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Our story is long and complex.

My husband and I met in high school and dated for five years before getting married. We got married in March, I graduated from college that May, and by the next Christmas we were expecting our first baby. We were very excited, but then the first triple screen came back with a high risk of Down's syndrome. I had an amniocentesis to see if the baby had Down's, just because we wanted to have no surprises. For the first time we considered that we wouldn't have a perfectly healthy baby.  A few weeks later the amniocentesis revealed that the baby's chromosomes were normal, and that we were having a boy.

My pregnancy progressed normally, I had terrible morning sickness that disappeared by week 12. I didn't show very much, but that was typical for a first pregnancy. By week 25, I went to my last appointment with the Maternal Fetal specialist that we saw for the amniocentesis. My blood pressure was high, but after I lay down for a while, it went down to a normal range. They asked me if I was seeing spots, having headaches, or any other odd symptoms. I was not. I was very happy by this point because we knew everything would be fine, and we got a very good look at the baby with the high tech equipment.

Starting the next Tuesday, I felt awful. I had a bad cold, so I blamed it on the cold medicine. So I didn't take any cold meds that Tuesday, and I still felt dizzy and very tired.  The Fed Ex guy came into our work and told me "wow, you look like you should have stayed home today." I agreed!

After work that day I drove straight to my mom's, I knew something was very wrong. She checked my blood pressure and  it was dangerously high. She and her friend drove me to the hospital while I called my OB to let him know I was coming. The OB on call told me that he hoped the monitor was wrong because that was very high BP. When the nurse took it manually in the ER, we knew the readings were right. My husband met us at the ER, he was very confused about why we were at the hospital in the L&D unit when I wasn't due for 3 more months.  I never went to the Med/OB unit for bedrest, they left me on the L&D unit for the next 4 days in case I had to deliver. They started Mag Sulfate right away, it was miserable. I also got the first of two steroid shots to help Tucker's lungs to mature.

The 24 hour urine tests confirmed that I had severe pre-eclampsia. I couldn't take any lights or noises. After a few well meaning relatives tried to visit on that Wednesday, the visitors were cut off. That Wednesday I got the second steroid shot, which meant that 24 hours after that, they could deliver the baby.

On Friday morning, I hit 27 weeks, and my OB came in to tell me we were delivering that afternoon. It was such a surreal experience, to be in the L&D room with my mom and sister, knowing that in the next few hours I'd become a mommy. It didn't feel right at all. When the NICU doctors came to talk to us, I was very confused. Surely they didnt' think a 1 pound, 13 ounce baby could live? (My cousin was a 30 weeker born at 3 pounds, and she spent several months in the NICU, so we weren't completely new to this world.)

We had the c-section, Tucker didn't make any noise, and they rushed him away. After an hour, Chris went to see Tucker, and took about 25 other family members to meet him. I was knocked out for the next 24 hours, my cousin is a nurse in the Mother/Baby unit and she said I looked like I belonged in the ICU.  By Sunday, I woke up around noon and had a few visitors. I wasn't in a rush to visit the baby, because once I saw him that meant that all of this was real. That he wasn't in my belly anymore, safe where he was supposed to be. Chris helped me to take a shower (I still had IVs) and then he wheeled me over to the NICU. 

Tucker was in an isolette that was pretty tall, and I was too weak to stand for more than 5 minutes. So I couldn't really even look at him. I just looked at him for a few minutes through the isolette and I remember thinking that he was the most beautiful baby ever. I wanted at that moment to give him the world, to make him have the best life ever.

For the first few months, Tucker's NICU stay was typical for a micropreemie being born at 1 pd, 11 oz (he was a little smaller than the ultrasound suggested).  He had meds to close his PDA, he had routine ROP exams starting at 32 weeks. He spent weeks on the ossilating vent, then to the regular vent, then with the help of 3 rounds of steroids, he moved to CPAP then to a cannula. This is when our family had scheduled our baby shower, and we were all so happy to know that he was getting better and would probably be home for his due date. He ate a few nipple feeds through a bottle, and he did fantastic with them. My cousin had been a weak eater, and that was my big fear, that Tucker wouldn't eat like her.

Well, about a week after he was on the cannula, it was obvious that he couldn't stay on it. His little body was too tired, he went back on the CPAP and then back on the ventilator within 24 hours. We knew that he'd have to get a trach tube to remain on the ventilator long term, and he had to at least be around full term weight to get that surgery. We now had an apartment full of baby stuff, and our baby wouldn't be home for months.

He actually got his trach at 3 months old (his due date), and didn't come home until 5.5 months later. His lungs were just not strong enough to breathe without the big hospital vent until January. He even coded in December close to Christmas, and we just knew we'd lose him. Thankfully, he just needed a new longer trach, and he started to improve a little after he got it.

We brought Tucker home on Feb 12, 2007. This began our new life of therapies, doctor appointments, in home nursing, and equipment vendors in our homes. Tucker stayed on the ventilator 24 hours a day until age 22 months. Once he was off for a short time each day, he started walking then running. By age 3 he got off of the ventilator even at night. And 6 months after that, he got the trach out and had a naked neck. This is when the doctors always told us that Tucker would start talking and "catch up" to other kids if he was going to. Having the trach tube made it difficult (if not impossible) for Tucker to talk, and his poor fine motor skills made using sign language difficult.

He did start talking more, but clearly not enough. We had looked into genetic testing when Tucker was 3, and after months of tests, waiting, and more tests, we saw a mitochondrial specialist in Houston who diagnosed Tucker with mitochondrial depletion syndrome. This means that Tucker's cells don't create energy for his body the way that they are supposed to. This can manifest in people through their hearts, lungs, eyes, brains, muscles, or digestive systems. Tucker seems to be most affected in his neurological system, and he also has some muscle weakness and trouble regulating his blood sugar. He also started having seizures at age 5, but thankfully they are not strong.

It is very hard for doctors to decide which of Tucker's issues stem from the prematurity and which stem from the Mitochondrial disorder. We just will never know.  He was hit with two whammies, and he works very hard every day to over come them.

In the meanwhile, we decided that we really wanted Tucker to have a sibling. Once we learned that there was probably a 1:4 chance for Tucker's mitochondrial disorder to occur with another child, we thought we  were done with babies. Well, we changed our mind and after a year of TTC, we found out we were expecting our second baby in Jan 2012. This pregnancy was rough. I had terrible morning sickness that went away around week 14, just in time for asthma to kick in with nonstop coughing. I missed so much work during that time.

I saw the Maternal Fetal specialist because of the severe pre-e I had before.  We did many 24 hour urine tests, and had many ultrasounds. Around week 28 my BP started rising, but the protein in my urine was low. Then around week 31 the protein went up too, but not to a dangerous number. Maybe around 350.

By week 31 I was seeing my OB every week. At week 33, we had an in depth ultrasound, the baby hadn't grown since my previous ultrasound 3 weeks before. So I knew that they'd be talking delivery at this point because the baby's lack of growth is a big sign that something's wrong. I saw my OB that day and she admitted me to the hospital, but to the ante-partum this time. I was on hospital bedrest for 6 days, so I made it to 34 weeks, 4 days. The 24 hour urine tests just kept going up astronomically. She wanted to deliver at 5,000 well my protein level jumped from 3600 to 10,000 in a matter of 3 days, so that's when she decided to do a c-section.

Easton John was born on August 20, 2012, weighing 4 pounds, and screaming. It was the most beautiful sound I'd ever heard. I spent most of my time on bedrest asking to see a NICU dr to ask what to expect. Because I talked to the NICU dr, I knew that Easton would be taken to a side room to be worked on (I was pretty much out of it for Tucker's birth). So I sent Chris with him, I wanted Easton watched like a hawk so that Chris could tell me everything that was done to him. A few minutes later my mom joined Chris to go see why he hadn't come back to tell us anything. Well, it turns out he was holding the baby, Easton was doing great. They were waiting for my c-section to end so that I could get rolled in. So I rolled over in the bed and got to hold Easton before he went to the NICU.

It was hard being on the Mother/Baby unit without a baby again. I asked for no visitors as I didn't know what comment or visit would make me snap or bust into tears. This worked well for me, as I got to rest and really think about my emotions and be in the moment.  I was on the Mag again, so I couldn't see Easton for 24 hours. Once I was off the Mag, I had to be able to walk and move around before I could go to the NICU, so I ended up going see Easton about 36 hours after he was born. He had a feeding tube in his nose, but he was eating every other feed by bottle. He was in an isolette for 6 days, but he never needed any help breathing. On August 28, we got to take him home. It was right before a big hurricane, so it was kind of upsetting, as we got home and then had to pack our stuff up to go stay with family.

Now our boys are 7 and 1, and we are still adjusting to life with two rowdy boys. Tucker is in a self-contained special education classroom at a public school, and he receives ABA therapy at home every weekday. Easton goes to daycare, and he seems to be developing normally except for his refusal to walk. 

Share your Story has been a lifeline for me over the years, and I know that I wouldn't have the same perspective on Tucker and Easton's story without you all. I hope to Pay this Forward by helping the new Share members and NICU and bereaved mothers in the future.


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