Well, it's been quite the month. I haven't written a blog in quite some time due to our excessive & unexpected busyness. Heather has been in and out of the doctors office for three weeks due to a wet cough, crackled lungs, low grade temperature, and high respiratory rate. Since she's on oxygen, and has two holes in her heart, it's a big deal. There was an imbalance between her high blood pressure medicine, oxygen rates, and diuretic. If one is off, everything becomes extremely unbalanced. Due to her two to three appointments at her PCP's office each week, constant blood draws, and blood pressure checks, Heather's cardiologist from Children's Hospital wanted her admitted for a few days to get everything under control. So, back we went. Being at the hospital for three days is MUCH better than non stop unexpected appointments. It literally consumed up three weeks and was exhausting for all of us. Here are the updates and high lights on our sweet girl from her most recent Children's Hospital visit along with updates over the past 4-6 weeks.
Heather's VSD in her heart closed!!!! This is HUGE news! She was born with 3 holes in her heart & now she's down to two. Her ASD is still present & is extremely large, which has been one of our biggest concerns for her life. Doctors say only surgery can correct this......we say surgery and GOD!
Heather has been wearing an eye patch over her right eye to help her lazy left eye strengthen. This will help her eyes work together as a team. Every time she wears her patch, we sing, "Don't go chasin' waterfalls. Please stick to the rivers and the lakes that you're used to." from TLC.....get it? Left eye!
Heather sure takes after her Mommy with her persistence! Heather has been pulling out her nasal cannula with her right hand, left hand, both hands, using her blanket or bedding to weasel out of it, etc. She also discovered her hearing aid and how to remove that too! Stinker? Oh, yes she is!
Heather has been doing so well taking minuet amounts of breast milk by MOUTH! We don't have the doctor's confirmation yet, but we think she can swallow! That is SO HUGE! She goes in for a feeding clinic next month to be evaluated by a Speech Therapist, Dietician, Occupational Therapist, and Pediatrician to see if she can swallow, and also for these medical professionals to look at her mouth and throat anatomy.
Heather has had her 3rd & 4th UTI in the past few months. This is alarming because if she gets one more UTI before she is one year old, she will require surgery of her ureters in her kidney. Since she only has one functioning kidney, it's crucial to preserve that kidney's life & keep it free of infections. It's also a possibility that she may have a second surgery done at the same time; either a colostomy or a rectal pull through surgery. We pray for no surgeries, but it they are needed, we pray for successful surgeries.
She had an Orthopedic appointment recently for the very first time, and all bones and structural function is normal! Hallelujah!
Heather has done SO WELL with Occupational Therapy! We have a phenomenal OT that we like to call the "Baby Whisperer". She's been doing this for over 30 years and you can tell! Because of her help, patience, and persistence, Heather has been using her right hand and arm more freely, (when they were both pretty close to being immobile), now likes tummy time, has increased flexibility in her shoulders & has been able to raise her arms a little higher, has stronger oral stimulation, reaches & grips items with more strength, and so much more!
She still has zero reflex in her legs.....which we were prepared for, but are still saddened by. This means that we are going down the path of it being extremely likely that she will not be able to walk. Again, this is brutal news, but it's something we prepared for. Our girl will rise up and be the winner of every wheelchair race! :)
Heather's retching has still continued. Ugh, this has just been awful. Retching looks like dry heaving. It's as if she's trying to spit up, but she can't because of her nissen surgery. We still have no idea how to help this and most doctors say that kids with G tubes & nissens just eventually grow out of it. If that's the case, prayers that she can grow out of it SOON!
Heather's little personality has been shining through! Oh my goodness, it's so much fun! She is such a happy girl! I love her baby stages, but she's been more interactive, and that is just the best! Her eyes just radiate her emotions and love to us. It's amazing how her eyes look so deeply into our hearts and those eyes......oh, just those eyes melt our hearts. She is showing signs of coo-ing, smiling, using both her hands simultaneously, reaching out and grabbing things, and rolling to one side. She no longer needs the bath net in her tub, she kicks and kicks and kicks her legs for days, (but still no reflex of pushing), loves her hair played with (like every other girl in the world), loves her play mat, being read to, the discovery of her tongue, and having Mommy or Daddy hold her just always makes everything better. She loves us and we sure love her! She's Daddy's little "princess" and "sweet pea" and Mommy's "pretty girl" and "monkey". She even has several patterns of cries.....including the fake cry! Stinker!
Heather is coming up on EIGHT MONTHS OLD! Wow! What a journey it has been, and an amazing one at that! We love her so much and are so thankful to God for giving her to us & letting us keep her. Do you ever think about that with your children? It's a miracle all on its own for women to have the gift of pregnancy, as so many women in the world suffer from fertility issues. It's a miracle to be able to carry your child full term, as many babies are born premature. It's a miracle that your baby is born alive, as still births are something not uncommon. And last but not least, it's a MIRACLE that God has given us the gift of LIFE! LIFE? Yes, LIFE! That's what we wanted for our child! When we learned about her complications, we didn't start praying that she would be able to see, hear, learn, walk, or talk. We prayed that she would stay alive! And yes, God heard our prayers and answered them!
1 Samuel 1:27-28
"For this child I prayed, and The Lord has granted me my petition that I made to Him. Therefore I have lent her to The Lord. As long as she lives, she is lent to The Lord."
