In the NICU I constantly felt like Evan and I kept taking two steps forward then one step back. We finally took our third step towards home about two weeks ago.
Evan was struggling to maintain the stamina to eat his full feedings. He had a great "suck" but simply lacked energy. You can't teach stamina. "You just have to be patient," I was told. But I wasn't good at being patient anymore. On Tuesday (the 23rd) we called in the big guns to help us out--Nora is her name. She's an occupational therapist. She came to Evan's bedside for his 3:00 feeding. She laid him in bed and propped his head up with blankets. She put the bottle in his mouth, rubbed his head, and stroked his jaw. For the first time ever...something clicked in Evan's body and he drank the whole bottle! Following Nora's model I fed Evan the whole bottle at his 6:00 feeding! All through the night Evan drank the entire bottle at EVERY feeding! All in a day he learned how to eat!! Now Evan had to prove he could gain weight without having any food through his tube, which would take a few days. I felt on edge at every feeding knowing the importance of Evan eating on his own. However, we had taken a step forward.
With our biggest challenge hurdled, plans started rolling to get us home.
Still on the agenda before leaving:
1. Brain and spine MRI
2. Car seat test
3. Altitude test
1. On Thursday Evan had his brain and spine MRI. Although he already had head ultrasounds done and his head circumference was measured every day, the MRI would give the doctors a better idea about how Evan is handling the extra fluid in his brain. Evan couldn't eat for 4 hours before the MRI and was sedated during. He came back looking rather pathetic. It took him a while to get back to eating again (one step back) but
the MRI results showed nothing significant and at least no urgent need
for a shunt (one step forward).
2. Next Evan had to prove he could sit in a car seat for at least an hour while keeping up his oxygen levels and breathing. We rolled up two small cloths on each side of the car seat and left a gap in the middle to keep pressure off Evan's back wound. He passed the test with flying colors! Thank goodness! (one step forward) (Otherwise we would've gone home with a car bed--NOT very convenient.)
3. Another test Evan needed to pass was an altitude test. Although Evan didn't have a problem with breathing in San Francisco (sea level) we had to test his ability to breathe in Utah (about 5000 ft. above sea level). The pulmonologist put a mask over his face and connected it to this giant oxygen tank. Slowly she lowered the level of oxygen he was given from 21% to 20...19...18...and that's when the apnea started; Evan's respirations began to slow down and have long pauses. This didn't mean we couldn't go home--it just meant we needed to go home with oxygen (one step back). Here at home Evan has a little oxygen tube until his lungs can adjust to the air here in Utah. The doctor estimated he'd need it less than 6 weeks. Don't worry--the oxygen tanks we use are MUCH smaller than this one:
With these tests complete the plans for discharge continued to progress. Evan still had to prove he was stable until the following Tuesday--our estimated date of departure. Actually--the plan was for Evan to come to the Family House with me on Monday. Then we would have a urology appointment on Tuesday and leave for home after that. At least this was the plan up until Monday. Then we took another step back.
On Monday morning I found out Evan had tested positive for some bacteria in his urine on Sunday afternoon, but afterwards tested negative at 10 pm Sunday evening. He needed to go 24 hours testing negative before he could have his Tuesday urology appointment so I wouldn't find out until 10 pm Monday night if his test was negative and if we could actually make our appointment and go home. Since he would be in the hospital on Monday now and one of the neurologists thought his head was growing too quickly, the doctors ordered another head ultrasound. This would also need to be stable in order to leave on Tuesday. On top of all this, Evan had a day of weight loss. He needed to gain weight on Monday night in order to leave on Tuesday. There were a lot of things pending now. I was glad I hadn't told people we'd be home Tuesday because now I wasn't so sure.
First was the head ultrasound. It turned out, once again, that everything was stable. His head is growing but is following the normal curve. (one step forward) Next was the big weigh-in. Evan gained weight! (another step forward) Now I had to wait for 10 pm and hope that no bacteria had grown. I went to the family house and got on Skype with Isaiah. Just after 10 I got a call from our doctor: No bacteria for 24 hours! We could go home! Not until this point was I sure enough, but now I was ready to buy a plane ticket and pack up to go! I called my in-laws to give them the final "go-ahead" to pick us up on Tuesday morning.
On Tuesday I picked up Evan's prescriptions, got our final discharge information from the nurses, signed all our paperwork, disconnected Evan's monitors, and let the hospital with my baby!
The best part of the whole day was picking up my son (JUST my son--no wires, harness, IV, tubes...) and walking around. Once we got to the airport, which is another story, I had to put the oxygen tube on his face, but for just a few hours I got to enjoy holding just my son. Some day soon Isaiah will get to enjoy that feeling too.
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| He's so tiny! And so cuddly! |
