Dear Xavier - Two Months (Welcome Home Edition)

Dear Xavier,

For weeks, I have been hoping, praying, and crossing my fingers that you would be celebrating your two-month birthday away from the hospital. Thankfully, God is good and answered my prayers. After 60 days in the NICU, you are finally home.

I'll admit that I'm nervous, especially regarding your need for oxygen. After learning how to use the equipment the other day, I have felt very overwhelmed with this added responsibility and how it makes simple things like carrying you up and down our many stairs or even moving you to get your diaper changed quite difficult. Your oxygen concentrator is quite heavy, and there are so many components; and you are just one tiny 'lil guy!

But, after Day One, I feel that even with this added challenge, it is totally worth having you home. Even though we won't be taking any family outings any time soon, except to your various doctor's appointments and your Lola's house, it is totally worth having you home. Despite the fact that we have to be extra careful about washing our hands and staying germ-free around you, it is totally worth having you home.

It was a little sad saying goodbye to all of the good people who have taken care of you for the last two months. The doctors, nurses, and other staff of the NICU have been so wonderful. Even folks who weren't assigned to you have grown quite fond of not just you, but your sister, as well. I had a difficult time writing our thank you note because nothing can express my sincere gratitude for all of them.

Oh, Xavier, I never realized how scary your birthday was for you until I read your discharge papers today. I didn't know that you entered this world not breathing. You needed CPR - 30 chest compressions - immediately. I've always known that you were my little miracle, but I never knew how close we were to losing you before I even got a chance to know you.

And so we celebrate. We had a lovely welcome home dinner with your lolos and lola, and even some special visitors from Michigan. Your Lola Janet and Lolo Ed drove down to see you!

I am pleased to say that even your sister is glad that you are home. After her initial shock of seeing you in the car seat next to her, she has warmed up to your presence and has spent a good chunk of the day giving you kisses and examining your ears, fingers, and toes.

Welcome home, my baby boy. I'm so glad you're here.

Stay healthy and strong.

Love,

Mommy

Mixed Emotions

Assuming the next few days are uneventful, it seems as if Daddy's Big Guy (who, by the way, is a whopping six pounds, three ounces) is coming home this weekend. For real, this time.

And now I'm more nervous than ever.

I always knew that Xavier would be coming home on oxygen. He hasn't spent more than a day or two without that nasal canula, and he's always needed that extra whiff of oxygen...especially during feeds.

However, I never put two and two together to determine WHY he was on oxygen.

Apparently, my lil' guy has chronic lung disease (also known as bronchopulmonary dysplasia or BPD) due to the fact that his lungs are underdeveloped, which is a common problem in preemies. As a result, he is more susceptible to infections, such as RSV...so much so, that he will require monthly injections to ward such infections away. In the meantime, he needs to essentially be "under quarantine" until his lungs develop new tissue, and he gets stronger.

So all that care that we went through to keep things germ-free when Lissie was a newborn? Well, we have to multiply that to the nth degree. Basically, he's never leaving the house. Ever. Especially with flu and cold season around the corner, I have to be even more careful when I bring Lissie to playdates and other outings, so that I can make sure she remains germ-free so as not to pass anything on to her brother.

And I can't help but think that this is not how I envisioned things. At all.

I'm still supposed to be pregnant. 37 weeks. Every time I see a pregnant woman or a healthy newborn, I end up feeling sorry for myself. I didn't intend for my son to be born two and a half months early. I didn't plan on spending the summer in the NICU. I don't want to have to worry about oxygen levels and germs and being scared that he will get sick and end up back in the hospital.

And, with that, while I'm excited for us all to be under one roof, and I'm glad that I don't have to make daily trips to the NICU, and I am soooo grateful that my son is healthy enough to come home, I am also terrified of caring for him without nurses and doctors just a step away. Especially since he is in such a fragile state.

Not to mention Lissie.

Oh, dear. We've started prepping her for The Big Day by placing her baby dolls in places where Xavier will be, such as the swing or the bouncer. Let's just say, she's not exactly graceful.

Plus she has long since associated Xavier with food (since it keeps her quiet and trouble-free long enough for us to feed him ourselves, so she always asks for "'nacks" as soon as she sees him), and I have a feeling she's going to think that she will get to eat a constant feast since he obviously isn't going away. Yikes.

The poor girl has no clue what's about to happen. And part of me is sad that she's no longer going to be the baby in the house anymore. Which is why we had one last Mommy/Lissie day today at the park.

All of our lives are about to change in a drastic way. And I'm excited and terrified and nervous and sad and ecstatic all rolled into one.

I can do this. Right?

8 Weeks and Anxious

Tomorrow marks the 8th week that Xavier's been in the NICU.

And it is wearing me down.

It doesn't help that I've noticed that Xavier's one of the oldest babies in the NICU. All of the babies that were there when he first arrived have long since been discharged. Every time I see yet another baby leave the hospital, I can't help but feel sad. Of course I'm happy that a baby is healthy enough to go home, but I just wish that it was mine.

It doesn't help that last week the doctor told us that he's doing so well that he'd most likely be discharged before week's end. Well, that week has come and gone and we're still there and, apparently, no one wants to tell us another estimate for when we can all go home.

It doesn't help that nurses have said to me, "Wow! He's been here for a long time!" and "You're still here?" I know they don't mean it in a bad way, but it is still disheartening to hear. It's not like I want to still be in the NICU or can help the fact that he's still there.

It doesn't help that the only reason he is still there is that he has regressed with his bottles and is still getting at least a few feedings via tube. I wish so much that there was some way that I could teach him how to do it so that we can just go home already. But, alas, it is a development thing, and he just isn't mature enough to get the concept down.

He can come home when he has had a few days straight when all of his feedings are via bottle or breast. Every time I hear that they had to tube feed him, I just want to cry because I know that it means that we'll be there for at least a few days longer.

Our home is finally ready for him. The crib is set up. His car seat is installed. His clothes are all washed. All we need is him.

All we need is him.

Blessed.

This week marks both Xavier's sixth week and Lissie's seventeenth month since their birth dates.

And, yes, I've said it before, but boy, am I blessed.

I'm blessed with two healthy and beautiful (so what if I'm biased?) children. I'm blessed with a husband who loves all of us and does everything he can to provide and care for us. I'm blessed with parents who live nearby and can dote on their grandchildren and help me adjust to my new life with two little ones.

And I'm blessed with dear, dear friends. Friends who made meals for us while we go back and forth to the NICU. Friends who scheduled playdates with Lissie so that she can still feel a sense of normalcy and so I can spend some time with Xavier without worrying if I'm running out of snacks. Friends who call to cheer me up or just check in to make sure we're doing okay.

Yes, indeed, I am blessed.

An update on Xavier: We're onto his sixth week in the NICU, and what would have been his 35th week of gestation. He is now a whopping five pounds, five ounces. He has outgrown some of his preemie clothes. While he needed a second blood transfusion last week, his red blood count is now back to normal, and he is doing great. He is working really hard to master the sucking reflex so he can take his bottles.

He takes about every other meal with a bottle, while the rest are still tube feedings. It takes him a while to get his bottles down, as he sometimes forgets to breathe and swallow, but he's definitely learning and progressing. Once he gets this skill down, coming home will be right around the corner!

And a Lissie update: Let me just say, I love this age. Lissie is such a silly goofball.

She observes every little thing we do and then mimics it. She has her own "chef's kit" so she can "cook" while I'm cooking.

But my favorite is when she found a bottle of shampoo and was pretending it was lotion:

Lissie is also quite the bookworm. She loves to read in the car.

She loves to check out books at the library.

She loves to take EVERY single book out of her book bin and climb into my lap for a story.

She is also starting to get used to this brother of hers. Her favorite things to do when she visits (aside from eat her snacks and play tag and peekaboo with the wonderful doctors and nurses) are giving her brother kisses and pokes.

It's hard to believe that these two kiddos are mine. How richly am I blessed!

Now we just need for Xavier to come home....fingers crossed that it's soon!

Dear Xavier - One Month

Dear Xavier,

Every time I look at you, I see a miracle. I am in so much awe at the sheer beauty of life. The fact that your tiny (now four pounds, three ounces!) self is supposed to still be growing inside of me at 32 weeks in utero and, yet, despite the circumstances regarding your early arrival, you are thriving, makes me one proud and blessed mama.

Your cute little nose and energetic personality has warmed the hearts of not just your family, but the NICU staff as well. All of the nurses and respiratory therapists just dote on you (and your sister when she visits!), even when they are not your particular caregiver that day. They describe you as "sweet"...until right at the three-hour mark, when somehow you know that it's time for a feeding. That's when you turn into a "spunky" and "wild" baby who somehow manages to move all over your isolette to let everyone know you are hungry. (You must get that from your sister. And daddy.)

Even though your gestational age is just 32 weeks, the staff tells us that you act like a much older preemie. The fact that you know when it's time to eat is just one reason they think so. You are also starting to master the all-important sucking reflex, and it looks like you may be able to start bottle feedings sooner than most babies. You are already off of oxygen and are breathing room air (which makes mommy happy, if only for the reason that she can see your entire sweet face with no canula in the way). And, finally, the bili lights are gone and your blood cell counts are normal, all of which are reasons why they let you "graduate" into the part of the NICU for more stable/less critical care babies.

As far as your sister goes, don't hold it against her that she doesn't like to stay and hang out with you long. She is at the stage where she likes to explore everything, and she gets very upset when she is strapped in her stroller and not allowed to wander the halls of the hospital. She loves visiting you, if only because she knows she gets snacks to help prolong our stay. We practice every day when we are at home to prepare for your arrival with the help of her baby dolls, and while she is still getting the hang of things, we are confident that she will be as ready for you to come home as we are.

We can't wait 'til the day that you do get to come home with us. It will still be a few more weeks, at least, as we are still waiting for you to take your meals solely from bottles, as well as sleep in a regular crib for a few days instead of the isolette. But everyone seems confident that you will get the hang of things sooner rather than later, so hopefully we'll take you home soon. Just continue to grow bigger, develop well, and stay healthy.

We love you.

Love,

Mommy

P.S. You have also captured the hearts of our family and friends. Your godmother threw a celebration for you last weekend in honor of your safe arrival and health. See all the love that there is out there for you? You truly are blessed!

Xavier - Two Week Update

My son is two weeks old today. After a crazy first week, where he underwent phototherapy for jaundice, treatment for a heart murmur, and caffeine therapy for apnea, we had a pretty positive second week. His jaundice bout seemed over, his heart murmur was no longer, he didn't have any more apnea spells, he was increasing his feedings and gaining weight - to a whopping grand total of 3 pounds, 8 ounces!

Justin, Lissie, and I visit Xavier at least once a day - usually in the mornings to correlate with his 11 am feeding and Lissie's prime awake time. During our visits, we are able to hold him for about twenty minutes, take his temperature, change his diaper, and help with his tube feedings. It is the highlight of my day to be with my family of four, even if only for a brief period.

Today, though, we arrived at the hospital and noticed that the bili lights were back. The doctor came and informed us that Xavier's jaundice levels have increased quite a bit and that they wanted to put him back on phototherapy. She said that it was most likely related to breast milk - and that they may take him off of it for a day to see if it was something in the milk that was causing his bilirubin levels to increase. But she also said that she wanted to do bloodwork to rule out any other possibilities. He also had five apnea spells yesterday, to top everything off.

Naturally I felt like crying. One, because after a week of progress, I felt we were taking a million steps back. Two, because I was already having issues with my milk supply and to add the possibility that there might be something "wrong" with the milk, did not make me feel very good. And three, because of the light therapy and the fact that he had a slight temperature, I wasn't able to hold Xavier in my arms when all I wanted to do was give him a big hug and reassure him that he was going to be okay.

This afternoon, while Lissie was napping and after Justin had left for work, I received a scary phone call. I immediately knew it was the hospital, and I answered it with much trepidation. It was the doctor. I knew that this was not going to be good news.

Apparently, Xavier's bili levels were still high, even though they had dropped two points. They were able to rule out breast milk jaundice, but they felt that he may have some sort of viral infection. And then she started speaking in medical terms, and all I heard was "red blood cells" and "is going to need a blood transfusion." Immediately, the tears silently started streaming. I tried my best to stay upbeat, and the doctor was very kind and said that all of these issues are very common in premature babies, and that even though the term "blood transfusion" sounds scary, he was really only receiving one tablespoon of blood (which to me wasn't really reassuring since my baby boy is a tiny guy to begin with). She said that, with my verbal permission, she would go ahead and get started on the transfusion and hopefully by the time we visit tomorrow, she'll have more answers.

When I got off the phone with her, I just started bawling. Not knowing medical anything, I immediately called Justin who called the hospital so he could translate the diagnosis to me in terms I could understand. Of course, I also cried to my mother. Thankfully, Justin talked to the nurse and was able to reassure me that this was, indeed, a common thing in preemies, and that our baby was under the best possible care. My mom, too, reminded me of the power of prayer, and she told me that she would visit my baby since she knew that I wouldn't be able to get down there any more today.

This is, without a doubt, the hardest test of faith that I've ever had. I try so hard to remain upbeat and positive about everything and know that all I can do is trust in God's plan for us, but sometimes all I can do is cry. It doesn't help much that my hormones are still crazy out of whack so the desire to start crying is with me at weird, random moments. I can't even look at a pregnant woman's belly without feeling sadness, anger, and hurt. But at the same time, I'm terrified of going through this again, and the thought of ever being pregnant again makes me feel nauseous.

I feel like I've let Xavier down. I wasn't able to keep him safe in my womb myself, and now he's struggling. I feel like I'm letting Lissie down because even when I'm not at the hospital, I'm constantly wondering how Xavier is doing...on top of not being able to carry her due to doctor's orders. I feel like I've let Justin down because this wasn't our plan at all. And all of it is very overwhelming, even though, I know deep down that my feelings are irrational.

But, as my mom said, all I can do is hope and pray for the best and understand that there is a reason for everything we go through in life.

I'm sure that Xavier would appreciate any spare thoughts and prayers, so if you've got any, please send 'em on over.

Here's hoping for a better tomorrow and more progress instead of setbacks so we can take a healthy baby home soon and fully begin life as a family of four!

Dear Lissie - Big Sister

Dear Lissie,

I haven't done a monthly letter to you since your birthday, but with the recent events that have happened lately, I wanted to make sure that you know that you are still special and very much loved.

Oh, Lissie. We have been slowly bracing you for Big Sister status, which we assumed would take place in September. We bought you some baby dolls, complete with a baby stroller, and you love walking them around your playroom and poking their eyes and feeding them and dropping them on the ground when you have moved on to a new toy.

We have been practicing saying words like "brother" and "Xavier" and "big sister," and you even knew to point and kiss my belly when we ask "Where's your brother?" You may not have really known what that meant, but we were off to a good start.

I also had big hopes for us this summer. We were going to spend the bulk of the time lounging at the pool and playing with your friends, pre-brother. We even had a family vacation planned for later this month, complete with all of your lolos and lola. I also envisioned a "day of Lissie" just before Xavier arrived - where we would do all of your favorite things and eat all of your favorite foods, so you would know how special you are even when your brother arrives.

Well, it turns out God had other plans for us. Now there is only a mere 15 and a half month age difference between you and your brother, something that none of us had even remotely anticipated. Thankfully he is healthy and in good hands in the NICU, and we are just waiting for him to grow stronger and bigger so we can take him home in a few weeks.

I know you don't understand why we go to the hospital every day. And I know you think it is fun to tap on Xavier's incubator and poke his feet when we hold him and you don't understand why mommy tells you not to give him your precious puffs, but I can already see that you have the makings of a Good Big Sister already inside of you.

Because you and your brother are so close in age, everyone tells us that you two will be best buds. You will naturally be protective of him because he is "yours" and you two will eventually have all the fun in the world together. We can't wait to see how your relationship unfolds and develops.

In the meantime, though, I just wanted to make sure you know that we love you, and will always love you, very much.

Congratulations on reaching Big Sister status! We know you'll be awesome at it.

Happy 16 months!

Love always,

Mommy