100 days have passed on our journey since the boys made their dramatic, early entry to the world. So many ups and downs that it is unbelievable to think of where we started, and where we've come. In the past 100 days here are some of the things we have experienced, in no particular order:
- Intubations, 3 each
- On CPAP, off CPAP, on CPAP, off CPAP (repeat infinitely); toss in a couple of BiPAP
- High flow prongs
- Low flow prongs
- IVs in hands, feet, heads, belly buttons; and a couple inserted from arm to heart
- Metabolic acidosis
- Blood transfusions, 3 or more each
- Two brain hemorrhages
- A lung hemorrhage
- Lung infections
- One PDA open, closed, open, closed
- One PDA open, closed, open....not quite closed
- Apneas, bradycardias, desaturations - thousands
- Water retention and swelling; diuretics to help
- A hydrocele
- Gastric reflux
- TPN feeds and breast milk feeds
- Iron, sodium, vitamin D, multivitamins, milk fortifier, Ranitidine and caffeine
- Serious drugs - Morphine, Dopamine, Fentanyl, Indomethacin, Ibuprofen, Phenobarbitol
- Antibiotics - Ampicillin, Gentamycin, Vancomycin - repeatedly
- Bili lights for phototherapy
- Head ultrasounds, numerous
- Echocardiograms, numerous
- An abdominal ultrasound
- A barium swallow
- An EEG
- Chest X-Rays, numerous
- Heel pokes, hundreds
- A spinal tap
- Nasogastric feeding tubes
- Orogastric feeding tubes
- Vitals - physically - twice a day; on the monitor - all day, every day
- Temperatures, 8 times a day
- Kangaroo care
- Resuscitations, numerous (more than we have told any of you about)
- A rainbow of skin colours - pink from being healthy, blue from not breathing, orange from bilirubin build up, grey from lack of hemoglobin
- Isolettes, cots, cribs
- 4 neonatologists, more nurses than we can count, two pediatricians, a neurologist, an opthamologist, a cardiologist, a dietician, a pharmacist, a social worker, a counsellor, an occupational therapist, several respiratory therapists, lab techs, x-ray techs, and ultrasound techs all poking, prodding, and observing - many at the same time
- Emotions - EVERY (often all at the same time)
These have been the longest 100 days Jordan and I have ever been through, with the end still unfortunately not clearly in sight. But despite all the difficulties, we have been blessed with the opportunity to cherish all the little moments that parents of healthy babies take for granted. Hearing crying and seeing a quivering lip - amazing. Being puked or peed on - an honour. Eye contact and knowing you're finally being seen - indescribable joy. All that being said, we're exhausted beyond belief and most days I don't know how we're going to keep going. Boys, I know you do things on your own schedule and not when anyone tells you you "should", but please, we're ready - really, really ready - to have you home.
Here's hoping we're not celebrating 150 days in the NICU. If so, I may be writing that post from my padded cell.
Hang in there! I know the NICU is not your wish for the boys right now, but think of it as an anniversary: the boys are 100 days closer to coming home. It's not much, but it's better than nothing! Sending you all positive vibes!
ReplyDeleteVal
thinking of you always as you continue on in your journey. you will not reach 150 days in the hospital, you will be sitting on your couch looking at all three of your beautiful children in your home and sharing a glass of wine with your husband. xoxo
ReplyDeleteand after a list like that.... thankful for the universal healthcare that gives us all, even the small, a fighting chance....
ReplyDeleteYou guys are on the home stretch - can't wait for that day's report!
tam
Lessons in strength and resilience . . . good thing humans are bendy . . . like rubber bands we snap back into shape. You've fared so much, with grace. Love, love, love. bt
ReplyDelete