More, More, More

It's been a pretty quiet day for the girls. Cadie was bumped up to 20 ml of milk and Maddie was moved up to 16 ml of milk. They are both still taking their feedings very well. Maddie's nurse informed us that there has been some talk of taking her off her IV fluids since she is handling the milk just fine. It will be nice when that happens...there will be one less tube in her. She won't be able to do that, though, until she has finished her steroids.

Here We Go A-Marching

This morning we participated in the annual WalkAmerica event held by the March of Dimes. Not long after the girls were born we learned about the March of Dimes and its purpose: preventing prematurity. Soon after that, we learned that the March of Dimes funded the research that is responsible for discovering and producing man-made surfactant, a chemical we produce naturally that coats our lungs, preventing our air sacs from drying up and becoming brittle, and which allows are lungs to re-inflate each time we exhale. It is a chemical that we don't start producing until thirty two weeks gestation, so the girls were unable to produce it when they were born. Both girls received doses of surfactant after they were born and have benefited from it tremendously. It is very likely that neither Cadie or Maddie would be alive today without Surfactant. If they had survived to this point, they would have a future of being on a ventilator at least until adulthood, if not their entire lives. Because of this, we are VERY supportive of the March of Dimes. We owe them our daughters' lives. Our team met at LaFortune Park this morning to walk in support of the girls. Our team included: Mommy, Daddy, Nana(my mom), Grandma and Grandpa (Jeff's parents), Grana and Poppy (my dad and step-mom), Auntie Lolo (my sister), and Mollie and Steve (the girls' god-parents). In just three weeks, our team managed to raise $2400! There was quite a turn out; we even saw some of the EOPC nurses. I designed shirts for our team, then found out today there would be a t-shirt contest. Of course we participated! We actually placed second in the Most Creative category. We were the only family team that participated amongst a large number of corporate teams, so we were very proud of our placing. It was a great time for a great cause.


We visited the girls before the Walk. Madeline has been bumped up to eleven ml's of milk. The nurse reported that Maddie had quite the blowout this morning. Apparently she just wouldn't stop pooping; she even got a little on the nurse. That's my girl! She doesn't take poop from anyone! Of course, we visited the girls again after the Walk. Maddie was sucking her thumb; it was so comforting to see her doing "normal" baby things. Cadie's report revealed she is now getting fourteen ml's of milk and that she'd had a blowout of her own. Is this something to look forward to when they come home? Madeline had her first round of steroids today. Dr. K expects the small dosage to help her lungs mature and strengthen faster, and we already noticed a difference during our visit. Ideally, the steroids will help her get off the ventilator soon. No steroids have been ordered for Cadie so far, but she hasn't struggled as much as Maddie, so we'll see. More good news: the girls no longer score high enough to be considered "minimal handling!" According to Dr. Cline, though, they are going to stay on minimal handling for just a bit longer because they aren't quite ready. This means we could be holding our girls within the next couple of weeks! The minute they start allowing us to hold them, they are going to have to drag me out of there to get me to leave every day. I can't explain how hard it is to sit by their beds every day, not allowed to pick them up and hold them. Jeff confessed he wants so badly to lean over and kiss them; but we can't.

We're on our Weigh!

Cadence and Madeline both looked comfy and cozy when we visited this afternoon. Maddie was swaddled and bundled, happy in her little cocoon. It's been so nice keeping them off the bilirubin light because it has allowed them to be swaddled all the time. They were both weighed last night. Maddie was one pound, fifteen ounces, just one ounce shy of two pounds! Cadie was two pounds, thirteen ounces, just three ounces shy of three pounds. They are both growing so much. We were able to get a peek at Cadie's legs while she was getting her diaper changed, and, as odd as it sounds, her little thighs looked chunky! They have increased their feedings again. Maddie now gets nine ml's every three hours and Cadie gets eleven ml's. It seems such a long way from one ml when they first started. They are both still digesting the milk without any problems, so they should continue to get more and more. Maddie had been struggling with her ventilator settings, but showed improvement after the nurse discovered her tube had been jarred then replaced it with a new one. Ever since, her oxygen requirements have been slowly going down. She showed us how impressive her sucking reflex is while she enjoyed her pacifier. I held it in her mouth for her for a while, and there were a couple of times she sucked so hard, she pulled it right out of my hand!

What's Up Doc?

Jeff and I visited the girls this morning and they looked great! Our prayers were answered because Cadie had a BIG bowel movement. Oh the things we celebrate! Both girls are stable on their ventilator settings and breathing seems to get a little easier for them every day. Madeline has been bumped up to six ml's of milk every three hours and Cadie is getting seven. Hopefully, they will continue to do well so they can get more milk and get some meat on their bones. We can see some definite weight gain in Cadie despite the fact that she has been swaddled; her cheeks are chubbier. We talked with Dr. K a bit while we visited Maddie. She is very please with how both girls are doing. She assured us that there is absolutely nothing wrong with either of their lungs. The x-rays are coming back clear; they are just struggling because of their prematurity, which is expected. She predicted Madeline will be off the ventilator by next week. We also discussed Cadie's head. She tried to prepare us for the possibility that Cadie might have to have a Ventricular Access Device (VAD) surgically "installed" to help control the hydrocephalus. It is basically a device that consists of a small tube and a bag that is inserted right under her scalp. If necessary, a needle can be inserted into the device to "tap" or drain whatever fluid has built up in the bag. She reassured us that there is no reason to believe this is definitely going to happen, but to be aware that it's a possibility. How can we not be terrified at the thought of another surgery? Especially one that involves putting a device in her head. So far, Cadie's head hasn't grown anymore, so we are resting on the hope that it won't. As long as the hydrocephalus doesn't advance enough to trigger any alarms that brain damage is possible, we will get by without the VAD. If it has to happen, though, it has to happen. She left on a positive note and said how pleased she is with the girls' progress; they have responded to all of the treatments they have been given. She remarked that we have couple of fighters on our hands. If they can beat this, they can beat anything.

We Have Poop!

You know it was a good day with a heading like that! The girls continue to improve with their ventilator settings and both have earned an increase to four ml's of milk because they are tolerating their feeds without a single problem. They have started weighing them every other day, so we will be able to get a clearer picture of their weight gain. Cadie weighed a whopping two pounds, ten ounces. That's not sarcasm talking, either. She has gained eight ounces since she was born and she's only six ounces from being a three-pounder! Maddie weighed one pound, twelve ounces. She lost just a tad, but it didn't come as a surprise due to the diuretic she has been receiving.

Now, in explanation of today's heading. I know it seems strange that I am so excited about something like poop, but for our girls, this is a big deal. It is vital that they have regular bowel movements: one, because it means their intestines are working properly; and two, because it is a natural release of bilirubin. Bilirubin is something that exists naturally in all of us. High levels of bilirubin can cause jaundice in newborns, and if allowed to reach a certainly level, can cause brain damage. The two ways of releasing bilirubin naturally are bowel movements and exposure to sun. Since the girls certainly don't get the latter, they rely on poop and the phototherapy lights. The phototherapy lights can cause damage to their eyes, so they have to wear soft-padded goggles as protection. Poop = no more phototherapy lights, no more goggles, natural release of bilirubin, and we get to see more of their beautiful faces! Maddie's nurse told us first thing that she'd had a HUGE stool that morning. Hooray for Maddie! Cadie hasn't had one yet, but we know she can do it!

Cadie's head measured the same today as it did yesterday. This means there hasn't been any further growth. We are still hoping the hydrocephalus will resolve itself naturally so no intervention is necessary. Time will tell.

Maddie Makes Her Mark

It is amazing how the littlest things excite you when it comes to your own kids. Today, we discovered that Maddie has a birthmark on her left hip. It's very cute. Her ventilator settings have improved, and they have started breathing treatments to expand her lungs and break up the fluid that has been collecting. Although she is still having some issues with desats (drops in her oxygen saturation), the breathing treatments seem to be helping. It is very common for preemies to struggle with desats and apnea, so it is not a major concern at this point. She is still just as feisty as can be; she was adamant on sucking her fingers while we were there. Her bilirubin level was back down to normal, but as a precaution they decided to leave her under the light for another day.
The results of Cadie's head ultrasound were somewhat inconclusive. It looks as though she has developed hydrocephalus, but the increase in her head circumference could be a combination of that and regular growth. They will continue to measure her head daily and she will be visited regularly by Dr. Benner. Some growth due to hydrocephalus is acceptable because infants' heads are naturally able to expand and adjust because the sutures in their skull aren't yet fused together. Once the swelling reaches a certain point, though, it becomes problematic because it begins putting pressure on the nerves, which can lead to brain damage. The doctors will watch her closely, and if it looks as though she is headed in that direction, they will intervene. Hopefully, the swelling will slow, if not cease, and the problem will resolve itself. Cadie was still wrapped up in her bili-blanket and resting comfortably. She always likes to have at least one arm up by her face. Today, it was her right arm, resting next to her cheek; she looked very content.

Ever since they were born, the girls have been classified under a "minimal handling" protocol, which limits any non-emergency medical treatment including checking temperature, changing diapers, changing their position, to every four to six hours, in order to limit stress. If the babies score high enough -- in this case, high is bad -- they are kept under this protocol until they can handle more "handling." Thursday, the girls will be thirty weeks gestation, which will, in terms of points, no longer classify them under "minimal handling." The sooner they are no longer on ventilators or classified as "minimal handling," the sooner we get to finally hold them. As a precaution, Dr. K may keep them under this protocol for a bit longer if she determines they still aren't ready to be taken off. Despite how desperately we want to hold them, we are okay with them remaining under "minimal handling" as long as they need it. We certainly don't want to contribute to their stress. We just can't wait to start Kangaroo Care.

All in all, it was a good day. Both girls were increased to two ml's of milk every three hours and they have not had a single problem. Cadie even got a taste on her pacifier (courtesy of her nurse, Monica), which was an extra special treat.

Busy, Busy

We've had a few ups and downs these past few days. When I visited the girls on Saturday the shift nurse informed me that Madeline had "had a really bad night." My heart sank. She explained that Madeline had quite a few problems with her oxygen levels; so much so that they had to turn the oxygen saturation on her ventilator up to 100%. Cadie, on the other hand, was doing just fine; she was having a few issues with her oxygen as well, but her nurse didn't seem as concerned as Madeline's. We have been anxiously waiting for Cadie to have a bowel movement because it is a natural way to control the bilirubin levels in her body. I was relieved when the nurse reported that Cadie, had in fact, pooped. I was also told that both of their feedings have temporarily stopped. I left for home, upset and panicked over Madeline's report. Then, after some sobbing and uncontrollable crying, my mom reminded me that that particular nurse -- the nurses rotate, so she isn't Madeline's nurse all the time, thank goodness -- has a flair for the dramatic. Composure regained, I assured myself that there was no reason for concern until Dr. K tells us we should be. I remembered that during my visit her oxygen levels were better, not great, but better, and she looked good. Before leaving, I had also requested that Maddie remain swaddled as often as possible because it is calming and soothing for her. As long as she is under the bilirubin light, though, she cannot be swaddled because it blocks the effects of the light.
We attended our church baby shower on Sunday. Everyone was unbelievably generous. I confessed to them how much I had been dreading the shower because it is so difficult being around other people right now. They were all very nice, though, and I ended up having a wonderful time.

We visited the girls after the shower. Their oxygen levels had improved even more, and they both looked as though they had gained a little weight. I was thrilled to see that they were both swaddled. They both looked very comfortable, Madeline especially. She doesn't like to be fussed with, but she loves to be bundled.

This afternoon, the girls looked great. They are both back under the bilirubin light because their levels were high enough after this morning's blood work. Madeline is under the traditional bilirubin light, but Cadie is wrapped up in a bili-blanket due to a shortage of lights. I actually prefer the blanket because it allows her to be swaddled. Both girls were weighed last night. Madeline weighed 1 pound 13 1/2 ounces and Cadence weighed 2 pounds 7.3 ounces. They both gained weight! Madeline is finally weighing in above her birth weight. Their chest x-ray results revealed that both their lungs are a little foggy, which can be attributed to a number of things including infection or just the fact that they were so premature. Dr. K ordered a dose of Lasiks -- a diuretic -- for both of them to get rid of some of the fluid, which will, in turn, improve their breathing. They are both taking milk again; they have to restart at the very bottom, which is frustrating, but necessary to make sure they can tolerate it. They are both receiving 1 milliliter every three hours. Madeline got her first feeding at 11 this morning and hasn't had a problem. Cadence got her first feeding during my visit at two o'clock, while Madeline got her second. Maddie had a little smear on her rear end when the nurse changed her diaper, so she is trying to make a poop.
One area of concern is Cadie's head. The nurse, Monica, reported that Dr. K had bumped up her scheduled head ultrasound today because her head had measured a little more than yesterday. My immediate reaction was to attribute the change to growth, so I asked the nurse if that was possible. She and Dr. K had actually discussed that possibility earlier in the day. They agreed that if it isn't normal growth, it is most likely due to hydrocephalus, a complication of IVH that occurs when a blood clot prevents cerebral spinal fluid from draining naturally. If the fluid cannot drain, it builds up in the area that surrounds the brain and can eventually put damaging pressure on her brain. If the head ultrasound confirms that the growth is a result of hydrocephalus, they will continue to monitor her closely. If it reaches a point where intervention is necessary, they can perform a procedure to drain the excess fluid. We are crossing our fingers that this isn't the case, that her head is just growing from all the yummy milk she is getting.