Premature Baby 101


To mark my 6 week anniversary at the hospital (gah!), I thought we’d do another “class time with Andrea”. It’s been awhile since I’ve dropped some wisdom on you! hahaha

In all seriousness, I wanted to pass along some information about micro preemie’s. I suspect some of you out there have found yourself thinking “Man, she’s so lucky. She gets to sit around all day and watch TV while nurses wait on her hand and foot. It’s like a vacation!”

Let me tell you, far from it.

To start, completely losing your independence sucks. I feel like I’m annoying everyone when I need more water, a fork, a napkin, or my reading glasses. I feel like a burden asking to have my humidifier refilled twice a day, asking for someone to come into my room to pick up the colored pencil I dropped on the floor, or asking for someone to get my mid morning snack out of the fridge (turns out diabetics need to eat constantly….).

Laying in bed 23.5 hours a day is difficult on the body. I’ve lost muscle tone and mass. I’ve developed gestational diabetes (I’m blaming lack of exercise/movement), and I’m just really sore in general. As the baby grows, the weight of my belly makes laying really difficult.

Trust me, I’d rather be at home, taking care of Nora, Paul and Maisey. I’d rather be having a normal, uneventful pregnancy. I’d rather be reveling in the fact that this is the last time I’ll be pregnant – and stuffing my face with ice cream!

Instead, I lie here for BBS and do the only thing I can to help him. I remain as calm and stress free as possible. I keep weight off my cervix in hopes that the cerclage will continue to hold. I track my daily contractions like a watchdog. I’ve learned all the lingo there is to know in the perinatology world. I keep an open dialogue with my doctors and nurses. I try to push out of my mind the terrifying information about preemies that I’m about to share with you.

Once you understand what micro preemies have to face, you’ll understand why I haven’t written about this until now. I was admitted at 22 weeks and 3 days when BBS wasn’t viable outside the womb. If he had been born in the first week and a half of my stay here, doctors wouldn’t have tried to resuscitate him. Let that sink in for a second….that’s extremely painful to think about.

End of day, I just want the best life possible for BBS. But I can’t control what’s ultimately going to happen. As the person who’s growing this life, I feel guilty that my body isn’t doing a better job. But, I try to focus on the fact that he’s safe right now and we’ve gotten to 28 weeks and 3 days together!

The information below was gathered from https://penut-trial.org/node/1

Prematurity is defined as a birth that occurs before 37 completed weeks of gestation. It is associated with about one-third of all infant deaths in the United States and accounts for approximately 45 percent of children with cerebral palsy, 35 percent of children with vision impairment, and 25 percent of children with cognitive or hearing impairment.

Approximately 50,000 infants per year (961 per week) are born at less than 28 weeks of gestation in the US.

The risk for problems associated with prematurity increase with decreasing gestational age and birth weight. The most immature infants (those born before 28 weeks of gestation) have the highest mortality rate, and if they survive, are at the greatest risk for long-term problems.

The chronic medical and neurodevelopmental problems of children born prematurely often require additional health care and educational services.

 

 

Birth at 23 Weeks of Gestation

What happens at birth If full resuscitation is chosen, at birth the doctors will dry and warm the baby, and then check the heart rate, breathing, oxygen levels, and movement. A breathing tube may be placed to help the baby breathe. Some babies will receive a medicine called surfactant in the delivery room. This helps keep the lungs expanded so the baby can breathe.

It is important to realize that even with the medical team’s best efforts to resuscitate the baby, he/she may not survive to be admitted to the NICU.

Long term medical issues. Some complications of being born early can last throughout life, but usually problems are most severe early on. After going home, most former 23 weekers (85%) require special medical care for at least a couple of years. Rehospitalization for medical problems is common in the first two years of life.

Survival

In the US, of 100 babies born at 23 weeks gestation, an average of 70 will die (black figures), and 30 will live to go home (blue figures).

 

 

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy (CP), learning disabilities or mental retardation, hearing, and vision problems. Bleeding in the brain while in the NICU increases these risks, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 30 survivors at 11 years of age are shown by the colored figures

  •  Severe Disability (23%)
  •  Moderate Disability (26%)
  •  Mild Disability (39%)
  •  No Disability (13%)

 

Definitions:
Severe Disability: Likely to be dependent on caregivers, may be unable to walk or control muscles, very low IQ, deafness, or blindness.

Moderate Disability: Reasonable independence likely, spastic muscles, but can walk with help, low IQ, hearing loss corrected with hearing aid, or impaired vision without blindness.

Mild Disability: Learning disabilities, mild impairments such as need for glasses. Autism and ADHD are more common in premature babies.

Vision: Most will have normal vision, but 25% will need glasses, and about 8% will be blind.

Hearing: Most will hear normally, but (7%) will have severe hearing loss in one or both ears.

Breathing: Many need extra oxygen when they go home. Sometimes, a breathing machine is needed. Most babies get better with time, but breathing problems such as asthma are common.

Birth at 24 Weeks of Gestation

Long term medical issues. After going home, most former 24 weekers (75%) require special medical care for at least a couple of years. Rehospitalization for medical problems is common in the first two years of life.

Survival

In the US, of 100 babies born at 24 weeks gestation, an average of 37 will die (black figures), and 63 will live to go home (blue figures).

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy (spastic muscles), learning disabilities or mental retardation, hearing and vision problems. Bleeding in the brain while in the NICU increases these risks, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 63 survivors at 11 years of age are shown by the colored figures

  •  Severe Disability (21%)
  •  Moderate Disability (33%)
  •  Mild Disability (30%)
  •  No Disability (16%)

 

Birth at 25 Weeks of Gestation

Long term medical issues. After going home, most former 25 weekers (75%) require special medical care for at least a couple of years. Rehospitalization for medical problems is common in the first two years of life.

Survival

In the US, of 100 babies born at 25 weeks gestation, an average of 25 will die (black figures), and 75 will live to go home (blue figures).

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy and learning disabilities or mental retardation. Bleeding in the brain while in the NICU increases this risk, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 75 survivors at 11 years of age are shown by the colored figures

  •  Severe Disability (11%)
  •  Moderate Disability (28%)
  •  Mild Disability (44%)
  •  No Disability (17%)

Birth at 26 Weeks of Gestation

Long term medical issues.

After going home, many infants born at 26 weeks of gestation require special medical care for at least a couple of years (50%). Rehospitalization for medical problems is common in the first two years.

Survival

In the US, of 100 babies born at 26 weeks gestation, an average of 14 will die (black figures), and 86 will live to go home (blue figures).

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy and learning disabilities or mental retardation. Bleeding in the brain while in the NICU increases this risk, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 86 survivors at 11 years of age are shown by the colored figures

  •  Severe Disability (10%)
  •  Moderate Disability (34%)
  •  Mild Disability (33%)
  •  No Disability (23%)

Birth at 27 Weeks of Gestation

Long term medical issues.

After going home, many former 27 week preemies (35%) require special medical care for at least a couple of years. Rehospitalization for medical problems is common in the first two years of life.

Survival

In the US, of 100 babies born at 27 weeks gestation, an average of 12 will die (black figures), and 88 will live to go home (blue figures).

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy, learning disabilities or mental retardation, hearing and vision problems. Bleeding in the brain while in the NICU increases these risks, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 88 survivors are shown by the colored figures

  •  Severe Disability (10%)
  •  Moderate Disability (10%)
  • Mild Disability (35%)
  •  No Disability (45%)

 

Birth at 28 Weeks of Gestation

Long term medical issues

After going home, many former 28 weekers (30%) require special medical care for at least a couple of years. Rehospitalization for medical problems is common in the first two years of life.

Survival

In the US, of 100 babies born at 28 weeks gestation, an average of 8 will die (black figures), and 92 will live to go home (blue figures).

Neurodevelopment

Babies born early are at high risk for developmental disabilities like cerebral palsy (CP), learning disabilities or mental retardation, vision and hearing problems. Bleeding in the brain while in the NICU increases this risk, but problems can also occur in the absence of bleeding. The baby may have one or more of these problems.

Developmental outcomes for the 92 survivors are shown by the colored figures

  •  Severe Disability (10%)
  •  Moderate Disability (10%)
  •  Mild Disability (35%)
  •  No Disability (45%)

 

Definitions:
Severe Disability: Likely to be dependent on caregivers, may be unable to walk or control muscles, very low IQ, deafness, or blindness.

Moderate Disability: Reasonable independence likely, spastic muscles, but can walk with help, low IQ, hearing loss corrected with hearing aid, or impaired vision without blindness.

Mild Disability: Learning disabilities, mild impairments such as need for glasses. Autism and ADHD are more common in premature babies.

Vision: Most will have normal vision, but 25% will need glasses, and 1% to 2% will be blind.

Hearing: Most will hear normally, but about 3% will have severe hearing loss in one or both ears.

Breathing: Some babies will need extra oxygen or a breathing machine when they go home. Most babies get better with time, but breathing problems such as asthma are common.

As you can see, BBS’ odds of surviving, and surviving without too many long term problems was dramatically increased since I was first admitted. Hopefully he won’t have a birthday anytime soon…..

 

6.14.2016 – Seriously?

When life keeps giving you lemons, I’m here to tell you, you WILL get sick of making lemonade.

Two weeks ago I went to see my OB because I’d been spotting for about 24 hours. I was 22 weeks and 3 days pregnant. She did an exam and told me that she could feel my membranes. She said I have an incompetent cervix and I needed to immediately go to the hospital where I’d be admitted for at least a couple of days.

She told me that she was going to call a high risk surgeon to meet me and she was hoping he’d be able to place a “rescue”cerclage in my cervix. There wasn’t a whole lot of certainty in her voice though. She was really unsure whether anything could be done. She was very factual and calm, but I could tell baby boy and I were in deep shit.

So I hopped a cab (faster than uber or an ambulance) over to CPMC California. The nurses in triage were expecting me (I started having major PTSD flashbacks of the adria leak and my trip to the ER for the antidote….)

Long story short, I was having emergency surgery within an hour and a half. I was 3cm dilated and the surgeon could see baby boy’s feet coming out through the membranes (which were bulging out of my cervix).  Thank heavens the doctor was able to get the bag back into my cervix without rupturing it and there was enough cervix left to work with to insert a cerclage.

I’m not going to lie to any of you. The outlook those first 72 hours was really, really grim, but my body pulled through, and, far as anyone can tell, the baby is none the wiser (though he did get a good healthy dose of narco post-op and a 4-day-round-the-clock-dose of antibiotics via IV to my body).

So now I’m on indefinite bed rest at the hospital. Since I was asymptomatic when all of this started (save a little spotting) my doctors are hesitant to breathe a sigh of relief. We’re forced to take everything day by day and pray for the best.

It’s been 14 days since I arrived here. It’s been incredibly hard not to see Nora, Maisey and Paul all the time. It’s been a major test of character to have to surrender 100% control of everything in my life. From caring for my child, to my own body. I have to be strong every day and remember that I’m a mere vessel. Here to incubate the newest member of our family. It’s not an easy job at all. I was in a lot of physical pain early on. Now I’m in a lot of emotional pain. But when I focus on one day at a time, that helps.

This past Saturday I hit 24 weeks in my pregnancy, which is a huge milestone. Should baby boy arrive at this point, there are life saving measures that can be taken. That was not the case when I first arrived at 22 weeks.

So we are grateful for every small victory and we’ll keep pushing on. There are so many more details to the story, but the above is the gist. We’d appreciate it if you could keep us all in your prayers and hold space for us. We’ve got a long, long road ahead and hope that it’s drama free.

xoxo,

Andrea