Parenting Through Joseph's Special Challenges

"Children remind us to treasure the smallest of gifts, even in the most difficult times." - Allen Klein

Joseph was an eventful baby that gave us plenty of medical scares right from the beginning.  Two episodes of spotting (one with contractions) during pregnancy.  The 7 week one sent me running to my OB convinced I was miscarrying.  The 20 week one sent me running to the same place, wondering if it were preterm labor (and let's face it, babies born at 20 weeks don't survive).  By the grace of God, both of these turned out to be harmless false alarms.  There was the "First Trimester Screening Scare" when we found out Joseph's chances of having Down's Syndrome were 1 in 32.  Doesn't sound too bad, but when your odds SHOULD be more like 1 in 598 (according to statistics), 1 in 32 seems huge.  I know with God's help we could parent a special needs child, but no one can ignore that thoughts of the worry that would go with that - worry about their health and their future.  A big relief when we found out through amniocentesis that he was healthy.  Then, of course, the scariest day of all - October 20th when he unexplainable went into distress and was delivered VERY quickly by emergency c-section.  I remember that horrible ultrasound as they tried to figure out what was going on with Joseph that day.  He lay inside of me totally limp.  He looked, well, not very okay.  And the face of the ultrasound tech confirmed for me that we had every reason to be scared.  God pulled through again, though, and my doctor held a screaming and pink baby up over the drape for me to see a short while later.  Another relief.  Joseph has "kept us on our toes" from the start.

We have been a little surprised by the number of issues that our sweet little guy has had to contend with.  We were told by the medical community, as is everyone, that a baby that goes to 37 weeks gestation (which is where Joseph was when born) is considered full term and will be just fine.  I'll write a separate blog post on that later, but let's just say that I have come to totally disagree with that way of thinking (as does the March of Dimes and several other groups).  I know that some babies, like Joseph, have no choice but to come early.  But to have labor induced or a c-section scheduled for before 39 weeks seems to me like pure craziness after what we've gone through with Joseph.  I also realize, though, that not all issues he has experienced can be blamed on his slightly early arrival, some are just random.  Here is a rundown of some of the things he's been up against...

When he was born, he experienced what's called Transient Tachypnea of the Newborn.  Basically, it is a respiratory problem characterized by unusually fast breath and usually caused by retained fluid in the lungs.  It is more common in c-section babies (one of the ZILLIONS of reasons I PRAY every day I never have to have any of our future children by c-section).  Babies delivered vaginally get a "squeeze" coming through the birth canal that helps rid them of this fluid.  C-section babies don't get that.  In Joseph's case, it was made worse by the fact that he inhaled meconium (the first bowel movement) during delivery.  The 3 days in the hospital after his delivery were very scary for us.  A newborn's respiratory rate should be between 40-60 breaths a minute.  Joseph's rate stayed in the 80-90s during those first few days, and at one point got into the 120s - twice of what they should be.  David didn't tell me until later, but he said that first night of Joseph's life he went down to see him in the nursery.  David looked through the nursery window and saw Joseph's bassinet, surrounded by nurses and a pediatrician.  He said all of the nurses looked back and forth between Joseph and the pediatrician, gritting their teeth and making "worried" faces as they gazed at the doctor, as if to say, "Wow, what do we do with this baby's breathing?"  They kept Joseph in the nursery the entire first day, which was necessary but also very sad since I had planned on exclusive "rooming in."  Luckily he was able to join us in my room that night.  During our whole stay, nurses would come in at least every two hours to check his breathing rate.  Each time they would measure it and grimace at the results.  We were so discouraged.  On top of that, he, like many babies born a bit too soon, had jaundice.  They never did put him under the billilights, but they did check his billirubin over and over.  Looking at pictures from those first few days, I'm shocked at how orange my sweet little boy was!  We were astounded when Joseph's respiratory and billirubin rates stabilized enough to let him come home with us the same day they discharged me.  We had been told this may not happen, so this was a huge blessing.  The early adventures did not end there, though.  Our first night home, we noticed Joseph's breathing being very labored and fast again.  We called the pediatrician's office, and they said to take him to Moses Cone's ER (Cone has the pediatric unit, so off we went across town).  You should see the attention that a less-than-6-pound newborn draws at the ER.  Nurses would come into the ER room to check his vitals and say, "Is this where the little bitty baby is?"  lol.  Fortunately he ended up being okay, and by 3am that morning we were back at home ready to brave our first night "on our own."  I do remember the ER doctor commenting on Joseph's jaundice, too.  He said, "Did they check his billirubin levels at Women's Hospital?"  I said, "Yes, we know he's jaundiced."  He replied, "I was going to say, this kid kind of glows in the dark!"  hahaha

Joseph's weight was a huge concern in the first couple weeks of his life.  Our then pediatrician kept having us come in for weight checks, and kept telling us Joseph wasn't gaining anything.  He told us I'd need to start pumping and giving Joseph bottles so we'd see how much he was getting.  I never wanted Joseph to have a bottle, so this was hard for me to hear.  He said if that failed we'd have to go to formula.  A lot of you know that I'm a huge huge huge breastfeeding advocate.  David says my passion for breastfeeding could easily make me a top contender for president of La Leche League International, lol.  I'm not what one would call a formula fan (although I do obviously recognize there are situations in which mothers cannot breastfeed and babies must have formula).  We left the appointment with me crying and David worried about both me (emotionally) and Joseph (physically).  I started pumping and giving several bottles a day.  We kept going for weight checks and he kept weighing the same, or so they said.  Then, shock of all shocks, David and I together figured out that our pediatrician and his nurses were reading the scale wrong!  After we "taught" them how to read it, they realized Joseph had been gaining weight just great all along!  I wonder how many other children they had been misweighing!  Not only had we been scared for no reason, but introducing the bottle when Joseph was so young caused horrible nipple confusion that I thought was going to ruin our breastfeeding relationship (luckily my smart little guy got the hang of it again), AND I believe it later contributed to his acid reflux (I'll get to that further down in this post).  Needless to say, we switched to a different pediatrician and practice.  They know how to read a scale, and are thrilled with Joseph's weight gain from exclusive breastfeeding.  "I don't want you to change a thing" our new pediatrician (who happens to be my OB's wife) said.

When Joseph was about 3 weeks old I noticed his eyes were excessively goopy.  I thought maybe he had a cold, but the former doctor confirmed that it was blocked tear ducts in both eyes.  Wrote a prescription for some cream, which has done nothing to clear them up.  Our new pediatrician has not written a prescription for any more, because she doesn't want his body to develop and antibiotic resistance, and she says that until the blockages themselves clear up there is no point.  The plan is to wait until he is 10 months old to see if they will clear on their own.  If they do, FABULOUS.  If not, he will have to be put under general anesthesia and have them cleared.  He already has to be put under general anesthesia within the first year of his life to fix a different issue, so I'm praying he won't have to have the tear ducts fixed, too!  His heart condition (another topic below) makes it somewhat risky for him to have an IV until we get the heart issue fixed, so I don't want him having more surgeries than absolutely necessary.  So many things to consider.  I do the hot compresses and massage recommended for the tear ducts, to no avail.  I spend half my time trying to keep the gunk washed out of his eyes and explaining to people that hold him that I promise he doesn't have a cold they can catch. 

At Joseph's two month checkup, our new and wonderful pediatrician noticed that Joseph had a faint heart murmur.  She said it was most likely innocent and "nothing," but wanted us to see a pediatric cardiologist to determine for sure.  We got an appointment with Dr. Tatum, a pediatric cardiologist from Duke Children's Hospital (of course this Tar Heel momma wanted her child to see a Chapel Hill doctor, but the Duke doctor had the first opening, haha).  He was very very nice and helpful.  Joseph had an EKG and an echocardiogram, in which they hooked him up to electrodes and took 103 pictures of his heart.  Turns out he has two congenital heart defects.  Luckily, they are minor and the worse of the two is totally fixable.  Both of them are basically "abnormal connections" in his heart that create little holes where there should not be any.  I'm not really good at explaining the specifics, so you can Google these issues if you want more info.  The lesser of the two in terms of seriousness is called a PFO (Patent Foramen Ovale), a type of Atrial Septal Defect.  It is not really clinically significant.  In fact, 1 in 4 adults have a PFO in their heart that never fixed itself, and they are just fine.  There is a good chance that David or I have one and we don't know it!  The more significant defect is called a PDA (Patent Ductus Arteriosis).  It shouldn't cause much trouble at Joseph's age, but it is something that needs to be fixed.  If NEVER fixed, it could one day lead to congestive heart failure.  Clearly, we are going to get this taken care of.  Right now, it doesn't seem to cause him any issues.  It CAN in babies his age cause poor weight gain, poor appetite, excessive sweating, and occasional cyanosis (blueness around his lips and face).  I never notice any of this.  NEVER any blueness.  No sweating (unless he's been SCREAMING from acid reflux - see below - but that's just from the screaming).  And the boy eats like it's his last meal all day long and is always gaining weight above and beyond the minimum that he should be.  So for now, clearly not causing a problem.  We go back in June to the same doctor to have it checked again.  There is a small chance it will have closed on it's own.  If not, we move to treatment.  They will first try drug treatment, which fixes the issue in 94% of cases (I'm pretty happy with those chances!!!).  Should Joseph be in the 6% where that doesn't work, his PDA is minor enough that they wouldn't have to do open heart surgery.  Instead, they would run a small device up to his heart through a vein in his leg, which would close the defect.  One way or another, this problem is going to get fixed.  In the meantime, the big thing we have to be careful about is him getting IVs.  Air bubbles in his IV could be very dangerous with this heart defect before the defect is fixed.  So, IF he has to have an IV in that time, we have to make sure the medical staff are VERY careful to make sure there are no air bubbles.

In the grand scheme of things, none of these issues mentioned above have been too terribly trying on us.  But I saved the most challenging issue for last - his acid reflux (pediatric GERD).  It has been, in short, a nightmare.  I'm not sure people realize what a challenge it is to have a child suffer with an extreme case of this issue.    I am even in an online support group for parents with babies affected.  I'm sure you are thinking, "Oh my gosh, a support group?  It's not like this is a life-threatening issue!"  True.  But oh, the challenge.  We started to suspect something was going on when Joseph was about 7 weeks old.  We had been told that most babies peak fussiness occurs around 6 weeks of age.  From there on, the typical baby gets less and less fussy.    6 weeks came, 6 weeks went.  Joseph got fussier.  Our non-fussy baby turned fussy.  Our fussy baby turned crying.  And our crying baby turned screaming.  Each day was worse than the one before in term of his overall disposition and crying behavior.  I would be nursing him and suddenly he would arch his back and shriek in pain, pulling off from feeding, and screaming.  I thought maybe something in my diet was affecting the taste of my milk, but couldn't imagine anything I was eating that would make it THAT bad.  Besides, he seemed to be in PAIN, not disgusted by what he was eating.  And when he would spit up, OH MY GOODNESS.  It seemed as though a gallon of fluid came from his stomach.  I've babysat a LOT, a LOT of small babies in my day.  I'd never seen a child produce this kind of volume.  One night he spit up on David, and it literally COVERED the front of David's shirt, from neck to waist.  And another odd thing, his spit up SMELLED.  Not a typical sort-of-icky baby spit up smell.  But a pungent, acidic, VOMIT smell.  I'll spare you more details on the smell and appearance, but let's just say thank the Lord for fabric refresher and a good washing machine.  We thought maybe he had a touch of typical colic, and honestly, I still think he does have a bit of it.  But when we explained the symptoms to our pediatrician, she instantly said it sounded like a clear case of extreme acid reflux. 

She said that her favorite medicine for infant acid reflux is Prevacid, but due to a Prevacid shortage a baby must try another medicine first before insurance will cover Prevacid.  If I'd known at that moment how bad things were GOING to get, I would have paid out of pocket for the Prevacid at that time.  But I had no idea just how terrible things would become for our little guy.  She prescribed Zantac for him to try.  I had to give it to him 3 times a day in liquid form.  It tasted horrible and every single time he took it he screamed and almost jumped out of my arms, even after I had it "flavored" by the pharmacist.  Apparently even with the grape flavoring it was still awful.  Worse, it did nothing.  Things went downhill.  I mean way, way, WAY downhill.  When I was pregnant, I always told David that Joseph "felt" like such a "happy baby" with the way he would playfully dance around inside of me.  This baby was NOT happy.  For the month he was on Zantac, it feels like everything became very surreal.  If Joseph was awake, he was crying, save for maybe 30-45 minutes a day where he may feel okay and be happy (and that was on a good day).  We knew this couldn't be a poor disposition on his part, he had to be in intense pain.  He would have a huge spit up, we'd smell the acid, and he's shriek at the top of his lungs.  One night he spit up on David and David actually felt the acid burning his SKIN!  It was that bad.  Joseph would make painful grimaces as he tasted the acid in his mouth.  When he was asleep, he was peaceful.  When he was awake, he was screaming.  Day in and day out.  When I'd have him in the car and he had an attack, it was literally a struggle to stay focused on driving with the intensity of Joseph's screams coming from the back seat.  He'd have an attack, and we'd have to leave places early - church, restaurants, friends houses.  (I know my sweet little guy could in no way help it, but I am also a BIG believer in not subjecting others who are trying to enjoy church or a nice meal to my child's noise, and so we would grab our stuff and try to rapidly get out before things got REALLY bad).  Many, many nights we couldn't even get Joseph to settle down to go to sleep until 3am because of the pain he was in.  He'd be screaming, I'd be in tears, and David would be exhausted (and knew he still had to go to work the next day).  I felt like other people didn't really understand how intense things were for us.  They would say, "Well, you know, babies do cry!"  I wanted to say, "You don't get it, TRUST ME.  You have no idea."  It is so so so horrible to watch your baby suffer in agony like that every day.  It wasn't until I talked to other moms of acid reflux babies, who confirmed what a nightmare it was, how intense it made parenting, and how their doctors told them that a severe case of infant reflux could alter the family's life for months or even a year.  I wasn't even able to get our laundry done, let alone housework, because most of my days have been spent walking around the house with him, trying to calm him down.  Our little man was in pain, and there was nothing we could do.  He was hurting.  We were sleep deprived.  The Zantac was doing nothing, other than putting another terrible taste in his mouth.  I tried every possible adjustment to MY diet, thinking something I was eating and in my milk was causing it.  No success.  The reflux remained. 

Now that we have proven that he failed a month of Zantac, we finally have our Prevacid.  It's still undetermined if our insurance will cover it, but I paid the $135 a month out of pocket in hopes of him getting some relief.  He has been on it about a week and a half now.  Until about 2 days ago, it seemed things were improving.  We actually got to see smiles from our boy, and LOTS of them!  He seemed so pain free and happy, and it was WONDERFUL!  But, for the past 48 hours, things have been rough again.  As I am writing this, I have been up with Joseph since 4:30am.  We didn't get him settled down for bed until 1am.  He spit up 3 times in 10 minutes.  And he's screamed.  Our doctor said if necessary we can come back to her and we can go to a higher dose.  We may have to go that route.  If that fails, from our understanding, babies at that point usually just have to outgrow it, and that usually takes a solid year.

I'm trying to focus on the positive.  He DOES have some happy moments now, and they are so sweet!  To see his cute little personality when he's not in discomfort.  He's such a sweet boy with precious little smiles and giggles.  Seeing his darling personality when he's not in pain makes it all the harder to witness him in agony.  But, like I said, I treasure the happy moments.  Another positive - he loves the taste of the Prevacid and sucks it down quite happily each time I give it to him.  And one of the biggest positives for me, it's really reinforced my confidence in breastfeeding being the right decision for Joseph.  Many people switch babies with acid reflux to formula, thinking that the heaviness of the formula will help keep acid down.  Through my research I confirmed what I already knew, NOTHING is better for a baby with GERD than breast milk.  For one, they don't overfeed the way that formula-fed babies sometimes do, leading to less severe attacks.  And, the biggest reason - breast milk is much more easily digested.  Formula is harder for a baby to digest, and thus stays in their stomach longer, leading to more reflux.  This was all confirmed for me by numerous sources, but I took most solace in the article I read from PAGER (the Pediatric/Adolescent Gastroesopogeal Reflux Association).  This is a non-profit organization dedicated ENTIRELY to pediatric GERD, and they concur that breastfeeding is by far the best way to help them in terms of feeding.  They say a momma should trust her instincts, and I'm so glad I've continued nursing Joseph through his acid reflux issues.  We have cut down on his number of bottles, too, because he can feed so much faster from a bottle, and that leads to more reflux.

Joseph is three months old today, and I have to say the three months have been quite a ride.  Even with all of these issues, we couldn't imagine life without our precious little guy and are just so grateful that the Lord has entrusted us to take care of him.  For our friends reading this, please pray for his reflux, we need it.  I know that through all of these little health challenges God is teaching us patience and showing us how to best meet the needs of our little boy.  We love our little man so much!!!