The latest word is that we could be here a week... or more. A is "dumping", which means that everything he takes in, he puts back out leaving him at risk for dehydration and, of course, not getting the nutrients he needs to sustain himself, let alone grow. It is common for babies with his procedure (illiostomy - sp??), so we are working on a feeding plan that "works for him", as they say.
When we went home, he was eating breast milk fortified with formula to beef up his calories. Now they believe that the fortification overloaded his system, so we are working on pure breast milk. If that doesn't work, then we will move to a predigested formula.
My mom and one of my sisters arrived yesterday for moral support and helping us to maintain our household. Gladys was invited by her friends at doggie daycare for a day outing to a Frisbee tournament (um, we didn't know she was good enough to compete!! Our dog has a secret life without us!! Weird!) So, things are going as smoothly as possible at the moment in our lives outside of the NICU.
A is, so far, tolerating his feeds well. He is on intravenous nutrition and we are slowly (ever so slowly) increasing the amount he gets to eat at one time. We got the go ahead to move from about 1/2 an ounce to just under an ounce ever three hours for now.
We're holding up OK. Erin is, as always, strong and positive. I have some good moments too. It really helps to have mom and my sister here - they are helpful in terms of practical things, as well as emotionally - that's good for both me and Erin. Still, I can't help but go to the place where I am just in shock that this has happened to us... after all that we've already been through... after how much we wanted that little boy. Then, I bounce back, especially when I look into his eyes. He smiled at me this morning, seemingly in response to my voice. He is the most beautiful boy I've ever seen in my life. He didn't ask for this, but he did pick us. I'm so anxious to get the NICU behind us because that means he is healthy, but I wouldn't trade him for any other baby.
Saturday, May 3, 2008
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17 comments:
Oh sweet Sara, I am so very sorry for A for you for Erin, for all of this. It is so unfair. You are also filled with such HUGE amounts of hormones right now. After birth the hormones are just insane swirling through your body so try and be really gentle with yourself.
I am sending love and light to you all and you are all in my thoughts often throughout each day.
thank you so much for finding the time to update. as ever, we continue to send you much much love and strength and confidence in a's ability to heal quickly.
also, congrats to gladys on her secret frisbee competition life.
Thinking of you. I know from my nephew's time in the NICU how hard this must be. I'm glad you have the support of your family and I'm sending lots of love.
Oh, Sara, I'm so sad that you are having to go through this! My baby did the "dumping" thing too (withOUT an ileostomy--just eosinophilic esophagitis and gut) and it was SO terrifying to have a baby who couldn't even deal with breastmilk--BREASTMILK! The magic elixir that cures all! I just remember being so outraged, because I wanted to badly to just be able to lift up my shirt and put my little baby to my breast at the first squawks of hunger, as I had with the one before, but alas, no. Predigested formula, in my experience, is BS. There's partially hydrolyzed (broken into peptide chains rather than full protein molecules--Nutramigen, Allimentum, etc.), extensively hydrolyzed (or "predigested" into much SMALLER peptide chains--Pregestimil, for instance), and elemental (lab synthesized into individual amino acids, like Neocate) formula, and we went through four months of trying this and that, and SLOOOOWLY working our way up to the Neocate. If you don't see a dramatic improvement soon, I'd say why not ask them to trial A. on Neocate? In our case, it took a nine-pound four-month old up a pound IN A SINGLE WEIGHT, and while our baby still suffers from short stature and multiple heritable genetic syndromes, there is no shortage of pudge. It was like night and day! I offer you this assvice only because it sounds to me like in some ways A. is following the course my baby did, and the Neocate is what really turned the tide. Until that we weren't really sure the baby would live. And now the baby is in the other room harassing both older siblings half to death...just a thought.
Oops--typos galore. What I meant to say was that the baby gained a pound the first WEEK. It was like the poor kid had been starving, no matter HOW much we dumped down the NG tube, until we tried the Neocate. And yes, it is HIDEOUSLY expensive, and your insurance probably won't cover it unless A. starts having it delivered through an NG or G-tube (don't ask me why, but ins. companies consider it food if the baby DRINKS it, but medicine if you "inject" it into the baby's body via some sort of durable medical equipment). I don't really know what to tell you about that except what you already know--that you'll do whatever it takes to get A. through this, and if it comes to that please let me know and I will give you some links to forums where parents of children with GI issues swap and sell sealed equipment and specialized formula. My little one is now on Neocate 1+ (for children older than one and younger than...um...well three at the least since that birthday is four months away), which wouldn't work for a tiny infant, and it's a damned shame because I have built up a considerable surplus of the stuff. I know I'm not the only one, though, and you have the whole Internet pulling for you. If that will help A. get better, his Internet aunties will figure something out!
This is happening to you because you CAN do this. Most parents would not be strong enough. You and E have such a strong connection that you can handle anything as long as you do it together (and I know this just from reading your blog, I can only imagine how apparent your bond is IRL).
I'm glad you have support, I am thinking about you!
I am so sorry you and poor A. are still going through this.
We are continuing to pray for you all to be home soon with a happy and healthy baby.
We are sending our love!!!
Holly, Lois and the meatball
Sara, Erin and A-
I'm sorry to hear that A is back in the hospital. What a frustrating experience when you just want to bond at home. Please remember to take care of yourself as well. You need to find peace and time to rest to give him your all. You two are amazing moms and he is such a lucky little guy. Thanks for the updates and be sure to take care of eachother during this time. We are sending love, good health and great vibes your way :)
Oh my, I am sorry your going through this. Decided to check in after a long time to see how life was treating you with a new baby. Sending positive prayers and good energy.
~GoGo
Spending entire days on the drab interior of a hospital is a little like having a dementor suck the life out of you. I'm so so sorry you are spending your first days and weeks as moms doing this and that A. is spending is first days of life going through so much.
But I am 100% sure that there will come a day in the not so distant future when this will all be behind you. Stay strong--we're all thinking of you every day.
I'm glad your mum and sister can be there for you. I hope the day that you can put NICU behind you is just around the corner. Much love.
I'm so sorry too, and sending you all big positive thoughts! Am sure this will be behind you soon. Have loads of admiration for how you're handling it, it must be said. HUGS. xxxx
Someday, he's going to be able to show his friends the scar on his abdomen and they'll think he's tough. We already know that's true. For his mommies, too.
Having spent every Saturday & Sunday, and every night after work (my partner, luckily for her, was on maternity leave) at the NICU for a month, I know the toll it takes. It feels like it will never end. All you want to do is reach down, scoop up your baby and run out the door with them. There are good days and bad days, and there were nights when we would sleep in separate spaces because all we could do was cry. But it does end eventually. And now that our daughter is nine months old, it is hard to believe that she had surgery at 12 hours old. As she smiles and eats and says "kitty" over and over again, it's hard to believe the desperation we felt. One of the best things we ever did, although it was hard, was take pictures of her while she was in the hospital. Even with all the tubes and machines and everything, this was her first month of life, even if it wasn't ideal. We sometimes look back at the pictures and can't believe how far we've come, how far SHE'S come. While you'll never forget what is happening now, eventually as A gets older, and the time between when this happened and the present gets further and further away from each other, you’ll only focus on him and every milestone. For us, eating was a big one because of her surgery. For you, it will be something else. You’ll rub cocoa butter on his scars and he’ll smile and giggle, and that’s all you’ll be able to think about right then, is that smile. It does get better. Good luck .
Thinking of the three of you...
Awww..he smiled at you ;-) Doesn't that just melt your heart? There are many more smiles to come. He already thinks/knows you two are the best moms ever. It's amazing how babies just know isn't it? We'll keep sending you positive energy from DC. -Monica (and Su and Danny)
Thinking of you three a little more than usual today. Hoping you'll all get to return home for good very soon.
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