10/10/13 – Decision Time

(Today was broken into two parts. This part deals with the testing in the morning.)

Sent at 9:43am

Fetal profile is finished.

30 minute ultrasound. Now we wait to hear the results.

Tommy was moving around.

Missy and I googled the test and we think we scored a 6. Borderline. Of course, this is all our years of medical schooling telling us that.

We should know in next 30 minutes.

Love you all.

Sent at 9:55am

The score was a 6.

We were right. Good news, right?

Nope. Based on heart rate dips last night that doctor suggested having Tommy today. He said there isn’t a benefit keeping him in an extra day or two and possibly face an emergency.

So.

Tommy will be born sometime this morning. We are back in room waiting to hear schedule.

Another chapter of our life is about to start.

Love you all.

Sent at 11:19am

We are close.

We are about to go to delivery room.

Love you all.

Details and Thoughts

Fetal Profile

The fetal profile is a 30 minute ultrasound test administered by an ultrasound technician looking at the following:

  • Fetal breathing

  • Fetal tone

  • Fetal movement

  • Amniotic fluid volume

We were aware of the test criteria, so our close attention allowed us to flesh out the score we thought Tommy would receive. Our guess was correct, but it didn’t make a difference. As the perinatologist explained, there was no value to be gained in Tommy remaining in the womb. There were a number of bad things that could happen if he did remain, though.

Our thoughts raced as we considered just 5 days ago the same doctor was truly excited we made it this far in the pregnancy. All along we knew Tommy would be born early, but it’s still a shock when the time finally arrives.

10/9/13 – Fast Moving Day

(This was a day with three updates sent. They appear in the order they were  sent, but the evening update contained all the information.)

Sent at 9:57am

Missy and baby fine. going for tests right now. love you all.

thank you all for your concern and love.

PS. it is just blood pressure not preeclampsia.

PPS. test is ultrasound and blood flow. will have more later.

Sent at 12:07pm

Well, the test didn’t go well or it did.

Again, everyone needs to know I have a love/hate relationship with the high risk doctors.

This morning our doctor, Dr. Beartlesmeyeriammessingupthespellling, explained to Missy that today is a waiting day. No changing medicine. No delivery. No nothing. It is a wait and see day. He did schedule a cord blood flow test.

The test measures the flow from Missy to Tommy through the cord. Test takes 10 minutes and is basically an ultrasound.

After, we’re waiting for the results and a transport person comes in to take Missy up. We explain we didn’t talk to the doctor, so as we’re being wheeled out we saw the doctor. Dr. Moore. The more conservative doctor. I always feel like she thinks, “We have to do something now!!!!!” Ours doctor is the surfer, zen one. Even keel, don’t rush.

Dr. Moore explains that Missy’s blood pressure might be too low now or too high or something. They have no idea. The blood flow didn’t look ideal, but there was no explanation of why or how.

As we left, Dr Moore told us Missy shouldn’t eat or drink anything. Dr. Webb, another doctor in the practice who is the super optimistic guy, was on the phone with Dr. B (our doctor) explaining things to him. They all work in the same group, so they know each other very well.

Oh, super.

We came upstairs and both of us realized we’re very blessed we got this far, the steroids are in and Tommy looks great for his age. Missy took a shower in something that looked like it came from Star Trek. I wanted to send a pic, but Missy told me I couldn’t send one of her showering.

After the shower we had just a fantastic talk with our nurse. She has worked as a nurse for years and explained the test results came back with no new orders. The test looked fine with nothing shocking. Weird, eh.

Our nurse explained that if anything was an emergency or imminent she would have received orders ASAP and the neonatologists would be here.

No new orders and the doctors did not appear.

Missy and she decided it was OK to finish breakfast, which made Missy very happy.

We’re in a holding pattern and we’re OK with this. We know there is no normal right now. lol

Missy and I are so thankful for getting the steroids in and seeing Tommy on the ultrasound today.

Love you all.

Sent at 12:27pm

Missy wanted me to include the following:

  1. She doesn’t have preeclampsia.

  2. We are in the hospital until we deliver.

  3. She appreciates everyone’s concerns and thoughts.

  4. She will make sure I run through all emails with her before sending.

Sent at 5:14pm

No changes. Missy had a long day and finally sleeping. Love you

Sent at 10:08pm

Summary: Tommy probably coming tomorrow. If not tomorrow, he will very, very soon.

Good evening …

Today was a good day overall, but the blood flow test came back and showed that there isn’t the volume or pressure of blood getting to Tommy they would like to see. This is typical of patients with high blood pressure outside pregnancy or the beginning signs of preeclampsia.

This afternoon Missy was very tired, so I brought Shannon in for a quick visit after school and then we headed out. Missy slept a little until our doctor, Doctor Bartelicannotspellit, came in. His first words are sort of upsetting:

“I think we’re going to be done tomorrow.”

Now, I don’t know about you, but the proper usage of the word done is in relation to cooking almost exclusively. Boy, that sure upset Missy.

Yes, I am being funny about something pretty bummerific.

The doctor began explaining to Missy that Tommy was being delivered tomorrow, but then was paged and had to leave. Missy called me at home and I immediately left when Cassie arrived to watch Shannon.

I arrived around 6:45pm and the doctor finally came back at 8:30pm. We occupied our time while waited by paying bills and watching the Cardinals. Missy is our CFO, so if she isn’t at home to pay the bills, we end up in the street.

The doctor explained the following:

  1. Missy’s health is fine.

  2. Tommy appears to be fine.

  3. The blood flow study, which shows the pressure and volume of blood from Missy to Tommy was not what they want to see.

  4. Tommy’s heart rate is dipping occasionally going from 130 to 90ish. This isn’t a good thing.

  5. Tommy’s heart rate isn’t jumping. Most older babies (30+ weeks) will show jumps in heart rate from time to time. Tommy’s doesn’t do this being at 27 weeks.

The doctor laid out his plan which is best summed up by saying that not one thing right now would cause him to deliver. It is a combination of things based on the health of Tommy not Missy. Missy is doing great considering she is on a ton of heart medicine.

Tommy, from what everyone can see, is doing fine. He has enough room, there is enough liquid in the sack, etc. Missy wanted me to say “amniotic fluid”, but I prefer liquid in the sack.

The doctor’s plan is to redo the blood flow test tomorrow and do something called a fetal profile. The profile takes into consideration a variety of factors.

Missy cannot eat anything past midnight, so she’s enjoying cookies and milk. The blood flow test will be anywhere from 8am to 10am. After that we should know pretty quickly if delivery will happen or not.

Then again, if his heart rate drops throughout the night he could be delivered overnight.

Missy and I just want the best possible chance for Tommy to be healthy. At midnight tonight he’ll have the full benefit of the steroids and an extra day inside Mom.

If Tommy is delivered tomorrow, I will ensure everyone is updated.

How are we doing? Pretty good. We always knew it would be an early delivery and we’ve gone through this four times now. We think 10/10 is an awesome birthday to have, but then 10/11 would rock, too.

All I can say is that the sacrifice Missy has made during this time is truly something I am grateful for. We had a 5% chance of conception, but a 100% chance of early delivery. Missy accepted this and with full gusto, she’s put her life on hold to nurture and grow our baby.

Thank you all for your prayers and thoughts. Love you all!

Details and Thoughts

Steroids are Critical

Premature babies used to experience a high mortality rate for a simple reason: they couldn’t breathe. The air sacks inside their lungs weren’t developed enough leading to RDS.

The steroids given to the mother through injection are spaced either 12 or 24 hours apart and encourage the fetus to finish lung development. The steroids cause a stress reaction to induce lung development. The longer the baby remains inside the womb with the steroids, the better the outcome.

Our Path to Baby Four

Tommy is our fourth child and is the only surviving child unplanned and not helped by any fertility aids. We consider him our gift and miracle.

10/8/13 – Morning Update

(Note: The title of the emails changed from here on out due to shifting from weekly to daily notes.)

Summary: Missy admitted last night due to spiking BP. Missy and baby fine.

Good morning,

Yesterday, Missy noticed her blood pressure rising throughout the day. Our normal methods of bringing it down through relaxation and a bath did not help. When it peaked around 180/120 we called the doctor who said, “Come in to the hospital for steroids.” The steroids are given to Missy to help Tommy grow his lungs quicker and it means we’re on the road to having the baby sooner rather than later.

We made it to the hospital at 9:14pm and Missy’s BP at intake was back to normal. This was good news for Missy, but since we were here the monitoring started. They monitor the heart rate of Tommy to determine if he is in stress or not.

By 11pm the blood work and urine tests came back and everything looked fine. Tommy’s heart rate was doing good and the decision was made to administer the steroids. Since this is a 24 hour procedure with 2 shots we knew this meant at least two nights in the hospital. It also meant going to labor and delivery. For two people trying so hard to keep their baby inside the last thing you want is labor and delivery.

We made it up here about midnight and thus began the 3 hour long process of trying to find Tommy’s heartbeat for more than 10 minutes at a time. Between Tommy’s size and Missy’s restless legs the monitor kept losing the heartbeat. God love that woman. At home, she has many things she can do like walk around, talk a bath, use a heating pad or eat to help her legs. At the hospital there was nothing. She finally found some relief at 3:00am and I left to get some sleep at 3:17am.

I woke up and called Missy to find out she hadn’t slept all night. The legs got worse, the BP went up and she just had a miserable night. I knew I shouldn’t have left. When I arrived at the hospital about 10 minutes ago she was sleeping. I spoke to her nurse who said Missy just fell sound asleep. I’m in the waiting room now letting her get some rest.

So, the two questions everyone has:

  1. Is Missy OK? Yes, her blood pressure has spiked like this in the past, but always comes down. It didn’t come down yesterday, but as almost always happen, by the time we got to the hospital it was down. Poor woman hadn’t eaten since 5pm until 2am when they scrounged up some food. Right now she is sleeping to make up for the restless leg issues last night; she must be exhausted.

  2. Is Tommy OK? All indications are yes. His heart rate stayed around 130 for the time I saw, but he would continually move and lose tracking. The nurse just told me he’s been tracking well. Last night we had a few scares where his heart rate would dip, but that could be a normal thing. They just need to monitor more. I would suspect we’ll have an ultrasound today and cord blood flow study. There has been no discussion of delivering, though we had to sign all the standard delivery paperwork and he did receive the steroids through two injections Missy received.

Cassie took care of Shannon last night and had some fun. I got a call around 9:45pm … Shannon had locked Cassie and her in the bedroom. I left Missy, ran home and unlocked the door to free them. I tell you, the Grotes always find something humorous during these times. Cassie took Shannon to school today and they got off without any problems.

I didn’t call anyone last night due to the fact we didn’t know what was going on and nothing seemed imminent. I slept from 4am to 7:30am and am back at the hospital.

A few notes:

  • We’re at Mercy hospital where we’ve had all our kids and the perinatologist are based.

  • They are changing up Missy’s medicine to try to get the BP lower. It went up during the night, but Missy and I think it was due to her legs.

  • Sleep is the big thing for Missy right now. The more she can get the better for her and Tommy.

  • We are a day short of 27 weeks.

Thank you all for your positive thoughts and prayers. Love you all.

Details and Thoughts

Fetal Bradycardia

The external monitoring of a baby’s heart rate after admission is as much as art as science. The first attempt is made by two elastic bands pulled and wrapped around a woman’s midsection. One of the monitors checks for contractions, while the other measures the baby’s heart rate. Depending on the position of the baby, the size of the woman, the sensitivity of the machine and calibration, it can take a while to find a good, reliable heart rate. Do not panic.

This photo shows a full term baby being monitored; imagine a premature baby being monitored. Tiny baby, small heart makes a tough target to pinpoint.

When a the heart rate is found, do not despair if you notice a short dip. Again, it could be the baby moving. Doctors will rely on measurements of a period of time to determine if dips are indicative of fetal bradycardia. Even then, if your baby exhibits fetal bradycardia, it doesn’t mean delivery is imminent.

3:17:22

Good morning.

Missy and Tommy are fine. I am tired. I’ll be back at the hospital by 8amish tomorrow and Cassie is taking Shannon to school.

I left the hospital this morning at 3:17:22. I know this due to the photo I took of the monitor before I left.

Earlier today, Missy noticed her blood pressure rising. It continued throughout the day and by the evening our normal ways of lowering her blood pressure weren’t working. It hit 180/120 for two readings in a row and we called the service. The doctor on call said come in.

We got there at 9:14pm and Missy’s BP was down to normal. Whew. But … they wanted to monitor and administer steroids to Tommy … the steroids help the lungs grow in preparation for being born.

Monitoring and testing showed a pretty healthy Missy and Tommy.

The steroids are 2 shots in 24 hours, which means Missy will be in the hospital for two days .. at least.

We spent the early morning moving to labor and delivery and more monitoring.

They didn’t want to feed Missy until they consulted the perinatologist, but they finally relented. This was huge as it meant Tommy was probably not coming early this morning.

Bonus … the nurse attending to Missy went to FloValley, which is where Cassie goes.

How are we doing? We’re at peace with what is happening. We knew the day would come where we would be in the hospital, so we’re hoping for the best.

Love you all.

Details and Thoughts

Have an Outlet

Throughout your journey in the NICU, there’ll be times you need to bring down your brave front and just let raw feelings out. The following note is what I sent to my sister before I sent the above to my family. While my note to the family focused on the very positive outlook, I was stark with my sister. I was afraid, nervous and realizing our efforts to keep our baby growing inside were coming to an abrupt end.

Missy just woke up briefly and I went in to see her. Tommy is doing fine, but Missy’s BP is high. 179/97, so they have increased some of the medicine.

She is going back to bed now that the legs stopped.

The BP is worrisome. The perinatologist always goes with the mom when it comes to decisions on care.

Coincidence time … the woman who admitted Missy with Shannon is the same one that did it last night. Dr. More. The man who is caring for her today is the same one that delivered Shannon. Dr. Webb.

It’s happening all over again.

Cassie is here now and she asked me if Tommy is coming today. I told her I don’t know.

I do feel it’ll be soon as in tonight or tomorrow, though. I hope not.

I only sent this to you. Love you

My sister responded:

Patrick, I love you & I pray that Tommy has more time to grow inside Missy. I do not believe in coincidences, I firmly believe God places people in our path to comfort & reassure us.

Please keep me posted. Depending on how the day goes for Missy, I am going to come in town. I already have a place to stay:)

Love you!

Her response was immediate, assuring and calming. We hope you have someone in your life acting as the ballast during your storm.

There is one more detail about the above email that needs explanation. I say, “The perinatologist always goes with the mom when it comes to decisions on care.” Understand this is my opinion based on perinatologist care through four high risk pregnancies. They do a wonderful job balancing care, but will always put the mother’s health above the baby’s when the time comes for a decision.

Week 26 – Excited Doctor Alert

Hello,

We had our new weekly visit with the perinatologist today. As you remember, we now have a standing weekly appointment due to the fact we’re entering the third trimester.

Unlike past appointments, we had no out of the ordinary nervousness today. This is due to the fact Missy has gained some normal pregnancy weight and her blood pressure is down to a new normal. The medicine the cardiologist increased has worked well.

Have you ever seen an excited doctor? We did today.

Doctor B. bounds in the door and the first thing he says is, “26 weeks now? I didn’t expect to see you guys here.”

The appointment kept up the sort of optimistic excitement as he reviewed everything. The urine test from the beginning of the appointment showed trace protein, which is normal. The doctor was surprised by the lack of swelling in Missy’s lower legs and feet. He was extremely happy with the blood pressure numbers.

Doctor B. walked through all the warning signs of preeclampsia and wanted to let us know the conditions we should be looking for. We don’t have any. What am I saying? Missy doesn’t have any. lol

He was so satisfied with the appointment that he didn’t move up the next ultrasound, which is October 21st. We still have the weekly appointment, but that is more of a check in sort of thing.

Other family notes … Cassie passed her first three check offs for nursing and is working a rotation in the hospital now. Last week, she was in the OR during a wound debridement.

Shannon is going to kindergarten full time and loving it. We missed kindergarten soccer sign-ups, but we play every night for 20-30 minutes. She loves soccer and sucks up anything people teach her. Shannon’s favorite move is something her cousin Lauren taught her.

Thank you all for your positive thoughts, prayers and mails. Love you all.

Details and Thoughts

Preeclampsia is Serious

As discussed previously, preeclampsia is a serious condition for high risk pregnancies, especially in the third trimester. Do not feel like you need permission to ask your doctor about symptoms you think are affecting you.

Think of it this way, the quicker you can deal with an issue, the more time your baby has to grow and your journey through the NICU is delayed.

Week 25.5 – Ultrasound

Hello,

Just an interim mid-week update. We had an ultrasound today and it went great!

Highlights:

  • Boy weighs 1 pound 10 ounces.

  • Everything is there that should be there.

  • Heart is perfect.

  • He is slightly undersized, but there is no concern.

Our doctor (Dr. Bartelsmeyer) was working in the ultrasound clinic today, so it was great that someone with Missy’s complete history could review the results. We waited a while, but he finally came in with a big smile on his face and let us know all the above.

Doctor B. was genuinely satisfied with our progress. He was so satisfied that our next ultrasound is 3 weeks away, which means there are ZERO concerns right now.

We still have the normal weekly appointments with Doctor B., but these are purely checkups to ensure nothing pops up.

Here are the photos:

Profile Photo: He was hiding a lot this morning, so shots of his face were hard to come by.

Leg Photo: He had his legs crossed and bent to over his head. Yep, I cannot even think how this happens without proper yoga training:

Boy Photo: Last week, I suggested to Missy we choose a girl’s name in case the ultrasound was wrong. This morning took away any surprise factor:

Thank you all for your positive thoughts and prayers. I’ll send out an update after our doctor appointment on Thursday.

Love you all.

Details and Thoughts

Ultrasounds and High Risk Pregnancy

Anyone who has gone through pregnancy knows the routine of the ultrasounds, but with high risk pregnancy it is slightly different. The focus isn’t so much on immediate joy, but hoping there is nothing wrong. From the ultrasound technician, to the nurses to the doctor, you look for signs that something is amiss. As you enter the third trimester the ultrasounds become weekly events, which add to the excitement and trepidation.

Week 25 – Roller Coaster of Doctor Appointments

We had the first of our weekly appointments with the perinatologist. As the guys at work refer to him, the paleontologist … I think they are convinced we’re having a velociraptor.

The Past Week

Last week, Missy had protein in her urine and the doctor became concerned. Throughout the week, Missy had a 24 hour urine test and a 3 hour glucose test. The urine test was to see if there was protein in the urine and the glucose test was to check for gestational diabetes. As the week progressed, we were strolling through Target and got a call from the hospital. The doctor’s office was calling letting Missy know that the urine test results were back and her creatine was high. I immediately knew what this meant, but Missy was a little fuzzy about it until she jumped on the iPhone. Curse smartphones.

Creatine is something everyone has in their body and is a by product of feeding your muscles. Too much and it could indicate impaired kidney function, which is a marker for preeclampsia. Missy became a little distraught, but once we realized that if the number was too high the nurse would have called ANY of the doctors in the office and we would be in the hospital. A little more research showed the numbers were slightly elevated and not high enough to cause any concern. Whew. Somehow, the medical system needs to do a better job of this when the say “high.”

The rest of the week was uneventful with the baby very active, Missy being tired and Shannon starting all day kindergarten everyday. This was a bummer since she was only going all day 3 days a week and 1/2 day 2 days a week. Our little girl is growing up.

Cardiologist

We had an appointment with the cardiologist yesterday, Dr. Nash. Great guy and fellow tennis player. He is hyper vigilant concerning Missy’s blood pressure and wasn’t happy with her average readings. Typically, the perinatoligist runs point on all changes to medication, but Dr. Nash went ahead and increased a medicine. Other than that, the appointment went awesome. He was happy with Missy’s health through pregnancy and was encouraged about our efforts to track the blood pressure.

Missy changed her dose last night and it’s immediately paid off. Her readings today have been lower!

Today

Our cabinet is full of stuff … supplements, vitamins and urine test strips. Urine test strips? Yep. When I go serious low carb I test myself to ensure my body is generating tons of keotones, which indicate your body is burning fat. They also measure protein in the urine …

We seized this and started testing Missy’s urine each day … sometimes multiple times. We had a couple of days with some protein, but lately it’s been none. Awesome. Remember, protein in the urine is another indication of preeclampsia.

At 3:40pm today, we had the appointment with the perinatologist. I met Missy at the elevator and I could tell something was wrong. She told me she tested her urine before leaving home and there was protein. I did my best to settle her down, but we both knew that wasn’t good.

You need to understand that the perinatologist is always busy and you always wait. Our 3:40pm appointment turned into a 4:20pm one. When we got into the exam room the nurse took Missy’s blood pressure and it was high.

For the love of … Protein in the urine and now a high blood pressure reading.

The doctor comes in and is pretty happy. I think to myself, “These guys do a good job hiding things.”

He comments on the blood pressure and Missy immediately pulls out the urine test strips we use and explains her BP was high due to the bad news of the protein. The doctor looks at the notes and tells us the 24 hour urine test showed no protein nor did the urine test Missy took when we arrived for our appointment. He then laughs.

It took me a second to process this all.

He went on to explain he’s not concerned in the least bit. From time to time everyone has protein in their urine, which is why the 24 hour test is done. If that is clear, there isn’t a concern.

I then said, “So, what you’re saying is that protein in the urine is something we can cross of our unnecessary concern list?”

We all laughed.

He moved on to the blood pressure and Missy explained about the change Dr. Nash made. He was happy to hear this and was satisfied the BP was fine for now.

Missy and I smiled.

He turned around and got a little serious. Explaining that everything is going well now, he saw no reason to admit Missy to the hospital or give the baby steroids to increase lung development. This is done when a preterm baby is about to be born. It’s like the express lane for lung development and attempts to prevent RDS (respiratory distress syndrome). The doctor did say we’re now going to have weekly visits and ultrasounds.

When he left Missy and I laughed so hard. The roller coaster ride is starting, but today was all good news. We’re going to make it to week 26.

Coming Up

We haven’t had an ultrasound in four weeks and I gotta tell you, I am pumped for another one. That’ll happen on Monday morning at 9am. I cannot wait to see him again since I feel like I know him from listening and feeling him move.

The ultrasound will focus on a few things:

  1. Development: Are all the parts growing properly?
  2. Size: He should be 1.5 pounds.
  3. Cord blood flow: This is the critical measurement and what caused Missy to be admitted with Shannon at 29 weeks. There is a certain volume and pressure of blood flow that needs to go from Mom to baby, so the ultrasound ensures it is fine.

We’re also going to start getting things going at home. Shannon has decided that when she switches rooms she needs her own bathroom. I have no idea where she got this idea, but she has her eye on Cassie’s room ….

So, that is where we find ourselves right now. Thank you all for your continued prayers and positive thoughts. I cannot tell you how much it means to Missy, Cassie, Shannon and me.

Love you all.

Details and Thoughts

Perinatologist

Perinatology is maternal and fetal medicine. The doctors take care of high risk pregnant mothers and their babies. Sometimes, it is frustrating when dealing with them due to their constant balancing act between mother’s and baby’s health. Many times we found ourselves strenuously trying to convince the doctor Missy could handle her high blood pressure, but each time the doctor walked us back.

Their balancing of treatment is a specialized skill and one which doesn’t have a safety net. Do too much for the mother and the baby suffers, while focusing on the baby could impact the mother.

We found the best perinatologists are confident, clear and concise. Telling you the truth with statistics based on their practice put us at ease, while the ones who tried to see the best outcome in everything were grating. This became especially true as we had our third and fourth experiences.

Preeclampsia

The word itself strikes fear into pregnant mothers. Our first pregnancy experienced preeclampsia, but we were lucky to not experience in the later ones due to vigilant care. As long as proper prenatal care is given and regular doctor visits occur, your chances of experiencing preeclampsia are low. Keep in mind, there are times you won’t experience any of the symptoms, which means regular prenatal visits are critical.

If you have any of the symptoms, please let your doctor know right away. Don’t worry if you feel you’re being a pest or your symptoms aren’t important. Your doctor can help you determine what is cause for concern.

The cause of our preeclampsia in our first pregnancy was more than likely due to ignorance of the warning signs.

Respiratory Distress Syndrome (RDS)

RDS is the number one enemy of premature babies. Lungs are one of the last organs to mature even though they are formed 34 days after conception. The bulk of lung capacity and function happen after week 29.

Premature babies can suffer from a number of issues falling under the RDS umbrella:

  • Lack of lubricant in the lungs
  • Immature lung development
  • Immature blood oxygenation

Affecting 20% of babies up to 5.5 pounds and 66% of babies up to 3.3 pounds, RDS is battled with steroids given to the mother up to 48 hours before delivery. The steroids instruct the baby’s lungs to begin increased inflation and prepare for breathing.

In 1969, Sir Graham Collingwood Liggins observed additional lung maturity in premature sheep if steroids were introduced prior to birth. Pre birth steroid administration to help premature babies has occurred since 1972 and is a safe and effective method for reducing or avoiding RDS.

Introduction NICU Survival Guide

Yes, you are afraid, Yes, things are happening quickly. No, you cannot ignore it or turn back time. You are about to become or have become the parent of a preterm baby that needs aggressive medical care.

This is your life now. The panic, the fear, the reliance on others.

You are not alone, though. We wrote this book to help you understand the NICU (Neonatal Intensive Care Unit ) and help put you at ease with what is happening. We’ve experienced premature birth four times in our marriage with the worst and best outcomes through 3 decades in the NICU.

Our first son, David, was born at 1 pound 13 ounces in 1987 and passed away during a 2.5 month hospital stay. In 1990, our daughter, Cassie, was born at 1 pound 6 ounces and is now a registered nurse. Coming along in 2008 was our second daughter, Shannon, born at 2 pounds 6 ounces and is in third grade. Our second son Thomas was our last miracle and was born in 2013 at 1 pound 10 ounces and is 3 years old.

We know what you are feeling right now. We know what is making you anxious and fearful.

5 Things You Need To Consider

These are the 5 things you need to consider as you start your NICU journey based on our 3 decade experience with the NICU:

  1. Recollections: Find a way to record what happens while you’re in the NICU. It could be a paper notebook or a collection of emails like we did, but you are going to need it. It helps you stay focused on your baby and medical care. Also, it helps you understand what has happened as you go through the journey.
  2. Photos and Video: Take plenty of photos and video. They don’t have to be perfect nor do they have to be exciting. Having a photo or video record of your baby as they go through the NICU experience helps your mental health. Make sure you snag a few comparison shots between your baby and another object; the comparison helps you understand how they are growing.
  3. Accept Help: A baby in the NICU is going to consume you as a person and you cannot do it alone. You could be the strongest, most focused person in the world, but you will fail if you do not accept help from the people in your life. You are not too proud to do everything you can to ensure your baby’s success, so don’t refuse help.
  4. Talk to Someone: Eventually, your emotional bucket is going to overrun. The only way to empty it and begin anew is to talk to someone. Your partner, friend, parent, someone. Don’t censor yourself and don’t judge yourself.
  5. Control: Right now, you are not in control. You won’t be in control until way down the road. The road is not straight, well paved or even finished. It’s going to get curvy, rough and you won’t be able to see the end. The sooner you understand this and accept it, the sooner you’ll find internal peace to handle the upcoming challenges.

The NICU is designed to keep your preterm or seriously ill child alive and foster development. You, the parent, are not a goal of the NICU past the extremely important part you play in your child’s recovery and development. The entire focus on your interaction with the NICU will be on your child. Yes, some accommodations will be made for you and your family, but when it comes to setting rules, guidelines or standards, the babies are the focus.

We start the book where we started our final NICU journey, pre-birth. Given our history, we knew we were destined for an early birth, but just how early and what complications would arise were unknown to us.

Book Format

Each chapter starts with a Daily Status Update we sent to our family and friends to keep them apprised of our situation and is followed by Details and Thoughts of the topics covered to help you while you are in the NICU. The Daily Status Update is shown in italics and is presented unedited, so you can read what was actually sent. The daily status updates are published with spelling, grammatical and usage errors as they were in the emails, so understand they were not edited.

At anytime you need more information, click on an underlined word and it will take you to an external link or the internal glossary.

You are not alone and your child is benefiting from the best care they can possibly receive. You won’t be able to eliminate all your anxiety or fears, but knowing others have gone through the same events can help you cope.

Disclaimer

This book is not medical advice and is not published for you to use to base medical decisions with. It has not been reviewed by anyone in the medical community and possibly contains medical errors. Do not use this book to determine medical actions. It is written as a recollection of our experience in the NICU based on daily updates. Nothing more.

If you require medical advice about your child’s care in the NICU, please talk to your neonatologist.

Trademarks

All trademarks are owned by their respective organizations.

Hospitals and Parent’s Groups

If you represent a hospital or NICU parent’s group and would like to distribute copies of the book, please contact fortheinfo@gmail.com.

Glossary NICU Survival Guide

A

Anemia – A condition that occurs when your baby doesn’t have enough robust red blood cells to transport oxygen throughout the body.

Antenatal steroids – Two steroid injections are given to mom if a premature birth is about to occur. The steroids induce a stress response in the fetus that forces quick lung development.

Arrhythmia – A problem with the rate or rhythm of the heartbeat.

Arterial blood gas – Blood drawn from an artery and tested for O2 and CO2 levels among other indicators. Used primarily to guide treatment of the ventilator and to assess breathing performance, efficiency and functionality.

B

Biophysical profile – A prenatal ultrasound to determine the health of a fetus. Fetal breathing, tone and movement are observed in addition to amniotic fluid level.

Blood transfusion – The process of your baby receiving blood products intravenously from a donor. The blood product doesn’t have to be whole blood, but can be just red blood cells, plasma or other parts.

Bradycardia – Slowing of your baby’s heart rate to usually less than 80 beats per minute. They are referred to as bradys or bs and are caused by anything from something serious to your baby moving.

Bronchopulmonary Dysplasia – Lung deterioration caused by long term, 28 days or more, exposure to the pressure from a ventilator. Babies can recover from this affliction, but it may take a long time.

C

Caudal block – Anesthesia used to provide anesthesia below the belly button. It is mainly used in pediatrics due to the more open anatomy of children.

Cell culture – The process where cells are grown in a laboratory controlled condition to identify the organism. In the hospital, it is more than likely a microbiological culture, which sees if bacteria grows and if so, what type.

Continuous positive airway pressure – Known as CPAP, provides positive air pressure continuously, which allows the airways to stay open for breathing.

D

Desat – Baby’s O2 blood perfusion is measured in the NICU using a pulse oximeter. Depending on the health and activity level of your baby, the number should be above 95. If it falls below this threshold, the baby has a desat(uration).

Dextrose – Carbohydrates delivered through simple sugars providing extra calories for your baby.

E

Electrocardiogram – A non-invasive test used to check your baby’s heart’s electrical activity. Irregular activity could be indicative of an issue.

Extubation – Removal of the hollow tube providing mechanical ventilation.

F

Failure to thrive – A term used when premature babies weight or rate of weight gain is significantly below that of other children of similar age and gender.

Fetal bradycardia – When a baby’s heart rate in utero dips below an accepted healthy average, the baby experiences fetal bradycardia. There are many causes, but could simply be due to the fact the baby has moved away from the external monitor. Continuous dips of the heart rate typically demonstrates fetal stress.

G

Gavage feeding – A way to provide breast milk, formula or feeding supplements through a nasal tube to your baby’s stomach. Gavage feeding is for preemies that cannot bottle feed.

H

Heart murmur – Abnormal heart sounds made as blood passes across the heart valves.

Hematocrit – The measurement of volume percentage of red blood cells in blood.

Heparin Lock – In order to keep an unused IV line open for future use, a heparin lock is used. Heparin is a drug that reduces blood’s ability to clot.

HIPA – Health Insurance Portability and Accountability Act that means you will be subject to byzantine rules concerning privacy.

Hypertension – A chronic medical condition manifested in high arterial blood pressure.

Hypoglycemia – Blood sugar lower than normal levels.

I

IV line – Allows in the vein administration of medicine. It is the fastest way to deliver most medications.

J

JET Ventilator – A special ventilator providing more “breaths” per second to continuously fill the lungs.

K

Kangaroo CareTM – In the NICU, you will have the chance to kangaroo, based on Kangaroo CareTM. Your baby will in a diaper and skin to skin contact is made with your breasts (mother) or chest (father). Many studies have shown it aids in preemie development.

L

Leukocytosis – A white blood cell count above the normal range. There are five different causes of elevated white blood cell counts. Normally, it is due to inflammation or bacterial infection.

Lipids – A fat supplement given to premature babies to help with nourishment and to provide additional calories.

M

Meconium – The first solid voiding of an infant on their own. It is thick and tar like in appearance.

Mean arterial pressure – Measures the average arterial pressure during a single cardiac cycle. It is a measurement used to ensure organs are supplied with enough oxygen.

N

Nasogastric tube – Commonly referred to as an NG tube. The plastic tube is inserted through your baby’s nose, down the throat and into the stomach. It is used to deliver breast milk, formula and/or feeding supplements.

Neonatologist – A pediatrician specifically trained to handle newborn intensive care. They are certified through an additional board to practice.

Neonatology – A subspecialty of pediatrics consisting of newborn infants requiring advanced, specialized care.

Neutrophils – A type of white blood cell that is one of the first dispatched to the site of an infection.

NICU – Neonatal Intensive Care Unit is an intensive care unit designed to treat premature or seriously ill newborn babies.

Nitrous Oxide – Known commonly as laughing gas, it is used primarily as anesthesia. For preemies, it has demonstrated remarkable properties for helping lungs heal and develop.

Nosocomial – Originating in a hospital. In terms of infection, it’s infections that result from hospitalization and not maternal factors.

NPO – A Latin phrase, Nil per os, meaning nothing through the mouth. Your baby may need to be NPO to undergo certain tests or therapies.

O

Oxygen saturation – A measurement of oxygen saturated hemoglobin to total hemoglobin. The range for preemies can vary between 90-100%.

Oxygen therapy – Administration of oxygen is sometimes needed to ensure your preemie is as healthy as can be. Most times, oxygen is given to help with blood oxygen saturation; ensuring enough oxygen is available in the blood.

P

Parenteral nutrition associated liver disease – If your baby is on TPN for a long time, there is a chance of parenteral nutrition-associated liver disease (PNALD). PNALD can lead to liver failure. The NICU medical team will test your baby’s liver functions to ensure there aren’t any issues.

Patent ductus arteriosus – The blood vessel, ductus arteriosus, connects the aorta and pulmonary artery in babies. After birth, the blood vessel should close, but in preemies it is stuck open (patent).

Peak inspiratory pressure – Is the highest level of pressure applied by the ventilator to the lungs during inhalation.

Perinatologist – A doctor who specializes in high risk pregnancy care for the mother and fetus. High risk could be due to mother’s health or issues with the fetus.

Peripherally inserted central catheter – Known as a PICC line, it is an IV line for use over an extended period of time. For preemies, it is primarily used for medication, feeding and blood draws. Unlike an IV line that is inserted with a needle, the PICC line is surgically inserted.

PO – per os, which is Latin for by mouth. When a medication order indicates PO it is by mouth.

Preeclampsia – Affecting 5-8% of all pregnancies, preeclampsia is a condition that is dangerous for positive pregnancy outcomes. Symptoms include protein in the urine, high blood pressure, weight gain and headaches, though some pregnant women may never suffer noticeable symptoms. It is one of the leading causes of mother and baby illness and death during pregnancy.

Protienuria – Protein in the urine. People will have a small amount of protein in their urine from time to time, but for pregnant women it can be a symptom of preeclampsia.

Pulse oximeter – A non-invasive device for measuring your baby’s O2 saturation. They are typically led lights held against the skin by wrapped gauze and secured with a velcro band.

R

RDS – Respiratory distress syndrome primarily affects babies born 6 weeks or more before their due date and is caused by lack of lung development.

Retinopathy of prematurity – Eye condition affecting only premature babies and is the leading cause of child vision loss. It is caused when blood vessels grow improperly and spread throughout the retina.

Respiratory therapist – A health care worker who passes a national board examination focusing on cardiology and pulmonology. Many focus on airway management, so this is who you will interact with in the NICU. They are responsible for maintaining and using various devices such as the ventilator.

S

Strabismus – When the muscles that control the eye don’t work together, it causes the eyes to point in different directions. It is not lazy eye.

T

Total parenteral nutrition – A way of feeding that bypasses the normal way of eating and digesting. For preemies, it includes glucose, protein, lipids (fat), vitamins and other nutrients.

U

Ultrasound – A common name for obstetric ultrasonography, which uses sound waves to let medical personnel to check on your baby’s progress through pregnancy. If you are a high risk pregnancy, you’ll have ultrasounds weekly toward the end of pregnancy. After birth, the ultrasound is used to ensure your baby’s organs are developing properly and there aren’t any issues.

Umbilical artery doppler assessment – Using an ultrasound machine, the doctor or technician can focus on the blood flow between the mother and baby. They look at volume, resistance and direction of the blood flow.

V

Ventilator – A machine that functions to provide breathable air to your baby by moving air in and out of the lungs. There are a wide variety of ventilators for use. Preemies need ventilators to help with breathing due to functional lung issues or offsetting caloric requirements.