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.

Two Steps Forward, One Step Back

The girls looked great today. Cadie actually looks like she has gained some weight, not a lot, but a little goes a long way with them. She is eating 6 1/2 ml's of milk every three hours now, which is quite a bit more than the 2 ml's she was getting. Hopefully, she will continue to tolerate the milk so she can start gaining some serious weight. Maddie continues to get milk every three hours also, but she only receives 1 ml because she threw up a little last night. Any time they show even the slightest aversion to a feeding, they ease off a little to ensure there isn't a problem. Sometimes they take two steps forward, then one step back. It's a slow means of progression, but it's progression nonetheless. Cadie was resting contently, but Maddie was squirming all over the place. This is just what she does. The nurse informed us that Maddie had actually pulled out her ventilator tube this morning, so they were re-taping it during our visit. She was agitated and stressed, and it was easy to see that she was in pain. It broke my heart to watch her and not be able to do anything, but I knew it was better for me to stay and calm her with my touch, then leave her to the anxiety of a medical touch. I rested my hand on her legs to reassure her, and it seemed to help. At one point, she got a hold of my finger and squeezed it tight. Once the nurse was done, Madeline calmed down and went back to resting. She just doesn't like to be fussed with. Something tells me she is going to be a handful when she gets home.

Good News

We found out the results of the latest head ultrasounds today. It was good news, not fantastic news, but good news. The scans revealed that there hasn't been any significant change in either of their bleeds. Translation: it hasn't gotten worse. Dr. K was pleased with the results and has scheduled another head ultrasound for next Tuesday and every Tuesday following that until the results show improvement. At our first meeting, when we discussed all of the girls' problems, Dr. K mentioned that if things were going to get worse, it would happen in the week or two following their birth. So, the hopeful mommy in me is holding on to the thought that if it hasn't gotten worse by now, it won't. I hope I am right.

Madeline is doing well on the ventilator. Cadence has followed and is also back on the ventilator. They both just wore out. They will try switching them to the CPAP again in the next week or so. As I've said before, we are not concerned as long as they both continue to eat. With her switch back to the ventilator, they had to temporarily stop Cadie's feedings, but will resume them soon. The hardest part of going backwards is seeing them out of their isolettes and back in the radiant warmers. It was really difficult not to feel as though they had taken a huge step back. I have been warned over and over again that life in the NICU is a roller coaster, but I’m not sure any amount of warnings can help you fully comprehend how hard it is unless you find yourself in the middle of it. I am trying to be as positive as I can, especially for Cadence and Madeline, but some days it feels impossible.

Tomorrow, Tomorrow

We were supposed to find out the results of the head ultrasounds today, but when we found out the doctor on call is the same doctor that scared us to death with the original ultrasound results, we opted to wait until tomorrow when we can get them from Dr. K. The girls looked good today, although they had to put Madeline back on the ventilator. She was just too tired and had been working so hard. We've resolved not to get discouraged. They warned us this could, and probably would, happen. It doesn't necessarily mean she has taken a step back; she just needed a break. One of the nurses put everything into perspective. They aren't even supposed to be here yet and we are demanding that they breathe, eat, digest milk, have bowel movements, and regulate their body temperatures. We are insisting they do a lot of things that their little bodies are yet meant to do. Even though she is back on the ventilator, Madeline will continue to receive breast milk, so hopefully she will continue to grow. One positive thing about her being back on the ventilator is that it should help her to gain weight since she won't be expending calories with the effort it takes her to breathe on her own. We don't know how long she will have to be on the ventilator this time, but I'm not worried as long as she can continue to eat.

Yum, Yum

As of today, the girls are now getting two milliliters of breast milk every three hours, and they are handling it just fine. Cadence has been suffering from a little bit of acid reflux, but nothing she can't handle at this point. Both girls looked so peaceful in their isolettes. Cadie was looking all over the place, her eyes wide open several times. Tomorrow is the big day; we're praying the head ultrasounds show improvement.

Eye See You

Madeline opened her eyes for the first time today and it was so good to see! The girls have been upgraded to breast milk every three hours now, rather than every other feeding. It is still just a tiny amount, but they are slowly working their way up. Cadence has finally been moved in to her very own isolette. Just like Maddie, she seems to be cozy and resting much better now. They were both weighed yesterday and here are the results: Cadence was 2 pounds 4.3 ounces and Madeline was 1pound 9 ounces. We were a little concerned about Maddie's weight loss, but Dr. Cline -- one of the residents -- assured us that it is normal for preemies to lose some weight before they start gaining it. It reminded me of how most newborns leave the hospital a little lighter than when they were born; Madeline certainly is no exception, although she is far from getting to go home. According to Dr. Cline, it will be a successful week if Madeline is able to maintain her current weight; any weight gain is just icing on the cake.

Back on Track

Both girls are now receiving breast milk! Apparently, the antibiotics immediately knocked out the infection that was trying to develop in Madeline. She is still calm and content in her new, little environment, and resting much more peacefully. Cadie is still free of the bilirubin light and there is an order to move her in to an isolette once one becomes available, specifically one that has a built in scale so they don't have to move her every time she is weighed. Apparently, though, those isolettes are in pretty high demand. They are both still doing well on CPAP and their vital signs are excellent. We are so blessed by and pleased with how well they are doing. It is amazing how strong and resilient preemies can be. They are definitely fighters.
Today we were able to share a very special moment with Cadence. As soon as we arrived I started talking to her to let her know we were there. Immediately, her eyes started fluttering, and then she opened them and looked right at me. We have seen her eyes open several times, but this was the first time we made eye contact. It took every ounce of my strength not to pick her up right then and there.

If at First You Don't Succeed...Try, Try Again

Unfortunately, they had to stop giving Madeline breast milk today because it looked as though she might be developing an infection. As a precaution, they started a round of antibiotics. Dr. K explained that it can take a few tries before preemies can handle the digestion of milk. It can be stressful on their system and it is just one more thing they are required to do that they aren't supposed to be doing yet. They will try again in the next few days. Both girls are hanging in there on the CPAP. Cadence is no longer under the bilirubin light, at least for now. They will check her bilirubin level in the morning to determine if she needs it or not. We are hoping she will be moved into an isolette soon. The most exciting news is that they removed Cadie's UAC today in anticipation of beginning breast milk tomorrow. We are crossing our fingers that she will be able to handle it. In other news, I never thought I would write something like this with such enthusiasm, but…we have poop! Both girls have now had a bowel movement. This is excellent news because it is not uncommon for preemies to have difficulty in this department, which can lead to serious problems where parts of the bowel can actually die. This means, so far, everything is working. Dr. K remains encouraged by their progress. The neurologist, Dr. Benner, visits every day to measure their heads and monitor any unusual growth. So far, there are no signs that either Cadence or Madeline is suffering from any swelling. Cadie was particularly active today. We were able to see her little eyes and she even sucked on a tiny pacifier for a while. I ache for the day we get to hold them. We found out the EOPC honors a program called "Kangaroo Care," which encourages NICU parents to spend quality time with their infants, holding them skin to skin on their bare chests. Studies have shown a tremendous response in both the babies and parents. We're not sure when we will be able to experience this with the girls, but it is certainly something to look forward to.

Cadie & Maddie's Big Move

Today's visit to the EOPC brought some wonderful news! Madeline has been transferred to an isolette -- what most people recognize as an incubator. When we first visited the girls, we thought the babies in isolettes were actually the "sicker" babies because they are enclosed and the isolettes are covered with a blanket. My good friend, Jenny, a NICU nurse in Oklahoma City, explained to us that isolettes are actually a step up from radiant warmers. This move means they are no longer on a ventilator and they are closer to being able to maintain their own body temperature. This is a HUGE move for Maddie, so we are thrilled! She also received her first feeding of breast milk this afternoon for her two o'clock meal. There haven't been any problems so far; no throw-up or spit-up and no signs of abdominal complications. This is a good indication that her body is mature enough to process milk. Sometimes the decision is made to introduce breast milk and the baby isn't able to process it yet, so they have to restart fluids. They successfully gave her another feeding at eight o'clock. We are amazed at how determined and tough our little girl is! More good news regarding Madeline: she is trying desperately to open her eyes. Babies' eyes are fused shut in the womb to allow development and to protect them from their surroundings. Cadie's eyes weren't fused when she was born, but Madeline's were. We were assured that it is normal and that they will eventually open on their own. Now, she is trying to blink and we could see the slightest slit where her eyes are just barely opening. Hopefully, we will see her beautiful eyes soon.
Cadie is hanging in there with some big changes of her own. She is now the proud owner of her very own CPAP. We are so excited because she has been struggling with her breathing and this is definite progress. The nurse warned that she may fall back to the ventilator again, but not to panic because sometimes it just takes a couple of tries before they can stay off the ventilator permanently. The nurse also mentioned that they are planning to move Cadie into an isolette of her own soon, so we are hoping she will be back by her sister in the next couple of days. If she is able to stay on CPAP, Cadie will get to start breast milk just like Maddie. We were also excited to hear Cadie cry for the first time since she was born. In the delivery room, we only heard a couple of whimpers, so the sound of her crying was precious.

Let the Milk Floweth

Today they took out Maddie's UAC, which is a central line in her belly button that fed her fluids. Why did they take it out, you ask? Because they are planning on giving her breast milk tomorrow! She will start with a very small amount, only 1 mili-liter, and it will be given to her through an OG tube that is placed down her throat and into her stomach. If she responds well, they will slowly increase the amount she receives until she is receiving regular feedings, every three hours. We are so excited because breast milk equals weight gain; she is so tiny right now, so she needs some meat on her bones! Cadie continues to do well on the ventilator. Dr. K is considering giving her a try at CPAP soon. Right now, we are taking it one day at a time.

News

Today was a milestone day; we heard Madeline cry for the first time. A lot of parents complain about their newborn crying too much, but hearing her little cry was the sweetest sound in the world. She is still doing very well on the CPAP. Dr. Karathanos even mentioned removing the IV that is feeding her fluids and trying to give her some breast milk. They are slowly weaning down Cadence's oxygen, but she isn't moving along as quickly as Madeline. Both of their vitals are excellent. In fact, Dr. K said she was very pleased with how well they are doing "clinically." The chest x-ray results were good for both girls. Maddie's was a little clearer, but both were acceptable. We had good news and okay news when it came to the head ultrasounds. Maddie's didn't show any significant change, which is good because it hasn't worsened. Unfortunately, Cadie's ultrasound showed a grade three rather than a grade two bleed. Dr. K said the pictures were much clearer this time, so it is possible that Cadie's has been a grade three all along. At this point, no intervention is necessary. They will measure their head circumference daily to check for swelling then do another ultrasound in a few days. It is still possible that the bleeds will clear up on their own; if not, there are options. Dr. K seems encouraged, so we are too.

Ventilator Be Gone!

When we arrived to visit the girls today, we found that Maddie had been taken off the ventilator! She has graduated to CPAP, which continuously pumps oxygen into her lungs to prevent the air sacs from collapsing. Although she is still receiving help, she is now breathing on her own. Cadie was also doing well. Her breathing has improved and her oxygen is almost down to twenty-one percent or "room air," which is the same air that we breathe. Both of their vitals were great, and they are looking better every day. Tomorrow is a big day, though; they will do another head ultrasound and chest x-ray for both girls.

What's Ahead?

Thursday, April 6th, was a really hard day. After running some tests, including an echo cardiogram for their hearts and a head ultrasound for their brains, we received some devastating results from one of the EOPC neonatologists, Dr. Malik. Both girls had sustained Intraventricular Hemorrhages (IVH). On a scale of one to four, Madeline's bleed was grade three and Cadence's bleed was grade two. Without any explanation, the doctor apologized and said there was nothing they could do. We assumed this meant imminent death for both girls. Jeff and I were devastated. We held on to one another and cried.

Fortunately, the social worker that is assigned to parents of EOPC children had loaned us a book about preemies. We looked up information on IVH and determined that all hope was not lost. We found that many babies recover from IVH without any long term effects. In fact, sixty five percent of preemies that sustained a grade three IVH recovered without any intervention.  What Dr. Malike had meant when apologized and said there was nothing that could be done was, once the bleed has occurred, whatever damage has been done cannot be reversed.  We would have to wait and see what damage, if any, had occurred.

The next day we met with the girls' neonatologist, Dr. Karathanos. We were relieved to find she was able to explain all of the issues clearly without causing any panic. We discussed three major problems.

#1 - IVH - This is actually quite common in preemies, especially those as early and as tiny as ours. Grade two is considered mild and is usually not a major concern. Grade three is watched more closely; doctors intervene if necessary. We were relieved to hear that there are treatments that can resolve this problem, but once the bleed has occurred, the damage has been done. Dr. Karathanos predicted the girls could suffer from a delay in motor development -- walking and talking -- as a result of their respective bleeds. This news was a far cry from our fears of severe disabilities and mental retardation.

#2 - Patent Ductus Arteriosis (PDA) - While in the womb, all babies have a hole in their heart that allows blood to flow without the use of the lungs. When born at term, this hole typically closes with the first breath a baby takes. With preemies, it is common for the PDA to remain open, which allows blood to continue to flow in a direction it no longer should. An open PDA causes difficulties with blood pressure and breathing. In most circumstances, an open PDA can be treated medicinally. A common side effect of the medication, though, is an increase in bleeding. Because both girls suffered hemorrhages, medicinal treatment was not an option. That left us with only one other option: PDA Ligation, a surgery that closes the PDA with a permanent, metal clip. Although the thought of our four-day-old daughters enduring heart surgery was terrifying, it was something we knew had to be done. Without the surgery, Cadence and Madeline didn't stand a chance. So, Saturday, April 8th, our daughters underwent PDA Ligation surgery, performed by Dr. Reine at their bedsides. The procedure is not invasive; a tiny incision is made on the left side, just below the armpit. The surgeon maneuvers between the ribs, lifts a lung, and clamps the hole. Nearly two hours after he began, Dr. Reine emerged from the EOPC to tell us that both surgeries were a success. Momentarily, we breathed a collective sigh of relief.

#3 - Lungs - Due, in part, to the PDA issue, Cadence and Madeline were having difficulty breathing. Because the ventilator can eventually cause permanent damage, it became vital to have them breathing on their own as quickly as possible.

EOPC

Although I had been terrified at the thought of having a Caesarean Section, I was surprised at how well I handled the entire experience. I was relieved to end my ten days of labor, but heartbroken by the reality that the girls had been born long before they were supposed to be. Our initial goal after finding out I was carrying twins was to make it to thirty-six weeks, which is often considered "term" for twins. They were, however, born week twenty-six of my pregnancy, ten weeks early.

I was taken to a postpartum room not long after surgery. Jeff walked with the girls down to the EOPC, then was able to see them again after they were admitted. I would have to wait to visit them until I was able to get out of bed, one o'clock the following morning. They were bigger than I was expecting. After ten days of hospital bed rest, we had already prepared ourselves that they would be tiny and fragile. They were hooked up to a variety of monitors, chords, and tubes. A large monitor, similar to a computer monitor, kept track of their blood pressures, heart rates, breathing rates, and oxygen saturations. Their beds were radiant warmers and monitored their body temperatures. Although it was difficult to see the tubes down their throats from the ventilators that were breathing for them, it was easy for us to look past all of the equipment and see our perfect, little babies. In our eyes, they were beautiful in their own right.

Delivery

During delivery, Dr. Lunn discovered that Madeline's placenta had partially separated. There was no way of knowing if the premature labor had caused the separation or if the separation was the cause of the labor. No matter, with Madeline's placenta slowly tearing away, she would not have made it much longer and I would have bled to death.

Once both girls were born, I can remember the first thing I asked, "Are they dead?" As horrible a question as it is, it was a fear that had plagued me since I had been admitted to the hospital. Jeff and the doctors assured me over and over that they were alive, but my fear made it difficult to believe them. Cadence made the slightest whimper that sounded like a kitten when she was born. Madeline didn't make a sound. I just knew they were dead.

Fortunately, they weren't. Immediately after delivery, they were cleaned up and examined, each by their own team of nurses and a neonatologist. They both scored surprisingly well on the Apgar scale. Cadence scored eight out of ten and Madeline scored seven out of ten. Some term infants don't even score that well, so we were encouraged. While most mothers get to hold their child almost immediately after delivery, I only got to see a glimpse of our fragile, beautiful girls as they were whisked away to the Saint Francis EOPC. Jeff and I braced ourselves for a rocky future and tried to prepare for a long NICU stay.

It All Begins...

I woke up on Sunday, March 26th, 2006, with a severe leg cramp and abdominal pain. I had been growing so much recently that I didn’t think much of it. I attributed the cramping to growing pains or Braxton Hicks contractions. Jeff and I went to church where I noticed the pains were coming at a regular interval of every three minutes. I still didn’t think much of it…it was way too early for me to be experiencing labor; I was only twenty five weeks pregnant. By evening, the pain had not ceased or even slowed, so I called the doctor, who ordered me to go to the hospital immediately. There was an urgency in her voice that made me panic. I broke down in tears. I knew it was much too early for our daughters to come into this world.

I was admitted into Labor and Delivery at Saint Francis Hospital. My initial examination revealed that I was, in fact, in labor and already dilated to a two. It seemed as though delivery was imminent. Steps, however, were taken to slow down, if not stop, the labor. They pumped me full of medications, some effective, others not. I was given the first of two steroid shots to strengthen our daughters’ lungs in case the labor could not be stopped. I wouldn’t be able to receive the second shot until twenty four hours after the first. After being given a bolus of a drug called Magnesium Sulfate, I faded in and out of consciousness. My bed was inverted so that my feet were above my head in an effort to relieve the pressure the babies were putting on my cervix. This, in turn, made it extremely difficult for me to breathe, so I was put on oxygen. Everything that could be, was being done to prevent delivery, but the prognosis was not good. Suffering from the various side effects of Magnesium Sulfate, not only did I feel as though my body was on fire, I often hallucinated and became very emotional. I can remember waking up the next morning and looking at my husband, Jeff. In my eyes, he had a huge piece of bacon draped over his head. I can also vaguely remember asking about a donkey in the corner and an imaginary box on the floor. Though somewhat amusing, it was clear that I was in pretty bad shape. We were told that I would not leave the hospital until the girls were born. They moved me to a “long term” room where I spent the next nine days fighting for our daughters. Every additional day I could remain pregnant was crucial and precious. The head of the Saint Francis NICU, Dr. Gomez, visited my room on day two. We discussed all of the possibilities of the next few days and he set our first goal at reaching twenty seven weeks. Statistically, the mortality rate of premature babies drops dramatically once they reach week twenty seven. It seemed as though I was making progress, so they slowly lowered the level of my Magnesium drip, and I eventually was allowed to lie flat rather than practically upside down. I began to feel better and breathing became a little easier. The contractions slowed to every four to eight minutes, then eventually tapered off to once or twice an hour, which I was told was acceptable. I tried to remain optimistic, but wondered how I would be able to survive three or four more weeks.

I had my best day on Sunday, April 2nd. The contractions had all but stopped and I began feeling a little bit like my old self. It seemed as though things were turning around. In retrospect, that day was the calm before the storm. I started bleeding that night. Naturally, I panicked. At first, I thought my water had broken. The nurses reassured me it was normal; everything was okay. Nights were the worst. It seemed as though the contractions picked up and everything got out of hand. I didn’t tell anyone, but that night, I had the strongest feeling that the girls would be born early that week. My body just didn’t feel right.

Finally, Tuesday morning, for the first time in over a week, Dr. Lunn examined me. The bleeding had gotten worse, but Dr. Lunn wasn’t concerned because the contractions hadn’t worsened. The blood had tested negative for amniotic fluid, so as long as the contractions were kept in check, everything was fine. Later that morning, though, the contractions picked up and didn’t stop. The bleeding increased significantly, and I was having monster contractions, so the nurse notified Dr. Lunn. She examined me for the second time that day around 2:30 pm and discovered that I was fully dilated. Our daughters would have to be born immediately. A rush of nurses flooded in to prep me for surgery, while I tried to wrap my mind around the reality of delivering prematurely. The fear of what would become of our daughters overwhelmed me, but the guilt of feeling a sense of relief that my ten day ordeal would soon be over was almost too much to bear. What kind of mother was I to be relieved that my babies were going to be born over three months too soon? After initial panic, I was surprisingly calm. They wheeled me in to surgery, Jeff at my side, and it wasn’t long before we became “mommy” and “daddy.”