Now What?

Here we are. At home. With a baby.

Even with 7 months of “practice” this is weird. When does he sleep? When should he eat? Does he need a bath? Why is he crying? Does this poop look right to you? Where are the nurses to tell us what to do?? (We miss you Dany, Leora, Kelly, Catherine, and many more!). So far we only had one freak out where we called the NICU for advice (when Benjamin spit up his anti-fungal immediately after taking it {for the record they said it is safer to skip the dose in that instance}).

That said, we are getting the hang of it and so is Benjamin.

Getting a bath makes you sleepy!

He has been a little difficult to feed still – his reflux has gotten worse since we’ve been home, but we haven’t been too far off from our feeding goal each day and he has still been gaining weight.

And although he is home from the hospital, Ben still gets lots of medical love. He had his first visit from the visiting nurse the day after he got home and it went well – we’ll have at least two more visits to make sure everything is still going smoothly. Then this past Tuesday, we took Ben in to meet his pediatrician for a full check up. The doctor was impressed by everything Benjamin has overcome already and thought he was doing fantastic. He also started the process for approvals for his Synagis (RSV) shots and pointed us in the direction of a pediatric gastroenterologist to help us with the reflux and to keep an eye on his liver (the anti-fungal he is on is a bit rough on livers).

Next week we’ll be back up to CHONY for some follow-up appointments – with his eye surgeon and the surgeon who fixed his hernia.

We also started the ball rolling for his early intervention services he is eligible for due to his prematurity. We are hoping to work with Lighthouse International who are one of the many groups who provide this service through the state. Since he is likely to be seriously visually impaired we wanted a group intimate with the challenges of visual impairment. The goal of these programs is to give Ben the best chance of meeting his developmental milestones. We want to give him every opportunity to succeed as possible.

Between all the doctors, therapists, nurses and all, Ben is a very popular guy.

I’m staying home this week and next to spend as much time as I can with the little guy (and Amy… and the puppy). It is great to have the opportunity to do that, but I’ll need to go back eventually. Until then, you can find me here, debating with a baby the benefits of eating and how good a burp feels.

Also – while we haven’t been able to reply to every comment on the last few posts, we want to thank everyone again for all the support and good wishes. It means a lot to be able to share our good news (after all the bad news on the path to get here). I mean we did it – we’re out of the NICU, we’re home! Writing these posts and reading all of the comments have helped us a lot. It gave us a chance to process everything going on, but it also opened the door for so much support from all of you. And that support really helped us. I know from here on out won’t be easy either necessarily, but we’ll worry about that later. Right now we are going to enjoy reaching the end of the marathon and for the moment ignore the fact we may be in an Iron Man. Thanks again for cheering us on!

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15 thoughts on “Now What?

  1. i like that a cyclone cup is in your bathroom; it’s in ours too.

  2. You all are simply amazing…and inspiring. If you need anything, please let us know! Lily received Synagis- it was fairly easy to get the authorization. She also had special formula and a powdered supplement for weight gain- all covered through insurance. And she received feeding therapy as well- so we’ve been there, done that! If I can offer any advice, just ask. Loving the good news and hoping to see you all soon!

  3. wonderful! just wanted to let you know that we’ve dealt with a lot of spit up with Lydia also — must be a preemie thing. Lydia smiles through it and is in no pain so the doctors say she’ll grow out of it — probably around 1 year old. we’re doing early intervention too, with a physical therapist who comes out every two weeks. that has been a wonderful resource, especially for a 1st time mom like me! I’m so excited for your family. congrats again!

  4. He looks cuter every day. Now that I have my flu shot, I hope to stop in and see that handsome baby boy.

  5. We are so happy for all of you. How much did Ben weigh when he went to the pediatrician. How long? Does he like the bath? Does he play with the water? You all are so inspirational to so many other parents and I am so proud to be related to such wonderful and amazing people. We love you all

    • He was 10lb 9oz at his last weigh in. He seems to like the bath, but I don’t think he “gets” it enough to think to play in the water! We’re using the puj in the sink right now, but as he grows I think baths will be more fun πŸ™‚ Love you too ACA!

  6. It is wonderful to know that Benjamin is finally at home w/u guys… It was a very long journey but finally you all did it!!!!
    I hope everything goes good…. we love you guys… Rebecca and I are soo happy to see you finally at home… =]

  7. This is the first time that I have entered a blog comment, but you and Benjamin are a great inspiration. My granddaughter is almost 6 months and she also has a variation of “reflux” and takes meds for it. Its funny that I think that she is thinking this great thought and then always – it seems- unexpectedly I am gifted with this gift of spit up. In the old days we were told to make sure the child burped after a feeding.

    It’s wonderful that Benjamin is finally home. Still coming home from the hospital- certainly after this extended time – is always hectic.

    My grandson Joseph , who is now 11, has the benefits of intervention services. My daughter said that the therapists ( feed specialist, physical therapist, occupational therapist) who visited got to be her friends.

    Reading the blog about Benjamin’s homecoming this morning matched beautiful with this bright sunny day.

  8. Sorry you haven’t heard from us yet! It has been such a joy to read all the good news lately. Seeing that he’s finally home is too big for any words I can come up with, so we’re just sending you love.

    It all looks so perfect–as though your home and world had an empty spot just for Ben.

  9. Grandpa Jay is in love, with his Grand baby, he is a good looking baby just like his mom and father.

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