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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/.

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.

Premature rupture of membranes (PROM) refers to a woman who is beyond 37 weeks' gestation and has presented with rupture of membranes prior to the onset of labor. Rupture of membranes is more commonly referred to as “water broke” or “broken sac”.  Preterm premature rupture of membranes pPPROM) is a repture of membranes prior to 37 weeks' gestation. pPROM is associated with 30-40% of preterm deliveries and is the leading identifiable cause of preterm delivery.  pPROM complicates 3% of all pregnancies and occurs in approximately 150,000 pregnancies yearly in the United States.[1]


[2]
Causes
At term, programmed cell death and activation of catabolic enzymes, such as collagenase and mechanical forces, result in ruptured membranes.  Essentially, it’s the normal “water broke” process that pregnant women experience, but often prior to contractions / labor.   
pPROM is a bit more difficult to pinpoint causes, however it is likely due to the same mechanisms and premature activation of these pathways. However, pPROM appears to be linked to underlying pathologic processes as well, most likely due to inflammation and/or infection of the membranes. Clinical factors associated with pPROM include low socioeconomic status, low body mass index, tobacco use, preterm labor history, urinary tract infection, vaginal bleeding at any time in pregnancy, cerclage, and amniocentesis. [3]
The course of action for pPROM is significantly different.  Mothers are put on strict hospital bed rest with constant monitoring unless there are other significant risks to the mother and / or baby to consider including fetal distress.  In those cases, immediate delivery is suggested.  The hope is to stop / prevent labor and stave off infection for as long as possible with the goal to keep the baby in for as long as possible until it is safer outside than inside.  Since amniotic fluid is essentially baby urine, a baby can last quite some time in a broken sac as long as infection stays away. 
Magnesium sulfate is often given to stop labor and corticosteroid shots (ex. betamethasone) to help accelerate the development of the baby’s lungs.  Magnesium sulfate is also linked to protecting the sensitive tissues of the brain in premature babies and can lessen the risk of cerebral palsy.  An antibiotic regimen is also started to work against any potential infection and NSTs are conducted at least daily.  Additional monitoring such as ultrasounds to identify size and monitor fluid levels may be prescribed as well.
The vast majority of women proceed to go into active labor and deliver soon after pPROM. With appropriate therapy and conservative management, approximately 50% of all remaining pregnancies deliver within one week after pPROM. Thus, very few women remain pregnant more than 3-4 weeks after pPROM.  Spontaneous sealing of the membranes does occur occasionally (< 10% of all cases), mostly after pPROM that has occurred subsequent to amniocentesis; however, this is the exception rather than the rule. [4]  Women suffering pPROM should ensure they are at a hospital with a Level III NICU capable of dealing with babies less than 34 weeks gestation.  If not, a transfer request should be made to one able to handle complicated premature babies.

Anemia is a common problem among premature babies in the NICU. Preemies are immature, so the systems their bodies use to make red blood cells are also immature. Even term babies have a normal period of anemia around 2 months of age, so you can imagine how anemic a preemie can get!

Most newborn babies have at least mild anemia. Infants' red blood cells break down faster than new red blood cells are made. Babies are usually at their most anemic around 2 to 3 months old, and gradually improve over the next two years. This normal anemia usually doesn't need any treatment other than a healthy diet with plenty of iron.

Because they are born early, preemies may develop more a more severe type of anemia called anemia of prematurity. In the last weeks of pregnancy, two changes occur that help full term babies to make red blood cells. First, a lot of the iron needed to make new red blood cells is transferred from the mother to baby in the third trimester. Also, in the last weeks of pregnancy, red blood cell production switches from the liver to the bone marrow. Because the processes that make new red blood cells are immature in preemies, preemies have a higher rate of anemia and their anemia is more severe than in term babies.

NICU care can make anemia in preterm infants worse. Doctors and nurses try to limit the amount of blood that's drawn for lab tests, but even small blood losses can affect very small preemies.
Anemia can only be diagnosed through a blood test. At our hospital, they took a few drop of blood from the foot. If your baby shows symptoms of anemia, doctors may do a blood test to count red blood cells (hemogloblin level) or to look at the percentage of red blood cells in the blood (hematocrit). These tests are often combined into one blood test, called an "H and H" for hemoglobin level and hematocrit.

Our 31 weeker (born at 2lb 3oz) had anemia. Thankfully, it didn’t require any blood transfusions (those are reserved for the severe cases of anemia), but upon discharge, we were instructed to give 1ml of Poly-vi-sol with iron each day (you can get this over the counter). At her one year appointment, her anemia blood test came back clean, and we were able to stop the Poly-vi-sol with iron.

The medicine tastes pretty bad (and smells worse). Therefore, I recommend mixing it with a bit of formula or breastmilk to mask the taste. You may also find that constipation is a side effect or the iron.

Group B Streptococcal

Group B Streptococcal, other wise known as Group B Strep or GBS, is a bacteria carried by 30 percent of adults in their intestines and 25 percent of women vaginally.  GBS can cause life threatening infections such as sepsis (blood disease), Meningitis (infection of fluid and lining around the brain) and also pneumonia in a newborn or premature baby.  Babies typically get GBS after it is passed from their mother, to them during birth. 

Diagnosing GBS:

• Every woman is tested for GBS during her pregnancy between weeks 35 and 37.  It is a simple test that just requires a sterile swab (Q Tip) to collect a sample from a woman's vagina and rectum. 
• If a woman goes into labor before 35 weeks, then her doctor can still perform the swab test when she comes into the hospital. 
• 25% of pregnant women carry Group B Strep and are considered GBS positive or Group B Strep positive. 
• Women who test positive for GBS usually show no signs of the bacteria infection, however they are at risk for passing the bacteria on to their baby. 
• Group B Strep is NOT a sexually transmitted disease

Preventive ways to keep a baby from getting GBS positive:

• Women who are considered GBS positive will receive antibiotics through an IV during labor.
• Women who go into labor before week 37 will usually receive antibiotics during labor
• Women who's water has broke 18hrs or more before delivery will typically receive antibiotics during delivery
• Women who have fevers during labor will be given antibiotics during delivery.  \
• Women who have already had a baby with GBS does not need to be tested again, she will automatically be put on antibiotics during delivery.
• If you are having a scheduled C section and your water has not broke, then you most likely will not need antibiotics. 
• Women who get antibiotics during labor have a 1 and 4,000 chance of delivering a baby with Group B Strep.  If a Women who is GBS positive does not receive antibiotics during delivery, her baby has a 1and 200 chance of developing Group B Strep positive. 

Signs of GBS Positive in a newborn and premature babies:

• Difficulty feeding
• Irritability
• Hard to wake baby up
• Difficulty breathing
• Blue-ish color to skin
• High/low Temperature
• low blood pressure
• high/low heart rate

How it is diagnosed in newborn and premature babies:

• The only sure way to diagnose Group B Strep in babies is to do a spinal tap to test the spinal fluid for the bacteria. 

Treatment for newborn or premature baby with Group B Strep positive:

• They are treated with antibiotics through an IV for several days, and sometimes weeks. 

Early onset disease:

• Early onset disease means that a newborn or premature baby will show signs of having GBS positive within the first week of life, and it is usually within the first day. 
• For early onset disease Group B Strep usually causes sepsis (infection of the blood), pneumonia and sometimes meningitis. 

Late onset disease:

• Late onset disease can occur from the first week through three months of life.
• Late onset disease can have the same infections as early onset disease, however meningitis is more common with late onset disease. 

Long term effects Group B Strep can cause:

• 25% of babies who have meningitis caused by GBS develop Cerebral Palsy, Hearing problems, Learning problems, and seizures
• Care for sick babies has drastically improved in the U.S., however 4-6% of babies with group B strep die from their infections.  And premature babies are more likely to die from GBS than full-term babies. 

While researching GBS positive to write this article, I could not find very much information on Group B Strep and premature babies so I will share my daughter Nora's story with you.

Nora was born at 25w5 days.  When I went into labor with Nora I was tested for Group B Strep and I tested positive so they put me on antibiotics during my labor.  I also had a sever infection of my uterus called Chorio, so I had almost every symptom listed above to be put on antibiotics to prevent Nora from getting GBS positive.  I had high fever, UTI, premature labor, infection, and I tested positive for it, so on the antibiotics I went. 

Nora was born with an infection but it was not GBS, it was chorio so she was automatically put on antibiotics at birth for the first 2 weeks of life.  After her birth all we heard about was chorio, so I did not think we had to worry about Group B Strep at all.  3 weeks after Nora was born she came down with another infection, again not GBS.  She was re-intubated and treated with antibiotics for a few days and then we continued on our NICU journey. 

It was not until Nora was 2 months old and 34weeks gestation, that she became extremely sick.  We got a phone call in the middle of the night telling us that Nora had stopped breathing (she was on nasal cannula at .5L and 21% oxygen) and that they were having to constantly stimulate her to breath.  We had been down this road a few weeks earlier when she had gotten the infection, and I never wanted to go down this road again.  My husband and I went up to the hospital, where I held my almost 4lb baby girl and had to pat her back, rub her head and beg her to breath every 2 or 3 minutes.  Nora turned every shade of blue, white and grey and those are colors I never want to see on my child again.  Nora stopped breathing several times in 2 hours and the Neonatologists decided it was time to give her poor body a break and put her back on the ventilator,  run some blood cultures, and put her on antibiotics right away.  They were pretty sure it was an infection, they just had to figure out which one it was.  It was not until about 12hrs later that her blood culture came back showing signs of GBS, so they then did a spinal tap on Nora (her 2nd one in the NICU) and that is when they discovered she had GBS positive.