Tuesday, November 29, 2011

Tenley & Delaney's Story

Delaney & Tenley 1 year old

I found out I was having twins when I was 10 weeks along. My OB mentioned not seeing a membrane but I didn't think much of it at the time, my husband and I were just trying to wrap our minds around the fact that we were having TWO babies!!! Elated about the news, we went home, told our family. Most were ecstatic and others told us to be prepared for the worst because it was still early in the pregnancy and I think they worried about vanishing twin syndrome. That kind of reaction kind of took the wind out of our sails a little bit, but we remained positive. A few days after the exciting news of twins, my husband had a bad accident at work and broke both of his feet and his right leg. We were told he would not be able to return to work for at least a year and that he wouldn't be walking for quite some time. We had to move a hospital bed into our home and he was bedridden and in a wheel chair for months. 

My OB had me come back in for another ultrasound 2 weeks later. My husband was unable to come due to his broken bones so his sister accompanied me. When my doctor was unable to find a membrane, she referred me to a perinatologist. Again, I didn't think much of it and she didn't seem very alarmed and we were just relieved that the twins were still doing well. They were diagnosed as Monoamniotic-Monochorionic twins when I was around 14 weeks along at my appointment with the perinatologist. He told me to get prepared to be admitted to the hospital at 24 weeks and was pretty blunt that it was a very high risk
 pregnancy...but I don't think I truly heard him at that point. I left feeling hopeful and excited because they were growing and doing so well. Every time I went in for an ultrasound, I prepared myself for the worst, so just to see two hearts beating...that is all I really needed to see. But when I got home, we started looking up Mo-Mo twins on the internet and we saw the grim statistics of 50% survival rate and realized it was very serious and we could very well lose our babies. Things were going bad left and right for our family and friends and I just felt like we were most likely doomed. I honestly didn't expect the pregnancy to end well. I really expected the worst despite the doctor telling me that they had 70-80% odds of surviving and I had the mindset that someone had to be in the other 20-30%. Four weeks later I went back and the babies were doing great and I started to feel a bit more hopeful when I saw that they were still ok. Then I started feeling them move and with the help of my husband's positive attitude, I began to feel more optimistic. I just had this feeling that I just needed to get to 24 weeks and it would  be fine.
Finally 24 weeks came and I went into the hospital. I'm not gonna lie. It SUCKED. I HATED it. I hated having to spend my whole summer locked up. I am the type of person that dreads things and then finds out later that it really wasn't so bad. That's how my hospital stay was. Looking back, I wish I had gotten to know my nurses and PCTs better and wish I had relished getting to sleep all night and just being lazy all day! But instead I focused on how much I missed my home and my dogs. Luckily my husband was able to stay with me every night due to being off work from the accident, so I didn't even have to miss him! Eventually, we got into a routine and it became our normal. We brought our own blankets, sheets, memory foam mattress pad, towels, pictures, etc. so that it would feel more homey. Everyone who came into my room commented on my bedding and how it looked like a dorm room, not a hospital room. I explained that if I was going to be there for 2 months I wanted to make myself at home. I worked on DIY projects for the nursery. I even worked it out with my job so that I could work a little from the hospital and my days were actually pretty full and busy! 

My husband's sister lived in the area so she came up and visited several times a week, did all of our laundry, brought us food & home cooked meals and took my husband shopping. She was a life saver! Family and friends came to visit and people sent cards and care packages. I kept family, friends and church members updated through CaringBridge.org. 

Monitoring sessions were an hour long, though it usually took about 1.5-2 hours after the nurses actually found the babies and got them to stay on. I did monitoring around 8:00 am, 3:30 pm and 10:30 pm and slept all night, except for all the trips to the bathroom! 
Monitorings weren't the most fun or comfortable laying in one spot for so long but it was so reassuring to hear my little ones heart beats. The girls jumped off the monitors so much that my husband got really good at getting them back on. We usually played Wii during monitoring sessions to keep my mind off of being stuck in one spot. I got to see them on ultrasounds twice a week, sometimes more if they were hiding from the monitors! There would be days when the tech would tell us that the cords looked tangled and then the next time, they would look untangled. There was some concern about the flow of the blood through one of their cords, but luckily it turned out to be nothing. Every night that I went to sleep, I woke up nervous. I had an anterior placenta so I didn't feel the girls move as much as most people probably feel their babies. So at night, I didn't feel them move and so if I didn't feel them when I woke up in the morning, I was always very anxious to get up and get them on the monitors right away. Once I heard their little heartbeats, I could relax.

One tip for inpatient - if you want anything, just ask your doctor. They are on your side and most will usually do whatever they can to accommodate you and make your stay more comfortable! If you don't want woken up in the middle of the night for vitals, just ask! If you don't want an IV or hep lock, ask. I didn't get an IV put until I was taken to L&D to deliver the girls. Not all doctors will be as accommodating, but many are!
 I had free roam of the hospital (I had to ask my doctor to write an order, otherwise the nurses wouldn't let me leave without a wheelchair). My husband was still healing so he was in a wheelchair and couldn't push me but I was allowed to walk around freely. My doctor's let me go out on day passes about once a week in between monitoring sessions. That kept my spirits up big time to be able to go out to eat with my husband and family and friends! Once I became too big and uncomfortable, I chose to stay in my room.
My c-section was scheduled for 32 weeks. My doctor's considered trying to get me to 34 weeks because we had zero problems up until that point, but my husband and I insisted on 32 weeks. We didn't want to push our luck. It didn't matter what any of us wanted, the girls had their own plan! A few days before their scheduled c-section, at my second monitoring of the day (the morning session had went normally) their baseline heart rate went down to around 100 (they were normally around 140) and they were being monitored very closely. I was told that I'd probably be on the monitors all night long. Their heart rates just kept getting lower and lower. Late that night, one of the babies rates decelerated to 60 bpm and the nurse that was in my room decided that they were showing signs that they were stressed and she decided to call the doctor in and said "We're having babies today!" Had I not been inpatient, we most likely wouldn't have caught their lowering baseline and who knows what would have happened in the night.

Everything that happened down at Labor & Delivery was just a whirlwind. So many different nurses coming in and out and doing this and that to me. I barely knew which end was up! My legs were shaking uncontrollably, I was so excited, scared and nervous. I was prepared for a long night of monitoring and delivering babies was the last thing I thought I'd be doing that night!! 
All the excitement raised the babies heart rates as well, so we were glad that their heart rates weren't dangerously low anymore. As soon as I got my epidural, my body just went still. It was so nice to not be shaking any more. The anesthesiologist asked me if I could feel anything and I said no and he said "Good because they have already cut you open!" The c-section went fast, seems like they got the babies out quickly. I remember laying there just waiting to hear the sound of cries. Baby A came out crying, it was the sweetest sound I have ever heard. I just cried tears of relief when I heared her cry. They took her off into another room to check her over and give any medical attention that she may have needed. I waited again for the sweet sound of cries for Baby B but she wasn't crying at first, she came out sneezing! My husband went to the other room to see how they were doing while I got sewed back up. He brought me pictures on the camera and when they were all bundled up and ready to go up to the NICU, the nurses brought them in to see me for about 2 seconds. I didn't get to hold them but they held them out so I could see them. They were the tiniest things I have ever seen! Baby A, who we named Tenley weighed 3 lbs 6 oz and Baby B, who we named Delaney weighed 3 lbs 5 oz. Their cords had a small knot but definitely weren't as tangled as I imagined they would be. 

Meeting Tenley for the first time.
Delaney 6 days old

We spent most every day with the girls and learned to do their cares. We only got to hold them once a day, I feel like I should have been able to hold them more, they seemed so calm and relaxed when we held them. We helped with their baths every 2-3 nights and weighed them and changed their clothes every evening. The NICU stay seemed long but they were only there 31 days. I had read about lots of 32 weekers who had been in the NICU for 3 weeks so I had my heart set on getting out of there at 3 weeks. I shouldn't have had any expectations like that. Having the babies in the NICU was the most difficult part of the journey and healing from the c-section just made it even worse. I had issues with milk supply and it was just a very stressful time in my life. Once the girls started eating from a bottle, we knew when Tenley was coming home but thought Delaney would need a few more days in there. We called on Tenley's discharge day to make sure she was still coming home so we would know our plans for the day. Instead we were surprised with the news that BOTH girls were going home! Finally....our hospital journey was coming to an end! I could go HOME!!! (We had been staying with my sister in law's family while the girls were in the NICU since the hospital was far from home).

All they needed was a little time to grow and learn how to eat on their own and we were lucky that they didn't have any health issues. They didn't even need to go under the billi lights for jaundice. Everything went perfectly. They spent 31 days in the NICU and came home on their 1 month birthday. It was a very scary and difficult pregnancy but as with other things in life, its as good or bad of an experience as you make it! And inpatient is really the way to go! I would do it again in a heartbeat! Tenley & Delaney are 15 months now and are happy, healthy little girls. They are developing right on track with their actual age and other than their small size, you would never know they were born 2 months early! I hope my story will bring hope to somebody. I read as many positive stories as I could find all throughout my inpatient stay and I remember thinking that if these people's babies survived and they got through it, then maybe my babies can survive too. Now after connecting with so many MoMo mommies on Facebook after my inpatient stay, I have seen with my own eyes how many babies really do survive, even if they come earlier than 32 weeks. Stay strong and have faith that everything will be ok!

Monday, November 28, 2011

A Story of "Hope" and "Faith"


     My momo journey started on April Fool’s Day, 2009.  I was very excited for my first OB appointment and couldn’t wait to see the baby!  I hadn’t had too many pregnancy symptoms so I looked forward to seeing the baby on an ultrasound to make sure all was well.  After filling out some forms and going over some basic pregnancy info we headed back to the exam/ultrasound room.  The OB started the ultrasound and I asked him if the baby was ok and he said, “This one looks great, and so does this one!”  We were in shock to say the least.  I asked him if it was an April Fool’s Day joke and he said he wouldn’t joke about this.   He then pulled out a sheet of paper and quickly drew a few diagrams saying that he didn’t see a dividing membrane between the twins and they were probably monoamniotic monochorionic  (momo).  I was very clueless about the different type of twins so all of the information was new and overwhelming. 

     The next few weeks were full of appointments, more ultrasounds, and more discouraging news.  The twins were confirmed monoamniotic on a high resolution ultrasound.  The next appointments brought up a Choroid Plexus Cyst, increased chance of Down Syndrome, and possible IUGR.  We decided to go inpatient at 28 weeks.  In the US the standard of care for most momo twins is to be admitted to a hospital between 24 and 28 weeks.  Once admitted the twins are monitored closely for any signs of distress due to cord entanglement, cord compression, or placental sharing issues.  

     During the pregnancy I called the girls “Hope” and “Faith” and spent many hours praying for their safety.  Hope, faith, and love were all we had during this time and every ultrasound I would hold my breath until I saw two beating hearts.  I had weekly ultrasounds until 24 weeks ~ one with my local OB and one with the MFM practice where I would be admitted.  I started outpatient monitoring at 24 weeks with 3 NSTs (non stress tests) a week.  At 26 weeks I started daily NSTs at the local hospital.  At my very last NST before I was scheduled to go inpatient my OB saw some decelerations in one of the girls that concerned him.  He decided it would be best to admit me immediately for observation.  I hadn’t finished packing my bags and was scheduled to spend my inpatient stay in another hospital… I distinctly remember my husband coming to drop off a toothbrush and a few other essentials for the night and then eating Chipotle while worrying what was going on with our babies…  The next day we drove 3 hours to the hospital I was schedule to stay at and I was frustrated because it took them almost 2 hours to put me back on the monitors.  My room was tiny and the nurses looked at me like I was crazy because I had brought several bags of clothes, snacks, and things to keep me entertained.  I wanted turn around and run back home but knew staying in the hospital was the best thing I could do for the girls.

     I was on 24/7 monitoring (2 heartrate monitors placed on my belly to pick up the girls heartrates) which was difficult but I wouldn’t have had it any other way. It gave me peace of mind to see my girls’ heartrates all the time and knowing if something started to go wrong it would be quickly caught.  Being on 24/7 monitoring wasn’t good for sleeping though because I could only lay in a certain position to keep the monitors on and if the babies moved the monitors would have to move as well so there rarely was more than 2-3 hours of uninterrupted sleep!  While in the hospital I learned to crochet (not very well though!), watched a lot of NCIS, tried to learn Chinese (didn’t get very far), and did a lot of reading.  I could go for one 15 minute walk a day around the hospital floor (sometimes I even got to go outside to a little courtyard on the 6th floor) and another 15 minute break for a shower…

     We decided to deliver at 34 weeks and scheduled the c-section (all momos are born via c-section due to being in the same sac and the danger of cords being entangled and/or wrapped around the other baby) with the MFM (high risk OB) that we liked the best.  Shortly after scheduling the delivery both girls had big decels at 1am (heartrates dropped into the 60s).  A nurse rushed into the room and told me to roll onto my side.  This had happened before and a slight shift was good enough to try to pick up the heartrate again. This time however she rolled me a bit and said “No! All the way on your side.”  This quickly alerted me that something serious was going on.  I looked at at the monitors and saw both heartrates were in the 60s (should be in the 140s-160s).  Fortunately both girls’ recovered and their heartrates came back up.  I can’t even imagine what might have happened if I hadn’t been on continuous monitoring…  I truly believe being inpatient saved my girls’ life.  If I hadn’t been on the monitors they may have shifted on their own and their heartrates might have recovered while I was sleeping… but again, I don’t even like to think of what might have happened. 

     During rounds the next day the doctors said “today’s the day!”  We were at 32 weeks exactly. Walking past the nurses station to the OR for the c-section was very emotional and I started crying.  I was thankful that we made it to 32 weeks but still scared to delivery my little babies.  Once in the OR the spinal was quickly administered and wasn’t that bad.  I started shaking and just felt really uncomfortable once it took affect though but soon calmed down.  The c-section definitely wasn’t pleasant.  Some people say c-sections aren’t bad but I definitely thought it was uncomfortable and unpleasant.  I wasn’t in pain but could feel lots of tugging and pulling. Baby A arrived 54 minutes after I walked into the OR and Baby B 3 minutes later. Hearing them cry brought tears of relief and joy to my eyes!  I got to see both girls briefly before they were wheeled to the NICU.   I spent the time in the recovery room throwing up into my little bucket and shaking uncontrollably.  The nausea and shaking wore off a few hours after the c-section and I headed to the NICU to see the girls.  Seeing them with numerous monitors with breathing support (CPAP) was hard but I was so relieved that they were here safely.  Besides being small and needing breathing support, they were perfectly healthy which also was a huge relief because the ultrasounds had caused me to worry a lot about their health.
     The NICU definitely was a rollercoaster with lots of ups and then downs but overall it wasn’t too bad.  We knew they would be in the NICU once they were born and I was very thankful they were here safely and didn’t have any major medical issues.  Baby A, “Hope” only needed brief breathing support and was soon breathing completely on her own.  She only needed to stay in the NICU for a few bilirubin treatments (“tanning” lights) and to learn how to feed and grow.  Baby B, “Faith” had more difficulties breathing and ended up on nasul canula for several weeks.  She also had a PDA which required medication to close, had to have a blood transfusion, needed bili lights a few times, and had lots of “As and Bs” (apneas and bradycardias), as well as learning to feed.  We were in the NICU for 5 and 6 weeks and then finally headed home!
     My girls are now two and are doing wonderfully!! They are tall for their age, love to give hugs and kisses, and are such incredible joys.  They run, jump, laugh, and throw tantrums just like any other two year old!  We couldn’t be more blessed and thankful for our momo miracles! It’s amazing how far they’ve come in such a short time.  Watching them grow together and seeing the incredible bond they have has been the greatest gift. 

Friday, November 25, 2011

Preemie Resources

Since you are having momo twins you know your babies will be premature.  It is difficult knowing your babies will be premature, but as one of my doctors said, sometimes it is better to know ahead of time than to be surprised...  We know and can plan for our premature babies while most women with preemies do not know they are having preemies until they have them.

Here are a few resources on premature babies:

Preemies Today:  http://www.preemiestoday.com/
March of Dimes:  http://www.marchofdimes.com/baby/premature_indepth.html
A Primer on Preemies:  http://kidshealth.org/parent/growth/growing/preemies.html?tracking=P_RelatedArticle 

Some good books with info on preemies:

Preemies: The Essential Guide for Parents of Premature Babies, Dana Wechsler Linden (Author), Emma Trenti Paroli (Author), Mia Wechsler Doron (Author)

Your Premature Baby: Everything You Need to Know About Childbirth, Treatment, and Parenting, Frank P. Manginello (Author), Theresa Foy DiGeronimo (Author)

The Preemie Parents' Companion: The Essential Guide to Caring for Your Premature Baby in the Hospital, at Home, and Through the First Years, Susan L. Madden (Author) 

From the March of Dimes, possible medical complications in preemies:

What medical complications are common in premature babies?

There are a number of complications that are more likely in premature than full-term babies:

Respiratory distress syndrome (RDS): About 23,000 babies a year (most of whom were born before the 34th week of pregnancy) suffer from this breathing problem (11). Babies with RDS lack a protein called surfactant that keeps small air sacs in the lungs from collapsing.
Treatment with surfactant helps affected babies breathe more easily. Since treatment with surfactant was introduced in 1990, deaths from RDS have been reduced by about half (12).
A provider may suspect a baby has RDS if she is struggling to breathe. A lung X-ray and blood tests often confirm the diagnosis.
Along with surfactant treatment, babies with RDS may need additional oxygen and mechanical breathing assistance to keep their lungs expanded. They may need the support of a ventilator or they may receive treatment called continuous positive airway pressure (CPAP). CPAP delivers pressurized air to the baby’s lungs through small tubes in the baby's nose or through a tube that has been inserted into his windpipe. CPAP helps a baby breathe, but it does not breathe for him. The sickest babies may need the help of a ventilator to breathe for them while their lungs mature.
Apnea: Premature babies sometimes stop breathing for 20 seconds or more. This interruption in breathing is called apnea, and it may be accompanied by a slow heart rate. Premature babies are constantly monitored for apnea. If the baby stops breathing, a nurse stimulates the baby to start breathing by patting him or touching the soles of his feet.
Intraventricular hemorrhage (IVH): Bleeding in the brain occurs in some premature babies. Those born before about 32 weeks of pregnancy are at highest risk. The bleeds usually occur in the first 3 days of life and generally are diagnosed with an ultrasound.
Most brain bleeds are mild and resolve themselves with no or few lasting problems. More severe bleeds can affect the substance of the brain or cause the fluid-filled structures (ventricles) in the brain to expand rapidly. These severe bleeds can cause pressure on the brain that can lead to brain damage (such as cerebral palsy and learning and behavioral problems). When fluid persists in the ventricles, neurosurgeons may insert a tube into the brain to drain the fluid and reduce the risk of brain damage.
Patent ductus arteriosus (PDA): PDA is a heart problem that is common in premature babies. Before birth, a large artery called the ductus arteriosus lets blood bypass the lungs because the fetus gets its oxygen through the placenta. The ductus arteriosus normally closes soon after birth so that blood can travel to the lungs and pick up oxygen.
When the ductus arteriosus does not close properly, it can lead to heart failure. PDA can be diagnosed with a specialized form of ultrasound (echocardiography) or other imaging tests. Babies with PDA are treated with a drug that helps close the ductus arteriosus, although surgery may be necessary if the drug does not work.
Necrotizing enterocolitis (NEC): Some premature babies develop this potentially dangerous intestinal problem 2 to 3 weeks after birth. It can lead to feeding difficulties, abdominal swelling and other complications. NEC can be diagnosed with blood tests and imaging tests, such as X-rays. Affected babies are treated with antibiotics and fed intravenously (through a vein) while the intestine heals. In some cases, surgery is necessary to remove damaged sections of the intestine.
Retinopathy of prematurity (ROP): ROP is an abnormal growth of blood vessels in the eye that can lead to vision loss. It occurs mainly in babies born before 32 weeks of pregnancy. ROP is diagnosed during an examination by an ophthalmologist (eye doctor) several weeks after birth.
Most cases are mild and heal themselves with little or no vision loss. In more severe cases, the ophthalmologist may treat the abnormal vessels with a laser or with cryotherapy (freezing) to protect the retina and preserve vision.
Jaundice: Premature babies are more likely than full-term babies to develop jaundice because their livers are too immature to remove a waste product called bilirubin from the blood. Babies with jaundice have a yellowish color to their skin and eyes. Jaundice often is mild and usually is not harmful. However, if the bilirubin level gets too high, it can cause brain damage.
Blood tests show when bilirubin levels are too high, so providers can treat the baby with special lights (phototherapy) that help the body eliminate bilirubin, thus preventing brain damage. Occasionally, if bilirubin levels rise very high, a baby may need a special type of blood transfusion.
Anemia: Premature infants often are anemic, which means they do not have enough red blood cells. Normally, the baby stores iron during the later months of pregnancy and uses it late in pregnancy and after birth to make red blood cells. Infants born too soon may not have had enough time to store iron.
Babies with anemia tend to develop feeding problems and grow more slowly. Anemia also can worsen any heart or breathing problems. Anemic infants may be treated with dietary iron supplements (drugs that increase red blood cell production), or they may require blood transfusion.
Chronic lung disease (also called bronchopulmonary dysplasia or BPD): Chronic lung disease most commonly affects premature infants who require ongoing treatment with supplemental oxygen. The risk of BPD is increased in babies who still need oxygen when they reach 36 weeks after conception (weeks of pregnancy plus weeks after birth adding up to 36 or more weeks). These babies develop fluid in the lungs, scarring and lung damage, which can be seen on an X-ray.
Affected babies are treated with oxygen and medications that make breathing easier. Sometimes they require support from a ventilator and are weaned slowly from the device. Their lungs usually improve over the first 2 years of life. However, many children with BPD develop chronic lung disease resembling asthma.
Infections: Premature babies have immature immune systems that are inefficient at fighting off bacteria, viruses and other organisms that can cause infection. Serious infections commonly seen in premature babies include pneumonia (lung infection), sepsis (blood infection) and meningitis (infection of the membranes surrounding the brain and spinal cord). Babies can contract these infections at birth from their mother, or they may become infected after birth. Infections are treated with antibiotics or antiviral drugs.

Monoamniotic Twin Delivery Breakdown (Scheduled vs. Emergent) and NICU Stay Information

As of 19 April 2013 have a sample size of 100!

45% delivered at 32 weeks followed by 11% at 31 and 10% at 33 weeks. 8% delivered at 30 weeks and 7% at 28 weeks and 34 weeks.  4% delivered at 27 weeks and 29 weeks, 2% at 25 weeks, and  1% delivered at 23 weeks and 26 weeks.

48% were scheduled and 46% were emergent for momo issues.  8% were delivered for other issues (preterm labor, preeclampsia, water breaking, etc)..

For the Emergency Deliveries, the breakdown is the following:  25% of emergency at 31 weeks, 20% at 32 weeks, 16% at 28 weeks and 30 weeks, 9% at 29 weeks, 7% at 27 weeks, and 2% at 23 weeks, 25 weeks, 26 weeks, and 33 weeks.

For the Scheduled Deliveries, the breakdown is the following:  60% of scheduled at 32 weeks.  15% at 33 weeks, 8% at 34 weeks and 4% at 31 weeks.

Based on our sample the following average NICU stay for each gestational age is as follows:

34 weeks (19 days)
33 weeks (23 days)
32 weeks (30 days)
31 weeks (41 days)
30 weeks (47 Days)
29 weeks (61 days)
28 weeks (71 days)
27 weeks (105 days)
26 weeks (92 days)
25 weeks (109 days)
23 weeks (117 days)

Type of monitoring was as follows:

Unknown 31%
Continuous 13%
2x daily 8%
3x daily 27%
4x daily 2%
5x daily 1%
Every 2 hours 1%
Every 3 hours 1%
Every 6 hours 1%
Every 8 hours/then to every 4 hours 1%
4 hours on/1-2 hour breaks 1%
Noncontinuous then to continuous 5%
Not inpatient 7%
Did not make it to inpatient 1%

The charts below were compiled by another momo mom, thank you Megan!  She has a slightly different collection of data (from two different momo communities) so the sample sizes are different and the stats a bit different.   

47% of MoMos were delivered at 32 weeks followed by 10% at 30 and 33 weeks and 9% at 31 weeks.  4% were at 34 weeks and 27 weeks, and 6% at 28 weeks.  26 weeks and 29 weeks were 3% each and 23 weeks and 25 weeks were 2% each.

57% on Inpatient MoMo moms (66/116) made it to their scheduled delivery date.

43% of Inpatient MoMo moms (50/116) delivered by emergency c-section.  24% of emergency deliveries were at 30 weeks followed by 18% at 31 weeks and 14% at 28 weeks.  12% of emergency deliveries were at 32 weeks, 10% at 27 weeks, and 8% at 29 weeks.  4% of emergency deliveries were at both 23 weeks and 25 weeks, and 6% were at 26 weeks.

 This chart lists when MoMo moms chose to go inpatient.  38% started inpatient at 24 weeks followed by 26% at 28 weeks and 12% at 26 weeks. 27 weeks and 23 weeks were 10% and 8% respectively. 

NICU Stay Financial Information

The NICU stay can be a stressful time emotionally, and possibly financially! Here's some info to read on the financial aspect of a NICU stay:  http://handtohold.org/resources/helpful-articles/how-to-pay-for-your-nicu-stay-national-edition/ and http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/368/~/ssi-benefits-for-premature-children

 from http://handtohold.org/resources/helpful-articles/how-to-pay-for-your-nicu-stay-national-edition/:

How to Pay for Your NICU Stay – National Edition

by Erika Goyer, Hand to Hold’s Family Support Navigator and preemie mom

Money Tree by Emmaline available through CCCall Your Employer

Let them know what is going on.  If you are a working parent you should ask to speak to someone in Human Resources or Personnel about the following:
  • Your insurance coverage.
  • What time off you have available or accumulated through flex-time, sick time, and vacation time.
  • Whether or not you have temporary disability insurance through your employer.
  • Whether or not your place of business offers time off through the Family Medical Leave Act.
If you have recently been laid off or fired you may still be able to access health insurance from your former employer. To find out more about COBRA (Continuation of Health Coverage Act) and whether or not it is a good option for your family call 1-866-444-3272.

Ask about Perinatal Coverage

Maternity Leave Resources

To find out more about your rights in the workplace, visit the U.S. Department of Labor’s resource: “What to Expect When You’re Expecting (and after the birth of your child)… at Work
Baby Center’s (Johnson & Johnson’s) web resource: “Maternity Leave: The Basics(Also available in Spanish)
Whether you are in the hospital waiting to deliver or already in the NICU, you should be thinking about your perinatal care as well.  Many states offer free or low-cost programs for mothers. They will help you cover your patient care as well as your postpartum follow-up appointments. Call your State Department of Health Services or the WIC Perinatal Program to ask questions.

Find Out if You or Your Child Qualify for Medicaid

Even if you have private health insurance, it’s good to have Medicaid as your secondary coverage. It will help cover expenses after you have met your annual limits on treatments and therapies. The Children’s Health Insurance Program (CHIP) provides health coverage to children in families with incomes too high to qualify for Medicaid, but can’t afford private coverage. Visit www.insurekidsnow.gov to learn more.
  • Medicaid 1-877-543-7669
  • CHIP – Children’s Medicaid 1-877-543-7669
If your child qualifies for Medicaid or receives CHIP they also qualify for free routine check-ups, immunizations, hospital care, dental care, and lab and x-ray services.

Look at Alternative Routes to Qualifying for Medicaid

Your state may have Medicaid programs which will allow you to receive Medicaid for your child without meeting the strict income limits and financial guidelines. Some benefits are offered only to children who are born at a very low birth weight or who have extended hospital stays. Others will help you pay your private insurance premiums, deductibles and co-pays.
  • SSI Disability – If your child is in the NICU and was born at or below a certain birth weight or were small for their gestational age they may automatically be eligible for Medicaid through SSI Disability. Remember, if your child qualifies for even $1 of Social Security Disability Income they will receive full Medicaid. Visit www.ssa.gov and click on the SSI tab to find out more or call 1-800-772-1213.
  • Institutional Medicaid – Institutional Medicaid pays for medical expenses for a child who has a hospitalization longer than 30 days regardless of birth weight or family income. Programs vary from state to state and may not be offered where you live. You must apply for Institutional Medicaid prior to discharge. Speak to your NICU social worker or your hospital financial assistance office.
  • Medicaid Buy-In for Children – This program is for families who have a child with a disability, but earn too much money to get traditional Medicaid. Through this program, families can “buy-in” into Medicaid coverage by making monthly payments. Visit your State Department of Health Services website to see if your state offers this program.
  • Health Insurance Premium Payment Programs – HIPP is a Medicaid program that pays for the private health insurance premiums for certain individuals with high medical costs. HIPP programs are not offered in every state and eligibility requirements vary. Generally, to participate in a state’s HIPP program, you must qualify for Medicaid and have an existing medical condition that has been determined to be a cost-effective condition for the HIPP program. For more information contact your State’s HIPP program.
  • Medicaid Waiver Programs – Even if your family does not meet the strict financial requirements for Medicaid your child may still be able to get coverage. Federally-mandated, state-run Medicaid Waiver programs exist to help families of children with special health care needs access comprehensive care for their children. Visit www.medicaid.gov and click on your state for a list of waiver programs and direct link to your state’s health agency for more information.

Research Other State Programs

WIC – Women, Infants and Children Program (1-703-305-2286) – The USDA’s Food & Nutrition Service underwrites the Women Infant Children nutrition and breastfeeding program within each state. Their website lists toll-free numbers and contact information for each state’s nutrition and breastfeeding coordinators. This program will help you pay for any specially-prescribed formulas, may be able to lend you a hospital grade breast pump and can help you get healthy food for you and your baby. Benefits are usually extended if you are breastfeeding. Peer breastfeeding counselors are available to help. Fathers can apply for their children to receive benefits too.

from http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/368/~/ssi-benefits-for-premature-children:

SSI benefits for premature children

Is it true Social Security will give Supplemental Security Income (SSI) benefits to children born prematurely?

Social Security provides SSI disability benefits to certain infants born with a low birth weight whether or not they are premature.  A child weighing less than 1200 grams (about 2 pounds, 10 ounces) at birth can qualify for SSI based on low birth weight.  A child weighing between 1200 and 2000 grams (about 4 pounds, 6 ounces) at birth and considered small for his or her gestational age also may qualify. 
To satisfy our criteria, the following chart shows the gestational age at birth and corresponding birth weight.
Gestational Age                   Weight at Birth
(in weeks)
37-40                             Less than 2000 grams                    
                                   (4 pounds, 6 ounces)

36                                1875 grams or less                      
                                   (4 pounds, 2 ounces)

35                                1700 grams or less                      
                                   (3 pounds, 12 ounces)

34                                1500 grams or less                      
                                   (3 pounds, 5 ounces)

33                                1325 grams or less                      
                                   (2 pounds, 15 ounces)

If the child was not born prematurely or with a low birth weight, he or she may still qualify.http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/368/~/ssi-benefits-for-premature-children

And, finally, from an email a friend received from the March of Dimes:

  • The March of Dimes has other resources that your family may find helpful.  Our NICU Family Support Program (https://www.marchofdimes.com/baby/inthenicu.html) exists to help families cope with the experiences of parenting a preemie in the NICU and afterward.  We suggest that you contact the local chapter of the March of Dimes where your baby’s hospital is located and ask if they have a NICU Specialist who can assist you. You can find your local chapter here: 
  • Many times parent-to-parent support groups can be of enormous help in sharing their experiences and their resources list. The March of Dimes has created a website for parents of preemies and children with medical conditions called Share Your Story (http://www.shareyourstory.org/) where parents help each other with all kinds of information.  We also have a section of our website dedicated to prematurity with lots of good information: https://www.marchofdimes.com/mission/prematurity_indepth.html .  
  • NICUs usually have a social worker or patient advocate who can recommend resources to help families with financial and other stressors. We suggest that you meet with that person to discuss your concerns. 
  • The Ronald McDonald House provides low cost housing to families when their children are in the hospital. We suggest you see if there is a house near the hospital where the baby is hospitalized. Their website is: http://rmhc.org/ .
  • Here is a link to an excellent list of agencies, organizations and support groups that address disability-related issues in children: http://www.nichcy.org  (just click on your state). 
  • The SSI Children’s Project:  Another option is for you is to contact the American Bar Association (an organization of lawyers). They have a Children’s Project which has compiled a list of hotline numbers for families to obtain free legal help in obtaining Social Security benefits. Families can call a number specific to their state for a referral to free legal assistance, including legal services offices and private attorneys who are working for free on these cases. Call the Social Security Administration at 1-800-772-1213 to obtain the number for your state.
  • Premature Baby - Premature Child is a parent support organization that may also be of assistance.  Here is a link to their web site: http://www.prematurity.org .  And here is a link to another similar site: http://www.preemie-l.org/ .              
  • The Lindsay Foundation is a non-profit organization whose primary goal is to assist families with resources necessary to provide medical treatment, therapies and rehabilitative equipment in order to improve the quality of life for their special needs children. http://www.lindsayfoundation.org/
You might also consider doing a Google search for financial assistance for health care expenses in your town. Often, small non-profits are dedicated to providing help to individuals.