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My Journey to the NICU and Beyond – Part Five

Cyn — Sun, 29 Nov 2009 17:05:48 +0000

Welcome home, Eli, in 2005.

My maternity leave was almost up and I had about a week to settle our whole family into a new routine before I headed back to my 3-day a week job. With RSV (respiratory syncytial virus) season right around the corner, we decided to sequester Eli in our house until April. I don’t think people understood why we were being so cautious, but nowadays, with H1N1, I think they might understand a bit better. We arranged for the group of doulas that we had used for my first son’s birth to come two days a week and my husband would cover the other day.

When preemies come home from the NICU, they are used to constant and scheduled attention. There is no “hey, my baby is sleeping through the night at 2 months” joy. Eli slept in 45-minute stretches during the day and not much better at night. I cried quite a bit from pure exhaustion and the constant worry of whether he would thrive.

We fed him as well as we could. Eli had reflux, common among preemies, but not exclusive to them. The additional challenge to the reflux was getting Eli to suck hard enough to ingest enough nutrition. As with many things, this natural motion was underdeveloped. We needed to squeeze his cheeks, support his chin, hold the bottle and him all at once. It could be an Olympic event. After struggling to get the food into Eli, we would hope that we had the right combination of medicine, rice cereal and holding him upright, to keep the food down. We all got better at this as time wore on.

As in the NICU, Eli graduated from every challenge at home, one by one, and became more and more of a healthy baby. He was so strong that most of his physical developments came earlier than his brother’s. His simple determination had served him well in so many ways. It has not been “easy street,” but I’ve read so many accounts of other preemies who have not thrived as Eli has. We count ourselves blessed and lucky. He is a miracle born from many helpful, skilled and loving hands.

I hope I’ve succeeded in raising your awareness of prematurity this month. Sadly, our story is not unique, but the outcome is the best it can be. I’ll leave you with our current picture that we take every year on the front step, just as the one above. And with Eli singing a song he learned at school. Thanks for reading our story.

Family Photo 2009

My Journey to the NICU and Beyond – Part Four

Cyn — Sun, 22 Nov 2009 19:45:22 +0000

November is Prematurity Awareness Month. RiverDog Prints supports one cause or charity a month and this one rests very close to home. I will be posting once a week in November, retelling my story of prematurity. I warn you before you read that some details are a bit graphic and personal, but anyone who has gone through this experience will know, that the details count for so much. You can support the March of Dimes by clicking the banner below, but first, read on for part four of my personal preemie story.

Yes, Eli spent 89 days in the NICU. The first few days are a vivid blur. Decisions had to made quickly and there was a tremendous amount of information to understand.

Eli’s challenge right from the get-go was RDS (respiratory distress syndrome) and apnea of prematurity (forgetting to breathe) . His lungs needed the chance to develop that they didn’t get in the 3rd trimester. One of the first things parents have to get used to in the NICU are the monitors hooked up to their babies. All the alarms and beeping create extreme tension, as the monitors signal your baby’s distress. You have to listen to an alarm going off as your child forgets to breathe. You have to suppress your panic and allow the calm nurse to come to the bedside. She will take care of your baby’s needs. You have to give up that control.

As with many preemies, Eli was born with a PDA (patent ductus arteriosus.) This is a fetal blood vessel near the heart that is supposed to close within the first few days of life. Born early, the vessel does not always close and can affect breathing and heart function. The PDA would need to be fixed with a strong medicine. And if that didn’t work, he would need surgery. Hard to imagine surgery on such a tiny body.

My husband and I bought two books for our own research and to preserve our sanity. Once I was released from the hospital, I would visit Eli daily. At night, after my 3-year-old tucked in bed, both my husband and I would read our Preemie books and talk about what was going on that day and what might be in the future. It was good to be informed and prepared for what may come.

Another issue was Eli’s IVH (intraventricular hemmorhage.) Simply stated, this is a brain bleed and they grade these for severity. Eli’s was a 2. Low on the scale of severity, I still found this problem to be the scariest one of all. A specialist does an unltrasound in the first week to see if there is an IVH and grades it. Then, you wait six weeks before you know if there was any damage they can detect. It could have long-lasting effects on Eli’s brain.

NEC (necrotizing enterocolitis) was a “wait and see” worry. This is an inflammation of the intestinal tract and can be very dangerous. Once the nurses started introducing breast milk to Eli through his NG tube, we had to see if his digestive system was ready and working properly. If it wasn’t, another possible surgery loomed. Eli was given the tiniest amount of food imaginable and the nurses would increase it with each feeding. People complain about diapers all the time (I’ve been guilty of that), but we were anxious and hoping for a dirty one.

One wonderful action we could take was Kangaroo Care or K-Care. Studies have shown that holding a preemie close to your heart, skin-on-skin, helps them heal and thrive like nothing else can. As soon as Eli was able to be removed from his isolette, he received K-Care from both my husband and myself every day.

As Eli started to take more breast milk, I had to make a decision about how to feed him. I struggled with this decision like no other concerning my children. I ultimately decided to bottle feed Eli my breast milk, instead of directly from me. This would enable us to add a fortified formula to my milk for increased weight gain, as well as a bit of rice cereal to help control his reflux. There was a pump set up for me right next to Eli’s bed. If you’re not familiar with breastfeeding, it is an emotional process. I don’t mean the vision of lovingly looking down at your child as you provide his sustenance. I’m talking about the emotional connection you have to make with the process, especially if you are going to pump. For your milk to let down, you have to have an emotional trigger. With my first child, I put his picture on my pump at work and that was all I needed. For Eli, my trigger was the sound of the pump. I cried about this, but just once. I cried because I couldn’t feed my child and I thought my emotional connection was to a machine. As I look back, my trigger may have been the sound of the pump, but my emotions were always tied to Eli.

Most babies have bilirubin or jaundice, which is the breakdown of excess red blood cells that they no longer need. Preemies need extra help to get rid of the excess cells. That’s why you see pictures of them under bright lights wearing funky sunglasses. Certain wavelengths of light will combat the jaundice. Once the excess red blood cells leave the body, there is a risk that preemies will not be able to create more at a fast enough rate. There was a span of time when Eli’s red blood count was so low, they considered transfusing him. The medical staff would rather not transfuse; they want the baby’s body to do create the cells on its own. It was a close call, but Eli rallied just in time.

Eli conquered each obstacle as it came. He was still on oxygen, but not all the time. He still struggled with apnea, but we had become used to our boy forgetting to breath. The nurses had always talked about Eli going home, almost right from the beginning. Now, they referenced it constantly. It sounded wonderful and frightening at the same time. We took a course in infant CPR to be prepared. We discussed whether we would take home a monitor or not. We started gathering our supplies of tiny bottles, tiny nipples, tiny everything. I had painted Eli’s room after I had recovered from the C-section. It was all swirly turquoise with little sailboats waiting for him. We just needed Eli to be ready.

Fight for Preemies in Photos

Cyn — Tue, 17 Nov 2009 14:37:42 +0000

Today, November 17, 2009, is the day to Fight for Preemies. I’ve been telling the story of my micro-preemie son, Eli, on this blog and posting our story once a week for Prematurity Awareness Month. For this Blogger’s Unite event, I thought I would share photos and captions of our time in the NICU.

Nose Canulas need to be taped on the face. Eli had a bad reputation of ripping his off. Those sweet knit hats are made by volunteers for all the preemies.

The technique for feeding a preemie is to squeeze the cheeks, support the chin and hold the baby and the bottle at the same time. This was my first attempt... it took much more practice by both of us.

Kangaroo Care, or K-Care, is supposed to be very beneficial to preemies. You hold your baby, skin-on-skin, close to your heart. It's one of the few ways you feel like you're actively helping your child.

Eli's 1st Photo Session without being attached to the monitors. That was a BIG day. It was scary freedom in that Family Room in the hospital.

Testing his response to the car seat. One of the final steps before Eli graduates from the NICU to our home. He looks so tiny and he is swimming in the preemie clothes I bought. Sweet little peanut.

Saying goodbye to the NICU was bittersweet. All the doctors and nurses are such special people and Eli couldn't have had better care.

I hope you enjoyed meeting Eli. You can read our story so far here, here and here. Another post will be up on Sunday to continue Eli’s story. You can read other stories today on many blogs by going to Blogger’s Unite or by searching #fight4preemies on Twitter. Thanks for reading!

My Journey to the NICU and Beyond – Part Three

Cyn — Sun, 15 Nov 2009 19:26:07 +0000

Eli's First Picture

Here is my little one in his first photo. The NICU nurses take pictures of the preemies right away to preserve the memory. It’s a photo I treasure.

Tuesday is the Bloggers Unite Fight for Preemies event and I’ll have a post describing Eli’s days and nights in the NICU to highlight the effort to raise awareness. Stop on back then and don’t forget that I’m donating birth announcements to the NICU of your choice if you share your preemie story here or post a link to your own blog. You can read the details and see the announcement design here.

My Journey to the NICU and Beyond – Part Two

Cyn — Sun, 08 Nov 2009 13:34:43 +0000

November is Prematurity Awareness Month. RiverDog Prints supports one cause or charity a month and this one rests very close to home. I will be posting once a week in November, retelling my story of prematurity. I warn you before you read that some details are a bit graphic and personal, but anyone who has gone through this experience will know, that the details count for so much. You can support the March of Dimes by clicking the banner below, but first, read on for part two of my personal preemie story.

Bedrest during pregnancy. Not uncommon, but for anyone who has been doomed to it, knows that it is not easy. It sounds great, right? You don’t have to clean or cook or work, but you watch your house become cluttered and dirty and you can’t pick up your little ones when they ask. A three-year-old boy doesn’t understand bedrest because of a brother he hasn’t seen yet. And this was 2005, before Hulu, before on-demand video and before I owned a laptop.

My journey continued in bed and I was very good about resting. The only problem was my motility problem – the nicest way I can think of writing severe constipation. It’s not something you can stop doing – it’s something you have to fix. And no one was taking it seriously. I guess the assumption in the medical community was that I was just complaining about a typical side effect of pregnancy. It was very painful and never gave my body a chance to heal. This common side effect ended up putting my unborn child at severe risk.

I hung in at home for another few weeks. At the 25th week of gestation, I had another severe bleed. Back to the hospital we went and this time, I was admitted. Now, my baby was viable. Viable – what a strange word. I guess it should have put me little at ease because now they would do everything medically possible to save him. The doctor’s from the NICU (or more properly, neonatologists) visited with my husband and I to go over any questions and to suggest shots of antenatal steroids to help the baby’s lungs develop quickly in case of delivery. The neonatologists were honest and direct about all our questions and left us scared. Crazy scared. I had the shot of steroids within the hour and they found me a bed on the high-risk maternity ward.

For the next week and a half, I ate more regularly than I had in my whole life and had more needle sticks than I ever want to have again. And I’ve never been so bored, isolated and anxious. My husband would visit with Boo when he could, but he was working on and off, trying to save up his vacation time for when our family really needed him. Plus, my son was not yet three and was having a very hard time adjusting to me in the hospital. Must have been so scary for him. I kept complaining about my motility problem to every person in the never-ending stream of medical personnel that entered my room. Suggestions of more water, more fiber, excessive amounts of prune juice (I will NEVER drink that again), but no real remedy. It seems so ridiculous to me now. Why didn’t anyone put me on magnesium, as in Milk of? If I could go back, I would kick some serious medical tail!

Tuesday, July 5, 2005
Hadn’t had a shower for many days and the nurses allowed me to take one that morning. Yippee! But had another rough bout with motility and didn’t feel right most of the day. By evening, I really felt like I was beginning labor. Had an awful Resident, who was not listening to what I was actually describing to her. Thankfully, I had an awesome nurse, who realized that I was having very mild contractions, and guided the Resident into giving me IV fluids. This can help stop them and it did… for a few hours.

It was late, about midnight. The contractions came back and they were stronger this time. I was wheeled to the maternity ward to be given magnesium to stop the contractions for good. As the burning meds went into my arm, I called our home voicemail and left a message of what was up, so I wouldn’t wake my husband or Boo. The contractions did stop and I tried to get some rest. I think I slept for a few hours on my side, listening to the sounds of the monitors. That kid inside me was happy as could be. He really didn’t want to go anywhere.

In my morning, there was more blood than I had ever seen before and it was vibrant in color. Soon after, my husband was in the room and we were waiting for the doctor to discuss our options. In the meantime, I began to feel very weird – lightheaded and nauseous. Another savvy nurse realized my BP was super-low (50 over 30) and tipped the bed, so my head was lower than my feet. Not sure how I didn’t pass out – maybe just sheer Mommy willpower. I was NOT going to be out of it before we had made some decisions. As my blood pressure normalized, the doctor arrived and suggested we deliver as soon as possible. The bleeding seemed too severe and the steroid shots I had had a week and a half before should help our son do his best on the outside. My husband and I had been going back and forth on baby names. I remember him looking at me and saying, “So, his name will be Eli.” It was the name I had wanted. And there it was… our son was to be born.

Fight for Preemies – November 17

Cyn — Thu, 05 Nov 2009 19:46:42 +0000

Just a reminder that November is Prematurity Awareness Month and the March of Dimes wants us to get our fight on! Raising awareness is a great way to get people involved in what you care about and the more informed your community is, the more they feel empowered to help.

I’m writing about my experience with prematurity this whole month. My first entry is here and I’ll be blogging every Sunday of this month, telling my story of disbelief and terror and triumph. Hope you’ll come back to read my tale and to raise your own awareness. If you have your own story and would like to share a link to it or tell it here, I will be donating a set of birth announcements (pictured below) to the NICU of your choice just for sharing. Thanks for supporting this cause in any way you can.

Preemie Birth Announcement - front

Preemie Birth Announcement - back

My Journey to the NICU and Beyond – Part One

Cyn — Sun, 01 Nov 2009 15:09:52 +0000

I guess my resistance stemmed from how much more work two seemed than one. Most of my friends had children before I did and I studied under them. They worked hard at motherhood and I wasn’t sure I wanted to experience the whole infant stage again so soon. I did know that I wanted Boo to have a sibling. Both my husband and I grew up with older brothers and felt it was important for our kids to have a brother or a sister.

Biting the bullet, it took us about one month to get pregnant (love or hate my fertile loins) and I was immediately convinced it was a girl. The first trimester was okay. I tried to be smarter with my body this time and not gain 50 pounds! I kept exercising and eating a healthy diet. So far, so good. At the beginning of the second trimester, we took a trip to Colorado to visit my in-laws and share our news in person. That was the beginning of the downhill roll of my pregnancy. I’m not sure if it was the altitude or the traveling or my age (38 at the time), but I was in bed for a lot of that trip.

Upon returning, the small issue of constipation that I had been suffering with since conception, began to worsen. Mind you, I’m pretty self-aware about digestive issues, having had Crohn’s disease since 1989. Something was not right and no amount of fiber or hydration was helping matters. Then, the bleeding began. Slowly, at first, but then just slightly more urgently. A visit to the doctor had me come away with the advice to slow down and eat more fiber/drink more water. I followed the advice, the bleeding ceased and I was good for a couple days. Then, constipation would lead to bleeding which would lead to the doctor which would lead to slow down/eat more fiber/drink more water. It was a terrible cycle that I just could not conquer.

One night, just before bed, there was a gush. Just one gush, but a significant one. The monotone doctor on-call told me over the phone to go to the hospital. A friend came to sit in our house with Boo, who remained asleep, and my husband and I drove the 20 minutes to the hospital. I was admitted and stayed overnight, but the bleeding did not return. Baby’s vitals were strong. I was sent home and a day or so later was back in that hideous digestive cycle. I was doing everything I was supposed to be doing, but my body would not cooperate. No more gushes, but as the bleeding kept retuning, I was put on bed rest for the rest of my pregnancy. My baby was 22 weeks old and happy where he was. Wish you could have said the same for me…