Wednesday, September 26, 2012
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Every year, as we head into the fall, parents being gearing up for the upcoming cold and flu season.  Parents of preemies and other babies with chronic diseases have another virus they need to be concerned about: RSV.

Respiratory Syncytial Virus (RSV) is an infection that can cause bronchiolitis and pneumonia in very young infants, particularly those under the age of 1.  Preemies, babies under the age of 2 who have congenital heart disease or chronic lung disease, and children with compromised immune systems are at the highest risk for severe illness.  As a result, it’s important to protect your preemie as much as possible so they do not become infected with RSV.

RSV is transmitted through similar ways as a cold.  When someone coughs or sneezes, airborne droplets can infect someone who inhales them or comes in direct contact with them another way, via the eyes, nose, or mouth.  You can also become infected with the virus through indirect contact with a contaminated surface, such as a doorknob, and then touching your eyes, nose, or mouth with your hand.

Preventative measures are similar to measures used to avoid infection from colds and influenza.  Good hand hygiene should be practiced: wash thoroughly for a minimum of 15-20 seconds with soap and water, or use alcohol-based hand sanitizers before handling your preemie, especially after blowing your nose or coughing into your hands.  Avoid those who are sick, and ask people who are ill to avoid visits until they are no longer contagious.  If you need to take your preemie out in public, baby wearing, either in a carrier or wrap, can help deter the general public from trying to touch your child, or you can purchase a small stop sign to hang on the handle of your infant seat (or attach to your stroller) that says “Please wash your hands before touching mine.”  You can purchase a sign at My Tiny Hands or Its a Preemie Thing 

Some preemies will qualify for an antibody shot (Synagis) to help protect them from RSV infection.  Synagis works like the flu shot in that it will help lessen the severity of symptoms if RSV infection occurs, but it will not completely prevent infection from happening.  Synagis is given monthly throughout the duration of RSV season for your area.
 
The CDC website is a fabulous source of information on RSV.  The following are links to specific pages that may be helpful to you as you journey through the season:








Wednesday, September 19, 2012

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/.
Friday, September 14, 2012

At lunch yesterday I met a grandmother and a beautiful baby girl. As most women typically do I got the "Are they twins? How old?" and tells me her baby was 14 months old. We watched the grandmother sign "more" and play games with her etc. Until she told me she was the grandmother I would have swore she was her mom.

After a few minutes came "Who was bigger? How much did they weigh?" and that's when the Preemie-ness appeared. She told me "What miracles I had." And then as she was feeding the baby girl a bottle she paused and explained, the little girl has severe food allergies. Has to have special formula ($75 a CAN) and special made purees. And as a result they were struggling to get her to drop the bottle. But that was the only way she would drink her special formula, so they had no choice.

You could absolutely see the relief on her face when I told her about Addison.... Like "Finally someone else gets it."  As it turns out the baby girl was too a preemie, by about a month. Funny how that almost instantly bonds us preemie families. She told me that her granddaughter had some mild delays too and sung the praises if our county's Early Intervention Program. 

Take a minute to think about this, especially if your are a parent as well. Have you ever had to think twice about what you were feeding you little one. Did every meal take careful planning because they might choke or have an allergic reaction? Have you ever had to be cautious yourself because of an allergy or something else? For most people it's mindless and second nature, for those of us effected it's not. I think sometimes people assume because Addison is eating, she can have whatever. That's not entirely true. Too much milk/juice etc, at once will make her gag or choke and she tolerates so much less then Blake does. Food that is too thick, thin, hard, soft, chewy, the list goes on, can cause the same thing. and guess what, the minute she gags or chokes you can almost bet she is done and won't try again. Would you? You would be scared too. 


Seeing this baby made me thankful that Addison doesn't have any major food allergies (other then cake icing) that we know of (knock on wood). Because that would complicate things so much more in this process. It gave me a dose of perspective and made me realize once again, that we are not alone. It also made me thankful for this miracle that the other baby girl was too. Looking at her she looked like the perfect picture of health. Like Addison she wasn't letting this "hiccup" hold her down. Babies amaze me. Their fight and will to overcome. God bless them and the families that love and support/encourage them. It takes some extra special people to be blessed with such challenges. 


Nora's story started back in May of 2010.  We knew that it would take some time to get pregnant since I have PCOS, so  Todd and I tried to get pregnant for almost a year and a half using fertility pills.  After an entire year we decided to take a break over the summer, and low and behold on September 9th 2011 we found out that we were pregnant!  My due date was May 14th 2012.  I was extremely sick for the first 17weeks and after that I felt great and was able to finally start enjoying my pregnancy, that was until week 25.  

On February 1st, I woke up for a routine doctor visit that was scheduled for 10:30am for my glucose test. Nora was 25weeks 2days gestation. As I was getting ready that morning I started noticing some slight cramping, I didn't think much of it and kept getting ready.  As I got in the car the cramps were getting a bit worse but I thought maybe they were braxton hicks.  I called Todd told him what I was feeling, told him I would run it by the OB but I was sure everything was fine and she would tell me it was all normal.  In the Dr appointment I told her, "ya know the only reason I am saying anything is because they are happening like every 15-20min."  So she checked me and said, that my cervix was softening but was not dilated.  So she sent me home, told me to take it easy, drink lots of water, put my feet up and call her if I have more than 6-8 "cramps" in an hour.  Well I went home, and in the first hour I had 8... I totally tried to downplay them.  I was in such denial and terrified all at the same time.  I thought if I ignored them, surely they would go away.  I was on the phone for most of that hour with Todd, I told him I had had 8, but 2 I could barely feel so we wouldn't count those <--- idiot!   Thank God Todd knew better, he left work, told me to call the hospital and tell them we would be coming into triage.  




By the time we had arrived in triage and I was checked it was 2:30pm and I was already 2cm dilated!!  WHAT???  I am pretty sure I went into panic mode at that point.  The Dr told me I had a slight UTI, he would put me on antibiotics for that, jack me up on Magnesium sulfate (worst crap ever!) and send me to the special care unit.  They did an ultra sound to make sure she was head down, which she was, and to check her weight.   They predicted her at being 1lb 14oz.  I could not even fathom what 1lb 14oz's looked like...I mean seriously...a 1lb baby??   This is where my memory gets fuzzy and I have to rely on what my husband tells me happened.  At 6pm I got my first steroid shot for Nora's lungs followed by my first dose of Mag.  When they gave me the mag it made me sooo sick and it caused me to basically black out.  The mag is a huge muscle relaxer, so I couldn't move my arms, my legs, I couldn't even barely lift my head.  Poor Todd, every time I had to puke he had to run over and completely sit me up.  The nurses told Todd that they had never seen someone react to mag as badly as I did.  They planned on giving me the first steroid shot at 6pm that night and then the second at 6pm the next night, then they realized they didn't have that kind of time, so it turned into 6pm and 6am, then they realized they didn't even think they had that time, so i got the first one at 6pm and the second one at 3am... I am no doctor but I know that it was ultimately God, but also those shots that saved Nora's life.  I know I complain about the mag and how much it sucked, but it kept Nora in long enough to get the shots, and let them be in my system for a while to actually start to work.  I know they tried all through that night to stop my contractions but to no avail.  At 3:30am I was wheeled into labor and delivery and they started making preparations for delivery, even ordering my epidural (which I never received that night).  At around 6:40am Todd sent out a desperate plea for prayers on Facebook, and by 8:30am my contractions had finally stopped, and I was 3-4cm dilated!  They told me then that I would be on hospital bedrest until Nora was delivered and that they would do everything they could to stop it, but she would most likely be here within 7days.  




Over the next few days, we had consults with a MFM (maternal fetal medicine), and with one of the Doctors from the NICU.  They were trying to prepare us for what to expect with the birth of a 25weeker.  Let me tell you, those are the scariest conversations I have ever had, and thankfully I don't remember most of them because of the mag.  Apparently I straight fell asleep in the middle of one conversation I had with my MFM.  The nurses thought it was hilarious that the doctor put in my chart "patient fell asleep, continued conversation with her husband."  haha like I said...the mag and I did not get along!  But I do remember praying to God saying, I will lay in this bed for the next 15 weeks...just please don't let her come early,please!!  God had other plans though... 

Two days later on February 4th, they decided that I was finally stable enough to wheel back out of labor and delivery and back to the special care unit.  They wheeled me out at noon, and at 12:10pm my contractions started again.  This time they were not able to stop them.  I labored, panicked, terrified, and sick to my stomach for hours.  They jacked me back up on more mag then I was on the previous few days and told me to try my best to relax...right.  Todd's family was there, but all I wanted was my Mom and/or sisters, who were all at my other sister's baby shower.  The nurses kept asking me if the contractions were strong and I kept telling them no, I thought if I told them how bad they really hurt that they would give up on trying to stop my labor.  Because Nora was so small they couldn't even track most of my contractions on the monitor.  How they knew I was having a contraction (with out me telling them) was because Nora's heart rate would dip with every contraction.  Todd could see it all over my face every time I had a contraction, but I don't think he quite understand my insane logic of thinking at the time.  He kept saying, Renee I know their getting stronger, you can no longer talk through them.  I just really remember thinking, if I can keep lying about how strong these contractions are, they will keep trying to stop my labor.  Finally around 5pm my Mom got there, and around 6:30 my water broke and they finally told me they were not going to be able to stop it this time, I was dilating way to fast.  I absolutely broke down... I lost it.  I was terrified for Nora, terrified that she would not make it.  They started preparing me, telling me that she would not cry when she was born, she would not be placed on my chest, that I would not see her when she was born, and  they would be rushing her to the NICU right after birth.  I was supposed to have a joyful birth, full of fun, excitement, and anticipation.  Not one of fear, terror, and horror-stricken panic.  Around 7pm they finally turned the mag off, in hopes that I would be able to start to feel my legs and arms, and be able to lift my head for delivery.  As soon as they turned the mag off, my labor progressed rapidly.  By 8pm I was 6-7cm dilated and had just gotten my epidural in a last ditch effort to stop them.  By 9:50 I was 8cm and by 9:55 I was 10 and ready to go!  I have never in my life been more scared than I was in that moment.  I remember just crying in shear desperation, just begging and pleading that she stay in, I kept repeating over and over again...its too soon...she's to small!  



By 10pm my entire labor and delivery room was full of 10 NICU staff (nurses, Nurse practitioners, neonatologist, and respiratory) and then 5 more labor and delivery nurses and a doctor.  You could barely move in that room there were so many people.  With me was Todd and my Mom.  I needed my Mom in there so that Todd could leave if he was able to be with Nora and she could stay and comfort me.  After just 2 short pushes, Nora Katherine was born at 10:38pm weighing only 1lb 14oz and 13in long.   When the doctor held her up for a split second for me to see, I lost it again.  She was tiny and pink but did not cry at all.  I knew she was going to be small, I knew she was going to be beyond small, but you can never begin to prepare yourself for that.  I had no idea how something so small could ever survive.  She took my breath away and I began to pray like I have never prayed in my life.  I must say though, she was tiny, but she was perfect.  Todd stood by my side, listening to everyone working on his precious daughter.  They intubated her right away in my room and tried to get her as stable as possible.  All I remember Todd saying over and over was, "they said she took a breath...they said she is breathing, babe she is breathing...shes breathing"  I knew it was all machine/vent breathing but I just kept thanking God that she was alive.  They worked on her for about 20min before they put her in her isolate, wheeled her next to me so I could get one good look at her, and then they rushed her to the NICU.




Todd was able to see her an hour later, and I was able to finally see her at 1am after my epidural had worn off.  She was the most beautiful thing I had ever seen.  She gripped right onto my finger, opened her eyes and looked right at me.  That paired with the first time I got to hold her were some of the best moments of my life.  

We didn't know until months later how critical her first 12hours of life were.  The neonatologist told us there were several times they did not think she would make it, and every time I think about that I cry.  Nora was born with an infection called Chorio, also within the first few hours of life she had a blood transfusion (within 6hrs of being born) and developed a bilateral grade 4 brain bleed (the most severe brain bleed you can have, that we would find out about 10days later).




They are still not positive on why I went into labor so very early, it could be a number of things, or just 1 individual thing, but unfortunately there is no way for us to know.   I have a bicornuate uterus which can sometimes cause pre-term labor, but I came into the hospital with a UTI and Nora was ultimately born because of a sever infection in my uterus.  There is no way to know if the UTI started everything, which then would have caused me to go into labor, and then being dilated caused the infection, or if the infection came first, if the bicornuate uterus caused the pre term labor etc...  We were told that when a women goes into labor early, if caught very early, a lot of times the doctors can stop it, but when there is an infection the drugs will not work, and the baby knows its uninhabitable and it has to get out.  Which is exactly what Nora did, and I thank God everyday that she did, less she could never have survived in there with the infection.


What she has been able to overcome is nothing short of a miracle.  Everything that happened on those horrific scary days is nothing short of a miracle.    The fact that I had a Dr appointment on the day my contractions started, (I would never have gone in because i didn't think they were contractions), is a miracle.  The fact that they were able to stop my labor if even for a few days, so that the steroids could take effect is a miracle.  The fact that Nora was born alive, even though her blood count was severely low, she was not breathing, she was magged out, and had a potentially fatal infection.... an absolute miracle.  The fact that Nora had a bilateral grade 4 brain bleed... that could not be identified just a few short weeks later... miracle.  The fact that she would later overcome 2 more potentially fatal infections...miracle.  The fact that Nora is a happy, healthy 7month old right now....  MIRACLE!!!   I would never have imagined the very worst, most terrifying day of my life, would also turn out to be one of the best...  I can't imagine having a worse start to your life, but she is a fighter and she is our little miracle.  We thank God everyday for her.  Todd and I are forever grateful of all the miracles God has performed in our lives and especially with our sweet baby girl.  My life changed the moment I had her, in ways I never ever imagined.  I walked into that hospital on Feb 1st one person, and back out May 10th a completely different person.  Nora has taught us more in the first 5months of her life so far, then she will ever know.  I could not be more proud and in love with my little miracle.
Saturday, September 8, 2012

September is Hydrocephalus awareness month.  It is estimated that 1 to 2 of every 1000 babies are born with Hydrocephalus.  This statistic makes it as common as Down Syndrome, yet it is a condition that is largely overlooked in terms of federal funding for research.  Shockingly, we have seen little to no improvements in the treatment and diagnosis of Hydrocephalus in the last 50 years.  This is a problem, especially when many cases of Normal Pressure Hydrocephalus occurring in older adults are misdiagnosed as dementia. 

In short, Hydrocephalus is the build-up of cerebrospinal fluid in the ventricles of the brain.  It can be congenital or acquired.  This build up of fluid causes extreme pressure on the brain, resulting in damage.  There is no cure for this condition, and the treatment, in the form of a shunt, is far from perfect.  50% of shunts will fail within the first year.  Babies who are born with or who acquire Hydrocephalus have a high risk of developing Cerebral Palsy, since they are in the fragile stages of brain development.  Adults who acquire this condition often need months of therapy just to get back to doing normal, everyday tasks.

This is our story.  Aiden & Ryan were born at 25 weeks gestation.  They both developed Grade 1 & 2 IVH’s or brain bleeds in their first week of life.  When the bleeds weren’t resolving, the doctors briefly mentioned Hydrocephalus.  Eventually, both boys had developed Grade 3 & 4 (the most severe) bleeds on both sides of their brain.  At this point their head circumference was being measured daily.  Any big jump in size would be an indicator of Hydrocephalus.

Ryan was diagnosed first.  One of his nurses noticed a 1cm jump in head circumference overnight.  As a matter of fact, you could see with your own two eyes that his head was disproportionately large for his body.  After a few consultations with the Neurosurgeon and a head ultrasound, he was officially diagnosed.  The best form of treatment is a shunt, but he was still too small for one.  He was exactly one month old when they placed a tapping reservoir into his brain.  This allowed for the doctors to drain the fluid every other day, without risking infection each time.  Ryan got tapped every other day for the next month or so, until he grew big enough for his shunt.  It’s amazing how much the pressure on his brain affected him on the days that he wasn’t tapped.  He required more oxygen and had more episodes of apnea when the fluid built up.  By the time he was ready for his shunt, we were anxious to get it done.  We just wanted him to get better.  As we expected, a few days after surgery, Ryan no longer required oxygen.  He was on the fast track home. 

Around the same time, Aiden was also being monitored for Hydrocephalus.  We thought he wouldn’t be diagnosed, but he eventually was.  For some reason this put my mind at ease for Ryan.  This may be a little warped, but my thinking was that at least they would go through this together.  I guess it’s a weird way to look at it.  Aiden got his shunt a couple weeks after Ryan.  He didn’t respond as quickly in terms of oxygen needs, but his lungs were much sicker.  His Hydrocephalus also isn’t as severe as Ryan’s, so he might not have been as affected by it.  Though we did notice a drop in his resting heart rate after the shunt was placed. 

We spent the next few weeks trying to get our boys out of the NICU.  They had a lot of struggles with learning how to eat using a bottle.  A lot of the doctors and nurses thought it was because of their condition.  As a result, they wanted to send the boys to feeding rehab for however long it took them to learn how to eat.  One doctor even suggested putting Aiden on a g-tube, because with his cleft and the Hydrocephalus, she never thought he would learn how to use a bottle.  By the time the boys were accepted into the rehab facility, they were getting the hang of bottle feeding.  And they truly surprised everyone. 

Upon discharge from the NICU, Aiden & Ryan had an MRI scan of their brain.  We had an appointment with their neurosurgeon to discuss the findings.  In short, we were told to expect some form of CP, and that Ryan would need more intervention than Aiden, because the volume loss (or damage) of his brain was much more significant.  In truth, though, no one can tell us what the future holds for our boys.  They currently receive services through Early Intervention, and our hope is that one day they will be able to live independently.  I recently read a statistic that said 60% of children with Hydrocephalus will NOT go on to live independently.  The odds are stacked against us.  But so were the odds of their survival.  And they beat that.  So who knows what will happen.

Although the boys are struggling with some significant delays at this point, our lives are pretty normal.  Our main concern is getting the services they need in order to hit their milestones.  We also have to keep an eye out for shunt malfunction.  The signs of malfunction are vomiting, irritability, sunset eyes (baby looks down all the time), abnormal head growth, lethargy, or decrease in appetite.  So you can imagine that even a simple stomach bug can be confusing to us, especially with a child that can’t speak yet.  Other than that we are a happy family.  We spend time together, laugh, cry, rejoice in the smallest of milestones.  And we do our best to raise awareness of this condition that has touched our lives. 

For more information on Hydrocephalus, please visit http://hydroassoc.org
To follow Aiden & Ryan’s story, please visit http://hydrobabies.blogspot.com
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Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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