Thursday, April 26, 2012





                Aiden & Ryan are 7 months old/3.5 months adjusted, and between the two of them we’ve been through 9 surgeries, and have at least 3 more on the horizon.  So far, we’ve dealt with a PDA ligation, a reservoir placement, two shunt placements and revisions, a bilateral hernia repair and two ROP laser surgeries.  It is always scary when you’re told you baby needs surgery, especially when that baby weighs less than 2, 3 or even 4 lbs. 


                The first surgery we dealt with was Ryan’s tapping reservoir.  When he was a month old, he was diagnosed with hydrocephalus which is a direct result of his IVH.  He was way too small to have a shunt placed (which is a permanent device made to shunt spinal fluid away from his brain).  In lieu of tapping his brain directly, they placed a reservoir which is an access point through which they can more safely draw fluid out of the ventricles in his brain.  While all this sounds very scary (it is brain surgery after all), we were relieved when we got the call that his surgery was scheduled.  Although there were, which of course we were aware of, the benefits outweighed those risks.  That is the case with most  all surgeries you face in the NICU.  We knew that this would bring our tiny baby relief and would give him a chance to live. 


                That first surgery paved the way for our outlook on all further surgeries.  Of course we don’t want our children to go through anesthesia and painful recovery and all that jazz, and we absolutely fear the worst and have knots in our stomachs for the duration of every procedure, but without these surgeries our children would likely not be alive.  I thank God every day for creating people who are smart and disciplined enough to become surgeons, because really, we owe our lives to them.  We owe our children’s lives to them. 


                We always say that Aiden & Ryan have gone through more surgeries in the first ½ year of their lives than we and our families have gone though in our entire lives, combined.  But that is what makes them special little miracles that we were blessed with on that September day.  They are, and forever will be, our heroes.  They have showed us that anything is possible.  And if they I have to suffer through another few surgeries to make their lives better, I am willing to do that.  Because really, surgeries are worse for parents than they are for babies.  Case is point:  here is a picture of Aiden, hours after his shunt bilateral hernia repair.  I don’t know if I’ve ever seen a happier boy.



A few things that might be helpful if you’re dealing with surgery after NICU:

1.       Most hospitals require preemies to spend the night after a surgery, even if the procedure is usually outpatient.
2.       Your LO will probably be scheduled for an early morning surgery because of the eating restrictions.  If not, you can probably request an early slot.
3.       You will be asked to feed your child shortly after they wake up from anesthesia.  They do this to make sure there is no nausea/vomiting.  It’s also a requirement that your child resumes a normal eating schedule prior to discharge.  I would recommend bringing bottles, formula and water from home (unless, of course, you BF).  The hospital will provide these items eventually, but in the meantime it is good to have your own.  Also, your baby is probably used to the way formula tastes with the water you normally use.  You want to keep everything as consistent as possible.
4.       You will probably spend a few hours in recovery before you get a room for the night. 
5.       Beware, the nurses taking care of your LO for the night will likely not be the equivalent of your favorite NICU nurses.  Your child will probably be in the PICU for recovery, or the regular children’s floor, so the nurses don’t deal with infants on a regular basis.  In short, we are all used to way the NICU is run.  This will be different.  Not bad, just different.
6.       Bring blankets, books, a toy or two, pacifiers, and any soothing items that you have for baby.  Also bring a going home outfit for your LO.
7.       Bring warm socks, a sweater or blanket, cell phone charger, laptop, books/magazines, drinks and snacks for yourself.  You will need to pass the time as you wait for discharge.
8.       Bring any medications your child currently takes.  While the hospital provides these, they may take a while to get them to you. 
9.       It is ok to tell the doctors and nurses what is normal for your child in terms of disposition, eating habits, crankiness.  If something they notice is delaying discharge, and you know that this is normal for your child, speak up.
10.   Once you are comfortable, and the doctors agree that discharge is a good idea, speak up and ask multiple times when you can go home.  Otherwise they will forget about you and you will spend your entire day waiting for them to print four pieces of paper for you to go home.





               
Aiden and Ryan today!


It all started on April 30th, 2011, when I POAS and saw that magic word “Pregnant”.  I had been so used to seeing “Not Pregnant” that my heart literally jumped out of my throat.  We had been trying for nine months, ever since our trip to Europe in August 2009 where we visited Ireland, England, Poland and Italy.  I remember running down to the basement where DH was cooking (we had construction going on at the time so we were using the basement kitchen).  I showed him the pregnancy test and started crying immediately.  We embraced and stood there hugging for what seemed like an eternity.  I was supposed to run a half marathon the next morning with my sister, but opted out of it.  I knew I was only 4 weeks along so I didn’t want to risk anything happening to this tiny being growing inside of me.

The next two weeks went by without a hitch.  I had an u/s scheduled for my ninth week to date the pregnancy and meet my new OB.  At 6 weeks I experienced some bleeding.  We went in for an early u/s expecting to be told that I miscarried.  When my OB started the u/s he told me to relax and that it was likely that nothing was wrong.  The next words that came out of his mouth would change our lives forever.  He said, “Do you have a good heart?”  I said “yea, why?”  He said, “Well, you’re having twins!”  I never laughed and cried so hard in my entire life.

I immediately bought Dr. Luke’s book about carrying multiples.  I spent the next few days reading through the chapters and getting myself anxious.  I read all about PTL and other complications that are common with twin pregnancies.  At one point, DH told me to put the book down and stop making myself crazy.  So I put the book down and never turned back.  I spent the next few months taking it pretty easy.  I did a lot of lying down after work but I also did my fair share of tidying up after the construction going on in our house.  And I was seeing my OB every three weeks.

On September 12 I was put on bed rest due to a shortening cervix.  I went to the hospital with DH for a routine growth scan and a cervical check.  When they measured my cervix it was at 1.2cm.  The cutoff for bed rest is 3cm.  I was monitored for contractions (I wasn’t having any) and my OB was called to come a check on me.  She checked my cervix again and gave me the bed rest talk.  I cried.   But mostly because I was nervous about not being able to work, and how we would afford our mortgage for the next 4 months, not because I was nervous about carrying to full term.  I convinced myself that I would be in bed until I was 38 weeks.

Exactly one week later we went in for another cervix check, and much to my surprise my cervix was no longer measurable.  The technician who measured it didn’t say anything at first.  She simply put the wand down and left the room.  I knew something was really wrong.  She came back with the doctor, who checked me again, and they immediately told me I was being admitted to L&D.  While I was waiting for a bed, I heard them say I had a bulging bag.  I never heard this term before, but I knew what it meant. 

I was admitted to triage and hooked up to a mag drip and IV antibiotics and three monitors – one for each baby and one for me.  I spent the next 24 hours there not able to eat or drink anything for fear that they would have to perform an emergency C-section.  I was contracting the whole time, every minute or two, but I didn’t feel the contractions.  A neonatologist came to my bedside and explained to me and my husband all the complications our children were faced if they were born now, in a week, in two weeks, etc.  I felt like I was living a dream. 

The next day I was moved to antepartum because I was no longer contracting.  DH went home and brought me my laptop, some magazines and books, a hairbrush, my toothbrush and anything else he thought I needed.  We were ready to live in the hospital for the next 3.5 months.  I wasn’t allowed to get up to go to the bathroom and the doctors were no longer checking my cervix for fear of breaking my water.  I was told to inform my nurse of any contractions, bleeding or discharge.  DH stayed with me every night and went to work in the morning.  Five days later, I convinced him to go home and sleep in our bed.  He needed it.  He didn’t have work the next day so he would be able to sleep in.  He went home and I played on my computer.  I stumbled upon the Preemie page on TB and opened a post where everyone wrote about how their LO’s are doing now.  It gave me so much hope.  I grew tired and went to sleep.

At 4:30am I awoke to some bleeding.  I immediately called my nurse who came with the resident on call.  She checked me with a speculum, and immediately told me there is too much blood and she has to take me to L&D.  I asked her if I should call my husband.  She said yes.  When they moved me onto a stretcher, I looked over at my bed and saw the blood.  I said “Oh fuck!” when I saw how much there was.  As they wheeled me to L&D, I remember feeling very calm but a million thoughts were racing through my head.  I have no clue what they were.  The Drs performed an u/s to see the babies’ postioning, and the whole time I felt this urge to pee.  I knew it had to be the pressure of the babies on my cervix. 

I was moved to the OR and I remember it being so cold.  The anesthesiologist was so nice, he kept telling me not to worry, that they will take care of me.  As they prepped me for surgery I made my mind slow down because I wanted to remember everything.  I felt like I was in a movie.  All I saw were these faces with masks on.  I couldn’t even recognize my own OB, they had to point him out.  I later found out that he made it to the hospital in 12 minutes.  Seconds before they put me under (there was no time for an epidural so they have to knock me out), I was told my husband had made it to the hospital.  I was so happy. 

I woke up in recovery and immediately started crying.  It was Sept. 25, 2011, and I just kept repeating to myself that today was my children’s birthday.  And instead of it being the happiest day of my life, it was the saddest.  DH told me the boys were ok, he hadn’t seen them yet but they were alive.  Then the recovery nurse asked us what their names were.  We always had the name Aiden picked out for Baby A, but Baby B was a tough one.  We narrowed it down to Paul and Ryan, so I let DH pick.  He picked Ryan. 

At some point DH left, maybe to eat or see the boys, I’m not sure, but my dad stayed with me.  I cried the entire time and he just held my hand.  I will never forget it.  I later found out that the bleeding was caused by a placental abruption, and that Aiden’s feet were hanging out of me by the time I was put on the operating table.  From the time I called my nurse, to the time the boys were born, only 45 minutes has passed.



In many ways this isn’t a birth story at all, because I wasn’t awake for any part of the boys’ birth.  I often think about why this happened to us, and I try to understand the very difficult decision God made to put us in this situation.  My simple answer is this:  God put me in the hospital to save Aiden.  If I was at home when the bleeding started, we never would have gotten to the hospital in time, and we would’ve lost him, and possibly Ryan.  I thank God every day for making this decision for us. 

Aiden, 3 weeks old

Ryan, 3 weeks old

...but we wish it did! All of us have heard comments like, "Well, s/he's home now - isn't it great to have life back to normal?" Except anyone who's had a full term baby (or no baby at all!) have no idea how different it is being a preemie parent. Sure, their weights are up and they're starting to look normal by your standards but behind the scenes we're rushing them to more specialist appointments than most adults have had in their lifetimes, speaking in codes and doing math in mLs, and frequently still responding to alarms. Even after equipment is gone we're on a totally different timeline - a preemie alter-universe - so please respect that.

Here is what some of our moms wanted to share. Please feel free to add your thoughts on this topic in the comments below.



First of all I would say..once you're a NICU mom.. you're ALWAYS a NICU mom.. I talk in ML's (vs. oz's) when I'm talking about how much my baby eats; I always feel like I'm educating people on why she's smaller, why she eats differently, e...tc. etc. NICU moms are in a cult all their own.. :). I would ask for full-term baby mom's to consider our feelings when they talk about 'nesting' or 'getting the baby's room ready'..for most of us didn't get to do that. My baby wears oxygen for a little 'help' .. I'd like to explain to every one that looks at us cock-eyed.. that my baby won't be on O2 forever.. that she was actually off of it for 35+ days in the NICU then she had surgery for something ..and got back on it. Instead of throwing us the 'oh no poor baby' daggers.. ASK! OR.. MYOB! :)



I'm a new preemie mom (5 days, my twins were born Friday at 34w2d, daughter had IUGR so she is small for her gestation).

I'm already annoyed at how many people think they "can just come home". Also, the, "I want to see pictures". My kids had CPAPs on and you cannot even see their faces well. Another question asked immediately is, "when will they come home". Which of course we don't know. I don't know if I'm just hormonal but it's definitely annoying to me. I do have a medical background (not a nurse but work in cord blood donation and collect cord blood for use in transplants) and the funny thing is is some of the friends asking also do too. I would think they "would know".




Party planning, visitors, outings, etc. Especially in the 1st year... Keeping them "cooped up" is a life saver, not something that is harmful to them or a disservice. It's for their protection, building immunity is a fine line for these preemies.

I also wish I had the answers about "when" this will happen or that will happen or "why". Oh and another thing I'd add, that preemies to qualify and "need" certain things that FT babies don't (such as therapy, and in a lot of cases additional health benefits), we aren't "taking advantage" of things, its because our children actually NEED these.




Being a preemie parent makes it very complicated to come up with an answer to "How old is your baby?"



The whole sickness thing. Yes, they look big and healthy, but their lungs are not the same as if they were born term. Therefore, I still need to be diligent about something as minor as a cold, even if she weighs 12 lbs.



I wish I could explain how difficult it is to remain on lockdown through RSV season and not be able to take my DD to baby yoga, mommy and me groups, or just to go go out to Target, the grocery store or out for dinner with my husband and DD. Even though my DD is growing like a weed and is 4 months old now, we still can't take her out due to the RSV risk. It is a pain in the a**** when I have to ask 'are you healthy' whenever I want to go to my mom's house for a visit. Also, PTSD from having a preemie is real and you don't just 'get over it' once you take you baby home from the hospital - the mental effects of having a preemie in the NICU don't go away once you come home from the hospital; I still have a hard time hearing about full-term baby mom complaints and the inaccuracies presented on Grey's Anatomy regarding preemies.


My DD was born at 34 weeks. She spent a week in the NICU, and a typical 34 weeker spends more time there, but she did very well, so she was able to be released at 35 weeks. It has been really hard to deal with parents of fullterm babies...they think that things will work for a preemie just like they worked for their full termer. It just isn't so. I am trying desperately to BF, but with LO being in the NICU, even with pumping, my supply really stinks. LO also got formula in the NICU, so I have had to battle with nipple confusion. A close friend of mine keeps offering her breast feeding advice, which is so nice, but has no correlation to my child. Her child was able to be with her in the hospital and be released home with her. we have an uphill battle due to the NICU stay. Other moms also think that LO is just like their baby, just a little smaller. I have found that just like advice given when I was pregnant, I just have to take it in stride and remember to focus on me and my LO. Only I know what's best for her, and even if it is difficult to hear the advice bc it is frustrating when others don't understand our situation, I am trying to do the best I can!!!


By far, the hardest thing to convey to friends and family once we were home from the hospital was that she was STILL a preemie, and we needed to treat her as such. Not only were we extremely vigilant about germs (wanting to avoid rehospitalization) but we were also trying to counteract all the stimulation she received for 3 months in the NICU. I felt so bad that she was constantly surrounded by bright lights, beeping machines and loud nurses (not to mention all her procedures and surgeries), that I wanted to make her time at home as peaceful and unstimulating as possible. Even her neurologist told us, "Make your home like a spa-- low lights, soft music. Try to counteract the NICU." So we did. And I think people had a hard time understanding a lot of that for her first few months home.
The biggest issue that we've had so far with trying to explain to full term parents is the RSV risk and risk of getting sick. We wash hands frequently and are on lockdown through the RSV season but are still getting questions and comments like "kids need germs" and people looking at us like we're being too overprotective. While we understand both of those concepts and don't want to become helicopter parents, our LO's physical makeup just won't be the same as a full term baby until they catch up at around age 2, and it's just too risky to chance until then. Once I know that her physical development can handle it if she gets sick, I will absolutely take her to mommy and me, play dates, etc. since I DON'T want her growing up "in a bubble". I guess the take away I would want is that the after effects of a preemie birth can continue for months or years, and to please not treat me as though I am being "that parent", or as though "she's home, so everything's ok". Even though she may look like a "normal kid" to you, not having the same amount of time in utero means that there are no quick fixes.


Once a preemie mom, always a preemie mom. It's so hard to explain and have others understand that preemie babies, even though they have left the NICU, are much more affected by illnesses, especially RSV.




I think it's hard for FT moms to understand how our whole first year (and more) are so different. Especially for those of us who are quarentined. Constant vigilance about germs, countless visits to specialists, and not doing "normal" things... like playgroups. Also, preemie moms expect and even welcome therapy. We watch closely for any sign of delay and overanalyze it to death. We live in a constant balance of anxiety and justified worry. And birthdays are both cause for celebration as well as a day to remember trauma.


That prematurity require treatment well beyond release and while some of that treatment doesn't look like medical treatment, it most certainly is. The things we do are by doctor's orders. I'm not choosing to quarantine my daughter, my doctor told us to do that. If someone else's doctor told them to give their child an antibiotic for strep-throat, no one questions that. My doctor prescribing a quarantine for my child is no different than that.

Another thing is that I feel very alone in parenting her. I can't go by the baby books or what my friends children are doing. My 15 month old still has to eat purees and drink Elecare. I am so sick of making purees and paying $$$ for that formula but I can't just feed her normal food because she has two teeth, oral aversion issues and is allergic to milk. Since every preemie is so different, they need more specified care in even the simplest things like eating. It is frustrating to feel like I can't do simple, caregiving tasks without first discussing them with a doctor or therapist and it is more frustrating when people assume that I am just being controlling. I'd love to be able to be care-free parent I want to be.


I wish people would understand that just because LO is past her due date now that doesn't make her like a full term baby. We still have to be careful with germs and her development (milestones) are going to be 2 months behind. It's not fair to compare her with her cousin who was born full term 3 days after her.


Definitely the visitors, but for us, trust was a really big thing. It took us a good month to let anyone even hold him. I was so afraid to let anyone except DH hold him. He was past his due date before anyone besides us or medical personnel... had held up, and boy oh boy did I hover. I guess in my subconscious, I felt like only we knew what he had been through, and thus, only we knew how to hold him or take care of him. To this day, only 2 other people have even fed him. He is almost 7 months old.

Also, we aren't 'those' parents who are crazy and germophobes. There's a reason.


I am still traumatized by my child's sudden birth. Although she is here, healthy and happy, those feelings haven't just disappeared for me.




The restricting visitors/being overprotective/staying home during rsv season...a lot of family members and friends just didn't get it. We got a lot of slack from some family members in Pittsburgh when we didn't make the 5 hour trip to visit... for Christmas this year. My cousin said these words on Christmas eve to the rest of my family "my friend has twins and she doesn't keep them cooped up in the house all of the time. I can't believe they didn't even come for christmas". There is a reason the twins get rsv shots every month, why we avoid public places other than the doctors office, why we won't let anyone in the house if they've been around someone who's been sick, why we have hand sanitizer in every room and make sure everyone uses it before touching the kids. It's not to be mean, to be hermits, or to be "crazy" parents. Even though they look like "normal" babies, their immune systems and lungs aren't just yet. I wish people could get this.


One more: not all preemies are equal. Your friend's 2lber who was on breathing treatments for 4weeks probably needs more "lockdown" than my 2lber who wasn't on any breathing treatments after the first few hours. Trust that both your friend and I have discussed post nicu care with our team of specialists and are following accordingly.


I am just starting my nicu journey and am already annoyed mothers of full term babies. Nora was due the day after mothers day, and one of my sisters were up at the nicu yesterday and I said something about if she is discharged before mothe...rs day that I guess my first mothers day would be a quiet one. And she didn't understand why if she was discharged she couldn't be with our family that day... I tried nicely to explain that her being a premie is a whole different world than my sisters born at full term...yeah she still didn't get it.



Most of things we do are by doctor's orders. I don't choose to keep DS on lockdown because I think it will be fun. We do it because it is what is recommended and we don't want to end up back in the hospital because I decided to take him to the grocery store. Stemming from this we get comments (mostly from casual acquaintances who ask things like is he doing this yet...) to that affect that our lockdown and "lack of socialization" is what is causing DS to be developmentally delayed, even for his adjusted age. In actuality he is probably doing better than if we took him to the mall every day and to story time at the library because instead of him spending the time in the stroller we're on the floor doing his OT exercises for an hour twice a day.

Another annoyance is that people just don't understand all of the eating problems that preemies have. Yes DS is HUGE but that still doesn't meant that we spent, and are still spending, a lot of time with him working on his suck, swallow, breathing, and having things in his mouth.


and I'll wrap up with this powerful letter:

Dear everyone,

You might not understand what it's like to have a preemie and I pray to God that you never know what the inside of a NICU looks like. I speak a language consisting mainly of acronyms like PDA,CPAP,P...ICC, CBC and many others. I don't intend to dumb things down when I speak about my NICU experience, you simply won't understand...how fortunate for you.

I spent 139 days in the hospital watching my baby struggle to breath, suffer numerous medical procedures and the pain of that will never go away.

Being a parent to a preemie means being extra cautious about every single thing my baby does or does not do. You may think I'm crazy because I use hand sanitizer 2947928472 times during our ten minute conversation.

When I say your baby is so fat, cubby, big...pretend I said your baby is healthy and looks great...because that's really what I mean. That being said, I apologize in advance for going on and on about trying everything to make my baby gain weight.

The acronym language continues post-NICU so if you need further explanation, don't hesitate to ask, us preemie moms love informing the general public about our preemie. There's this horrible flu-like virus called RSV, that's Im scared to death my preemie will contract you'd think it were the bubonic plague.

My preemie gets OT, PT and ST. She is DHH. Yes we receive SSI, which helps with her medical costs. That's all code for she receives occupational, physical and speech therapy. She is deaf/hard or hearing (the life saving antibiotics she received in the NICU damaged her auditory nerve). We receive supplemental security income to pay for her medical costs.

My preemie is a miracle...this has changed my entire view of the world. The fact that my baby is still not sitting on her own, crawling, pulling up onto furniture, or speaking full sentences makes my heart hurt but seeing my baby smile, wave and eat Cheerios warms my heart...it's the seemingly little things that amaze me.

I don't mean to sound unkind but not all preemies "catch up" by 2 so please don't feel sorry for us. Don't pity my baby.

Other stuff just FYI:

1. Vaccines are not the worst thing I've seen my baby endure....please don't compare.

2. Please don't always bring up the preemie thing....we are "normal" people....let's talk about baby stuff like which diapers you use, share your teething tips with me and make me feel like any first time mommy.

Love,
Preemie mama to a 24 week miracle baby
Thursday, April 12, 2012
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.
Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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