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THE DAMRON DOLLS

kelly d

November 2008

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TAKE ACTION FOR THE MOD

Jul 21, 2008 03:22pm (EST)

It's been over 2 months since I've posted to this blog. Where does the time go?

I received a notice from the Arizona Chapter and I assume most of you probably received a notice from your chapters too, but just in case you didn't there is an ACT that the MOD would love to see passed. It's easy to take action. Visit the March of Dimes website and contact your representative.
March of Dimes

Posted by kelly d | Comments: (3) | Permalink

NEC

May 07, 2008 10:11pm (EST)

more about my twins...

When Kaley and Ashley were 9 days old, we were told it was possible Kaley had a preemie disease called Necrotizing Enterocolitis (NEC). They stopped her feeds and she was placed on 10 days of antibiotics. She looked sick. She was bloated, pale and obviously uncomfortable. It was our first experience with the continual ups and downs of the NICU.

Initially, we didn't know enough about NEC to be scared to death about what might happen to Kaley. We talked with the medical staff ALL of the time and read short blurbs in books about premature babies. We didn't do any research online - sometimes ignorance is bliss.

My mom had a friend who was a grandmother of a premature baby diagnosed with NEC. It was all my mom could do to stay positive when she talked with me. At the time I didn't know what was going on with the other baby as my mom didn't share stories with me (thank goodness), but I would later find out he had a permanent feeding tube from the disease. I know my in-laws were online researching it too - my husband didn't relay any of the information they learned (again thank goodness).

My place was by Kaley's bedside. I am glad that I was ignorant about NEC, the fatality rates and long-term consequences. Since I didn't know enough about NEC to create negative scenarios in my mind about what might happen to Kaley, I was permitted to convey only positive thoughts onto her.

From day 9 to 5 weeks of age, Kaley would have good and bad days. She hardly ate any food those first 5 weeks of life. She had her first survey at 5 weeks old and barely weighed 4 pounds. I can still picture the scene of me and Dave holding each other in the empty hallway just outside of the surgery doors as they wheeled her away.

The picture below is a bloated Kaley just before surgery to remove her obstructed bowel. They remove 50% of her large intestine and she had a colostomy for a few months before it was reversed.

Kaley before surgery

Posted by kelly d | Comments: (2) | Permalink

VALIDATION & REASSURANCE

Apr 30, 2008 01:46pm (EST)

Last night I joined a group of women to plan events for another charity I volunteer for. Like the MOD, this group gives me an outlet and a sense of belonging. Unlike many of my MOD friends, a few of these women have experienced both infertility and prematurity. One gal had triplets and another quads (I cannot imagine how hectic her life is).

The women with triplets, I'll call her Tonya to protect her identity, is a former nurse. She did a rotation in the NICU as a nurse. It was reassuring to hear from her she was naive about her triplet pregnancy and how they would treat her preterm labor. Although she had taken care of small preemies she had forgotten how small and fragile they were. She took a tour of the NICU while hospitalized and when she returned to her room said to herself "Suck it up Tonya, you're babies need more time to develop inside of you." After 6 weeks in the hospital, her triplets were born healthy at 33 weeks and are thriving today.

While I was hospitalized I had no desire to visit the NICU. The nurses asked me on more than one occasion if I wanted to go on a tour. I was irritated they kept asking as I kept telling them I didn't need to see babies struggling to survive to keep my ass in bed. It wasn't like I was disobeying the physician instructions. I only got out of bed to go to the bathroom and I only showered every-other day. I wasn't walking the halls or running marathons. To some extent I think they wanted to "prepare" me for what my twins were going to look like when they were born. I didn't want to see it and I didn't want to believe that my girls would be born before 36 weeks.

My friend with the quad spent 3 months in the hospital. Her smallest was bigger than my biggest. Amazing with four babies that most of them weighed almost 3 pound each. Like me, she was pretty traumatized by their premature birth. And although her babies didn't have any complications, she admitted last night she has post-traumatic stress related to her 3 month hospital stay. Today she and her quads are doing well - they're almost the same age as my girls.

A woman at our meeting just found out she was pregnant. Based on her hcg results, it's possible she's pregnant with twins. She was listening in on our conversation about preterm labor, bedrest and prematurity. One gal said to her, "I hope we're not scaring you." I thought, I hope she listens and makes an effort to be more educated than I was about the risks of multiples.

It's a fine line. When a woman is soooo excited she is finally pregnant after YEARS of struggling with infertility, how do you "suck-it-up" and offer your congratulations when you know there is a possibility (1 in 3 with twins) her pregnancy will end too soon? As a mom of twins I know it's a double edge sword for me - on one hand I know how blessed I am to have my girls and on the other I want to warn people of the horrific things that might happen.

Posted by kelly d | Comments: (2) | Permalink

PROMOTING THE MOD

Apr 17, 2008 01:54pm (EST)

I've been blessed to be an active volunteer with the Arizona Chapter of the March of Dimes as the Co-Chair of the Family Teams Committee. It's been fun planning for this years walk, which is Saturday April 19th for the Phoenix Metro area.

On two occasions our story has been featured on Ch. 12 News. The first one was a formal interview with me while Kaley & Ashley sat next to me holding dolls, one that resembled them at their birth size and the other similar to a full-term baby. It was too cute and they had a great time getting all dressed up and being "on camera." The second was yesterday with a cameraman coming to their school to film them in action. Watch the short clip at: Ch. 12 news clip.

This is our 3rd walk since Kaley and Ashley have been born. One challenge facing the Arizona Chapter is that walkers and teams don't return. For some reason people participate with a vengeance when their babies are first born and then they fail to participate in future years. Our FTC is trying to figure out how to get teams to return year after year so we started contacting teams who have participated in years past. It seems like this strategy is working a little, but not as good as we hoped.

A friend of mine mentioned that she just wanted to move on and be happy and forget all of the sadness (she was referring to infertility, but I think it can apply here). However, if we don't keep raising funds for the MOD for research our kids might experience the premature birth of their children and the cycle will never end.

Any ideas on why people don't come back year-after-year? When I think about the cancer walks (specifically breast cancer) they draw over 40,000 people each year (in Phoenix) while our MOD walks hopes for 6,000 people in 2008. I don't understand why people aren't as interested in supporting babies. Any insights you might have would be great!

Posted by kelly d | Comments: (0) | Permalink

THE DAILY REMINDER

Apr 09, 2008 01:27pm (EST)

I had all intentions of telling my story in order, but where's the fun in that? For some reason I started thinking about the scar on Kaley's belly (the length is from side to side-it's BIG) from her NEC surgery. Maybe it's because I've pull out the name of the skin paste we used to use to protect her skin from her stools since the colostomy bag wouldn't stay on and recommended this product to 2 women in 2 different online communities.

For most of us, there are the emotional scars and memories that will last our life time. Each day I thank God that both of my girls survived their prematurity as I know a few women who were not so lucky.

Recently, Kaley and Ashley found pictures of Kaley's colostomy (it was reversed when she was 6 m/o) and they've been asking questions. Ashley says "I don't have a scar." I say, "No you don't honey." Although, that's not entirely true, as I can still see the scars on her little hands a feet from the IV needles, but I don't bother to tell her they are there or what they are from. Kaley looks at her belly and says "Someone cut me. I had a boo boo." To make sure she doesn't feel like a freak, I say, "Mommy has a scar too." Thanks to Ashley who was breach so after delivering Kaley naturally, I was put under for the c-section for Ashley.

One day a gal at their day care facility asked if K&A had been attached at birth. I did my best to keep a straight face (they're not identical twins so there's no way they would have been attached and Ashley doesn't have any scars-hum...). Anyway, I explained that Kaley was sick when she was a baby and had to have surgery. I'm not sure what I'll tell Kaley to say to people when they ask what her scar is from. I'll probably leave out the word "colostomy" so that people don't freak out and treat her like a disease.

Sometimes it bums me out that I have this daily reminder that I by-passed nature (i.e., IVF) and couldn't hold my babies in longer. On other days, I'm thankful for Kaley's scar to remind me how incredibly blessed I am to be the mother of two such beautiful girls.

Posted by kelly d | Comments: (4) | Permalink

FIRST 9 DAYS

Apr 04, 2008 09:15am (EST)

I wish I would have known about the Share community when my girls were in the NICU. I would have used it to ask questions and seek support.

My girls were in amazingly good condition when they were born. Kaley was only on the vent for a few hours then put on CPAP for another 24 hours. Ashley was on the vent a little longer, but less than 12 hours. She was on the CPAP for 36 hours. For two little girls born at 30 weeks this was awesome!

The first time I saw K&A they had on the CPAP. It took up their whole face. I remember asking a million questions about the CPAP. What it was, how it worked, how long a preemie would need to have it on. I wasn't expecting my girls to be free of the CPAP within 48 hours of their birth. They seemed so fragile to me and the little that I knew about their development was that their lungs were still immature.

The nurses seemed a little nervous K&A were doing so well. "So well" being a relative statement. The screaming machines as they stopped breathing made me wonder why the CPAP wasn't still in use.

As most of you know or can relate, good times in the NICU only last for so long. On day 9, we received a phone call from the Neonatologist at 5:30 a.m. When the phone rang, I knew something bad had happened. We were told to get to the hospital ASAP. Since my husband answered the phone, I heard second hand what the doctor had said. My husband, Dave, wanted to shower and get ready for work so that he could leave directly from the hospital. My advice - get your ass to the hospital. Do not stop to shower, go, go, go!

When we arrived at the hospital we learned that Kaley had blood in her stool. It was serious. They didn't want to diagnose her without more results, but they suspected she had Necrotizing Enterocolitis (NEC). The Neonatologist informed us that some babies do die from NEC, but most don't. To some extent, she is right, but a lot of babies DO die from NEC.

After learning about Kaley's condition and her new routine, 10 days of antibiotics, no food, regular x-rays, measuring of her belly, etc. I opted to step out of the Pod for a potty break. When I returned it was every mother's worst nightmare in progress. The nurse had given Kaley a pain medication, fentanyl, before getting the vent ready. The pain medications obviously kicked in because Kaley stopped breathing! The Neo was screaming at everyone to get in place and get the vent ready, while she bagged Kaley to get oxygen inside her little body. Kaley's oxygen saturation dropped to 3 - not good!

I stood back in horror. My husband and I held each other as we both watched the chaos around our daughter. When Kaley was finally on the vent and the machine was breathing for her, I asked him what happened and he relayed the above details.

The Neo walks up to me and before she can say anything I blurt out "I was so scared." She replies calmly, "The NICU is a very scary place." No Sh*t, I thought.

This was to be only one of many scary days in the NICU. If you're wondering about Ashley, she was fine. She was our feeder and grower. One of the NNPs told me that babies that do good in the NICU tend to be more of a hand-full as they grow up. Ashley is starting to prove her right at 3 1/3 yo she is a lot more work than Kaley!

Posted by kelly d | Comments: (4) | Permalink

A LITTLE ABOUT ME

Mar 31, 2008 09:25am (EST)

My story in short version...my husband and I found out we could not conceive a child naturally. My hubby has male factor (MF) infertility. We used a procedure called in vitro fertilization (IVF) to try to become pregnant. IVF was our only real option due to the MF infertility.

We were lucky, sort-of. We did become pregnant via IVF with twins. I elected not to learn their sexes as I wanted some part of my pregnancy to be free of medical technology, manipulations or information.

At 24 weeks, during a routine exam, the ultrasound tech noticed my cervix was short, dangerously short. Since I was already at the hospital, they sent me to triage for monitoring. I guess I was having painless contractions that were preparing my body for labor. I spent one month in Antepartum, most of it on Magnesium Sulfate (Mag). I was sent home at 28 1/2 weeks to wait out the rest of my pregnancy on bed rest.

At 30 weeks, all hell broke loose. Actually, it was my water or pPROM. The doctors tried to stop my body from going into labor, but to no avail. I had 2 injections of trebutaline to stop my contractions, which started about 12 hours after my water broke. Since the treb didn't work they started getting me ready for a c-section. Before the OR was ready, baby A was crowning. My contractions were coming hard and fast. I think it only took 3 pushes for baby A to come out. Baby B was breach so I was put under general anesthesia since I hadn't had an epidural or spinal tap.

I waited in the recovery room for more than 8 hours since no room was available on the NICU floor of the postpartum unit. I was wheeled into the NICU to view my daughters for the first time. We name Baby A, Kaley, and Baby B, Ashley. I spent a whopping 5 minutes in the NICU before being wheeled to my room. I didn't touch or hold my babies until 24 hours after their birth.

Kaley was 2 lbs 11.6 oz, 15 1/2 inches and Ashley was 2 lbs 9 oz, 15 inches. We'd spend 7 weeks in the NICU. More on that later, this is enough for today!

Below are pics of K&A under the photo therapy lights, day 3. And me feeding them - it's a lovely photo of myself.

Kaley (lt) & Ashley (rt) 10-9-04

Kelly with both

Posted by kelly d | Comments: (2) | Permalink

NO GUARANTEES WITH FULL-TERM BABIES EITHER

Mar 24, 2008 06:12pm (EST)

Today I had a late lunch with a women seeking advice about a project she wants to pursue, a book. Her book is to be about how to live with the loss of a child.

She told me the story about her first born child, a baby born full-term and at a healthy weight. However, he had a cleft palette and heart problems. She told me how she blamed herself for the challenges her baby faced. She wondered what she did wrong during her pregnancy. Nothing. She wondered what she could have done to prevent his ailments. Again nothing.

She has some benefits I didn't as I processed the premature birth of my twin daughters, born at 30 weeks gestation, she didn't undergo infertility treatments that resulted in a twin pregnancy. However, I didn't choose for my husband to be infertile and we didn't choose to struggle in our efforts to become parents, first with infertility then with the premature birth of our girls.

Although, there is one lesson we should all acknowledge: many of us did/do nothing wrong. Many women carry their twin babies to full-term. Why was I to think I couldn't be one of those women? I did everything right in my pregnancy.

I'd love to know if there are other women who experienced prematurity after their fertility treatments. How do you process the experience of your infertility vs. the premature birth of your baby/babies?

Posted by kelly d | Comments: (3) | Permalink

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