looks at me and says, “Yes, I can.” Oy. The realist is showing his spots again. He then gives me an account of just where those 30 days have gone, noting each with a reminder that we have pictures to prove it.
So I thought that now would be a good time to give you all a true update on Abigail’s progress so far, complete with pictures. Please note, while I find these pictures precious, it is not easy to look at a baby with so many wires and tubes stuck everywhere. But as I’ve become an advocate for letting the world know more about babies like Abby, as well as maintaining the “This-is-MY-blog-and-if-you-don’t-like-it-don’t-read-it” attitude, I feel it is one of the most appropriate places to showcase them. Consider yourself warned.
Abby, at birth, was able to achieve the unachievable. She breathed, on her own, as she was pulled out of my womb. At 24 weeks, such a feat is really unheard of, as her lungs are not yet developed enough to actually breathe automatically. She was, and still is, a fighter. When she was born, she got stuck… because she was so small and not “down” far enough. So Dr. David had to actually grab her by the back of the head to pull her out. At 24 weeks, her skin is so thin and so sensitive that this simple grab bruised her pretty badly. When we say she was born with a black eye, we aren’t kidding. The picture below shows her black eye, and a bruise in the shape of Dr. David’s thumb print below her left ear. Oh – and don’t worry – while it might look like it, her whole head wasn’t bruised… that is mostly her hair with a little blood from, oh you know, being born mixed in.
She started out her breathing treatments on the Ventilator – this machine did most of her breathing for her, automatically. But it was forcing her to breathe too deeply. It resulted in a small tear in her right lung. Which, in turn, made it harder for her to continue breathing on her own. So, she was quickly transferred from the ventilator to the Oscillator. This machine did all of her breathing for her in small short bursts of air straight to the lungs. These bionic breaths “puffed” so quickly and often that it literally made her body vibrate. The Doctors assured us that she was not in any pain or discomfort. In fact, she was more comfortable on the oscillator than the ventilator and it showed in her moods. The oscillator made her happy. She stayed on it for About a week. It did its job well – the tear in her lungs had healed, and she was strong enough to go back on the ventilator.
The black eye mask you see is to protect her from the blue light. The blue light is both a heating lamp and a treatment all in one, to help with the jaundice. The blue light is very helpful, but could severely damage her eyes, so she had to wear the mask in case she opened her eyes while we weren’t looking.
Ok, back to breathing. She did so well on the ventilator that they moved her from that to the “Nasal Canular” also known as a Nasal Therm. The Nasal Therm is a steady flow of oxygen that encourages breathing, but doesn’t do any of the breathing for her. Every breath she takes on this device is her own. She was on the nasal therm for less than 3 days. In the words of Dr. Mah (her neonatalogist), she “flunked” that test. Couldn’t keep up. But the good news is that we only had to take a half a step back, rather than go all the way back to the ventilator. In came the C-Pap. This is a mask that covers most of her face, with a long tube up the front – we thought it made her look like an elephant. This device provided a steady flow of oxygen that keeps her lungs inflated and forces her to take her own breaths. It works as a kind of breathing assistant. She was on this device for just over a week.
After a week of that one, Dr. Mah felt her lungs were strong enough to try the Nasal Therm one more time. This transition was made last Tuesday. As of today, she is still breathing with it – all on her own. Dr. Mah was looking for “progress” which to him meant flunking out in 4 days rather than 3. I don’t think anyone expected her to go more than 5 days, let alone 10 days! So we are super proud of how hard she is working.
In one month’s time, Abby has had two blood transfusions. We hope she won’t need any more, but a pint of her Nana’s A Positive blood is on hand, just in case. During week one, we were worried that she might have needed to be transferred to UCLA Medical Center to have surgery on her heart. Dr. Mah explained that there is an artery that we all have in the womb that closes up and (for lack of a better term) dissolves when we are born. At 24 weeks gestation, this artery was not wanting to close yet. But we needed it to. So, the first step was to give her a special medication that would hopefully close it. If that didn’t work, the second step was surgery. That would have meant a helicopter trip to UCLA Medical center, a surgery on her tiny little body, recovery time very far from home, and then another transfer back to Los Robles. I still stop and thank God every couple of days that the medication worked. Currently, her biggest problems are her low red blood cell counts (hence the 2 transfusions), her low sodium levels, and her small size. She gets Epogen shots every Monday, Wednesday, and Friday to help her body produce the red blood cells. While I know nothing about what the numbers actually mean, I know that the report today was that she was at “40.” She was below 30 when she needed the transfusion. Her sodium needs to increase because that plays a big part in helping her grow. Which of course, is why she has the third problem… Her weight is increasing, and she is growing, but she isn’t growing at the rate that her doctors want her too. So she gets a dose of vitamins and a dose of sodium added to every feeding. Let’s hope that works.
All preemie babies have apnea. End of story. If you are more than 2 weeks early, you will experience apnea. At this gestation, breathing isn’t “automatic” like it is for the rest of us. Abby actually has to remember to breathe. Can you imagine that? Having to think about breathing? Luckily it is the only thing she has to think about because everything else is being taken care of for her. But anywhere from 5-12 times a day (on a bad day, even more) she stops breathing because she forgets. It happens mostly when she is in a deep sleep (because who can be expected to remember to breathe when you are sleeping???) So then her alarms go off because she isn’t breathing, and then more alarms go off because her heart rate drops too low because of lack of oxygen. It’s a vicious cycle. And the HARDEST part is that we have to stand there and let it happen. I know that sounds awful, and trust me, no one is going to let her forget to breathe for too long, but she has to learn. She has to learn how to make breathing automatic. She has to learn how to pull herself out of it and take another breath. So we watch her, and we watch her numbers on her monitor, and we wait…hoping she’ll do it on her own. If too much time passes (about 30 seconds or so) then the nurses take over. They wake her up and stimulate her which forces her to breathe again. The best part of my day is when the nurses tell me she hasn’t had too many “A’s and B’s” (which stands for Apnea and Bradacardium episodes (aka Brady’s, which is drops in heart rate). But we do have days that the news isn’t so great, like one last week where she had so many A’s & B’s that the nurses ran out of room to write them down on her chart and had to add a second page to her file for that day. Sheesh! Needless to say that was a day we couldn’t hold her, either. Those are the worst. Luckily, those days don’t happen that often, and even more lucky is that she seems to breathe at optimum capacities when Mommy or Daddy hold her. (I also get some kind of weird satisfaction when they pull her off of me and she screams in protest. While I don’t like hearing her cry, I do like knowing she’d rather be with me than in the fancy plastic box.)
This is what she looks like this week. Her feeding tube has been moved from her mouth to her nose, and the nasal therm is the smallest of all the breathing devices they have. So this is the most we’ve been able to see of her face so far. I gotta say, biased or not, I’ve got a cutie on my hands!
I know that many people are having trouble grasping just how tiny she is. She was born weighing 1 and a half pounds. That is the same weight as an iPad. And she was born 12 and 3/4 inches long. That is less than an inch longer than a standard school ruler – And that is head to toe.
To help everyone grasp just how small she is, Anthony and I did a little photo shoot of our own for all of you. Here are some pictures of her, laying next to some baby clothes. The first is a newborn outfit. This tiny little onsie is meant to fit the torso of a standard 7 or 8 pound baby in the first week of life. As you can see in the picture, what should only go from shoulder to hip covers her from head to toe.
So we went smaller. A friend sent us a “shirt” from a website that specializes in dressing preemies and micro preemies. This “shirt” is meant to fit a micro preemie about 3 or 4 pounds. Let’s remember that Abby is not yet 2 pounds. As you can see the “shirt” is more of a “dress” on her. And the beanie that comes with it is still far too large. But I will say that this is probably the first outfit she will fit into, hopefully within the month of July.
And last, but not least, shoes. As her mother, I felt that I should have the honor of buying my baby girl her first pair of shoes. Anthony, being the involved Dad that he is, felt he needed to pick out a pair, too. So in one night she got 2 new pairs of shoes!!! (But for this, we only used the ones I got her). These shoes are size “Newborn.” So small that many newborn babies don’t actually fit into them, or if they do, they last maybe a week or two. I’ll let the photo speak for itself.