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!