Monday, November 5, 2012


I am a NICU mom, a twin mom, and an AMA mom.  (that last one is Advanced Maternal age).   I was 39 when I was blessed with my twin pregnancy.  I am also an adoptive mom to my 14 year old son.  I did have complications.  Gestational diabetes, a SCH (Sub chorionic hematoma), bleeding, cramping, and throwing up for the first 27 weeks. :/

My sweet girls were born preemie at 32 weeks on the dot.  I am a former NICU nurse, and I never, ever thought I would be a NICU mama. 

I felt cramps, and ignored them.  I would later find out, it was PTL, Preterm Labor.
I am angry at myself for my girls’ early delivery.  I should clarify and say, I hated my body on that day.  It failed my girls and it failed me.  I didn’t want to have babies in the NICU…I was trained to take care of preemies …not at all prepared to be a mom on the other side of the fence.

Lauren was born vaginally and Kate was born via c-section on July 20, 2010.  I recovered on a GYN floor.  Found out later, I was on that floor instead of regular Mother/Baby unit so I would not hear babies crying.  It was too quiet and I didn’t like it at all.  I even asked why I was not on the regular mother/baby unit, and a nurse said, “we do that so you won’t get sad hearing the babies cry.”  I wanted to hear babies cry.  I was a Mom just like those “term” moms.  My babies were in the NICU, but I still was a mom.  Being on that floor away from all the other moms and babies was awful. It was hard enough being in a completely separate building from them.  And to be on a floor with a ton of old geezers in for GYN stuff was depressing.

My girls were in the hospital for 2 months.  And it was NICU hell.

I think knowing all that I did about preemies was good and not so good.  I knew too much.  And it was hard for me to be Mom, because I was used to being the nurse in the room.

I’m going to be honest:  I was not a fan of pumping breast milk.   I did it for my girls.  I knew their bowels were premature, and BM would be the best nutrition for them.  I only pumped for a total of 3 months.  I had to stop, as it was making me a stress case.  I never got much milk and I tried just about every piece of advice I was given to produce more milk.  My body was failing me again, and failing my girls. 




Lauren, my baby A was a chunk.  She was close to 5 pounds.  Kate, my baby B, had IUGR (intrauterine growth retardation) and she was 3 pounds.  Everyone always thinks the chunky babies are healthy, but Lauren was very, very sick.  She was in PPHN (persistent pulmonary hypertension) caused from her PDA and ASD.  I was forbidden to touch her or talk to her for 10 days.  It was the hardest 10 days of my life.  She never opened her eyes until the evening of day 10.  She was moments away from being placed on ECMO and they kept telling me they were doing all they could.  She was a 2:1.  (Two to one).  That means, 2 nurses to 1 baby.  She had so many things hooked to her sweet little body, she needed the care of 2 nurses and 1 respiratory therapist. 



She was on the Oscillator (high frequency ventilator)  for a long time.  Lauren also came home on oxygen, a pulse ox (pulse oximeter), and a cardiac monitor.  She needed oxygen for 3 months.  Thank God above I pushed to get her home, because I would not have survived an additional 3 months in the hospital.  I just wanted my girls at home.
In the 2 months the girls were in the NICU, I only spent 7 hours at home away from them.  My husband insisted I sleep at home, in our bed, so I would “feel better”.
 It was awful being away from them, and I just worried and could not sleep.  From that moment on, I stayed in the hospital with the girls.  I rarely saw the sun.  And I did try and take walks around the hospital and thru the courtyards to get fresh air…but honestly, I just didn’t want to be outside when my girls were sick in the hospital.  I didn’t care at that time if it was sunny and flowers blooming…

I wished I had made a journal entry about the girls shortly after they were born.  I think I was on too much overload to think about a journal.  I know I would have included more details of our NICU time.  I did learn a few things about NICU, that as a nurse, I had never experienced before.  I experienced emotions as a NICU mom, and everyone in our family seemed to not fully understand what I was going thru.  That is how I found this Preemie group on the Bump, and later, I joined them on Facebook.

I would read peoples “siggys” on the Bump to have HOPE.  When I would see other Preemie moms had survived the NICU, and they had a preemie pic next to a current pic of their baby at age 1, I had HOPE.  It got me thru some of the hardest days in the NICU.  Having a support group of other NICU/Preemie Moms is a very healing place to go and share about all things Preemie.  I can say and share things that most full term moms will never understand.  I am so grateful for the women in the FB group. 

Here is my gripe list ;)

1.     My babies are preemie.  They are in the NICU.  They need peace and quiet.  They should still be on the inside.  Please don’t ask a NICU mom if you can come and visit.  Support her thru meals, gift cards to places that offer a carry out menu, and send her text messages.  Even a card.  But give her space and time.

2.    I hate hospitals.  (and I am a nurse) 

3.    My 1 year olds are not doing the same thing your 1 year old is doing.  Don’t point it out.  I know my little ones are delayed. 

4.    If you are carrying a baby, be grateful for every ache and pain you have.  My friends and I would give anything to have those aches and pains.  We would go thru anything to keep our babies cooking and not be in the NICU.

5.    Wash your hands.  Our preemies are more vulnerable to colds, flu’s, and any type of illness.  If you even think your throat is scratchy, STAY HOME.  And a week after you thought your throat was scratchy…I’m still going to ask you to put on a mask. 


If you are on bed rest, I wish you as much cooking time as is possible.  Remember, being on bed rest is truly a full time job.  You are growing a little human, and that is an amazing job.  Every day your LO (little one) can stay on the inside~ is less NICU time.  So do not get discouraged.  Online shop, shop, shop.  J   

If you are a preemie/Nicu mom, I wish you an uneventful stay in the NICU.  And I hope you and your sweet baby are home very, very soon.  ::Hugs for you::





Thursday, October 11, 2012


I wish I had written this sooner as I worry now that some of the details are getting a little too fuzzy, but looking back a year later it all still seems so surreal. I wasn’t strong enough till now to do this, so it just had to wait.

A little background about me, ever since I found out as a child that tiny preemies could be kept alive in safe plastic boxes, I was fascinated. I went to the library and checked out every book I could find, I poured over newspaper and People stories about every set of multiples featured and longed for more details of these mysterious NICU stays. I decided I was going to be a Neonatologist.

18 years later my dreams had almost come true. I was in my last year of Pediatric Residency, married to the man of my dreams, and finally expecting my own baby. My experiences had led me away from planning for a career in Neonatology (I had found my calling as a General Pediatrician instead), but I had loved every minute in the NICU in residency. I loved saving the day by helping a baby take those first precious breaths. I found meaning in those early am hours writing pages of medication and transfusion orders diligently trying to save a tiny patient. But nothing was better than months later when I found out they had gone home. I also witnessed loss first hand. Gut wrenching, heart breaking, sob inducing, loss. Way more loss than I knew I could handle on a daily basis. Neonatology was amazing, but not the career for me.




These experiences armed me with information but also fear of the unknown as I faced my own pregnancy knowing all too well the things that could go wrong. I put on a brave face and told my colleagues, friends, and family that I was staying positive and focusing on how well it was all going, but having faced an early loss with my first pregnancy I was not in denial about the possibility of complications.

Weeks 16-19 were blissful. Morning sickness had finally abated, my belly was growing, and my face was beaming. Residency was drawing to a close and I felt on top of the world. I began noticing tightening of my belly periodically which I attributed to early movements. Over the next few days these sensations got more rhythmic, and I started to worry. I spoke with the OB triage nurse and she sent me in for lab work. It looked like I had a UTI. A week of antibiotics later and the contractions had not abated, so I went in again. My midwife told me that she thought my cervix was shortened so they sent me over to L&D, I was about 22 weeks along.

I called my husband on the walk over. I calmly explained in greater detail what I had hinted about in our discussions over the last few weeks. Our baby was pre-viable, if I went into labor now, there was little that could be done. Forever my rock, he assured me that things would be fine but that he would leave work in case. It was the longest elevator ride of my life. My thoughts raced thinking about the little wiggly being inside of me and the what-ifs. My heart was heavy thinking of all the internet friends whose stories started like this and ended in loss and heartbreak. I was one of the lucky ones. The exam had been wrong. My cervix was long and closed. They told me that this was my “new normal.” They said that if things changed with my contractions I would know and should come in.

The next few weeks were full of excitement. My belly seemed to grow by the day, my pregnancy passed that precious viability milestone, and I started a new job. I was again on top of the world. Then one afternoon the contractions picked up. I started timing them and was having them every 3-8 minutes and at least 6-7 times in an hour. I called my husband at work. He left immediately and we drove in to L&D in the city. They checked me and confirmed the regularity of my contractions. This time I was 1cm dilated. They admitted me even though I wasn’t changing my cervix to be careful.  I received steroids to help with lung maturity. They ordered the standard NICU consult. When two of my favorite neonatologists walked in I almost lost it. It was so surreal. They were sweet and supportive and told me to get back home ASAP. They went through things in detail for my husband, I wanted to make sure he heard the full talk. They tried many different meds but nothing consistently worked. I continued to contract but stayed a 1cm. Because my tracings also looked good they felt reassured and sent me home after 2 days.

I stayed on bedrest for about a week, only leaving the house one time a day for less than an hour each time. Friends covered shifts at work sending worried email encouraging me to do everything possible to keep my baby inside. I busied myself ordering things online for the nursery and using my precious daily excursion to buy things for the “Preterm Labor” bag I was getting packed, just in case. My contractions continued unchanged. At my follow up appointment we discussed the risks and benefits of bedrest and decided that going back to work while limiting standing and drinking lots of water was the plan that made the most sense. I went back to work and felt great to be moving again. My contractions remained unchanged and I was relieved. I was so exhausted from the sleepless nights and days of worrying that working again was a welcomed distraction.

On September 9th I slept in late. I slowly got ready for my afternoon shift, pausing to take a bump picture to post to my board on The Bump as I had many weeks before. Work was a little busy, but I managed to finish early. At home I changed into comfy clothes, ate dinner on the couch with my husband and turned on some mindless TV. Soon after dinner I had 3 contractions in a row that seemed different. I was breathing though each one and they were concentrated lower than any of my contractions before.  I told my husband to start timing them. After an hour of contracting every five minutes I got up to go to the bathroom and get myself ready to possibly go in. I was bleeding… a lot. I screamed for James to grab the bag and camera and threw on clothes.

The drive in felt like it took hours. I was cursing every red light and praying for my little guy to move and let me know he was ok. We rushed in to triage and they seemed a lot less concerned this time. They confirmed my contraction pattern and did an ultrasound. My cervix was long and my little man was moving like crazy. They said they were going to send me home. Just before I started to get ready to put my clothes back on the resident returned and said, “I want to do a pelvic exam just to confirm, is that ok.” She lingered a while and finally looked at me and said, “You’re 3 cm dilated. I think we’re going to keep you.” After a long discussion that I could last many weeks at 3 cm they transferred me to an antepartum room. They started magnesium, which they never had with my first admission since I was never in labor.

The contractions got steadily stronger and closer together. They checked me again and I was still 3cm but more effaced. This confirmed labor, but the team was still hopeful. The NICU attending came and talked with us, reassuring us that 29 weeks was much better than 27 weeks but still prepared us for a rocky start and lifetime risks of cerebral palsy, learning disabilities, and other problems. My husband stayed by my side squeezing my wrist to try to distract me from my contractions. I wanted to walk, scream, move, anything to make the contractions bearable but I was chained to my bed by the monitors and web of IV tubing. They flooded me with fluids and I dreaded to get up to go to the bathroom because every time there was more blood. I passed huge clots and panicked, my nurses tried to be reassuring.

Around 2am my husband hit his breaking point. He could no longer keep pressure on my wrist to distract me because his fingers were numb. He knew that my contractions were more frequent and lasting longer and he was worried. “They’re not doing anything. How long do they expect us to go on like this. I can’t take it.” We spoke to my nurse and she sent the team in. “You’re 6 cm dilated now” they told us, “there’s nothing we can do. Your baby is going to be born today.” I decided to get some pain meds and eventually an epidural so we could rest. They transferred me from antepartum to LDR. Reality hit.

We cried. We called our parents and asked for prayers. My dad and his wife promised to be on a plane within the next 24 hours. We slept.

I woke up with increasing pressure around 12:30pm. They checked me and I was 8cm. I cried some more. As I calmed I realized there was no changing the moment, no going back to the bliss of thinking this could all be stopped, that this wouldn’t be our story. I became resolved. I told my husband that we needed to cheer up and focus on our baby, this was his birthday after all. We talked to him, telling that he had to come out and be a NICU rockstar not a wimpy white boy (white males in the NICU have the worst outcomes). We told him how excited we were to meet him even though it was earlier than we had planned.

I stayed at 9-9.5cm for several hours. My water hadn’t broken and that was slowing my labor. I had lots of pressure and was freaked out that the delivery might happen quickly without the right people assembled. I had been to emergencies in the LDR rooms before and knew that they never went as well as when sick babies were greeted by a fully assembled NICU team in the safety of the resuscitation room that adjoined the ORs. My doctors agreed to move me into the OR and break my water there.
As they wheeled me down the hall, I yelled, “let’s go have a birthday party” and joked with the nurses about my “birth plan.” “I want immediate skin to skin, no bath for 24 hours, and exclusive rooming in. This ugly surgical cap was NOT part of the plan!” I knew if I wasn’t laughing I would be crying. As we settled into the OR, my thoughts raced to crash c-section I knew they were preparing for. I eyed the surgical tech in the corner of the room and willed her to stay put. They broke my water and his heartrate stayed up!

The pediatric team came in to say hi. The senior resident, who had been the year behind me in residency and the fellow, who had been my classmate, looked worried. “It’s ok guys!” I reassured them, “This little guy is going to be a rockstar!” The OBs told them to go and they would call them when delivery was more imminent, “We’re not going anywhere!” The senior resident said. I was immensely grateful. I knew how the minutes could drag by standing around waiting for a delivery while your mind raced to all the orders and notes waiting for you in the NICU, but their presence was reassuring. I trusted them.





The shrill ring of monitor alarms brought the OBs to their feet. My little guy’s heartrate had dropped as he was pushed further down the birth canal by my contractions.  “Time to push!” the high risk OB told me. As I pushed, the alarms sounded again, I backed off. “Harder” they yelled, and the contraction passed. This repeated 3 more times. Then they asked, “is there some reason you’re not pushing very hard? He’s very little, you should be able to get him out easily. He needs to come out now.” “But his heartrate keeps dropping” my voice quivered, “I feel like I’m going to kill him.” A look of recognition spread across their faces, they were treating a fellow healthcare professional who knew all too well what those alarms meant. “We’ll turn the sound off. We won’t let you kill him. Push with all your might and we’ll tell you when to back off.”

A few pushes later I felt his tiny body slip from mine. I looked down and my son, Henry Oliver, stared right back at me and then let out a scream. “Oh my God,” I cried, “He’s beautiful.” He let out one more tiny cry and was passed off through a window to the waiting NICU team.

The next few hours were some of the longest of my life. The NICU team worked to stabilize Henry.  He needed to be intubated and his blood pressures were low. James went to see him and came back with pictures. I was jealous. I went down to the NICU as soon as I was physically able, but the team was putting in umbilical lines so Henry was draped. I sat in my wheelchair for a while watching the numbers on his monitor go up and down, listenting to the familiar whoosh of the ventilator breaths, willing something, someone to tell me he was going to be alright. Heartbroken, I asked to be taken back to my room. I got there and broke down sobbing. He didn’t feel like mine, my baby. It felt like I was watching over another tiny patient.

Pumping became my solace, the one thing I could do, but even that was mostly discouraging. The next morning brought good news. Henry was doing better and would be extubated. Hours after being extubated his nurse lifted his tiny fragile body out of the protection of his isolette and placed him on my bare chest. As he wiggled into a position of comfort, I cradled his tiny bottom in my hand. Our heartrates both slowed and I knew it, he was mine. These were the tiny feet that kicked my ribs and this tiny bum was unmistakably the one that had been dancing inside me for months. I was his mom.

Update: After 38 days in the NICU, Henry came home. He has grown and thrived since and our lives couldn’t be better. Tomorrow we will celebrate his 1st birthday.



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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Monday, August 20, 2012

Premature Rupture of Membranes (PROM) and Preterm Premature Rupture of Membranes (pPROM)
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]
I was laying in bed while I was 25 weeks pregnant with boy/girl twins, watching the evening news, when I felt wet “down there”.  I literally started giggling as I thought to myself, “I’m only 25 weeks pregnant and I’m already peeing my pants!”  I got out of bed, took my yoga pants off, and noticed it was a little more than the dribble I felt.  I walked to the bathroom where I sat on the toilet, stood up, and a huge WOOSH of water came out.  I knew right then and there that it wasn’t urine, it was fluid, and that my water had broke.  I called my OB and she told me to put a pad on and get to the hospital.  I told them that at this point we were beyond a pad, hung up the phone, stuck a towel between my legs, and headed to the hospital where they confirmed almost immediately via an AmnioSense strip test that it was amniotic fluid.  Looking back, I believe bleeding from a subchorionic hemorrhage or hematoma present with Baby A from weeks 9 until 17 deteriorated her sac and caused my pPROM.
Treatment and Risks
Unfortunately, there is no treatment for PROM or pPROM.  With PROM doctors feel that, in the majority of cases, it is safer for both the mother and baby to induce labor and deliver early.  However, some doctors may choose to put a mother on hospital bedrest and a non-stress test (NST) given daily to monitor the baby and ensure there is no distress.  Antibiotics are likely to be administered to ward off infection.  There remain different schools of thought, but PROM mothers are likely to face immediate delivery.
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.
An ultrasound was conducted that showed Baby A, baby girl Keltie, had a broken sac and low amniotic fluid.  Baby B, baby boy Colton, had a sac still intact and both babies were not in distress.  While in the admitting room, they also found I was contracting every 3-4 minutes and I was immediately given a steroid shot (the first in a series of two) and started on magnesium sulfate to stop the labor.  I was put on strict bed rest where I couldn’t get up to use the bathroom or shower.  But, I was willing to do anything to keep the babies inside for as long as possible.  I had three goals given to me:  1 – make it 24 hours for the second steroid shot, 2 – make it another 24 hours past that to have the steroid series considered “complete”, and 3 – make it to 26 weeks gestation where the survivability rate goes from 50% to 75% for the babies.
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.
I made it 4 days before Keltie stuck her feet through my cervix and sent me into full blown labor.  I was rushed in for an emergency c-section and on January 24, 2012 at 3:19am at only 26 weeks and 1 day gestation, I gave birth to two beautiful twins.  Colton weighed 1lb, 13oz and Keltie weighed 1lb, 9oz and both were 13 inches long.  After 100 days in the NICU, Keltie joined us at home.  Six weeks later and after 142 days in the NICU, her brother Colton finally joined us – that was the happy ending we were waiting for.  Today they are growing and thriving – to learn more about our story, please visit:  Project26WeekPreemies.


[1] http://emedicine.medscape.com/article/261137-overview#a1
[2] http://www.tommys.org/page.aspx?pid=972
[3] http://emedicine.medscape.com/article/261137-overview#a1
[4] http://emedicine.medscape.com/article/261137-overview#a1

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.
Wednesday, August 8, 2012
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. 

I did not know anything about GBS positive and what effects it could have on Nora but I could tell by the reaction of the nurses when they heard her diagnosis that it was not good.  They treated Nora for meningitis, so she was on antibiotics for 21 days and they kept a very close eye on her and anything out of the ordinary that may happen.  Nora decided that after 36hrs she did not want the ventilator anymore and she extubated herself, by pulling her ventilator tube out, and was able to go back to a 1L nasal cannula.  But she was very sick, lethargic, and swollen for several days.  We were told from our Neonatologist that when a baby gets an infection like GBS positive it can set them back for at least 2-4 weeks in their NICU stay because it just takes so long to fully recover from them.  Our Neonatologist also told us it is very rare that they see GBS positive in a baby that is 2 Months old.  He said they usually see GBS positive in the NICU right after birth.  But he said in rare instances they will see late onset disease, where the GBS has been sitting doormat and just resurfaces one day. I will never forget that day but we are so thankful that today, Nora is 6 months old, out of the NICU and doing great! 
If you would like to hear more about Nora's story you can follow her blog at http://purtylittlefowler.blogspot.com/
In researching for this article I used the following websites:

Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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