A New Chapter -- Home at Last!

Weight: 8 lbs
I finally got some pictures uploaded. Warning...there are a bunch of them (and this is just a portion of what we've taken)! They are organized in opposite fashion as the previous albums, rather than starting with the most recent photos, this album starts the day he was discharged on August 29 through today. A lot of people have been asking to see pictures of the nursery, so there's a few shots of that. I've also added a couple new photos to the "Month 5" album, specifically for the Bama fans. Enjoy!Wednesday, September 5: Where do I start? We’ve been home one week today and I have to say that everything is going great so far. I’m sorry I did not get this updated before now, as I know everyone has been anxious to hear if he made it home and how things are going… but I guess this needs no explanation… new baby in the house!

Last Wednesday was full of some wonderful moments (the day of discharge). We were so excited to go get him, although very nervous, and the whole event seemed so surreal. I bought him an adorable “going home” outfit, but learned when I got to the hospital that it was WAY too big—they were shorts/bibs and the holes that should wrap around his upper thigh were all they way down to his toes. So he went home in a standard ol’ onesie, but oh well… nothing in this whole process has allowed me to plan anything! It was actually the second outfit we bought for this occasion, the first one being way too small. Four months ago when I bought his first set of preemie clothes, I bought a “NICU Graduate” t-shirt, thinking that one day he’d wear it home when he finally broke out of the NICU, but he ended up being in there so long that he outgrew it about two months ago!

It was a weird feeling to take off all his leads that were attached to the hospital monitors. It was liberating, but strange…. like, are you sure we don’t need these on him a little longer? He fussed a little when we buckled him in the car seat, but once we got him to the car, he was almost asleep before we even got out of the parking garage. I figured he’d be bothered by the new scenery and the car ride, but he seemed very comfortable and I think he really liked it. Leaving the NICU was very emotional for us, although we looked forward to this day, it was sad for us to leave the special people and to close the door on this chapter of our lives. So many people came over to say goodbye to us and Lucas. Sharon (the social worker that we’ve been working closely with) told Lucas, “this is a one way door, we don’t want to see you back here again. We only want to see you on the outside of the NICU, when you come for your follow-up visits!”

As I mentioned in my last update, it is such a strange feeling to finally get this part over, but the emotion of the past five months is now here staring us in the face. Friday morning, I took him in his room to rock him there for the first time (he has the best room in our house in the morning, getting tons of light pouring in the windows, and it is really serene early in the morning). He was just so peaceful and beautiful sleeping there, and I kept thinking as I watched him… How did they do it? How did these doctors and nurses get him HERE… from such a tiny, frail, little being when he came into this world? How can medicine and equipment take the place of a womb for such an early arrival? Who knew that they could even save a baby born that early. How did they get him to this point… laying in my arms being rocked in his room at home? I just sat there and cried, holding him close to my chest as I rocked him – tears of joy, as well as sadness, and disbelief that he was really there with me. Bran came in to sit with us, also taking in this moment, as we talked about how much we couldn’t believe he was finally here with us, how lucky we are, and how amazed we are with him (we have these conversations often). It is all so overwhelming, we are thrilled that he is home with us and is doing well, but we are just so emotionally raw from the intense roller coaster ride.

Enough emotion… overall, he is just great and we are really enjoying him! He is a very quiet and just an overall good baby. Maybe having a quiet baby is the silver lining to all of this! He hardly ever cries, unless you are changing his diapers, giving him a bath, or a few times he’s had a belly ache… other than that, he’s very quiet, he just gives you a few little adorable grunts when he’s waking up and wanting fed. They told us to expect that he’d have trouble sleeping in the new environment, but he didn’t have any real difficulty adjusting. He didn’t sleep for several hours when we brought him home Wednesday night, as Gran and GranDan were visiting, but after that, he slept great through the night (except for the wake-ups every 2-3 hours, of course). They also said that he may have trouble adjusting to a quiet household and to make sure there is a TV or radio on in the background when he’s sleeping, but we’ve already stopped doing that, he seems extremely comfortable at home, especially during the night. I honestly believe he knows he’s home where he belongs, away from all the chaos of the hospital, and is truly content.

We’re still working on settling into our routine, not getting a lot of sleep, but that is expected. We're trying to learn to be extremely germ-conscious at home for his preemie immune system. I'm so paranoid about him getting sick until he's a couple months older and his body can compartmentalize an infection (God forbid we ever have to go through a shunt infection again). We’re trying to wean into more nursing—less bottles, so Mom can get off the dreaded pump after five months! Its interesting when you think about it, most moms are trying to wean them onto a bottle and off of nursing at this age, but we’re working on just the opposite! He’s doing well with it, and every day we’re getting into more of a schedule. He’s still struggling quite a bit with reflux and is on two medications for this… so we’ve had to do a lot of outfit changes! Both Bran and I have been initiated already by getting soaked--he threw up down my shirt once, and all over Bran when he didn't have a shirt on! Ha. He has a nurse that comes into our home twice a week, and we go to the pediatrician once a week. Our pediatrician has been really great and has already called to check on him a couple times to see how he’s settling in. We talked to him every day for the first three days, and saw him again this morning. He said he is very pleased with how he’s doing so far. We also have a page full of various specialist appointments throughout the next month at Children’s… he’ll see the Pulmonologist for his lungs and the monitor, Neurologist for his neurological development, the Opthamologist for his ROP test, the Audiologist for another hearing screen, the Urologist to discuss repairing his hernia in the next couple months, and the Plastic Surgeon about eventually repairing his nose. He’s going to be a busy boy, but hopefully these will taper off after the first couple months as he starts to progress.

How’s the “at-home monitor” working out, you are thinking? Well, after three days of nothing but shrill beeping for false positives (due to shallow breathing, not because he stopped breathing), we made an executive decision to turn the @%$#*! thing off. He hasn’t had apnea episodes in many weeks, maybe even a few months, and the doctors were not even going to send him home on a monitor when they planned to discharge him a few weeks him before he had the last surgery. The only reason they decided to do it, was because he had some bradys right before surgery, but that was all due to the pressure in his head, that the surgery took care of. We really don’t think he needs to be on it, and the nurse even agreed that she was surprised he was on it given that an apnea episode was so long ago. We’re going to try to see the Pulmonologist earlier to see if we can get it officially removed (the machine stores in memory what causes the alarms, so we’re hoping when he sees what has been happening, he’ll agree with it).

My Mom arrived on Sunday and is staying this week, so needless to say Lucas is getting very s-p-o-i-l-e-d! He loves being held and spends very little time away from anyone’s arms, and he’s definitely won the heart of Grandma! It has been so helpful having her around and it is nice for me to get to watch them bond. Even if Grandma wasn’t here, I know he’d still be getting spoiled by Mom & Dad… after carrying the guilt of having him taken so early and missing him so much, I think he deserves all the comfort and arms wrapped around him that his little heart desires!

I will try to post an update about once a week, unless anything major happens. And of course, I’ll include as many photos as I can! I should have some new photos posted later today. I’m also working on a way to put a few videos up, so stay tuned for those in the coming weeks. I want to say one more time how much we appreciate everyone's support and love. It has been truly amazing to feel everyone around us, it is as if you've been right beside us holding our hands to get us through this. We know we are truly blessed.