Leeland Update

Leeland is out of surgery and doing well. The next 8 hours are critical because of his history, so he will be monitored closely. Thank you for praying!

Leeland Part 5

When we left the NICU we set up camp at my mom's house.  I was put on baby duty and Kyle, with the help of family, was in charge of Hill and Baylor and getting us packed up and moved out of the rental house.  I never thought that the night we went to the emergency room with Leeland would be the last time that I stepped foot in that house, other than the nights I went there to take shower's while in the NICU.  I know that everyone thinks their husband is great, but Kyle took on more than I could ever imagine anyone doing.  He really is super dad.  We made the decision to move our stuff into a storage facility so we wouldn't feel rushed into renting or buying and have been living with my mom ever since, while we house hunt.  The first week out of the NICU, we met with the ENT who confirmed Leeland's "floppy airway."  He was diagnosed with laryngomalacia, which causes the immature larynx to collapse into the airway during inhalation.  This also causes the stridor or noisy breathing.  It was also found that Leeland has silent reflux that aggravates the larynx.  We were told that Laryngomalacia is made worse by the baby being positioned slumped over (which he was when I was burping him the first night he turned blue) and by laying flat on the back (which he was in the ER).  I asked the ENT if he thought it was the cause of his cyanotic episodes and he said yes.  I was shocked that he felt so sure, but it still didn't explain the calcification's or cataracts.  We met with the ophthalmologist again and learned more about what the cataract surgery would entail.  We were told that they would do two separate surgeries, one for each eye, to ensure that we could at least get "one eye in the bank".  During the surgery, they would completely remove the lens from the eye which takes his vision from like looking through an ice cube to like looking through the water.  They would then fit him with contacts.  The goal is for Leeland to wear contacts until he is a teenager when they will insert permanent artificial lenses.  We also met with our pediatrician, Dr. C, who is a saint!!!  He had gotten a lot of the Infectious Disease results in, including the LCMV (mouse virus) and they were all negative.  He said that it was looking like we were probably going to be left without an overall diagnosis that would make sense of all of Leeland's symptoms which is a blessing and a curse.  He has been so wonderful about making sure all of the Doctors are on the same page and keeping us in the loop on all their findings.  We feel like we are in the absolute best hands with him.  Later that same week, I got a phone call from the geneticist stating that all of Leeland's blood work for metabolic disorders came back negative. Praise the Lord.  We faced a minor set back on week two at home when we all got sick, Hill had strep and Baylor had strep and mono.  Kyle and I were sick too and Leeland caught our colds.  He was super snotty and started running a low grade fever.  He hit 100.4, and because of his age, we had to take him to the emergency room.  It is standard procedure for them to check for bacterial infections by doing a spinal tap.  Kyle and I felt very confident that he just had our virus, so we wouldn't let them do the spinal tap.  Because of that, we had to stay for 48 hours to be monitored at Children's.  Leeland's fever went away on its own and we were sent home.  That next Friday, April 5, we went in for Leeland's cataract surgery on his left eye.  Because of his history of cyanotic episodes, anesthesia was extremely scary and they had to keep him overnight for observation.  The surgery was a success and Leeland did great coming out of the anesthesia.  So, where are we now?
Genetics - Still waiting on results of Chromosomal testing.  As confident as I am that these tests will come back normal, I can't help but worry.  The Internet can be a very scary thing. 
Neuro - We have a consult on May 7 and I am extremely anxious about this one.  This is the only door that hasn't been completely shut on us as far as a diagnosis is concerned.  Developmental milestones are the best way for us to monitor if there is something going on neurologically, and so far he is doing great.  One of the neonatologists told us very bluntly "he is what he is", just as every child is.  We are struggling a little to not question every little thing that he does, especially in comparing him Hill and Baylor.  I would love prayers in this area.
Eyes-Leeland has his second cataract surgery tomorrow on his right eye.  While I am so thankful that it is finally here and that we can put it behind us, I know what to expect and I am dreading it.  I would appreciate prayers for Dr. C, for Leeland and for Kyle and I.  Watching your child go into surgery is no easy feat.  Plus, we can't feed the hungry little guy after midnight tonight!  This will be a long road of healing, eye drops, contacts, future surgeries, and the possibility of glaucoma that is lurking around. 
The other areas where we covet your prayers:
Leeland's breathing-The apnea monitor goes off ALL THE TIME.  They seem to all be false alarms, but my heart races a mile a minute every time it goes off.  We don't feel confident enough yet to not use it as a crutch, but it is driving us crazy, especially when it goes off in the middle of the night when we might actually be getting a little sleep.  Leeland will be having a sleep study in the coming weeks so  we look forward to those answers, but not spending the night in the hospital again 
House Hunting-It has not been easy to look for a house while dealing with all that we are dealing with.  We would love to buy and not rent again.  Hill starts kindergarten in the fall, so we need to find somewhere soon, so we can register her for school.  Patience.
Hill and Baylor-Sweet things, they have no clue what is going on.  They haven't seemed to skip a beat and really enjoy all the quality time they've been spending with grandparents, but I sure do miss spending time with them.  I am so incredibly thankful for their school who has allowed us to send Baylor to school every day instead of just two days a week.  He loves it and feels like such a big kid.  Hill is struggling a little bit with not being able to snuggle with Leeland.  She doesn't understand why we won't let her hold him or kiss on him.
Kyle and I-Nothing takes a toll on your marriage like a new baby, a sick child, constant hospital stays and being homeless.  We are ready to begin our new normal (whatever that is) as a family of 5.

I wanted to say again that I struggled a little with whether or not to share this on such a public format, but I truly believe that the peace I have felt through all of this is because we have been so covered in prayer.  Philippians 4:6-7 says "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." I am very specifically presenting my requests to God and by letting you all know the specifics too, our prayers will bring that much more peace.  I'll do my best to keep this blog updated, and I might even have to do a whole blog post dedicated to all of you who have shown so much love and support.  It is overwhelming!  I can't say thank you enough!

Leeland Part 4

I'll try to make this part short.  We were in the NICU for a week and a half while the doctors tried to get to the bottom of Leeland's cyanotic episodes and brain calcification's  He wasn't on any oxygen and was moved from the isolette to a regular crib on day 4 or 5.  Once he finished receiving his "just in case" antibiotics, he wasn't hooked up to anything at all.  The doctors seemed to be leaning toward a TORCH infection as the overall cause of the cyanotic episodes and brain calcification's.  One of the first tests run on Leeland was a hearing screen because hearing loss is one of the most common side effects of in utero infections, particularly cytomegolavirus (the C in TORCH).  He passed his hearing screen!  Next we had a Neuro consult.  The Neuro attending noted very subtle hypotonia (floppiness) in Leeland.  She also did an eye exam because as she said, the eyes are the window to the brain.  She found no red reflexes in Leeland's left eye and only a partial red reflex in his right eye.  This is the same as seeing red in someones eyes when you take a picture.  She said that he had a cataract in each eye that was blocking the red reflex, because of this, an ophthalmologist consult was ordered.  Congenital cataracts can also be a result of a TORCH infection. Next, we met with the Infectious Disease team who would be running all the labs for the TORCH infections.  They asked us several questions about whether or not we had been out of the country during my pregnancy or if I had been sick, run fever, been around cats, etc.  Like I said before, I had a normal pregnancy and the only place we had traveled that was out of the ordinary was to Disney World.  While Leeland was displaying some of the signs of a TORCH infection, they noted that they would have expected him to look a lot more sick and have other markers such as an enlarged liver or inability to feed.  The one question that stood out to Kyle and I was when they asked if we'd had any sort of interaction with mice.  We both immediately said no, but when Kyle took me home that night (to our rental house) he noticed that something had eaten a whole through the bread bag that was on the counter and another bag had been knocked onto the floor.  I went upstairs to shower, but immediately remembered that we'd caught a couple of mice when we first moved into the rental house.  I got on my phone and typed in "TORCH infection, cataracts, brain calcification's, MICE" and there it was LCMV (this falls under the O for Other in TORCH), a rodent born viral infection. Apparently kyle had gotten on the computer downstairs and had looked up the same thing because seconds after reading about LCMV I heard him yell "Oh S***".  We jumped into the car and drove back to UAB.  We found Dr. H, one of the resident's and told him about what we had found.  I'm not going to even get into the emotions of what we were both feeling, but the guilt factor was pretty high. What had we done? Had we unknowingly moved into this rat infested rental house and put our family at risk?  It would be days before we began getting Infections Disease results back, so again we had to wait.  Meanwhile, our lease was about to run out on the rental house so we made the decision to begin packing up and move out.  We couldn't bear the thought of going back to a house that had potentially made our baby very sick.  Over the next few days, we had the consult with the ophthalmologist, Dr. C, who confirmed the cataracts.  Unlike adult cataracts, congenital cataracts are much more serious.  Without removal within the first 6 weeks to 3 months of life, that part of the baby's brain will not develop and therefore will be blind.  He said it is a "use it or lose it" situation.  This was one of my biggest breakdowns.  I remember crying to Dr. C and telling him that this was the worst thing that could ever happen.  He calmly told me that he tells parents everyday that their children will never be able to see again and that through surgery Leeland would have the opportunity to see, and therefore this was not the worst thing that could ever happen.  Perspective.  Next was the Genetics consult.  We were asked some crazy questions! They said that upon looking at Leeland, everything seemed fine, but they would be running a metabolic and chromosomal screen on his blood work, but the results would take weeks to months.  By weeks end, some of the Infections Disease results came rolling in and they were all negative, but we still didn't know the results of everything, including the LCMV.  Everything else was a wait and see.  The scientific stuff is really easy to put into words, but I will never be able to fully explain the emotional side of the things.  I will say that I have never felt such fear and yet a sense of peace in all my life.   Kyle and I had to come to terms with discussing the hard stuff, the stuff that we didn't even want to say out loud,   and asking the doctors about it.  What does the future hold for Leeland?  Is he going to be ok?  Is he going to struggle?  Is he going to be able to see/talk/walk/understand?  As Dr. S said, none of us know what the future holds for our children, even those whom we believe to be perfectly healthy.  No one knows if there baby will meet all of the developmental milestones and had we not gone through all of this, we probably wouldn't even question it if he didn't.  We still don't know the answers to some of these questions, but what we do know, we are so comforted by.  Leeland is fearfully and wonderfully made.  He eats, sleeps, poops, and all of the normal baby stuff.  I never knew I would be so thankful for a baby to poop or cry when he's hungry or wet.  Our time in the NICU we were surrounded by so much support and love.  We had doctors who prayed with us and treated us like family. Nurses who loved on Leeland and became like best friends, friends and family who brought us food, sat by our sides, prayed with us, comforted us and cried with us.  Because of Leeland's "hypotonic episodes" he was given an apnea monitor that stays attached to him pretty much at all times.  We were discharged with no final diagnosis other than the cataracts.  We were scheduled for follow ups with the Ophthalmologist, Neuro, Genetics and ENT to discuss his floppy airway/stridor and told that we would be hearing from Infectious Disease as they got results back... 

Leeland Part 3

By the way, I am not trying to draw this story out or leave anybody hanging.  I sit down to write during naps so I just put down what I can during the time that I have.
When we arrived at the NICU, Kyle and I were sent to the waiting room so they could give Leeland another spinal tap.  It seemed like we were in there forever.  All we could do was pray.  It was almost too fresh to talk about what had happened and try to make sense of it.  It was about 4 am when they let us go back to his room.  They had gotten a successful spinal tap and were administering the full range of antibiotics through his IV, but he'd had another "blue episode".  Dr. P offered to sit down with us and discuss what he thought was going on.  He thought that Leeland was either experiencing seizures that were causing him to have the cyanotic episodes or he was dealing with some after effect of a congenital virus.  Either way, they were giving antibiotics to fight off any sort of bacterial infection and would begin seizure medication if he had another cyanotic episode.  Dr. P also mentioned that Leeland's CT scan from the ER showed several small calcification's on his brain.  My heart completely sank.  Dr. P explained that calcification's are an end result of a virus, almost like a scab, that would indicate Leeland had some sort of TORCH (this is an acronym for several congenital viruses) infection in utero.  We were left with a lot of unanswered questions and pretty much told that we would have to wait and see.  Sitting in Leeland's room watching him in the isolette was torturous.  Kyle couldn't take his eyes off the monitor and I couldn't take my eyes off Leeland.  I knew that the nurses would be alerted if his numbers started to drop, but we both felt so responsible and helpless.  That first night, the nurses arranged for us stay in one of the family rooms.  Of course we didn't sleep, but I think we both needed a break from the NICU room.  That room made both of us nervous wrecks.  The nurses said they would call us if anything happened.  Three hours went by really fast and when we hadn't heard anything we were so thankful, and ready to head back up to Leeland's room in time for the Dr.'s rounds.  I should mention that as sad as it was to see Leeland laying in the isolet, he looked great, not sick at all, just like a normal healthy baby.  When the group came by for rounds we met the attending, Dr. C, for the first time.  He said that test results came back negative for bacterial infections such as meningitis and that blood work had been sent to the Infectious Disease lab to test for TORCH viruses, but because it was the weekend, we wouldn't start getting results back til late Monday afternoon.  Dr. C examined Leeland and noted positional stridor (noisy/labored breathing) when Leeland was put in a sitting position.  We still didn't have any answers.  The good thing was he hadn't had anymore cyanotic episodes and I was given the go ahead to begin nursing him again...

Leeland Part 2

While Leeland and I were riding in the back of the ambulance, Kyle called my mom and told her not to ask any questions, but she needed to drive to our house ASAP to watch the kids.  The drive to Children's was the longest ride of my life.  I was required to put Leeland in his car seat and all I could do was stare at him, watching and waiting for him to turn blue again.  My eyes were playing tricks on me, especially since a baby's skin is so transparent.  When we got to the hospital, we were rushed to the room and had been in there for about two minutes before kyle came running in.  I don't even want to think about how he got there so fast.  The resident did the workup on Leeland and then we had to wait on the attending physician. I know it takes a special person to be an ER doctor, especially in a Children's hospital, but it's almost annoying how calm they are.  Oh the joys of a teaching hospital too, because we sat there as she talked through things with the resident and asked the resident what she thought they should do.  She was perfectly nice, but when she looked at me in a suspicious way and asked if this was my first child, as if to say that I was a hysterical first time mom reading into things too much, I thought I was going to punch her in the face scream.  I didn't have to though, because about that time Leeland's Oxygen levels started dropping off and the dreaded blue came over his body.  I yelled "it's happening" and the doctors and nurses sprung into action.  Kyle and I were practically pushed against the wall as people flooded into our room, administering the oxygen mask and IV.  This part is a little bit of a blur for me and I don't exactly remember the order of things, but Leeland's numbers came back up and his color came back.  The doctors took him for a CT scan, did a spinal tap that was unsuccessful, and took a lot of blood for labs.  Somewhere in the middle of all that he had another "b;ue episode".  The whole thing was a very out of body experience.  As Kyle and I stood out in the hallway while they did the spinal tap I just remember pleading with God not to take my baby.  I am a little ashamed to admit this, and I don't know if it was just my crazy mind trying to cope with the situation or God trying to give me peace, but in between my pleading I kept trying to convince myself that we would be ok if something happened.  That we'd only known this precious little life for 3 days and we were perfectly happy before he came along, and that we weren't attached yet, and that my heart wouldn't break into a million pieces if he was taken from us.  The doctor called us back in the room and said she'd spoken with the neonatologist in the UAB NICU and he was on his way over to intubate.  They took Leeland into the operating room.  Kyle and I were in an observation room where we could see the procedure over a monitor and then they asked us to sign the consent form.  I felt like I was signing my own life away.  The neonatologist came running in and about a minute after looking at Leeland, came out to speak with us.  He said that based on what the ER doctor had told him over the phone, he thought Leeland would look a lot worse than he did and in his opinion the intubation wasn't necessary yet.  He wanted to transfer us out of the ER to the NICU where they could perform another spinal tap and have access to the equipment needed for an infant.  He and several nurses wheeled Leeland's hospital bed through the hallways of Children's over to UAB and assured us that they could intubate in the elevator if necessary.  We were so scared. 
This is a good stopping point for now.  More later.

Leeland Charles Hudlow

Here we go...I figured this would be the best platform to put my thoughts down on the whirlwind that is my life right now.  Plus, I couldn't bring myself to create a Caringbridge website.  Something about those sites seem to have a beginning date and an end date and in my heart I know that Leeland's story won't have an end date (at least not one that I will be around for).  It is going to be impossible to write down all the details especially those that I would rather forget.  I believe in the power of prayer and in miracles because my God  is the same yesterday, today and forever, so my hope is that those who read this will join us in prayer over Leeland.
Leeland was born February 20. Normal Pregnancy, normal birth (except for the extreme pain that the epidural was supposed to take care of), and normal stay in the hospital.  He weighed 6lb 3oz and was 19 inches long.  We came home (rental house) from the hospital on the 22nd.  On February 23rd our lives changed forever.  It was about 8:00 at night and the whole family was sitting in the living room.  Kyle was reading Hill and Baylor a book before bedtime and I was nursing the baby.  I was holding Leeland on my chest trying to get him to burp, and when I couldn't get a burp to come out I decided to keep nursing.  When I leaned him back in my hands to position him to nurse again, his whole body was blue/dusky, especially his head.  I jumped up and yelled "he's blue" and practically threw him at Kyle.  I yelled for him to run outside with him.  I know this thought process doesn't make any sense, but God is in the details and now I know why.  Anyway, my thinking was that when Baylor holds his breath after getting hurt or getting shots, we either blow in his face or somehow try to let cold air hit his body because it will make him take a breath.  It was really cold outside, so I guess I thought that the cold air hitting Leeland's body would make him gasp for air.  I was screaming, the kids were screaming and Kyle ran out the door with the baby.  I immediately called 911 and told them that my baby was blue.  She asked me if he was breathing.  I had no idea.  I yelled out to kyle to ask if he was breathing and he walked back inside with Leeland who was beginning to get some color back, and Kyle said that he was breathing.  Leeland seemed very out of it and was pasty white, but I'll take that over blue any day.  I ran out into the street to flag down every fire truck and ambulance in Vestavia. About 7 men came storming into the house and said they'd never been called to a scene with a baby so little.  They tried to check his heart rate but were having a hard time since they don't have the right equipment for infants.  At this time Leeland was still a little pale and they asked me if he'd choked.  I looked at my shoulder and saw a good bit of spit up.  I hadn't realized it before.  As shaken as we all still were I rationalized to myself that he must have choked and that is why he turned blue.  The responders must have thought the same thing because they said they would take us in to Children's Hospital if we wanted, but didn't feel it was necessary.  About that time Leeland's face started to turn blue around his mouth.  That was all it took for me and the responders to jump in the back of the ambulance.  I said before that God is in the details and we've since learned that when babies get cold it is very common for them to turn blue, but just around their mouths.  Thank God Kyle ran outside with the baby and he got cold because us thinking he was turning blue again was THE reason we decided to go to the emergency room...
Baby is waking up from a nap and this is going to be really long, so I'll post more later