Saturday, January 30, 2010
The preemie experience is the shattering of all your dreams
For a normal, healthy delivery,
Of the ability to carry home a beautiful squirming bundle
After a short stay in the hospital.
It is lying there in your hospital room listening to
The happy sounds of whole families joined
Together by the birth of a grandchild, cousin, niece,
Or nephew, and knowing that your
Child is miles away and may not survive long enough
For you to see or simply touch.
It is that first glimpse of a skinny, scrawny, not much bigger
Than a Barbie doll child
And feeling, fear, awe, and joy for such a fragile soul.
It is sitting by your baby’s “bedside” day after day,
Week after week, month after month,
Alternating between the emotional high of “Look, her eyes are open,” or “She’s crying!”
And the lows of “I’m sorry, Mrs. Moore. Something has
Shown up in Lauren’s ultrasound,”
Or even “There is nothing we can do…”
It is hearing the alarms go off for the twentieth time in less
Than fifteen minutes because your
Child’s heart rate keeps hitting zero.
It is watching children dying around you, wondering if
Your child will be next.It is hearing your child’s cry of distress as the nurses
Insert yet another IV and do another
Round of daily blood tests.
It is meeting other parents of children who are doing far better
And wondering, “Why me?”
And meeting parents of children who have just died,
And praising God for His mercy
To your child and feeling guilty because your child is alive
And someone else is grieving for theirs.
It is days of nightmarish testing and coping with less
Than positive results to the tests.
It is days of joy at seeing the first eyelash appear,
The child gain a whole ounce in one day,
And two bright shiny eyes look at you and into your soul,
And knowing that your child now recognizes you as Mama or Dada;
Or perhaps looks at you and does not see you at all…
It is that final hurdle before coming home!
It is the sorrow of waiting for the monitor company
Representative to show you what to do
If the alarm sounds when your child is choking,
Gasping for breath, or simply dying.
It is the joy of just being away from all those nurses
And tubes and wires and beeps, and
Walking into the nursery you hastily prepared because, after all,
The child wasn’t due for another three months!
It is thinking the nightmare is over…only to realize it still
Continues in the form of
Such acronyms as PVL, RSV, BPD, CP and numerous others.
It is the final realization that those developmental delays
Have to be dealt with,
That reflux is a normal and unfortunate occurrence in most preemies,
That the constant fight to gain weight is in direct proportion
To a preemie’s ability to do so.
It is watching a child struggle to pick up his or her head, sit,
Crawl, or walk.
It is witnessing only silence when the child should be babbling,
Because the child cannot hear.
It is the mental images of a child running and playing
And communicating with others in a
Perfectly normal manner that are marred when you face years of therapy
In order to simply get the child to eat by himself or herself,
To talk or walk and then run.
The preemie experience is a journey…
A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart…to accept that, no matter what,
This child is yours,
And you will love this child no matter what.
Friday, January 29, 2010
This Saturday, Peter Fonda will be visiting the Hollywood Palms Theater in Naperville during a screening of "Easy Rider." Just like when Zuzu came to town, we'll get to meet him in person, get autographs, and listen to him talk a little about the movie before it begins. It should be fun and exciting.
Maybe Pete will be all crazy and do his Jack Nicholson impression for Mr. Fonda? It was such a hit last time when he did his best Jimmy Stewart and Mr. Potter imitations for Zuzu.
Thursday, January 28, 2010
Yesterday was awesome. I had a great call from the doctor regarding Jack's progress. Not only was his echocardiogram normal (meaning his heart is okay), but he may be getting off oxygen soon too! And that's not the best part....
Yes, Jack drank A FULL FEEDING from a bottle for the first time yesterday! I was so happy, I actually did a happy dance in my living room once I hung up with the doctor. I was really getting worried about this, since he's now 38 weeks as of today, and this is one of the things he needs to be able to do before he goes home. I was so thrilled to hear this news. And I was hoping he'd do another bottle feed when we visited him last night, but he was cranky and tired, and not up for it. He also had PT come in, and threw a fit while the therapist was there. But a change of diaper transformed his mood, as it always does.
I'm hoping to put him to breast soon, or at least nuzzle him (let him "play" with the breast and get used to it), but that hasn't happened yet. All in good time, I suppose. I wish I were at the hospital for his 11:00 feeding, but I can't go anywhere until this SSI person calls. Frustrating. I should have given them my cell phone number and not my home number.
Yeah, it's no big deal...I'm my father's son, remember? I LIVE to eat!
Well, I'm off to check my messages, just in case someone called while I was in the shower earlier. Just thought I'd share the good news with you all!
Wednesday, January 27, 2010
He's getting so big. I bought some preemie outfits on clearance at Carter's last week, and they fit him quite well. Some of the onesies fit like a glove. I love this little outfit he has on, a striped onesie and some lion foot pants. So cute! And look how big our Jack-Jack is getting.
Pete and Jack have such a great relationship already. They love to nap together in the big lazy boy chair in Jack's room. Here it looks like they're having a discussion.
Anyhow, I am going to try to blog more regularly. I'm not sure how much time I'll have to check out other people's blogs, which I desperately miss. But I wanted to share with you all how things are going. People are concerned how Jack is doing, and I feel bad that I'm not updating as regularly as I could be.
I'm also debating how to chronicle Jack's life, and our life with Jack. I was thinking of starting a separate blog devoted to him, but I also pondered just continuing this one and posting here. I sure don't have time for extra writing, which would be required for a separate blog. But this blog has never been focused on any one thing in my life. I do think that I'd still want to talk about other things besides Jack though (perish the thought! lol). The furry children are all still here. My freelance work still continues to hum along, albeit slowly and sporadically. Pete and I still have our ups and downs (mostly ups). And of course, my love for shoes has not gone away since I became a mother, so there's always that. So I want to decide soon which way I go, because I really want to share my journey with you all as the mom of a micropreemie.
Anyhow, Jack is struggling with eating right now. He is almost 38 weeks gestationally (3+ months chronologically) and is falling behind on learning to bottle/breast feed due to a nagging head cold and bad reflux issues, which is common in preemies. And his chronic lung disease isn't going anywhere, sadly. They're possibly starting him on Reglan this week, to see if that helps the reflux. And bottle feeds are being started up again, after a week-long delay. I still haven't put him to breast yet, not even to nuzzle. All in good time, I suppose.
A fun thing on the horizon (besides planning for Jack to come home) is the planning of my baby shower. Yeah, I know, I'm doing it backwards by having the baby FIRST and THEN the baby shower, but that's life for ya. I'm excited to see how the party is being planned, and picking out stuff for my registry was a blast. I can't wait to be like other moms and push my baby around in a stroller, bathe him in a tub, tuck him into his crib, play with him, etc., all in my own home. I loved checking out the different travel systems and debating which one to choose. Lots of fun, but a bit overwhelming.
In the meantime, I'm behind on cleaning the floors in this house. I have to stay in mom-mode, as I call it, and I have a duty to keep this house as clean as possible for Jack's eventual homecoming. I'm off to vacuum with my Bissell Pet Hair Eraser and Featherweight vacuums. Good times, right?
Have a lovely Wednesday!
Wednesday, January 20, 2010
Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint...give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see—ignorance, cruelty, prejudice—and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."
Sunday, January 17, 2010
If you haven't noticed, I am not currently blogging, due to the situation with Jack and the incredible amount of time and energy I have been devoting to his care. I have been prepping our house for his eventual homecoming, which I am hoping will be mid to late February, as the doctors have suggested (nothing is written in stone, however). That has entailed lots of scrubbing, hauling boxes, moving furniture, etc., since he will still be rather fragile when he comes home (and for a long time afterward) and needs an exceptionally clean environment.
In addition, there are the daily visits to Jack that usually end up being 4-5 hours at a minimum, but are usually longer. The visits are wonderful, and filled with kangaroo time, teaching him to feed, and meeting with doctors, nurses, and various therapists. Add to that the seemingly endless pumping I must do (I'm usually good for 6-8 a day, although I should do more) and the continued daily life on the side that everyone experiences, which still includes job hunting and freelancing, and you can see why I am so overwhelmed most days. My bloodpressure continues to be an issue, although I'm hopeful I can get off the medication as I lose weight (which is another burden for me right now) and exercise more. There is just not enough time in the day, and I am always tired, but I'm a mommy and I have a purpose, and that keeps me going.
Anyhow, Jack is doing great at the moment. He is 11 weeks old, 36 weeks gestation, and weighs a whopping 1490 g (3 lb 4 1/2 oz). He has ROP (retinopathy of prematurity) but it's still at stage 2, zone 2, and hasn't really changed from last week. We are hopeful that it regresses like it does for many preemies. Jack is usually breathing room air (21% oxygen) and at a low flow (.9 L) on a nasal cannula. His feedings are up to 27 cc every 3 hrs, with fat and protein being added to my breast milk for weight gain. Jack is working with various therapists to learn how to eat and strengthen his muscles. Best of all, he is blossoming into a beautiful little baby boy, with a very vibrant personality...although we, as his parents, might be a little biased.
Thanks, as always, for the prayers and well wishes for our little "spitfire," as one of his nurses called him yesterday...it means the world to Pete and me. I love reading your comments, and it makes me feel good to know so many people out there care. I hope to update everyone more frequently than I have been, but I have a feeling I'll have my hands full for the next few months.Hope you are all having a wonderful 2010!