Anja's Medical History

I have never blogged extensively (or even kept much of a written log at all, really) of everything we've experienced with our daughter, Anja.  I would venture to guess that most people don't know exactly everything we've been through, only if they knew us from the beginning do they understand the truly remarkable progress (and almost miraculous, really) improvements she's made.

I've learned a tremendously lot about life, and love, and parenting, in just these few short years since God blessed us with Anja.  You never dream that you would ever be able to change an infant's trach, or learn the mechanics of a ventilator, or connect a tube to your daughter's stomach and set a pump to deliver drops of formula into her belly all night.  You can't fathom it until you do it.  And when you do it, it's not because you're special or amazing or different from your typical parent, it's just because you love your child.  That's all.  You will go to the end of the earth to give your child the best you can, and if that means you have to push harder than you ever expected, then you will.  You just will.

Our journey started the day she was born.  The hospital called me in because something was "abnormal" on my ultrasound.  Being of the natural mind-set, I am against unnecessary interventions during pregnancy and delivery, and I assumed this was some over-reaction by the doctors.  When I got to the hospital, they told me my amniotic fluid was low.  I called my doula in, and she agreed with me that the doctors were probably over-reacting.  Regardless, they kept me at the hospital all day, doing tests and ultrasounds, measuring and re-measuring, until they finally told me that the situation was very dangerous and we had to induce. They made me wait until midnight to start the pitocin.  It dripped until 7:00am, and I had zero dilation.  I was taken off the pitocin, labeled "a failed induction," and was told that I could go home after two more hours of monitoring.  Around 9:00am, just before getting ready to discharge me, the doctor checked my cervix and discovered I had dilated to a 5.  I then proceeded to undergo six hours of the most painful and hardest labor I have yet experienced... but at long last, I pushed my six pound, seven ounce baby out into the doctor's arms.  I was so happy to be done with that labor, I flopped back on the hospital bed and closed my eyes in relief.

Because I was "out of it" from my exhausting labor, it took me a moment to realize anything was wrong.  I wondered why they hadn't placed my daughter on my chest and noticed them whisking her off to the other side of the room, but wasn't processing yet what kind of danger she was actually in. My doula grabbed my hands then and told me to look her in the eye.  She was talking, but I couldn't hear her over the sense of dread that was settling into my stomach.  I looked away from her and saw them rush my baby out of the room.  There was panic and tension, everyone was running in a hundred directions.  I saw my husband and I shouted at him, "Go with her!" He disappeared out the door behind them.  "She's having some trouble breathing," they said.  "We're taking her to the NICU.  She just needs some extra help."  I settled a little then, feeling confident that she'd be back shortly.  She just needs some oxygen, I thought.  That is, until my husband walked back into the room again, looking like he was about to vomit.  I sat up anxiously, "Is she okay?" I asked.  He looked at me with his lip quivering.  He didn't say anything, but the look on his face was of pure dread.  Then he broke down into deep, gasping sobs.  I felt like a rock had slammed into my stomach in that moment.  I thought she was dead.

She wasn't, thanks be to God.  The doctor on shift had tried and tried and tried to get the breathing tube down her throat, but couldn't.  My husband couldn't bear to watch anymore, the panic was too much  They had paged another doctor, and the story I heard was that she was sleeping in her quarters across the street when she got the call.   She had run out the door in her pajamas and raced to the NICU as fast as her legs would carry her, and she successfully intubated Anja.  Had she not, we would of lost our baby.  Her name was Doctor Pole and she saved my daughter's life.

The whole thing was shocking and overwhelming and devastating, it was so unexpected that I couldn't understand it.  The next place my memory picks up is after I had already been moved from the delivery room to a recovery room.  Nothing felt okay anymore, it was like the world had stopped spinning.  I didn't want to believe that any of it could be real.  When the doctor came in to speak to us, she told us that our daughter had several problems indicative of a chromosome disorder.  She said it was most likely a trisomy index -- either 13, 18 or 21.  She told us the best we can hope for is Trisomy 21, otherwise known as Down's Syndrome.  However, there was a possibility that our daughter's condition was "not compatible with life" and that we should "be prepared for the worst."

My husband left, then.  He went home with our 2-year-old and I stayed in the hospital alone.  As soon as I had permission to go to the NICU, I walked as fast as my swollen body would let me, dragging my pitocin drip behind me.  The nurses urged me to sit in the wheelchair, but I didn't want to.  I didn't want help.  I just wanted to see my baby.  For me, it was the first time I had ever seen a tiny infant contained in an incubator.  It was the first time I had ever seen a baby hooked up to five or six machines with a dozen wires.  I'd never seen anything like it, it looked unnatural and surreal.  I had had this baby growing inside of me for 9 months, and I had so many expectations for her arrival, but every single one of them was shattered like glass, and the shards were stabbing me right in the heart.  I reached my hand inside the box and stroked her cheek.   It was more than I could bear: this tiny, helpless baby inside a plastic box, unable to be held by her mother.  Does she feel alone?  Does she wonder where I am?  Does she know how much I love her?  "I'm here," I said. "I'm here and I love you," I sobbed.  I could not stop crying.  I had to leave the room.

But sitting alone in my hospital room was no better.  It was the middle of the night and I was alone. I flipped through TV channels mindlessly.  Occasionally a nurse would come in to check my bleeding and massage my uterus.  I pumped every couple of hours and delivered the bags of milk to the NICU.  After a completely sleepless night, at 4:00AM, I went back to the NICU to see her again.  This time, the nurses were all bustling with excitement.  "Anja knocked her breathing tube out!" they said.  "And we didn't need to put it back in because she's breathing on her own!"  I rushed to the incubator and pressed my face against the plastic.  There was no tube down her throat.  Although she had a nasal cannula delivering oxygen into her nose, her chest was rising and falling without the assistance of a machine.  Praise God!  I was finally able to hold her, and holding her in my arms for the first time was an incredible source of comfort and strength.  Holding her tiny body close to mine made me feel like everything might be okay, it was the only time that I felt calm and content since she was born.  But laying her back into that box and having to leave the room brought a sense of dread again. I had moments of great strength and moments of terrible weakness.

It wasn't until 8:00PM that night that she finally latched on and I was able to breastfeed her for the first time.  She had trouble nursing, but managed to suckle for 40 minutes.  It was such a triumph.  But unfortunately, she would never be able to repeat it.  Nursing proved too difficult for her -- she was unable to manage sucking, swallowing and breathing all at the same time and a nasogastric tube had to be placed.  We encouraged her to suck on a pacifier so she wouldn't lose her ability to suck.  Now that her eyes were open and she was alert, I was falling deeply and madly in love with my daughter.  She had a head full of dark hair, and silky smooth skin.  I kept remembering how the doctors and nurses told us they thought she had trisomy 18, that her case was so typical of it, that they were sure that's what the test results would bring back.  With this in the back of my mind, I knew there was a possibility that I had only a matter of weeks with my baby before she passed on.  Never before had I so closely studied each hair on a baby's head, or nuzzled my nose against a baby's cheek wondering if it would be last time, or watched each breath wondering how many she had left.

It took 2 weeks for the test results to come back, and they positively shocked the doctors:  there was no trisomy index.  Anja did not have trisomy 13, 18, or 21.  This was absolutely wonderful news for us, but it also left us wondering what was causing all her various medical problems.  And as the days passed, it seemed like there were only more and more pieces added to the puzzle.  The doctors were bewildered and their speculation was always wrong which became increasingly aggravating.  I can't count how many times we were told "maybe this will help" and then whatever they did made no difference at all.  The first three weeks of her life were a blur of CT scans, lab work, antibiotics, increases in oxygen needs, a discovery of swollen vocal chords, the doctors assuming this meant she had reflux and so putting her on zantac, and then maybe the reflux was getting into her lungs and causing her breathing problems so lets just give her this other antibiotic just in case.  Yet nothing helped her breathing issues.  At one point, they thought maybe she had a tracheoeseophageal fistula.  "It would explain everything!" They said.  But after looking, they discovered she didn't and we went back to square one.

When she was 3 weeks old, she took a turn for the worse and went back on the ventilator.  I felt like all the "progress" she had made was for nothing.  It was scary not knowing why she needed a ventilator, and it was depressing to see my newborn daughter drugged to keep her still so she wouldn't knock the breathing tube out.

Finally, the doctors admitted there was nothing more they could do for her at this particular hospital.  They did not have the right specialists to help her.  They were sending another baby from the NICU on an emergency flight to Hawaii and they wanted Anja on that flight as well.  We had only a moment's notice to pack a few essentials and race to the air force base to catch our flight.  It didn't sink in at the time, but I was leaving behind my home and all my possessions.  I would never return to Japan again.

During the flight to Hawaii, Anja required a blood transfusion.  Once we landed, things moved quickly.  Anja had taken a serious turn for the worse and required heart surgery.  Her ductus arteriosus failed to close after birth (a congenital disorder known as patent ductus arteriosus, or simply PDA) and she required a PDA ligation to close it.  The doctors were confident that her poor weight gain and her ventilator/oxygen dependency would improve after this surgery.

The surgery went very well and within three days of the procedure, she was able to come off the ventilator again, but was still requiring oxygen through a nasal cannula.  Her chest was still pulling pretty heavily when she breathed, and she still appeared to have trouble breathing when she became upset.  She also was not swallowing, which the specialists chalked up to the inflammation from being intubated, and they expected her to begin swallowing after the swelling went down.  But for the time being she still required a feeding tube down her nose and was unable to feed from either a bottle or the breast.


After her surgery, she was examined by a pediatric orthopedic surgeon.  He ordered x-rays of her feet and decided to put her in casts to help correct her foot deformity.  The casts weren't too bad and she didn't seem to mind them much, but she required re-casting every week to move the bones slowly into the right position. Despite the fact that it was only her feet that were deformed, the casts had to come all the way up to her thighs, so both legs were entirely in casts for 6 weeks.

The orthoepedic surgeon also said he expected her to need open surgical reduction of her bilateral dislocated hips around 8-10 months of age.  This was going to be a big surgery and it hovered ominously over our heads.

Because of her recent blood transfusion, the geneticist in Hawaii was unable to draw any blood for genetic testing.  He had to wait until 3 weeks after the transfusion, but eventually that blood sample was drawn and our hunt for a diagnosis continued.

Through all of this, Anja had a tendency to keep her muscles stiff and tight.  Her little hands were balled into permanent fists and it was a struggle to get them open.  When you released them, they'd snap right back into fists.  One of her nurses was very experienced with baby massage. and so she taught me things I can do to help her muscles relax. I did it as often as I could, usually three times a day.

Shortly after her surgery and being casted, an ENT doctor came in to do a bronchoscopy.  What he discovered is that Anja's left vocal cord didn't close. The right vocal cord compensated for this and went further than it needed to, thus never fully opening.  In addition to ths paralyzed vocal chord, Anja's glottis was overgrown.  This left her with a space of about 1mm to breath and swallow through.  This doctors thought for sure this was why she was struggling to breath and why it was so difficult for her to swallow.  Since she prioritized breathing over eating, she had no interest in even trying to eat.  This also explained why her voice sounded deep and hoarse when she cried.

Within a week, Anja had surgery on her throat.  The ENT doctor shaved off the extra glottis tissue.  This is a pretty small space we're talking about, so the amount of tissue he took off was only about 1.5 milimeters.  Immediately after the surgery we noticed her cry was stronger and louder!  A week later, the doctor had to go in and take off a little more.  He didn't want to risk taking too much off the first time.  We anxiously waited for the swelling to go down to see if her breathing and feeding would improve.

At this point, the geneticist was leaning towards a diagnosis called Larsen's Syndrome.  Larsen Syndrome is a mutation in the Filamin B gene, which helps control and guide proper skeletal development.  But this test came back negative.

Anja, now 2 months old, graduated from the NICU and went into the PICU.  We got a new set of doctors with a fresh perspective.  Unfortunately, we saw an improvement in neither her breathing or her feeding.  It was time to start taking more drastic measures, because it was evident that Anja could not live in the intensive care unit for the rest of her life, and decisions had to be made.

It was an agonizing choice for me to make, but eventually my husband and I consented to a g-tube.  I remember well the feeling of hopeless loss that came over me the day she had it inserted.  I felt like we were "giving up" on her.  I felt like I was saying "You will never swallow food!"  It was only in hindsight that I was able to realize that this was the best decision we could of made for her.  But that hindsight didn't come for a very long time, because I'll be damned if that g-tube wasn't one of the peskiest thing I've ever dealt with at first.

At long last, On July 11th, 2009, at age 3 months, Anja was released from the hospital for the first time since birth.  She came "home" with supplemental oxygen and a g-tube, but she was "home."  I put home in quotation marks because we had no real residence in Hawaii.  While we were dealing with all these tests and surgeries and castings and decisions in the hospital, we were floating from hotel to hotel to hotel.  We stayed, at first, at the Air Force lodging.  Then we moved to a civilian hotel off base.  Then we moved to a hotel near Pearl Harbor.  Then we moved into the Fisher House.  I could write a whole book about all the people I met and the things I experienced living in this Fisher House, but that's another post for another time.  We found so much support and love there, and I am happy to say that I am still in contact with several of the great people I met while I was there.  Despite the difficulties and hardships I was facing, I was able to see other people facing their own scary medical battles, and it made me a better person.  That is where Anja came "home" to, the Fisher House.

When I look back on this time in my life, I don't see it as particularly bad, but I know it was so stressful when I was enduring it.  My husband flew back to Japan to pack up our house, and I was suddenly taking care of both my children alone for the first time.  I had been the mother of 2 children for a few months now, but I had never actually been alone with both of them.  Pile Anja's special needs on top of that, and I was a nervous wreck.  I was learning how the Kangaroo pump worked (to give Anja her food), learning how to care for the g-tube, learning how to juggle oxygen tanks with all the usual baby gear.  At night, it was not the sound of a crying baby that woke me, but the sound of alarming machines.  The pump jammed, or the bag of milk is empty, or her oxygen dipped too low, or her heart-rate rose too high.  It all became overwhelming when the g-tube started popping.

The first time the g-tube popped, I had no idea what to do.  I put tape over the hole and rushed to the near-by emergency room.  The E.R. didn't have any g-tubes on hand, so they had to call surgery.  By the time a g-tube came down, the hole had already started closing.  I didn't know that I should have left the tube in the hole to prevent it from closing, so that was my fault.  This made it extremely painful for them to push the new g-tube in.  I cried as much as Anja did.  A few days later, it happened again.  I brought her back to the E.R. and they put a new tube in, but this time they filled it with less water.  They told me they had no idea why it was popping.  A few days later, it happened a third time.  I returned the E.R., and this time I was forced to speak with a social worker who doubted my capability of caring for a special needs child.  I felt angry and humiliated.  The fourth and fifth time, I took her straight to the surgery department because I was done with the rude E.R. doctors.  They replaced it for me, and finally consented to giving me a stack of g-tubes to take home so I could replace it myself.  After the sixth and seventh times, I demanded an x-ray.  It revealed nothing.  Finally, we found a doctor who had some common sense and solved the problem by giving her a different kind of g-tube: a BARD, which is a solid piece that can't pop.  The downside to this type of g-tube is that it is more difficult to remove, but that hardly seemed like a problem considering what I had just gone through with seven popped g-tubes in a matter of a few weeks!  At last, the popping g-tube fiasco was over.

With Anja out of the hospital and my husband officially cleared from his base in Japan, it was time for a new assignment.  We actually had the option of choosing: we could stay in Hawaii, or we could go to San Antonio, TX.  We decided to move to Texas because it was on the main land and would more easily enable family members to come visit us.  The flight to Texas required a nurse travelling with us, for Anja's safety.

On September 8th, 2009, we said goodbye to Hawaii.

When we landed in Texas, we landed ourselves in yet another hotel.  We were burnt out and just wanted a place to call our own: a home, where we could really settle and get into the new routine of life with Anja.  But no such thing happened, because within a week of arriving in Texas, Anja took another bad turn.  She declined drastically, was admitted to the PICU on September 15th, 2009, and required intubation again.

Because she was intubated, she also had to be sedated.  If she was awake, she would thrash and try to knock the tube out -- she was actually successful a couple times, too -- so it became necessary to not only sedate her, but also sometimes to give her a paralytic.  There are few things as nightmarish to a parent as standing beside your child's bedside when they are completely sedated and paralyzed.  I remember very well one night when I went to visit her.  The nurse and I were having a conversation next to the bedside.  I had just arrived and as soon as Anja heard my voice, her eyes shot open.  She started kicking her legs and trying to spit the breathing tube out. Her eyes darted up & down, her face frightened, she looked at me as if to say: What's going on? And why aren't you helping me?  The nurse upped her sedative and she slipped back to sleep.  Never, never have I felt so helpless.  As a mother, I am supposed to be the protector, and yet there was nothing I could do.

Things escalated quickly.  Here we were with a whole new medical team with yet another fresh perspective on our daughter's unusual case, and this time they were no-nonsense.  Come October, the doctors flat out told us that Anja might die if we don't have a tracheotomy done.   They couldn't tell us why she needed a trach, they couldn't even guarantee it would help.  The neurologist told us that she might have a debilitating, degenerative disease and giving her a trach would only pro-long her painful life, that it would be better to "let her go" before she has to suffer anymore.  The pulmonologist, on the other hand, said he wouldn't want to "pull the plug" on his child until they had all the answer, not just "maybes" and "what ifs"  (God bless Dr. Palmer, he ended up being such a gift to our family). We were in the most difficult place we could imagine being.  They told us the PDA ligation would help- it didn't.  They told us the glottis surgery would help- it didn't.   Now they want us to consent to this -- to this huge, huge thing -- that they can't even explain to me why she needs it or if it will help.  I prayed for guidance and light from the Holy Spirit.  I prayed that whatever decision we made would be in alignment with God's will.  I remembered Christ's agony in the garden and felt for the first time that I might actually understand what he felt when he said "Father, if You are willing, remove this cup from Me; yet not My will, but Yours be done."

Often, I found myself not wanting to be around people, not even my own family.  I would retreat to Anja's hospital room with a stack of books.  Even though Anja was knocked out from the sedative, I would have the night nurse go through the gymnastics of nestling her into my arms and I would read for hours and hours.  Sometimes I'd read out loud to my sleeping baby until my mouth was dry with text and I felt nauseated from absorbing too many words.  Then I would close the book and peer down at this heavy baby asleep in my arms, perhaps immersed in a dream.  I'd glide my finger softly across her skin, as pure and pale as snow.  She was tangled in tubes and wires and smelled indefinitely of hand sanitizer.  I could not bury my nose deep enough into her neck or plant enough kisses on her forehead.  I was overwhelmed with the desire to try with all my heart and mind to give her as much as she had given me.  I knew we had to do everything we could to save our child's life.  I knew that was our only option.  We had to do the trach.

Just like with the g-tube, this was scary and unknown and a huge adjustment, but it was also the best decision we could make for her.  We had to learn how to suction the trach, and how to change the trach when it was dirty.  We also had to learn how to operate the home ventilator, what her settings were and what they meant.  On December 2nd, 2009, she came home from the hospital -- to a real home, because we finally had a house by then.  She came home on the ventilator, with the g-tube.  She could not breath or eat on her own and required constant supervision.   We also had to start patching her left eye because her right eye was lazy.

Although Anja was home, she still had numerous doctor's appointments and follow ups with her many specialists.  The only time Anja got out of the house at first was to go see a doctor.  And with the ventilator, the oxygen tanks, the pulse oximeter, the suction machine, and the usual baby needs, it was quite a production getting her out of the house.  On December 14th, just 12 days after she had been released, we had an appointment.  The photo below is exactly what we looked like that day we walked into the clinic.

I handed the woman at the front desk my I.D. to check in, and Anja's vent began to alarm.  It alarms for many reasons and is not necessarily a cause for concern, but then her pulse ox also started alarming, which means that her oxygen saturation was dropping to a dangerous level.  I glanced down and her saturation was dropping rapidly. 80. 70. 60. I popped the circuit off of her trach and started bagging her. After 4 or 5 breaths, she was still hovering at 55. I yelled at the lady at the desk to get a nurse. Everyone in the waiting room is gasping and someone screams, "She's turning blue!" The nurses rushed in and pushed the stroller into a side room. Next thing I know, there are 10 people (various doctors and nurses) crammed in this room and they are suctioning and bagging and asking me "What's wrong with your vent? Is it even on?" because there was no air blowing through the circuit.  Well, whoops.  The circuit had come disconnected from the vent (so it was essentially like the vent was turned off).  I felt like such a dummy.  Once the circuit was reconnected the vent, her stats returned to normal.  Unfortunately, though, she ended up being re-admitted to the PICU for a couple more weeks for a suspected respiratory infection.

During this time, their next lead for a diagnosis was Hurler's Syndrome.  The doctors were confident about this suspicion because they found an indicator of it in her urine.  This syndrome has a poor prognosis -- it meant our daughter would likely not live beyond her 2nd birthday -- and we were scared.  However, once again, the skin biopsy results came back negative.  No Hurler's Syndrome.  Also, early on she was diagnosed with "horseshoe kidney" -- the hospital in Japan made the diagnosis and the hospital in Hawaii confirmed it.  However, we were now being told otherwise.  Her kidneys have a slightly abnormal shape to them, but the imaging studies in Texas have shown that they are not actually joined together but are separate from one another.

In February, after over a month of taking care of our daughter all by ourselves, we were anxious to get round-the-clock nursing care started in our home.  We qualified for this because Anja's needs required constant supervision, but the paperwork was slow.  I have no idea why, but one way to speed up the process is to have an over-night stay at a nursing home.  In February, my husband's father drove Anja and I down to a city called Copperas Cove.  Anja and I spent a restless night together in a run down little nursing home.  By March, we finally had nurses in our house.

In addition to getting used to having our daughter home with all her special needs, and adjusting to having nurses in our home 24/7 helping us out Anja, we also had to get used to Anja's monthly supply deliveries.  Instead of your typical cute little nursery, Anja's room was shelves and shelves of medical supplies.

But having Anja home, having nurses to help, made life so much easier for us.  For the first time since Anja was born a year ago, I was able to go out into the world and actually make some friends.  Despite the fact that we had no diagnosis, and the doctors had no idea if Anja was going to get better or worse with age, Anja managed to be a happy baby who thrived immensely.  She had a strong attachment to her daddy, bonded with her brother, and came to trust and love her nurses as though they were family.

We have scary moments intertwined in our lives.  Like the day we were at the hospital for yet another appointment and the ventilator malfunctioned, or the day we were at the park when her trach plugged, and the time her saturation dropped to 55 and we had to call 911 because our ambu bag was doing nothing.  Each scary event is a test of our courage, and I am still amazed at how a parent will react however they need to in order to save their child's life.  My husband has continually impressed and amazed me with how he keeps a cool head during moments of panic.

By 15 months, Anja was barely holding her head up on her own and was not able to sit up.  She received both physical and occupational therapy regularly,  in addition to speech therapy since she still could not eat solid food and did not vocalize much. With the help of therapists and dedicated nurses, Anja was able to make slow and steady progress.  Her milestones were hit much later than with your "average" baby, but my heart still rejoiced every time.  For every heartache we endured in the past, we were now able to experience joy as she progressed forward. 

Eventually, Anja was able to eat pureed food.  We were able to stop using the g-tube and instead I found myself cooking and pureeing all of her meals.  This was such an exciting and joyous time for our family as Anja was able to actually taste the food she was eating for the first time, and her body was able to receive nutrition from actual FOOD instead of supplemental formulas.

There was a specific therapy that helped her to finally get over her dysphagia (difficulty swallowing).  It is called vital stim therapy.  Two to three days a week, we'd take her to a clinic and a speech therapist would stick little electrodes on the exterior of her neck, right over where the muscles used for swallowing are.  For about 30 minutes, Anja would be given sips of water and bites of food while these muscles were electrically stimulated.  We feel this therapy was extremely beneficial in strengthening and restoring her ability to swallow.

 All of the year 2010 was marked with progress for Anja -- she was surrounded with love, support and encouragement of her family, nurses and therapists, and she thrived significantly.  She developed a way to be mobile despite not being able to crawl or walk: by scooting on her bottom.

Off the ventilator

Off the ventilator and no oxygen!

In July 2011, Anja was hospitalized for the first time in a long time.  She had a bowel obstruction and ended up requiring surgery and the removal of a portion of her intestines.

I remember this hospitalization felt like a slap in the face.  In the context of this post, it probably looks like one hospitalization after many others, but at the time it had been so long since she'd be in the hospital that I'd kind of forgotten what it felt like.  I was confronted head on with the actuality that my child is not like every other child and crappy things happen to her more often than they do to other children.   It was a sad and painful reminder of just how much we'd been through and how much I've watched her endure.  I can't even believe all the millions of things my daughter has had inserted into her body, the pricks and stabs and jabs and tests, x-rays, MRIs, procedures, and surgeries.  To make things worse, it was my husband who spent a majority of the time in the hospital with her while I stayed home with my older son and 3-month-old baby, and people started gossiping about how I wasn't at the hospital with my daughter enough.  That really hurt.

That same summer, after she was discharged and home again, Anja started learning how to walk with her brand new walker.  This was such a beautiful thing to witness.  She was given AFO braces with SMO inserts to help her stability. 

Only a few months later, at the end of October, we recognized the early signs of another bowel obstruction and didn't hesitate to take her in.  This time, scar tissue from her previous bowel surgery grew and wrapped around her small bowel several times. They did an emergency surgery immediately because things were starting to effect her pancreas, which could of led to shock and seizures if not treated. The good news is that we caught this before blood supply was lost to the obstructed portion of the bowel, so no bowel had to be removed. They simply cleared the scar tissue, but this meant that Anja had to spend Halloween in the hospital.

It was around this time that something very upsetting happened.  What we were told, and what we had always planned on, was that Anja would be having a major surgery on her hips at some point in her life, before her second birthday.  They can only do one side at a time, so there was going to be two surgeries over the course of a month with a six month expected recovery time.  The ortho surgeon in Texas who picked up her case always told us that he wanted to wait until Anja was bigger to do the surgery.   We actually had the surgery scheduled twice in the past, and both times he called THE DAY BEFORE the surgery to tell us he was cancelling the operation.  His reasoning was always "wait until she's older."  When we scheduled it a third time, he deployed for the summer.  I was getting pretty annoyed, so I requested a consult with a second doctor.  We finally got in to see her at the end of September.  Her findings were that Anja's body is compensating for the dislocations and she has virtually no hip sockets at all anymore.  Anja's surgery would now create SIX SEPARATE SURGERIES over the course of an entire year.  They would have to shave off the top of each femur, create a socket, and reduce the femur into the socket.  And there is always the possibility it could pop back out, or that Anja could lose blood flow and be paralyzed.

In the end, the doctor, my husband, and I all agreed it is not in Anja's best interest to have this surgery anymore.  She will live with dislocated hips for the rest of her life.  What upset me was that I felt like the first doctor took this decision out of our hands and made it for himself.  He kept postponing the surgery over and over until it was too late.  Eventually, through a lot of prayer, I was able to come to terms with it.  Everything happens for a reason.  I can only hope and pray that this is what God intended from the beginning and is part of His plan for her.

The second doctor also found something else in Anja's latest x-rays: Scoliosis.  A 10 degree curve that is likely to get worse.  As if my little girl doesn't have enough on her plate!  My daughter will live with dislocated hips and deformed feet, and now she might even suffer more and more pain from scoliosis as her body grows.  It is easy to get discouraged from such news, but I am not.  Because when I ask God for help, He has always blessed me with a wonderful sense of calm and peace, even in scary situations.  I don't expect my daughter to be miraculously healed - but I know God is by her side, and mine, to bring comfort and joy to our hearts while we live this journey.  His protection, love, guidance and wisdom are there - and it's the only thing getting me through this.  I'm so thankful for His grace, and that He is so vastly wonderful that He can meet and overflow the deepest of my needs.

Our next adventure was getting rid of the g-tube.  By March 2012, Anja was eating solid food - fully chewing and fully swallowing without any difficulty.  Our g-tube days were over.  In September 2012, the doctor removed the tube, put a bandage over it, and said it would heal in six weeks.  If it didn't heal on its own, it would require surgical closure.  But he was so confident that it would close on its own.  Instead, I dealt with this for six agonizing weeks:

Finally, the doctor gave up on it closing on its own.  However, her skin integrity was so poor that surgical closure now had a slim chance of success.  We had to get her skin healthy again before they could do the closure.

Eventually, we got things looking MUCH better:

The operation was quick and easy and Anja officially closed the g-tube chapter of her life.


That brings us to now.  Anja is four years old and doing so wonderful.  There was a time when we thought Anja would never be able to vocalize, but she is now starting to speak sentences.  There was a time when we weren't sure if Anja would ever be able to eat solid foods, but now she never stops eating!  We worried that Anja would never kick that ventilator, but she did.  There was a time when we thought Anja would never come off the oxygen, but she did that, too.  We never dreamed she would be mobile, but with the assistance of her walker, she's now walking, and she works hard in physical therapy every week. We never knew she could be independent, but she has boldly showed us otherwise with a fierce streak of independence.

There was a lot of fear and uncertainty in the beginning (even now we still have an element of "unknown" because we still have no diagnosis), but it has been absolutely remarkable to watch her development and progression.  I feel so honored and blessed to be her mother.  I have learned so much from parenting her -- there has been much suffering, but not without great acquisition.  I have been led to a deeper compassion and richer humanity, simply because this child was brought into my life.