So many people have asked what our days our like, so here it is. Heather has slept fairly well throughout the night. Don’t get me wrong, Thomas & I stared at Heather for the first several nights for 30+ minutes making sure she was breathing. Any tiny peep she made, we immediately cadipoltded out of bed, (Miller too)! Heather sleeps in a bassinet in our room and we get up every four hours to switch out her feeds. Heather is currently on continuous feeds, meaning she is fed through her Gtube site continuously 24 hours a day. We ideally would like to be on consolidated feeds, but we just aren’t there medically yet. We are patiently waiting for the go from our PCP. So, we get up every four hours to switch out her feeds, & change her diaper to do our best to prevent future UTI’s.
In the morning, I get 20 hours worth of feeds pre-measured out, while I’m still pumping milk every three hours for Heather. Whew! Some people are “impressed” and can’t believe I’m still pumping, but how could I not?? It is the ONE SINGLE THING that God has given me the ability to do for my daughter. So many parental privileges have been taken out of our hands and out of our control. Nursing is the one single most thing that is only for a mother and her baby, and that is one thing I will not be able to experience with Heather. It literally tore my heart out of my chest, BUT it was God’s plan. However, God did give me the gift of producing milk abundantly for Heather, and I will do that until the day I can’t. If I can pump and produce for one year, I will pump and store for one year. If I can pump and produce for close to two, than PRAISE GOD for giving me that gift to give the best possible nutrition to my daughter!
Heather has a board of cares that me, Thomas, and our nurse diligently checks off daily. In the morning, Heather needs her Gtube site cleaned and changed out, she needs her rectum dilated with 8mm & 9mm plastic probes, has her feed bag changed out every morning, no longer receives eye drops (YAY!), has her high blood pressure medicine, her profalactic antibiotic, vitamin D, and iron, (all given “orally”, meaning through her Gtube), the normal diaper change, and cute new outfit for the day.
Throughout the day, we do a ton of physical therapy, occupational therapy, and speech therapy.
Physical Therapy includes:
- Stretches:
- Neck stretches side to side: Heather is more apt to neck stretches while sleeping
- Shoulders: stretch & depress shoulders down for 20-30 seconds
- Shoulders: See-saw shoulders
- Shoulders: Massage gently
- Scapula Stretch: Pull Heather's arm across body to stretch behind her scapula
- Wrists: stretch out Heather's ulnar deviation for 30-60 seconds
- Wrists: Use Splint
- Elbows: Stretch & extend arms straight in front of Heather & down
- Legs: Stretch & extend legs straight
- Legs/Hamstrings: Lie Heather on lap, and take her legs to 90 degrees up your torso to stretch her hamstrings
- Feet: Point feet & hold for 20-30 seconds
Exercises:
- Upper Body:
- Arm Circles: Allow Heather to hold your fingers and circle shoulder joint to pull arm/arms out in front of Heather. Circle Heather's hands up to her mouth & up to her head
- Arm Traction: Straighten Heather's arms downward creating a see-saw motion to encourage traction down
- Baby Crunches: Lie Heather flat on lap & do 10-20 baby crunches
- Baby Obliques: Roll Heather to a side on your lap with little added support. Encourage Heather to roll onto her back & to the other side
- Reflex in hands: give Heather things to grab and hold onto.
- Head Control: While sitting Heather in your lap facing you, gently press her occipital bone up to encourage her head to look down slightly.
Tummy Time:
- Tummy time on couch (flat surface)
- On boppy. Not completely flat, but helps & assists in her getting to that flat surface
- Tummy Time on YOU: Place her head on different sides while doing tummy time with her
- Tummy Time on YOU: Firm strong strokes down her spine.
- Weight Bearing Exercises:
- Press Heather's Feet into your torso to encourage her to bear weight.
- Hold Heather up-right to encourage the standing motion
- Tracking with Eyes:
- Heather mostly looks up & slowly tracks side to side. Looking down & centered is the most difficult for her to do.
- Lie Heather on play mat: turn on music, use rattle, track colorful object with eyes
- Lie Heather on Boppy: encourages her to look DOWN while being snuggled in her boppy. Have her track objects from this upright position.
- Encourage tracking with light-up objects
- Play in Mirror
Occupational Therapy:
- Pacifier: tickle the top of her mouth with the tip of the pacifier. Encourage oral stimulation for 5-10 minutes several times a shift
- Massage: Gently massage Heather's cheeks to encourage rooting & prevent oral aversions
Speech Therapy:
- Sign Language: “Mommy”, “Daddy”, "Ready", & "All Done"
- Read books to stimulate her new hearing aide!
So, that's a lot! She gets her work out, that's for sure. Heather sometimes is great, and sometimes she's not in the mood. We let Heather be our guide!
Bath-time is her FAVORITE! And the cutest ever! We learned a NICU trick to always swaddle your baby in a thin receiving blanket, then put her in the bath tub! Nurses recommend it for babies up to six months old! Try it!!
At night time, we do a repeat of her cares. We repeat her dilating, Gtube dressing, and high blood pressure medications. So, for most families, this is new foreign information. But this is our normal! It's all we know, and it's our way to spend time and love on Heather. Plus, it's all she knows as well.
We have an oxygen concentrator in our home that converts the oxygen for her to breath in through her nasal cannula. We have 25 foot oxygen cords that go through our entire house, and a back pack with her feeds inside. So, to take Heather around the house, we strap on her back pack, pick up her oxygen cords, and go. Now, it's easy for us.
On our trips to the doctors office, which have been once a week or more, we take, 2-3 portable oxygen tanks, her pulse oxygen machine, her suction machine, diaper bag, extra emergency Gtube supplies, carseat, and stroller. It's true, your purse is really the diaper bag now, which is why I'm so happy my dear friends Shellene Mchale and Ashley Dufek bought me a Coach Diaper Bag! I love my fashionista sistas!
So, there you go! A life in the day of Heather Faith! She's a rock star & a celebrity in her own life! Yeah, she's kind of amazing!
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