Yes, I know, I've been pleasantly hounded by family & friends to do an update. I'm so sorry for the delay/inconsistency with writing. There are times that I simply want to just be. And for the past 6-8 weeks, that's exactly what we've been able to do. Heather has had minimal doctor appointments through her PCP, very few unexpected appointments for weakened health, and fewer blood draws & tests over the past 1-2 months. It's been incredible! Heather is so unbelievably sensitive, but that is when we are so grateful for the many doctors that are a part of our Team Heather Faith that watch her so closely.
- Heather is starting to "outgrow" her baby baby phase. She has been sleeping a little better at night! HALLELUJAH! I know you Mommy's out there know how amazing that feeling is! She's not sleeping through the night, but we've had handfuls of 5-7 hour stretches! Sleep, oh, how I have missed you! Heather has been more alert, playful, and talkative during the day and takes fewer naps. However, she still is just like her Momma and is just grouchy as can be in the morning. (My mom always told me I would have payback one day.) :)
- Just last week, we received the MOST AMAZING NEWS! While we were all in the NICU, Heather failed three hearing exams. Her hearing is the least of her medical complications, but for some reason, Thomas & I were convinced from the beginning that her ability to hear would not be a question. We just "knew" she could hear. When Thomas had to fly to CHCO with Heather, leaving me behind, he just kept talking & singing to her. He wanted her to know she was not alone & Daddy was right beside her. When Audiology came in, many many months ago, we assumed they just needed to "check a box". Never were we concerned about Heather having a lack of hearing. The audiology team clearly knew how upsetting this would be for us, and it was. With all the other severe & complex medical issues she had, why was this more upsetting than other issues? Knowing that your baby may not ever be able to hear the sound of their Mommy or Daddy's voice literally ripped our hearts out of our chests. Especially for Thomas. BUT, this past Thursday was a GREAT DAY! Heather had a hearing test, for the first time since her hearing aid was made. Sometimes, after having severe hearing loss with no added stimulation, (AKA hearing aids), the inner ear nerve will "go to sleep", and it may never wake back up. So, we knew that was a possibility, and that her hearing aid could simply be an extra accessory/super diva earring. Heather sat on my lap facing one audiologist. The other audiologist was with Thomas outside the booth. Once sounds started being administered, Heather immediately responded! Our amazing audiologist had a praise of joy with a slight glisten in her eye, and I just lost it. Tears and tears of joy were pouring from my eyes. It was the most amazing thing.......and we DIDN'T VIDEO TAPE IT! UGH!! It's ok, that memory will play back over and over in my mind forever!
- Heather has been free of UTI's since the summer!
- We've been going for walks with Miller almost everyday! Heather loves it!
- Heather has been having much stronger head control, focusing her eyes on objects more clearly, reaching for objects, having a stronger grip, (also on my hair), happier tummy time, and improving each week with Occupational Therapy & Physical Therapy. Our goals are to get her to sit up on her own, have full head control, get her to roll from side to side, & turn her head completely from side to side
- Heather's "No" game: As Heather grows, we will learn what her cognitive & developmental abilities are. We have a wonderful additional therapy from the school of the deaf and blind that comes twice a month to our home. She's amazing and we love her. She plays lots of interesting sounds for Heather, does sign language with her, and so much more. One day, Heather was kind of "tuning out" of therapy. It was past her nap time, and when she gets tired, she starts closing her eyes and shaking her head "no". Her therapist did the sign we do for Heather, and said, "Heather's turn", and Heather continued to shake her head. Then she said, "Denise's turn", and Denise started shaking her head, "no". This continued slowly at first, but now, this is Heather's new game! It's amazing AND we truly believe she understands it. I will do the sign for Mommy, and say, "Mommy's turn", and switch to do "Heather's turn", and her eyes are so lit up and so excited to play this little game she created! Yes, our daughter is learning!!!!!
- Heather is STILL RETCHING! Ugh! It's literally the most exhausting & absolute saddest thing. BUT, we are NOT giving up. For one, we have to pray.....alot! We are also trying different medications to see which her body will respond to, and are hopeful that some solid food will help weigh down the nutrition in her stomach.
- SOLID FOOD! Yes, you heard right, SOLID FOOD! Heather is completely Gtube dependent, (a few requests were made to explain some Gtube talk). Her first and only surgery she has had so far has been Gtube & Nissen surgery. A Gtube is a feeding tube that is surgically placed inside her stomach. We have a feeding bag we pour breastmilk into, and it runs by a pump. It has a little back pack, that we can also put her portable oxygen into when we are out. She is no longer on continuous feeds, meaning she is not fed 24 hours a day. She eats in 1 hour & 15 minute increments with an hour & 45 minutes break. Our goal is to get to an hour, and maybe even 30-45 minutes, but that will take many many months. Heather's stomach is abnormally small, so it takes a long time to very SLOWLY stretch out her tummy. We've done well so far! She's a "turtle", slow and steady, but always progressing.
- Heather has been on little bits of avocado Vita-mixed with breast milk once a day. This is also an extremely slow process. Heather in on her 2nd full week of the avocado mixture, and after one more week we can try another food. Normally, it's every 2-3 days for a new food for most babies, but since this is Heather's first "taste" of solid food, and her digestive tract doesn't work as efficiently as ours does, we have to go much slower to see if she can even handle it. After one more week, we can start adding new foods in every 5-ish days. This is a dream to me! I finally get to "cook" for my little girl!
- Our little princess is 12 pounds! Again, she's a "turtle", slow & steady, but always progressing. Her length is only 22 inches, and that's remaining almost stagnant. Babies with genetic disorders grow extremely slow, and will never be the same size as other babies. Thomas just says that it's easier for him to pack her up in his pocket and take her everywhere! Silly Daddy!
- Ok, here's some of the scary stuff......we are looking at another surgery in February-ish time frame. Heather has a fistula down under. Basically her two exits are practically combined. Surgery is a necessity for two reasons: prevention of UTI's, to preserve her one good kidney, and to allow her to pass larger & more solid stool's as she grows. We thought we had two options, but now it's looking more like one. One surgery is called a rectal pull-through, and it's exactly as it sounds. It just creates more separation between the two exits. The other is colostomy........which is what my Grandma had, and what surgeons are pushing us towards for safety. This is especially hard for me, because it's our little girl being hooked up to one more thing. Right now, she's in diapers, just like every other baby. I would much rather have Heather have the colostomy because it's safer, but it's still a hard concept for me to grasp. If, more like, when, she has this surgery, it's likely that it will be a double surgery to repair her morgagni hernia. Her diaphragm is protruding into her liver, which is pushing up into her lung cavity, but praise God, that it is NOT effecting her breathing. I have no idea how! Please pray for guidance for Thomas and me, and the surgeons, for success, and acceptance. This one is hard, mostly because it's our daughter going under for another, potentially two surgeries.
- Since Heather is on a constant diuretic, (a medication to keep the fluid off her lungs), it makes her kidneys drop in sodium & chloride retention. Low sodium is a risk for seizure activity, and low chloride is a risk because it does not allow the diuretic to work efficiently, making it harder for Heather to breathe. The solution: Heather has to get blood work drawn every 2-3 weeks & is now on a sodium chloride supplement twice a day. Simple, not invasive, just an extra step.
- RETCHING! Please please please pray for the retching to subside! It's awful for all three of us!
As I back track throughout the past few months, I think this is everything from a medical standpoint. Our girl continues to amaze us everyday. She is so sweet, cuddly, and most of the time, is a very happy baby. We just love her! It's so hard to look back just nine months ago, and see it just being the two of us. It seems like another lifetime ago. Being a parent is the most wonderful and most challenging job there is. It's amazing how you automatically put everything on hold and everything aside for this tiny and precious being. She has stolen our heart time and time and time again!
"I walk slowly, but I never walk backwards."
-Abraham Lincoln
