If you deliver a premature baby…

This is a letter to mothers who deliver a premature baby.  My son, Aiden, was born at 25 weeks gestation and spent 3 1/2 months in the NICU.  I remember searching for positive and negative stories from other families in order to feel a connection, a relation, to what I was experiencing.  I hope this letter helps you.  I understand.  I am part of this community and I can tell you it’s going to be okay.

If you deliver a premature baby…

You will be in shock. A premature baby isn’t what you and your husband planned. There isn’t a course for this, you have to deliver your child on instinct and fear. You will say to the doctor, “it’s too soon, he’s too young.” But he comes anyway.

You will see him in an incubator, and be told not to stroke him, your natural inclination. Wires will be attached to his chest, lines from his umbilical cord, a ventilator in his chest. You will talk about lungs, heart, gut, brain, eyes and ears. Do they work? We don’t know yet. Will there be issues? We don’t know. Time will tell.

You will mourn your pregnancy. When you see the term babies leaving the hospital day after day, you will watch them with jealousy, then force your mind to move on.

You will dislike the doctors with crude and nonexistent bedside manner. You will need to learn a new language – medical terminology – and be asked to help make decisions that affect your new baby. This will frustrate you. How can I know the best answer?

You will have nurses you absolutely love and others you don’t like. Some nurses want to see your child excel and will be open to trying new steps to help your child progress. They want to nurture and help you cope. Other nurses follow the textbook and offer cold hard truths.

You will be asked about milk supply, are you pumping every 3 hours? You will be expected to produce milk to feed your child from a tube. The pumping will hurt and you will hate it, but you’ll do it.

Your baby will be poked and prodded. His discomfort will make you look away in tears. Doctors will advise you not to watch the procedure, it’s harder on parents than the baby. It’s true, but you feel guilty for not taking on the emotional trauma when your baby feels the physical pain.

Your only comfort is cradling his head and feet. A few weeks longer and you will be able to have skin to skin. When that day arrives, cords, oxygen lines and his fragility will require multiple nurses to hand him to you. The first time you hold the warmth of your child on your skin will take your breath away. “Mom is here, mom will protect you.” But then you have to put him back and leave him to doctors and nurses that don’t love him like you.

You will hit more problems. Infection, more tests. Does he have sepsis and meningitis? How are his eyes, his ears, kidneys? Is he ready to come off breathing support or do we give him a few more days?

You will be more scared than you ever thought possible. Your fears will take over your life. You won’t sleep. You will clench your jaw so hard at night it’s sore for months. The fear will make you become numb to everything.

Your husband will become your rock. How could you never see this side of him before? He is strong and comforting, holding you while you break down and cry. Telling you everything will be okay when he has no idea if it will be.

But one day you wake up and realize this is it. This is the only life you have and the only life your son has. As hard and painful as this process can be, you are going to survive it. And just maybe, he will survive it. Your wounded heart slowly opens, allowing love and wonder to enter.

I promise you that when that day comes to go home, after months of emotional pain, you will look forward to begin the life you always imagined. Maybe it’s not exactly what you wanted, but you’re home with him. And he’s your baby, and this is your family.

You capture every expression, every smile, frown and cry. Because you look at your baby, who may not be here today, and realize how empty life would be without him. He fulfills you in ways you didn’t know existed. You will love him with your whole heart. And it will all be worth it.

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Home

We haven’t posted lately and I can’t believe we didn’t share the most important milestone – we are home!  We flew early morning on July 27th.  Eric and I both slept through our alarms (we had to be up by 3 AM) so we rushed to the airport.  Can you imagine if we missed the most important flight?  The flight was uneventful after that, Aiden handled it very well.  A lot of people commented about how small he was and I think that’s because most people don’t bring their newborns on a flight…

My good friend, Lauren, picked us up from the airport and my coworkers (and friends) cleaned the house and hung a garland to welcome Aiden home.  They baked a cake (!) and gave gifts.  I’m continuously overwhelmed by people’s kindness.

Eric and I spent the last few weeks spring cleaning and building back up the yard and garden.  Our cat is thrilled we are home and she’s getting attention.  We have settled into a routine now with Aiden.  One great thing about the NICU is all the training it provided for us.  He’s on a feeding and sleeping schedule, every 3 hours like clockwork.

As for his follow-up care, we already visited our pediatrician and she referred us to specialists:

  • Blood Pressure – The nephrologist we visited at UCLA put Aiden on hypertension medication to lower his blood pressure.  She took his BP twice while he was resting and it was still high.  We have to give him oral medication twice a day to manage it.  She said most babies grow out of it.
  • Opthomology – Aiden has a small line in his left eye, barely stage 1 of Retinopathy of Prematurity.  Stage 3 is when laser surgery is required to prevent these blood vessels from pulling the retina off the eye.  The ophthalmologist thinks this line will fade on its own and not affect Aiden’s eyesight.  We have a follow-up appointment in 3 weeks.
  • Urology – Scheduled for this Friday.  Sorry little guy.  The Canadians don’t do this unless there’s a health concern.

He weighed 7.7 pounds in early August, we’ll know his weight again at our next pediatrician appointment in September.

We are home and happy.

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93 Days – Almost Home

Can you believe Aiden’s been in the NICU for three months?  What a terrifying, wonderful journey.  He is a true survivor, a miracle.  We are close to bringing our boy home.

Aiden has worked his way through many milestones:

  • He weighs 6 pounds, 3 ounces. He almost fits into newborn size clothing!  (For everyone that sent cute outfits, we’ll soon have photos to share – Mom, Teri, Bebe, Aunt Sandy, Jessi, Lauren, Tanya XOXO.)
  • They took out his feeding tube yesterday because he is feeding by bottle or breast. He’s not gaining weight as quickly as we’d like, but they told us to expect that in the beginning.  They’ve added HMF back into his bottles to continue with his calories and told us we may need to do that when we take him home.
  • He no longer needs a protein additive.  We hope this reduces his gas and straining.
  • The entire NICU is taking precautions for MRSA.  A baby in every room has tested positive, so nurses are required to wear gloves and yellow gowns when caring for the babies.  Luckily, Aiden’s test was negative.  We need to get out of here!
  • Aiden took the car seat challenge today.  He had to sit in his car seat for 90 minutes without desaturating. He passed!
  • He had his final head ultrasound (which is standard for all premature babies) and everything looked great.
  • We thought he was going to have his final eye test today, but they are still immature.  We will need to go to a children’s hospital in LA and get his eyes checked in 2 – 3 weeks.

There is still one outstanding concern we have: his blood pressure has been high for a while now, even while resting.  Nephrology is involved.  They conducted an ultrasound on his kidneys and everything looked healthy.  They are talking about another echo to check his heart, but there is unlikely changes from the first echo they took when he was born.  They said if they don’t see a major issue, they will likely discharge us and have our pediatrician at home monitor it (the medical records for Aiden will be a fun read!).

We heard today that Aiden could be discharged early next week.  It all depends on the Nephrologist.  This is really happening!

We are looking forward to this next chapter in our lives.  I was emotional last weekend and may have snapped at a nurse for stopping me from breastfeeding…I’m just to the point where I’m ready to start the life we should have had with Aiden.  Three months away from home is wearing.  The NICU is hard.  Breastfeeding is impossible without showing every parent, nurse, nurse aid, doctor, you name it, my goods. And the last thing I need is a nurse fresh out of school telling me how to care for our son.

I remind myself daily that through every frustration we have a beautiful boy.  And he says goodnight.

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Day 77 -The Milky Way

We have begun breastfeeding!  It’s not easy.

I thought it would be instinct for him (and me), and we’d pick it up quickly. He had the most perplexed look on his face when we first started.  Like…what am I supposed to do?  He’s managed to latch on a few times over the past few days.  I mentioned previously about the suck, swallow and breathe coordination.  He hasn’t quite figured that out.  He also tires easily, so about 20 minutes in he falls asleep.

It’s hard to remember he’s only 36 weeks gestation.  He would still have one more month to develop.  I’m trying to be patient.  I think I’m putting too much pressure on this because I know it’s the last thing we need to master before we can go home.  Aiden still desats every now and then, so it’s clear his lungs need to continue to develop.  But we heard from doctors we could go home in the next 2 – 3 weeks.  (!!!!!)  I’m trying hard not to get too excited.  As we’ve learned, the NICU experience has its ups and downs.

Aiden celebrated Independence day with an adorable outfit from Lauren and Sven.  They flew to Vancouver Island for their baby moon, and stopped by to meet Aiden for the day.  It was so sweet to see her hold him.  She’ll be a mom herself very soon!  The NICU nurses also created this adorable sign to help him celebrate.

My cousin, Tanya, her husband and two young boys also visited us over the weekend from Portland.  They brought the cutest outfits for Aiden and we had lunch nearby.

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Adien weighs 2,609 grams, or 5 pounds 11 ounces.  He’s such a big boy!

And finally, Aiden passed his hearing test.  Preemies can have hearing problems, we are thankful this isn’t something Aiden needs to worry about.

Day 73 – NO CPAP!

We are beyond thrilled to share that Aiden is completely off all respiratory support!  Aiden had chronic lung disease since birth (let’s figure out a way to change these scary medical terms, eh?).  He has done a better job than most micro preemies.  He was intubated the first two days of birth, and only for precaution.  They quickly put him on CPAP.  Over the past two months he had CPAP support to provide various levels of pressured oxygen when his lungs couldn’t do the work.  They slowly weaned his pressures until yesterday, when they decided he could breathe on his own.  We now get to see his sweet little face all the time!

He loves having his CPAP off too.  No more straps that hold prongs in his nose or a mask on his face.  Towards the end he would try to rip it off his face and the nurses would wrap his hands or swaddle him to prevent it.

The reason why this is such a huge milestone is because it means we are that much closer to going home.  Respiratory comes first.  His next step is learning to breastfeed and gain weight while he does it.  He’s already rooting and sucking on his soother.  Our nurse told us we could start as early as today…I’m a little nervous!

We spent a few days with my sister, Jessica, and brother-in-law, Kyle.  They decided to celebrate their 10-year anniversary in Vancouver and Seattle.  Jessica held Aiden for the first time and we both cried.  Aiden is lucky to have such a loving family!

Yesterday was also Canada Day and Aiden’s primary nurse decorated his crib to celebrate. Our little Canadian has double the holidays to celebrate (He’ll grow into that newborn size onesie soon…)

I love our little family.

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Day 69 – Just Cruisin’ Along

Look at this photo of Aiden, acting like he was never a 25-weeker.  All nurses assigned to him early on say they don’t recognize him now, they can’t believe how big he is!  He really is a different baby.

Aiden hit a big milestone last night – he weighs 5 pounds!  He moved to Q3 feeds on Sunday, which means he moved from feedings every 2 hours to every 3 hours.  He receives a larger amount at one time and seems to be handling it well.  He continues to receive the supplemental formula to gain weight, the nurses think he can be removed from that over the next week or so.

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He also graduated to a crib!  No more incubator for Aiden.  He’s able to regulate his body temperature on his own. Mom and dad are so proud.

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Look, he’s trying to run out of the hospital already!

His CPAP pressure has been moved to 5, which is the lowest pressure it can go.  Once he proves he doesn’t need it, the mask will be removed and we can see his beautiful face all the time.

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The cutest baby in the entire world (we’re biased).

Once Aiden is off CPAP he will be able to learn how to breastfeed.  He’s already showing signs by sucking on his pacifier.  It’s a longer process for preemies because they have to learn the coordination of suck, swallow and breathe. This will be a big step for him!

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The nurses cut the top off his pacifier to make room for the CPAP.

In order for Aiden to go home, he needs to accomplish the following:

  • No respiratory support.  And no desats (oxygen drops) or bradys (heart rate drops).
  • Breastfeeding or bottle feeding and gaining weight.
  • Pass eye test, hearing test and car seat challenge.
  • Hernia surgery.

We also need to make sure he can handle the pressures on the airplane.  A very small number of preemies go home with some oxygen support.  If Aiden is one of those babies, he won’t be able to go on the airplane.

So, we’ll just hang out in Vancouver as long as it takes.  As much as we want to go home and sleep in our own bed, I know we’ll miss this city.  We’ve done a lot of exploring and will want to come back to visit soon.  Just not while I’m pregnant. 🙂

 

 

Day 61 – 2 Months & Counting

Aiden is two months old.  I sighed with relief while typing that sentence.  He hit big milestones after he recovered from his infection. And we’re happy to share great news:

  1. Today was the last day of oral antibiotics.  He is now infection-free!
  2. He weighs 1,960 grams (over 4 pounds)!  He is finally looking more like a term baby with his baby fat.  He’s less sensitive and more tolerant of our touch.  I love to stroke his toes and rub his back softly.
  3. The roof of his incubator has been removed.  Because he is over 1,800 grams, he can regulate his own body temperature.  He’s also more tolerant of light and noise.  He now wears preemie size clothes!
  4. The doctors reduced his CPAP to level 7.  The next steps for him are to go to 6, 5, then either high-flow (oxygen just under his nose) or completely removed from CPAP over the course of a few weeks.  THAT MEANS THE AWFUL MASK ON HIS FACE WILL BE COMPLETELY REMOVED. There will be a celebration once it happens!

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    We can’t wait to get rid of the entire hat, mask and tubes.
  5. His feeds have increased with his body weight.  He’s at 25 mLs every two hours.  Aiden has always struggled with gas from the CPAP mask and nutrients they added to my breast milk.  This required each feed to be given over 1 hour.  He moved to 45 minutes today and so far handled it well.  They will continue to lower it.
  6. Aiden turns 34 weeks gestation tomorrow.  He’s six weeks away from his due date!

Aiden has to master two things in order to go home:

  1. Breathe on his own.  No assisted oxygen and he cannot have any desats or bradys.
  2. Breastfeed.  This is a process for preemies.  They don’t know how to coordinate suck, swallow and breathe.  Learning to do this is compared to a marathon for adults.  Preemies are exhausted easily and fall asleep.  Our nurse today said he’d probably be a natural because of how much he loves his soother, I hope so!  I am really getting sick of pumping every 3 hours.

And today is a special day for Eric! Happy First Father’s Day.  He is such a loving dad to Aiden (from day 1) and I’m thankful Aiden has a good role model in his life.  I see great things in our future with this man.

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Happy Father’s Day!

 

Day 54 – The Infection has a Name

We have an update on Aiden’s infection.  All of the doctors were surprised nothing showed up on the blood or urinalysis culture during the first 24 hours.  Aiden had a high inflammation count, which is a good indication of infection.  But nothing was growing in his petri dishes.  Finally, yesterday afternoon, about 30 hours after his test was taken, his urine showed a Urinary Tract Infection: E. coli.

The doctor said E. coli are like little spiders that crawl through the body (um, gross) and likely made their way into the blood stream through the kidneys.  Even though the blood culture isn’t growing the bacteria, he believes it’s there because of Aiden’s high inflammation count.

They are currently testing antibiotics on the strain in his urine culture to see what kills it faster so they can tailor a better antibiotic for him.

The good news is they can treat this.  He already received antibiotics on Friday that started working against this bacteria.  E. coli is everywhere, especially with the number of dirty diapers changed in the NICU!  We are so thankful they caught it and are treating it.

Aiden is doing much better.  His skin color is pink, he is as feisty as ever (yesterday he pulled out an IV and feeding tube) and he cries loudly.  We are so glad to have our little fire back.

Day 53 – A New Infection

We had a big scare with Aiden yesterday.  He hasn’t been feeling well over the past week, with symptoms of increased desats and a low red blood cell count.  On Thursday morning the doctors wanted to give him one more day to see how he does before making any drastic changes.  If he continued to desat, they were going to make the decision Friday morning to x-ray his lungs and give him a blood transfusion.  (At 32 weeks Aiden’s bone marrow should be creating red blood cells; by giving him transfusions, we aren’t allowing his body to do the work to create it.  So they like to avoid doing this if they can.)

Eric was supposed to fly to LA on Friday afternoon and stay there for a week.  He and I went in to visit Aiden Friday morning around 9 AM before he had to leave to the airport.  When we arrived the nurse was prepping him for the blood transfusion.  We were surprised to see that because doctor rounds hadn’t started yet and they usually didn’t come to us until 11 AM.  (In the NICU, you don’t want your baby to be the first baby they visit during rounds, because that means your baby requires the most urgent care.)  As all the doctors came up to Aiden for rounds early in the morning, we realized he was first.

Aiden’s primary nurse, Amy,  gave her typical update of Aiden and his symptoms. She also shared his blood gas numbers from a test they took at 7 AM that morning: his CO2 count was very high.  The range they like to see is between 25 – 45 (and they are even okay with it being in the 50’s).  Aiden’s count was 85.  The senior doctor then looked at a newer doctor and asked him what he thought was going on.  That doctor bluntly said infection, sepsis and potentially meningitis.  I started crying.  Eric and I held on to each other.

Another doctor, Lauren, came over and talked to us separately while they the other two doctors were discussing a potential diagnosis.  She explained to us that Aiden likely has a blood infection.  They wanted to run tests, a lot of tests.  First, they would take a urinalysis to see if he has a UTI. Second, they would take a blood culture (they take his blood, put it in a petri dish and watch it for 48 hours to see what grows).  Third, they would give him a spinal tap to see if the infection had spread to his spinal fluid.  If it had, then it’s usually a good indication that it spread to his brain and would mean he had meningitis.  (I cannot even process this, I refuse to.  Call it denial, but I won’t go there.)  Fourth, they would take an x-ray of his lungs to see if they have collapsed.  They talked about putting him back on a ventilator.  Because his CO2 count was so high, they were concerned he was too tired to breathe properly.  I cried even harder at this, putting him back on a ventilator is such a step back and a painful, scary process.

Eric was obviously not going to LA.  He cancelled his flight and we prepared ourselves for the worst.

They took his blood gases again at 9:30 AM.  If his CO2 count had dropped, they would not intubate.  The results came back quickly – he was at 58.  They decided he would not need the ventilator.  We were so relieved with this piece of good news.

Lauren decided to move him back to room 41 (our first room) to give him a blanket of antibiotics and to keep a better eye on him.  We were going back to the acute care room!  We were so proud to move to an intermediate room, and now were going backwards.  As much as we understand his need for this care (and we want him to have it), it’s really hard to have this physical sign of his worsening condition.

They started with the urinalysis test, which requires a catheter (I FEEL YOUR PAIN, AIDEN).  They also put a bag over him to catch more urine for a second test.  I was present and holding his hand during these tests.  Then, they prepared for the spinal tap.  Lauren advised we not be in the room for this test, as they don’t sedate him and it can be painful.  I went to pump and Eric went to the waiting room.  When we came back they were done, they were able to gather the spinal fluid from the first poke. Now we were just waiting for the results.  Waiting for all results.

The first test that came back was the spinal tap.  They drop a piece of paper at the table next to Aiden’s incubator.  Eric and I looked at it, but had no idea how to read it.  Where was the doctor??  Finally, the senior doctor came over and looked at the results.  He said it’s “highly unlikely” he had meningitis.  His spinal tap was clear, the white blood cell count was at 5, not higher than 20, which would indicate infection.  Thank god for this, we are so thankful for this.

The second test, the urinalysis, came back clear.  The x-ray came back unremarkable.  Aiden started gaining some color in his skin and his desats reduced dramatically.  He started moving again, being more active.  The blood transfusion and antibiotics were doing their job.

As of now, we are still waiting on the blood culture.  This will help pinpoint what he has, and they can tailor his antibiotics for it.  We are hoping it’s nothing too serious and can be treated.  There is nothing to do but wait for that to happen.  We called in the middle of the night and Aiden was back to being stable.  We called this morning and Aiden is feisty again (there’s our little fire!).  We are about to go visit him now.

What an emotional roller coaster.  I never knew how much worry a parent can have for their child.  I would hear this from my parents, that you never stop worrying and caring about your children.  But I never knew what that meant until we had Aiden.  You only want him to be healthy and happy.  He’s had a rough start in his life and we’re so sorry for it.  I would give anything to have given him a healthy, normal birth.  But that just isn’t Aiden’s journey.

Okay, because I’m my mother’s daughter, and Leonard Buchholtz’s granddaughter, I have to end this positively and with laughter.

Here is a photo of my milk supply.  The Canadians won’t take my milk because I’m a U.S. citizen and they won’t cover the blood test to make sure I’m healthy to donate.  The amount of pumping (every 3 hours) is frightening.  I’m going to have to throw half of this away!

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You can’t see it, but behind these bags, I have four large containers holding about 100 snappies of milk each.

Before Aiden went downhill, he was able to have his top up because he was regulating his body temperature.  It only lasted a few hours though, as you can see from Eric’s  expression.

Here are a couple more photos of darling Aiden.

And to date, this is our very favorite photo of him (also before the infection).  I see he has my coloring and lips, but Eric’s eyes and face shape.  Sweet little boy.

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Day 48 -Eye Contact

Aiden has been steady and growing since the last post. He has been doing so well the doctors moved him to an intermediate room! He spent his first six weeks in a large room with twelve other babies that require the most urgent care.  In fact, during the first week of Aiden’s life the doctors visited him first for rounds.  Now he’s in a back room where he doesn’t require immediate attention.  He continues to have 24 hour nursing care.

He had his first eye test (I was not there, no thank you clockwork orange) and he passed the first zone test.  Oxygen is being pushed into his body and can cause the blood vessels that connect to the retina to grow incorrectly, which ultimately causes vision problems and blindness.  In case you didn’t know, Stevie Wonder is blind because he was a preemie.  For Aiden, all blood vessels in this most important zone are growing regularly. He will have two more follow-up tests.

Our son has gained a lot of weight, he is now 1,577 grams or 3.5 pounds.  His body is filling out, which makes him more tolerant of our touch.  When he’s fussing he responds well to our voices and loves to hold our fingers.

Eric and I are starting to enjoy his eye contact and touch more and more.  He will wake up occasionally and just stare into our eyes.  Sometimes he has a small frown like he’s trying to figure out who we are; he looks at every feature, our eyes, chin, hair, mouth.  Other times he just stares in our eyes with trust and openness. It brings tears to my eyes, we love him so much.

We visited the US Embassy last week to request a passport and CRBA (Consular Report of Birth).  We didn’t know what to expect – and frankly expected it to be like the DMV – but it went smoothly.  We skipped a lot of lines and had a nice waiting room because we are U.S. citizens. VIP!  They were sympathetic and understanding of our strange situation.  In order to receive a passport, the person has to be there, which Aiden obviously cannot do.  They will review his case and either approve the passport or send someone to the hospital to verify his identity.