November 17 is World Prematurity Day


This is the second world prematurity day that we are here for since Roo was born. Last year, I was still in a fog to do much other than have it cross my mind. This year, I’ve been reflecting on it much more.

We are one of the lucky families. The toll has been great on us but much easier than other families I know in real life or online. However, our story is our story and the toll has been great.

I never thought much about prematurity. It never crossed my mind that Roo would be premature. But, who does like any other disease or illness or struggle?

For Roo, the toll has been ongoing medical and physical challenges. From her NICU stay to the reflux to the surgery for her crossed eyes to the weekly physical therapy to her eczema and food allergies, it has been one thing after another. I wish my little girl could get a break.

Yes, all of those things could still have happened to her if she was full term but I think many of her challenges are tied into her early birth.

Even with all of those challenges, Roo is the happiest, sweetest baby I know (I’m biased!). She is sensitive and shy but she is a caring and sweet little girl who rolls with the punches and takes the challenges head on. She doesn’t know life to be any differently and for that I’m grateful that she doesn’t realize that all little kids don’t need physical therapy every week.

As for me, the impact is greater. Emotionally, I was not prepared for the changes to my life. I know that life changes after a new baby arrives but life with a preemie changes even more. It has taken a toll on me as I struggle with depression. It has taken a huge toll on my marriage. MH and I struggle with some issues separate from life changing with a preemie but I think if the stress of dealing with the challenges of a preemie baby weren’t there, it would be easier to work on and fix those other problems. But, there is only so much room emotionally and psychologically to deal with challenges and we have to put Roo first right now. I worry and wonder if our marriage will survive. I now understand why parents of children with special needs have a harder time keeping their marriages intact. I don’t want to fall into the category where we fall apart. Some days I think it would be easier on my own. That makes me sad.

Adding to the stress, we were not prepared financially for the costs of having a premature baby. Our health insurance is great but has a very high deductible and we are afraid to make any changes for fear of losing access to the great providers we have established relationships with already. That high deductible means we pay a huge sum of money out of our pockets before insurance kicks in, which means any inkling of extra money is gone. PT alone is $500 a month or so that would have gone into savings. It’s hard. And, MH alone makes great money. With my extra income (I actually make more $$$) than MH, we will be able to get back on our feet more quickly and start to make up for the lack in saving the past year and a half.

Had we known what we were facing, in hindsight, we would not have purchased a 2,000 sq. ft. 4 bedroom house in the suburbs where we needed to buy another car, pay for lawn service because we have no time to care for the yard because we are busy caring for our child, etc. We would have not needed the fourth bedroom because we are not having another child that ER thought we might have tried for before all of this . We have three rooms in the house that virtually are unused because we haven’t had the time or the money to do anything with them. I love our house but we may need to move.

I’ve been slowly losing friends. It is hard to maintain friendships with old and new friends when I’m depressed and focused on Roo. My old friends were used to me calling them and returning calls. Now I’m too exhausted and I am also tired of hearing their words of “encouragement”. They don’t understand because they don’t have a preemie in their life. Distance makes it hard. I used to be able to hop on a plane and visit them but with our extra tight finances that is impossible. So my long time friendships are feeling very distant and farther away than ever. My new friends don’t understand either. Plus, I will make a play date with someone and then they or their kid gets a runny nose and so se have to reschedule. It’s a challenge. I’m feeling lonely. I know this will get better as Roo gets older and her needs diminish but I feel like now is a time when I need those friendships the most and I don’t have the energy to feed them.

This is a long-winded way of saying that life with a preemie changed in ways that go beyond the physical needs and challenges. The challenges are far-reaching. Life is hard no matter what. And, as one challenge ends another will surface. Overall, my life isn’t bad. I’m dealing with first world problems, which aren’t really too hard in the bigger picture. I should quit my whining.

Getting back to the point, World prematurity awareness day is a reminder that millions of babies around the world are born too early. We all need to be aware of the issue and do our part to help stop this problem. Visit the March of Dimes website and make a donation to their efforts to find a solution to ending prematurity. Many premature births like Roo’s happen for no rhyme or reason – even with perfectly healthy pregnancies and mamas like me. We were lucky to have world-class providers keep our little one with us.

Thanks again for following, reading, supporting Roo and me!!

(Top photo is of Roo in NICU towards the end of her stay. The bottom photo is of Roo a couple of weeks ago!)

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One Year Home Anniversary


One year ago today we brought Roo home from the NICU. It is amazing how much has changed. She was so tiny and she still is but now she has her personality and doesn’t look like a preemie anymore. I’m still in awe of myself and what we did to get through those first few months – hell, the first year. It was freaking hard. It still is.

I don’t think parents who have full-term babies understand. I know they want to but it’s impossible. I don’t blame them and I’m glad they aren’t in the same position but it makes it hard for them to completely celebrate these milestones like I do 🙂

Here are a couple of photos to compare how big she’s gotten. The first is of she in her car seat on the way home from the hospital. The second is from two days ago in our backyard.

Thanks for being on this journey with me. I appreciate and love you for your support, encouragement and strength.

Xoxoxo

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Therapy


I’ve started to see an individual therapist.  I’ve been feeling incredibly depressed lately and it has gotten pretty bad.  I feel completely unmotivated, angry, sad.  I don’t feel like myself and I decided it was time to do something about it.  A friend told me about her experience on antidepressants and how it helped to lift the fog of negativity so she could start to feel like herself again.  I haven’t broached the topic of antidepressants yet but I think I will soon.

I LOVE my therapist.  From the moment I met her and started to share with her (just my background and family history), I felt like she “got me.”  She even was able to articulate some feelings and put a label on them when I’ve been struggling for some time to do so.  As you know, I’ve been struggling a lot with MH and I brought up my “issues” with him.  She said that she wants to work with me on those because I’m committed to working on those but first I need to deal with the TRAUMA (she defined my experience as trauma) of the miscarriage, leading to a difficult pregnancy, leading to bed rest, leading to premature birth, etc.  She believes that when I’ve dealt with the emotions of the trauma of one emotionally challenging thing to another that I will better be able to work on my relationship with my husband.  I love it – I just wish I could speed up time so I feel better faster.

One of the homework assignments was for me to put down on paper each individual experience as a fact and then write about how I felt then and how I feel about it now. I think that I’m able to upload it for you to read (sorry it is so tiny).  These are deeply personal feelings and thoughts and I hope that you will be respectful if you choose to comment about what I’ve written.

Therapy Writing

I realize when looking at the whole picture that I was depressed through most of the last two years.  That I have felt very alone, scared and overwhelmed through the miscarriage, feeling so ill with my pregnancy with Roo, my water breaking, the hospital stay and even now dealing with the ongoing appointments with occupational therapists, nutritionists, etc.  I should probably write about it more here.  I just don’t have the time and I’m exhausted (and depressed, which doesn’t help).

So, maybe some of you feel the same way as I do, even if you haven’t been down the exact same path as me.  Please share with me.  I know I’m not entirely alone here.

xo

March of Dimes March for Babies


I’m walking this coming Saturday in our local March of Dimes March for Babies. I decided to do this very last minute. MH is doing it with me!!

The March of Dimes provided us with a lot of resources as we were preparing in the hospital to have a premature baby. Their ‘programs’ didn’t completely prepare us but they helped us understand what we might be facing and they certainly educated us on the language used with preemies in the hospital. I’m grateful for the March of Dimes and I hope that they continue to so the hard work they do to prevent the premature birth and death of infants.

The weather is supposed to be gorgeous without rain and so it will be a perfect family activity for us to do together.

I’m brainstorming a way to post the link to my fundraising page without giving away my personal information. Again, it’s not because I don’t want YOU to know who I am. It’s because I don’t want “them” to know about this blog.

I think for now, if you are interested in donating to my fundraising cause, please leave a comment along with an email address and I will send you the link. Thanks in advance!

Baby Roo’s Birth Story: Part Four


To catch up on the first part of Roo’s birth, please read Part One, Part Two and Part Three.

Around 11am, the attending OB came into my room and said that one of the doctors would be coming in at noon to check and see how far I had progressed.  Another one of the doctors came in shortly after and offered to check me right then.  So he did.  And guess what?!  I was fully dilated to 10 cm and I was 100% effaced.  I was ready to go!  However, they decided to allow the baby to descend further down the birth canal (called laboring down) for another hour.  They would get me ready to push at noon.

MH went to get lunch because we knew that once the baby was born, he would be heading directly to the NICU and what was to come was completely unknown to us.  At 11:45am, the doctor who would deliver Roo arrived and decided to check me once more.  She said that it was time – we couldn’t wait until noon.  Once more, our room turned into a flurry of organized chaos.  The labor room was transformed into a delivery room.  Within 15 minutes time, the doctors and nurses were in their delivery gown outfits, my bed had been transformed into a completely different bed without me even having to get out of it (!), and I was ready to push.

I had no idea what I was doing – having not been through the classes – so my labor nurse (who was amazing) walked me through exactly what I needed to do.  Oddly, I was starting to feel some of the contractions through my epidural.  They were getting that strong.  They weren’t painful but I could feel the pressure of them.  With each contraction, I was told to take a deep breath and push to the count of 8 or ten.  I would do three pushes per contraction.  Exactly at noon I started to push.  Because of the epidural I could not feel if my body was responding to the pushes and I was relying on the doctors and my nurse to tell that I was doing it correctly.  I apparently was pushing really well!

About half way through pushing the doctor asked if I wanted to feel the baby’s head.  I said yes and I reached down and touched Roo’s head for the first time!  It was DISGUSTING!  Her head was squishy and very strange feeling!  I didn’t like it but I was so happy to have actually felt Roo!!

Only a few more pushes and all of a sudden Roo was born!  It was surreal.  I saw her and heard her give a cry.  I was surprised as the doctors warned me repeatedly that she might not cry and she might need various interventions to help her breath.  We were both so happy that she didn’t require any of those interventions.

Ma.deleine L.uciana was born at 12:31pm on June 21 and weighed 3 pounds 14 ounces and was 16 inches long.

She was immediately taken by the NICU team for assessment and before she was whisked up to the NICU, she was brought over to me for a quick kiss.  It was the first time I saw my Roo and she was adorable!

MH went with Roo to the NICU, where they did various tests, inserted her IV and several other tubes and leads into and onto her body.  MH was with her for a couple of hours.  I, on the other hand, was being sewn up in two different places, where I had two tiny tears.  I also ordered lunch and chatted with my labor and delivery nurse, who like many of us, was suffering from infertility.  She has tried IVF twice and both failed.  I shared my story and we talked about what she was planning to do.  We really connected and I was so glad that we were able to talk about our experiences and connect.

Before I was allowed to go to the NICU and meet my baby officially, I had to be able to walk.  I proved myself and was able to see her.  It was so very hard to not be able to hold her.  I was allowed to touch her and hold her hand.  She was so tiny but bigger than I thought.  She also looked more like a a baby than I thought she would and I was relieved.  I thought she would look like an alien baby like many preemies that I had seen on TV or in photos.

Again, the whole day had been so far a flash of surrealism.  It happened too fast.  I’m not sure that I emotionally was able to register that I had a baby.  Luckily later in the evening we were both able to hold Roo in our arms, which made it all much more real and the story of Roo and us really began!

Baby Roo’s Birth Story: Part One


Early on Thursday, June 7, I woke up and thought that I had wet the bed. I went to the toilet and crawled back into bed to go back to sleep but quickly realized that I was still “peeing” myself. Duh! I wasn’t peeing myself. I phoned the doctor on call who said to put on a pad and if I soaked through it within one hour to meet her at the hospital.

I put on a pad and lay down on the sofa. Within 10 minutes it was soaked through the pad, my underwear and my nightgown. I called my brother, the doctor, and told him what was happening. He said that I should wake up MH and go to the hospital right away.

I woke MH, who was dead asleep, and told him what had happened and he went straight into business mode. He packed himself a bag so he could go to work that morning and we got into the car. I remember talking with him about this being a good practice run for the real deal and that we were lucky that we didn’t have to deal with traffic as it was so early!

Once we arrived at the hospital, I had MH park the car while I asked the front desk where we should go. For some reason, I declined the wheel chair ride to the maternity ward. Looking back, I should have accepted it but I was in denial and walked the long walk.

As soon as we got to maternity, we checked in and they were waiting for us. They took us to a birthing suite and asked me to change into a gown. I had to use the restroom and in doing so I realized that I was also bleeding. As soon as I told the nurse, she said something like “oh your water definitely broke” and I promptly burst into tears.

As soon as I climbed into the bed, they did some sort of litmus test to confirm the fluid exiting my body was amniotic fluid, which it was. Almost immediately, I was asked to sign a number of papers, told we would need to transfer to the hospital that handled high risk pregnancies and had the level 3 NICU and that they were going to do several procedures to me.

The first procedure was to give me an ultrasound to check the position of the baby – she was head down. The second was to hook me up to an IV, where I would be given magnesium sulfate, which would slow any labor down as well as provide the baby with a boost to her brain if I were to deliver her early. The third was to give me a sterile forcep check, which confirmed that I was leaking amniotic fluid (again) and that I was potentially 1 cm dilated. And the fourth and final step was to give me the first of two steroid shots to help the baby’s lungs mature rapidly.

There is a side effect of magnesium sulfate that gives one hot flashes and makes you feel a little loopy in the head. I was given a push of four bags of magnesium, which means they rapidly pushed the four bags through the IV. I felt and acted a little drunk while this was happening, again, I was in denial and was dealing by being silly.

As soon as the IV push was finished, the ambulance arrived to transport me to the hospital. The nurses wished me good luck and off I went with MH left to fend for himself to find his way to this other hospital.

Once we arrived at the other hospital, I was taken immediately to labor and delivery. Some of the same exams and tests were taken there. A very nice doctor examined me and confirmed that I was one cm dilated and that by all sounds, I could potentially deliver that day. I was hooked up to a machine that I came to know intimately by the time I left. The machine monitored both Roo’s heart rate as well as any contractions that I might be having. At the time, I was contracting every 3-5 minutes but I wasn’t feeling any of them.

The doctor told me that I needed to have an amniocentesis test done immediately to determine if I had an infection. As soon as she said those words, I got scared. She told me though that the risks for the amnio that hold true at 20 weeks also hold true for them except the largest risk is that the needle accidentally breaks the bag of waters, which causes death at 20 weeks, but since my water had already broken on its own that risk was already removed. I consented to the exam and held onto MH’s hand tight. Within three minutes of me consenting to the exam, it was over. I didn’t want to see the needle going in so I have no idea how large or small it was and in fact the “pain” that I felt from the steroid shot was worse than the amnio needle going in.

We were told it would take 2 hours for the results to come back and in the meantime we should eat breakfast and try to relax. Right?! If the results found I had an infection they would induce me immediately and if not then we would talk about what options were relevant. My head was spinning. I was terrified and confused.

I might be having a baby that day? I was 31 weeks and 5 days pregnant. I wasn’t ready emotionally, physically or literally! We had just moved into our new house.

To be continued…

And, we are home!!


Photo of Roo’s first car ride home from the hospital yesterday afternoon.

I am exhausted from a sleepless night of being so afraid that I’d miss something going wrong. As annoying as the machines and wires were they provided a comfort that cannot be replicated at home!!

A lot more to come in posts to follow. For now, I love being a mommy and I’m trying to take everything in stride. Clearly needing to catch up sleep and breathe from holding it all in over the past month.

Thanks for being on this journey with me! It is just the beginning!

Xox,
Michelle

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A Sunday Night Update


The past few days have been good and bad.  Good in that things are just moving along really well for Roo and bad in that I’m overly tired and emotionally exhausted.

On Friday, I had a serious meltdown.  I was alone at the hospital and I just wanted to sob.  I was tired and Roo was inconsolable for some unknown reason.  She finally stopped crying when I held her tight in a swaddle and patted her back for a couple of hours.  I literally fell asleep with her in my arms and my one hand just kept on patting!  It was nice.  However, I didn’t want to fall apart in the hospital, so I kept it all in until I got home and went up to bed for a nap.  I cried my eyes out and then fell asleep – kind of like Roo did, LOL!  I was just spent and done.  I was exhausted from pumping on a two-three hour schedule.  The lactation consultants have me pumping all the time to get my milk to fully come in.  It has come in but I guess it isn’t increasing as much as they would like it to and I’m frustrated and also exhausted.  It’s too much though I will keep going for the health and well-being of my little girl!

Yesterday was a much better day.  Roo’s picc line (“permanent” IV) was removed from her arm on Friday so she was a happy camper and so was I!  She didn’t have any problems like she had the day before which was nice and made my life a lot happier.  MH and I spent the better part of the day just hanging out with her.  MH left me alone with her for a couple of hours to run some errands and Roo and I just cuddled in the chair together and took a nap.  I love just snuggling with my baby girl.

This morning we arrived to our little Roo sleeping in a big girl crib!  She graduated from being in an isolette (incubator) to an open air crib!  She proved to the nurses and doctors that she can maintain her own body temperature and is now allowed to be in a “normal” crib!  I’m so excited.  She also is allowed to wear her regular clothes.  The nursing staff has been dressing her and they’ve chosen the most adorable outfits!  We had a good day today.  However, I’m still feeling really emotional and moody.  I snapped at both my mom and MH.  I apologize but I can’t help myself.  I’m exhausted.  They don’t need to remind me that I need to get good sleep and they don’t need to ask me how I’m doing.  Agh!  Leave me alone!  I think you know how I feel so don’t ask me!!!

The best news that we received today is that Roo MIGHT be able to go home this week.  I’m not counting on it and we’re keeping this information to ourselves (in other words not broadcasting it over Facebook or any other way – except here of course, heh, heh)!  Roo has to prove herself with her eating.  She’s taking her meals really well and has done some breast-feeding, which is so awesome for me!  She’s up to 4 lbs. 3 oz., which is really awesome.  I’m really excited and trying not to get ahead of myself.  I know that she could have a set back, which would mean she needs to start over and wouldn’t be allowed to come home until she proved herself again.  Fingers crossed!

The other fun news for the day was that I got to give Roo a bath.  She’s gotten a bath before but the nursing staff did it.  I was terrified but I did a great job and Roo loved it!  She was very calm and looked all around while I was giving it to her.  I think when we get home and she’s big enough I will incorporate it into our bedtime routine!

When she does get to come home, MH and I will do one night in the hospital with her and the nurses and they’ll help us figure out how to care for her “special needs” – in other words, we’ll learn how to properly make her formula concoction they mix with my breast milk, etc.  She also needs to pass her car seat test, where they put her in her car seat for 90 minutes to make sure she can breathe properly, etc.  (We need to get her car seat!).  She also will have to have her hearing tested but I’m not concerned – fortunately or unfortunately, she is sensitive to noise!

Well, that’s all the news that I have from here.  I’m quickly learning that having a preemie is no cake walk.  There are many things that are the same as having a full or close to full-term baby but with several additional layers depending on how close to full term your baby was born.  Luckily, Roo hung on for those two additional weeks inside me – otherwise, our uphill battle would be even harder.

Each day that goes by is easier.  I feel more comfortable holding her with her multiple wires and leads that monitor her various vital signs.  The removal of her picc line was a huge step with one less wire coming off of her body.  MH is also more comfortable with her.  He has changed several diapers, including some dirty ones.  Changing a diaper in an isolette through two arm holes is a challenge but he did great!

Each day that goes by is also less scary.  I know that when she comes home the anxiety will go back up again to a different level.  However, I look forward to it!  I know that it’ll be a different challenge having her home without the incredible competence of the nursing staff to support us.  But, I’m excited to be able to nurse her on demand and to not have to drive in and out of the hospital multiple times a day.

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In fun news, my mom has painted Roo’s nursery.  We chose Benjamin Moore paint color French Lilac for her walls.  The large pieces of furniture except the glider have arrived.  We will arrange them tomorrow when the paint has dried.  And, we’ll start to organize her many clothes by size.  The pack-n-play, which will serve as Roo’s bed until we feel ready for her to sleep in her own room is put together and in our room next to my side of the bed.  I LOVE THIS!!  Roo is coming home soon!!

I think of you all often and apologize for not being as attentive to your blogs as I have been in the past.  Let me get past this brief time and I’ll get back on track.  Know though that I think of you!

Thank you again for your ongoing support and Internet love!

xo,

Michelle

Days 5-6 NICU


Things are much better and I will focus on the positive. I realize that I’ve been really negative lately and I account for it to being overwhelmed and in hormonal overdrive. I’ve been coming home in the afternoons with my mom and taking a nap and them going back to the hospital and that is also helping me a lot.

Roo got out from the bili lights yesterday and I snuggled with her for as long as they would let me! I got to kangaroo her and the nurse put her to my breast but Roo didn’t do much but root around. It was amazing to have skin to skin contact with my baby for the first time since she was born. I am more in love than ever before.

This morning I got to nurse her. This time she took to my breast and ate for about 20 minutes. She was weighed before and after and took about 8 mls of my breast milk. They topped her off with her remaining quantity.

She is doing so well! They put a feeding tube in her nose but she hasn’t needed it. They are worried that as they increase her daily amount that she’ll have trouble staying awake to finish it. But, so far, my feisty little girl has proven them wrong!!

Our nurse today thinks she’ll go home in 2 weeks, which excited and scares me at the same time. I’m ready to being our baby girl home but I also am not ready! We haven’t yet taken the infant CPR class and that worries me.

However, it’ll be ok. I know it! Regardless of when we bring her home and if we’ve taken the class or not we will still be anxious!! I am not getting my hopes up yet though! I can’t be disappointed.

Our baby girl’s weight is up and today she passed her birth weight by one ounce!! Soon she will be 4 pounds!!!

Tomorrow, I will nurse her again. I will also ask to kangaroo again too! It is the best feeling ever.

MH has been coming to hold Roo for a while over his lunch, which is awesome. I’m there sometimes and not for most times. I’m actually glad that he gets some one-on-one time with her. He also changed his first diaper, which is awesome and very hard to do in an isolette! I’m proud and he’s already proving to be an amazing daddy, which I knew he would be before I even married him!!

Roo turns one week old tomorrow. I can’t believe it. The past week has been a whirlwind of excitement, joy and disbelief!!

Thanks for your support and encouragement.

Xo,
Michelle

PS: as soon as her IV comes out later this week, we will get to put her in real clothes!! I can’t wait to put her in some of the adorable outfits my friends and some of you have sent/loaned me!!

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I would like to introduce…


Madeleine Luciana who is thriving and we are more in love than thought possible! I promise more later but am dealing with my mom who arrived on Friday, trying to figure out a new routine of a 3 hour pump schedule to get my milk to come in, NICU visits and trying to get some semblance of life caught up on at home.

I can’t wait to post her incredibly fast birth story – she was ready!! And to share how she is thriving in the NICU. We start kangaroo care today, if she continued to do as well overnight as she has been doing!

Will post more as soon as possible!! I think of you and the strength that you all have and continue to give me, often!!

Xo,
Michelle

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