I cannot stress enough the importance of being your child's advocate.

It takes strength and courage to stand up and do what's right not only for yourself but for your child. They look to you as their parent to make choices for them when they can't. I can promise you that this will not be easy. I can't promise that your choices won't be questioned, challenged or judged; because sadly someone somewhere will do this.

Several times during both my pregnancy and the twins NICU stay, I had to make tough choices. Choices I wouldn't have been able to make on my own without the support of my husband because they effected us both. I will forever be thankful that he and I are on the same page on many things.

From that ultrasound on that cold January day where doctors confirmed our fear. My water had broken and both babies were in jepordy. This was the ultrasound that also revealed that Addison "elegedly" had an ASD (whole in her heart) and Micrognathia (recesed chin to put it simply). The same ultrasound that brought one of the High Risk Specialists to the conclusion that we should terminate Addison, deliver her and attempt to put in a cerclage to save Blake. First Jake declined before I could even speak and stood firm that we would fight as long as Addison's heart kept beating and in no way would we chose to terminate her. That doctor had no problem telling us how much she disagreed and though it was foolish to put myself and Blake at risk. Second, I thought my OB was going to go off the deep end on the specialist and told us there was no way he would do what she was suggesting because that in itself was risking to me and Blake, and was even greater risk to loose Blake. He did warn us though that we could still loose Addiosn "naturually" and may have a stillborn baby. Our hearts broke. All we could do at this point was start antibiotics and then I would be sent home because we hadn't even reached viablity.

Fast forward to 24 weeks, I was admitted to the hospital one more time for steriod shots for their lungs in hopes that IF they should come early they would be better off from a respitory standpoint.  I had several doctors, friends and family telling me that now I needed to stay until I delivered. But I couldn't there was just no way, I couldn't handle it. I had 5 weeks to wrap my head around it and prepare myself but I knew in my heart that the stress of being "alone" in the hospital would cause me to go into labor. Jake understood my fears and we listened to each doctor give their reasons. While none of them could give me "the ok" to go home, one of them was brutally honest and told me that I was also right in thinking I was more at risk for infection by staying in the hospital and that going home could give us the best chance at survival. But legally he had to tell me to stay. We dissappointed a lot of people when we made the call to come home. Do I regret it... not really. Would I do it the same way all over again? I can't honestly say. But I do believe that staying home is what helped me get to 26 weeks. Had they kept me at 20 weeks, I do believe I wouldn't have made it that far.

In the NICU, most choices were not up to us. It was all about survival. Our first choice was "How far to go." Our answer was simple, do all you medically can and leave the rest to God. After that things were out of our hands again until it was time to think of alternate options for Addison who struggled to come off the vent. Our first MAJOR choice was did we want to give our daughter steriods to help get her over the hump. This came with the possiblity of increasing her risk for CP and developmental delays, the alternative was a Trach, increased lung damage and death. We opted for steriods.

After that, we were faced with the G-tube and Nissin surgery. Yes, No, Maybe, Give it more time? I armed myself with knowledge of it all and asked a million questions. Peds Surgery wanted to do one more test "just to be sure" because ofcourse the fact that formula oozing out her nose and mouth constantly wasn't enough, that was one test we refused. Why? Because it posed a huge risk for aspiration which could damage her already fragile lungs or worse. Surgery went well but recovery didn't.

Again Addison was struggling to be extubated. Her NEO at the time did not want to hear what I had to say about it and told me that her "45 years of medical expeirence as a doctor would not let me make decisions like that." I pushed back and so did she. This NEO was hell bent on Trach-ing her no matter how we, her parents, felt about the matter. (Keep in mind this NEO had only known Addison for 2 weeks and was not one of her "regular" NEO's. IMO, those 2 weeks didn't over rule the 4 months I had been her mother and watched all she went through.) I made phone calls, had the other NEO's consult, and made myself clear that this was not a button she wanted to push or a decison she wanted to make without our permission. If it meant I had to pay out of pocket for a transfer to another hospital I would do it. In the midst of this Addison had a MRSA flare up and this infection was raging through her body. I knew in my gut that if they cut another hole, in her airway at that, we'd loose her. And we felt like she had been through enough and if this was really the end she would give up. We were making peace with that, but we wouldn't torture her anymore, she suffered enough and had been in enough pain. Also worth noting that Addison was in a room with a handful of other babies, that all had Trachs...something didn't sit right about this. (Disclaimer..... this is just our situation and our story, I am not saying other's should make the same choice. This was the best choice for us.) At the same time they also wanted to surgically place an ART line (similar to a PICC line) to finish out a few short doses of antibotics, because she kept loosing veins. Nope, not happening, find another alternative it was too risky for us at this point.

Fortunatly the other NEO's were able to give a better history for Addison and educate this NEO. A few days later she informed me that she "just didn't know all that had to be done to extubate her before". I couldn't be kind at that point and I told her point blank, "There is a reason Addison was transferred with a chart and you at the very least could have read the cliff notes. Not to mention I told you this, not once but twice. I am sorry but I don't take well to being told what to do or that you will just do it anyway. That doesn't work for me and I honestly hope the next time you have an expeirence with a sitaution like this, you handle it a little better and professionally." Yes I was THAT MOM. And guess what, a week later Addison was off all oxygen, she went from the ventilator to a low flow cannula in less then an hour and she was being discharged a week and a half after that. The NEO was baffled. NEVER UNDER ESTIMATE THE POWER OF A PREEMIE. Just sayin'.

The day of discharge she wouldn't even enter the room to have me sign the paperwork. She had one of the residents to it and she must have thought she escaped me, but we met in the hallway on the way out. And had the nerve to tell me "Well mom WE made it." I kept quiet and kept walking with my baby in her stroller, on our way to freedom. I later found out this doctor was notorious for making parents cry and walking all over them. It's sad it really is. And I can't imagine where we'd be today if we had given in and just let her do what she wanted. I know that things could have ended totally differently even with the choices we made, but the fact of the matter is that things are the way they are for a reason.

I don't regret advocating for either of my children and we have always done what we thought was best for our children and our family.


Read more about Melissa and her twins at http://ourvalentinesdaysurprise.blogspot.com/.

By Amy

This is a reflection written while Michaela was still in the NICU. Michaela is home and happy today.


Michaela continues to do well and gained some great weight today (up to 3 lb, 3 oz), but I'm feeling a bit reflective tonight. A couple we met recently in Michaela's room with twins born at 28 weeks buried their week-old son a few days ago. He suffered a pretty severe brain bleed, and they had to make the decision as to whether they wanted to keep him on life support or not.
It's a sad reminder of just how fragile life is, and how different Michaela's story could have been. Had we gone a few days longer in my pregnancy without an ultrasound, we might have lost her. And a brain bleed is a complication the neonatologists warned us about when we first met with them a few hours before Michaela's delivery.

Luckily, neither of those things ended up happening in our case. Yet there's still no guarantee she's coming home with us at the end of this journey. The only thing to do is take things one day at a time…and hope and pray that our story has a happy ending.
I hope you don't mind a break from our "typical" update, but I had a few thoughts I wanted to share with our friends, family and all our supporters out there...

What I wouldn't give
...To have had a stranger come up to me on the street when I was pregnant and ask "When are you due?"
...To have stretch marks on my belly right now -- over a month before my due date -- instead of bags under my eyes.
...To wake up at 3am to a hungry newborn crying instead of an alarm alerting me that I need to express my breast milk.
...To walk down the hall instead of driving a half-hour to see my baby's face every morning.
...To not have to change my baby's diaper through two portholes in an incubator.
...To start my day without hearing or speaking the words “morning rounds.”
...To dress my daughter without being worried I'm going to pull out a tube or IV.
...To give my baby a bottle without worrying whether it's sapping the energy she needs to keep herself warm.
...To see my daughter's grandparents, aunts, uncles and the rest of our friends and family hold her in their arms.
...To look at all the beautiful baby gifts we've received over the last few weeks from friends and family and not wonder whether we'll have a baby come home to use them.


I hope and pray that some day soon these experiences will eventually come, but in the meantime, I'm thankful for:
...Days that I don't have to watch my baby get another IV put in.
...Days when the doctors increase my daughter's breast milk feedings and lower her IV fluids.
...Days she gains weight -- even if it's only a few grams and everyone in the NICU thinks it's just poop that hasn't come out yet.
...Days she poops!
...Days I get to hold my sweet daughter without the nurse needing to increase her oxygen level.
...The nurses and doctors at Evanston Hospital who work so hard to help keep my daughter alive.
...Friends and family that show their love and support in so many ways.

Happy Birthday!

I have a one-year-old.

My little 2lb 8oz baby turned one today. He now weighs 18.5 lbs, which puts him nearly on the growth chart for his actual age. He's grown from 15 inches long to about 27.5. Again, just starting to graze the bottom of the growth chart.

Whenever I describe his age to people, I always do the mental math by saying he was born 3 months early. It was actually a little more than that - 3 months and 5 days early. When I look at his ticker today for his adjusted age, it reads "8 months 3 weeks and 5 days."

Wow. Looking at it that way really highlights how early he really was.

As you'd imagine, today has been a crazy mix of emotions. Like all moms, I'm happy to be celebrating the first birthday of my son. I'm sad and nostalgic that he's growing up. I'm proud of how much he's grown.

There's so much more than that, though. All of my emotions just seem so much stronger than most parents' on their child's first birthday.

I feel like I'm turning a page. It's the same relieved feeling I had when we brought our son home from the NICU. We made it. We survived. HE survived. A whole year. And he's a thriving, happy ball of energy. What a relief. Now, we can concentrate on enjoying things more. It'll get easier from here...right?

And I'm so unbelievably proud of how hard my son fought to get here. I've heard people talk about their hearts swelling with love, but I never understood that until I became a mommy. It's like I can feel my heart grow. And it's magnified today. If we would have lost him in the beginning, I know we would have been devastated. Only now, after falling in love with my baby, do I truly understand what I would have missed out on if my son didn't make it. I didn't have enough capacity to love him enough until many month later, and it's only in hindsight that I'm able to grasp the all-encompassing love I would have missed if my son didn't come home with us. It physically hurts just to think about it that way. Luckily, my son was a fighter from the beginning. Rolled with the punches. "I'm showing up early? Cool. Have to live in a strange hospital in a strange city in a strange state? No problem." He's weathered the storm better than anyone, and we're so lucky to have an amazing son who likely won't have any long-term effects of his early birth.

I'm proud of us. My husband and I. We've been to hell and back in 2011, and we're closing the door on that. All three of us were admitted to the hospital at least once in 2011. We've had health scares and spent a dizzying amount of money, but we're here. And we'll be stronger for it. Better for it. I look back on who we were before our son was born, and I don't even recognize us. Everyone changes when they have a baby, but not like this. Not like this.

But not all the changes are good. All the memories came flooding back over the past few weeks, and they were especially strong today. Sometimes, it's images of labor & delivery or the NICU. They pop in out of nowhere, triggered by all sorts of things. The weather that takes me back to the snowy day of my son's birth. The Super Bowl advertisements that drag me back to that pumping room and the tiny individual TV where I stared at that game without knowing the score. My MacBook dictionary screen saver that has "gavage" as its word of the day. Really? Why today of all days? That stupid stupid wonderfully produced Pampers commercial about Every Little Miracle. It shows that tiny baby born 3 months early and it has that beeping. That NICU beeping. Beep...beep...beep... It took me months to not hear those beeps every time the microwave finished cooking or a truck backed up or my alarm clock went off, and that commercial takes me back. Every time. And it's been harder to push those images out as his birthday got closer.

It's not always memories, but sometimes it's feelings. I've been feeling anxious the past few weeks, and it got worse last night. I couldn't sleep. I was too lost in my thoughts until way past 2 am. I never had anxiety before the NICU, and now, every time I feel anxious, I think of the NICU. Or labor & delivery. Anxiety will forever be tied to those experiences, and I've been fighting against the flashbacks every time I've felt anxious over the past few weeks. Even when I get anxious about work or any other normal thing...BAM!...Back at the NICU. Or in labor & delivery. It's frustrating. I'm frustrated that I still struggle with these feelings. I know I'll never be the same, and I grieve the person I used to be. Sometimes, I wish I could be just a little more naive again.

On balance, I'm glad today is over. I'm terribly sad that my little baby is growing up, and I'm so happy to celebrate his birthday with him. But, mostly, I feel relief. Relief that this year is over, relief that my son is doing so well, and relief that we get to put some of the most difficult parts of this battle behind us.

I love you Captain Stinkerpants. Thank you for being the Best Baby Ever.

• First and foremost- HAND hygiene. Hands are the biggest germ magnets. I am washing my hands constantly and make everyone else do it to. When I’m out I rely on hand sanitizer a lot. I have one attached to the handle of each diaper bag, in both cars, and by my door when I come in to the house.
• I am very careful about germ magnets (doorknobs, hand rails, money, elevator buttons). I try to open doors with my elbow or sleeve when possible or I will use hand sanitizer after touching these things.
• We do go out, but stay outdoors for the most part and avoid closed off, indoor spaces with lots of ppl including indoor malls, grocery stores, and pharmacies (I think pharmacies are the worst!).
• When LO is in his stroller or carseat I think of this as the “safe baby realm” (this is what our NICU considers the isolettes and anything that touches baby) when my hands enter the realm I sanitizer first. As long as they are only in that realm, I’m good, but when I touch anything outside, I re-sanitize.
• To remind myself, I leave a hand sanitizer on his lap when he’s in the stroller (he’s too young to grab for it yet!). You could also attach one to the stroller handle.
• While out, I wear LO a lot. Having him right on my chest in a sling or carrier means that I can head off well-wishers that want to touch him. Most of the time, ppl just don’t go for him because he’s right on my boobs :o).
• When LO is in the carseat or stroller while out, I put an A+A blanket over it. I consider this blanket the “dirty” blanket and will touch it with non- sanitized hands to block a ray of sunshine from his eyes or quickly cover him up as a gaggle of cheek pinchers approaches.
• If we’re out and someone (sweet old lady, friend’s non-sick kid) REALLY wants to touch him I try to direct them to his feet. I can say “I know, he’s so cute, look at these tiny toes!” or to the child “you can tickle his toes.” This keeps them away from his hands and face. If we meet up with close, not sick friends, that want to hold him, I make them sanitize first.
• When we get home I wash my hands well, throw the “dirty” blanket in the hamper and then wipe down LO’s hands and face with a warm washcloth.

My ultimate protection, I believe, is clean hands and every precious drop of breastmilk I can get in him!

Bringing your baby home is one of the happiest day of your life.  When you've spent over 100 days in the NICU, it's a very special day.  No more "visiting" your child, no more limited snuggling, no more middle of the night phone calls to the NICU.

Before I had a preemie I was sure that I wouldn't be one of THOSE moms. You know, the kind that go to the doctor for every single issue?

After my baby was discharged we were in at least one doctor's office or therapist session every single week for several months. Follow-ups, specialists, developmental checks, weight checks, reflux meds adjustments, regular check ups, therapy evals.....it was overwhelming to say the least. Add to that the fact that every time we walked into an office, all I saw were GERMS and felt and overwhelming need to cover my baby in a plastic bubble.

So I started asking other moms for their tips on managing doctor's visits. Here is what they had to say:

Bring food and bottled water for YOURSELF. Follow-up appts. often take forever. At first I always forgot food and I'd be miserable. If you are pumping and driving more than 30 mins to an appt, pump on the way there with a hands free bra so you don't have to worry about pumping. Bring your own pen. Offices (where there are SICK people) make you sign in an use their disgusting communal pen. BLECH!I always wore him into appointments. I hate the infant seat, it is so heavy. I'd rather wear him. Bring something to entertain yourself. Appointments take forever, little babies sleep a lot. It gets boooooring.

• "Be patient (easier said then done, I know). Ask lots and lots of questions. Ask if your insurance will cover a home health nurse to come in once a week, once every two weeks, whatever... to help monitor weight gain etc. Get a planner...you'll need it to keep track of all the appointments in the coming months. Keep copies of the discharge summary in your diaper bag, should you need it. We also got a folder for the diaper bag and kept all their various papers from each appointment because often we'd need those papers for the next appointment or to relay things to each specialist or the Pedi."
• "Keep the discharge paper they give you. I have refered back to it every time I fill out paper work for docs, IE, and starting school."
• "Make sure you have all the supplies you need to care for them on hand. At least enough to get you through the first few weeks. Adjusting to caring for your baby yourself is a tough job so use the NICU time wisely. Stock up on diapers, wipes, bath supplies, meals for you, etc. Anything you might need and forgot about. I know we used Ian's 8 days in NICU with Jack for this since I was on hospital bedrest for 7 weeks prior to their birth, so I had NO TIME to nest before my discharge. Also, if you have anyone who's willing to come and visit you to help, make sure to stock up on hand soap and hand sanitizer. And have them do chores as much as possible rather than baby care."
• "Ask anything you have questions about. Be sure you are clear about any follow up appointments, program enrollments, and other necessities. We were able to get some coupons for Neosure from the NICU social worker, which really helped! Also, know who to call if you have questions or issues after discharge. We did not see the pediatrician for a few days after the discharge, so we had to call the NICU with questions for the first few days. After that, it was the pediatrician."
• "Dont let yourself get too excited about a "date" just trust that your baby will go home when she/he is ready."
• "We'd been home with the other baby for 2 weeks by then, so the biggest change was going from sleeping pretty decently with one baby to sleeping not at all with two :) The apena monitor sucked though. She'd had one episode early on and the thing had a million false alarms. We eventually ditched it against medical advise when she was about 41 weeks gestational (about 3.5 weeks post release) after the doc told us to use it another 6 weeks without having even read the alarm report (literally, he had not gotten the report from the download yet). Our pedi supported our decision, but obviously this wouldn't make sense for a baby with a history of A/Bs. The point of me telling you this detail - use your mommy gut :)"