Nathaniel was born 1/8/11. After my first ultrasound, I got a call from my OBGYN and she told me that he might be born with a cleft lip. I was referred back to my friend who specializes in difficult pregnancies, which turned out to be the person who confirmed my pregnancy originally. Turned out that he was going to be born with a bilateral cleft lip, the palate was questionable. I was also told that there are usually other underlying conditions, so I was sent to a cardiologist to have an echo. That came back normal. All throughout my pregnancy, his weight was monitored. When I went back for my last visit, the baby had completely stopped growing. We did an amnio to check lung maturity and I was admitted for observation. His lungs were not quite ready. I had two rounds of steroid injections and two days later, he was born. He weighed 3lbs 9.5ozs. Luckily, he was able to breathe on his own. He stayed in PICU for 3 LONG weeks. I struggled with post partum depression, it was tough. When he finally came home, we explained his condition to the two younger kids (7 and 12). My older son knew, so he knew what to expect. When they saw him, they were a little upset, but eventually they didn’t see the clefting anymore. Just like us, they fell in love with him. His lip was repaired at 5 months(it was so cute, he had a perfect little heart underneath his nose), and his palate was repaired at 9 months. He has ASD, VSD, and Pulmonary Stenosis. It was thought that he would have to have a heart cath., but at his last appointment it was decided otherwise and his visits went from every two months to every 6 months. He has had to have his left punctum probed and dilated and has strabismus and at some point, he’ll have muscle surgery. He does have some hearing loss due to fluid in his ears and will have tubes put in as soon as he gets a little bigger. January 27, 2012, he had his first seizure and a month later had a really bad one….it was a few minutes shy of an hour. He was intubated and put in PICU. He had already had multiple visits to the hospital and several nights in ICU. Two weeks ago on a Friday morning, I got a call from the geneticist and he told me he had WHS. I researched it, and just like I did when I found out he might be born with a cleft lip, I freaked myself out. That night, he suddenly had a lot of congestion and began running fever. The following Sunday he went to see his pediatrician and he was admitted because they thought he had pneumonia. The x-rays proved otherwise. I was glad to hear that because my older brother died of pneumonia at 11 months-I didn’t know him. He was born and passed before I was born. To top it off, I was also worried because of what I had read about that and the relation to WHS. So, now he’s being treated for bronchiolitis and I’m having to administer breathing treatments every four hours around the clock. He has PT twice a week, OT twice a month-will be twice a week, speech therapy twice a month because he doesn’t speak yet-just babbles, feeding therapy twice a week plus his dietician, neuro., pediatrics, ENT, and Ophthalmology appointments. I am super busy with him. He still uses the haberman for his Pediasure. He was taking Neosure, but has finally gained more weight since switching to Pediasure on January 27th, he finally broke the 12lb barrier. No one in my household can feed him, they’ve tried, but it’s like he knows. It’s so funny. I have to do it all…meds., feedings, you name it. I’m so thankful for him and I don’t know what I’d do without him, but I’m exhausted. Even still, I love him with all my heart and if I could do it all over again, I would in a heart beat! My biggest fear is the future, when he’s older. I worry that if I were gone, who would take care of him? No one can ever take care of him like I can. I have tons of support, but I still fear the future. Only time can tell what the future holds. All I know is that I will be there every step of the way.

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6 Responses to Nathaniel Alexander Suarez-Introduction

  1. taylorbug says:

    I can relate to everything you said. Nathaniel is so blessed to have a special mom like you. I wish you and your family all the best!

  2. Letty says:

    Thank you so much!

  3. Carissa says:

    You are such a wonderful and caring mother! Nathaniel is blessed to have you. I’m experiencing the exhaustion too, so hang in there you’re not alone. Welcome to the WHS community!
    ~Carissa (Ava’s mommy)

  4. Heather says:

    Oh, the exhaustion! Yes, I think we can all understand the exhaustion of the first year in particular. He is so lucky to have you, but I do hope that you are able to share the workload with someone so that it doesn’t become too much for you.

  5. Letty says:

    He has become more involved than he was before. I am not working outside the house anymore. At first, because I was here alone most of the time, I just did it all and didn’t let anyone help because “no one could do things like me” but as time’s passed, I’ve become more willing to allow others to help. He may not take the bottle with anyone else, but if I’m really busy and can’t get to him right away, someone will put him in his bouncer and feed him baby food. My older son especially. He is very mature for his age and is more aware of everything…including finances because he’s so dang nosy! So, he helps me a lot! My husband also. He usually takes him from me after he’s eaten and will play with him and definately spends more time with him. Now that Nathaniel’s gotten bigger and more responsive, he’s “more fun” and not so “delicate” that my husband enjoys their time together even more. He just wants him to walk already.

  6. shirley bidnick says:

    Belated congratulations on your new baby. I haven’t read Nathaniel’s story before. I read your recent update and wanted to go back to his beginning. So many of these children have similar circumstances surrounding their birth and diagnosis, yet everyone is uniquely interesting. I never get tired of reading about them. Each life is sacred, and every shared birth story is a spiritual celebration.

    I understand your exhaustion and fears. Our children are so dependent. Their well being hinges on our commitment and attentiveness, but we have to find ways to pace ourselves and accept help. Rochelle is 33 years old. I was always a single working parent. I had to rely on others to help me take care of her. I am fiercely overprotective, and I think no one can look after her like I do, but much to my surprise, she enjoys other caregivers. She likes having a break from me. In small doses it helps her grow, and it helps me stay sane.

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