Hanna is HOME-Now the real work begins

It is with great joy we report that Hanna came home from the NICU last Friday night, completing a long chapter of this journey. Both girls are now HOME, spending 82 and 94 days in the NICU respectively.

The girls come home

It is quickly becoming apparent with both girls home, that this journey is actually just beginning.

I liken the experience to brave climbers who attempt Mt Everest in Nepal. These teams of individuals train for months/years to physically and mentally prepare for an ascent of the worlds tallest peak. They then fly to Katmadhu, travel to Everest base camp, and begin weeks of acclimation. When ready, they then lay siege to the mountain; Slowly making their way over dangerous terrain, navigating the treacherous way between crevasse's, ice falls, avalanches, with extreme wind and cold.. A false step, a bad judgement call, or fatigue can result in death.

After weeks of shuttling loads between base camp and camp I, climbers ascend to camp 2. Then repeat to camp 3, 4, and 5.....The steps are slow; agonizingly slow. Step, breathe, step, breathe...It can an take an hour to travel just a few hundred yards. 2 steps forward, stop, catch your breath, then 2 more steps. Progress is painfully slow.

After they are thoroughly exhausted, then they wait for a break in weather and go for the summit. Successful teams leave at midnight, and summit at nearly 29,000 feet before around noon the next day.

After such a long ordeal, the successful climber stand atop the mountain and rejoice at the amazing accomplishment. Flags are waved, pictures taken, and tears shed. The views must be incredible.

But wait!? After a few short minutes at the top, the focus quickly changes. WE STILL HAVE TO GET DOWN....And getting down might just be the hardest part. Descents are commonly more dangerous than ascents, and having spent an enormous amount of energy to reach the top, many have little reserves left.

The first few days/nights with the girls home have been quite an adventure. It's becoming clear that the view from the top, represented by the girls coming home was great. But very short lived. We have now entered a much harder phase.



NANA



First off, as Nana (Ann Slocum) puts it "The NICU moved  to Boulder." Our house has been infiltrated by oxygen tanks, lines and cords, Pulse Ox machines, Feeding tubes, syringes, medications, and diapers. Both girls are on Oxygen; Hanna is on a very minimal amount, and doesn't really need it. However she was sent home with O2 as a precaution in case she aspirates some breast milk due to her feeding problems. Ashlyn has a slightly higher oxygen requirement, but is looking good.

Both girls have 3 medications they take every day, some of which are injected into Hanna's feeding tube (which runs into her nose, down her throat, and into her stomach), or ground up pills that are included into breastmilk bottles.

Both girls feed every 3-4 hours. This requires an enormous effort to make it happen. Ann & Tony are performing heroic duty on a daily basis; without their help, we would already be dead.

Mixing formula, thawing frozen breast milk, measuring bottles, adding fortifiers...Then heating bottles, and delivering. Ashlyn is a fairly good eater, however Hanna has a serious feeding problem. She will start a bottle, and then halfway through start to gag and choke and make a horrendous, blood curdling moan....Its scary. If we cant get her to take a full bottle, sh then has to be "gavaged" through her feeding tube. This requires hooking up the feeding machine, measuring the breastmilk to put in, setting a dose and flow rate and "plugging her in". Often after she is fed, she squirms about in obvious discomfort and pain. Its extremely difficult to watch.



The morning routine, Rylan participating

 Here is an excerpt from Ann Slocum's description of the situation, which is right on.....

I have found that with  two there is really no time to even write a note except a very brief one.  just returned from feeding Ashlyn.   Gaga is out to the store with rylan, sara is pumping and I expect tony went upstairs for anap. Two babies are home but there is always a constant worry about oxygen and Hanna' s feeding and severe acid reflex. Hanna has no cry which is a blessing in a way but a worry too but if she could cry then there might be alot of crying since one can see her tummy is hurting. Ashlyn is a good eater and easy baby.  She cries when she is hungry or has poopy pants and that is abut it. She had her first doctor appointment last week and was doing well.  Both girls go again this Thursday. We keep records of feelings,time,pees, poops, medicine, volume of intake and any notes.  This weekend the kids did it all at night and we took the babies at around 6 to 7 and they went back to sleep. Rylan to good at keeping his voice down and I taught him to whisper which he thought was good fun.

The girls live downstairs during the day and upstairs at night. So two swings go back and forth. One feeding apparatus, oxygen gets unhooked from the small tanks and rehooked on the big tanks in the upstairs hallway. Both girls have oxygen but Hanna really does not need it so much except for when  she is feeding and might desat.  For us that means trying not to get oxygen tubes tangled and keeping the lines onto the two sides the room.  We are gaining knowledge about that.  Ashlyn is also on a monitor so more cords too.  

Thats it for now. We can hope and pray that Hanna's feeding issues clear up over time, hopefully sooner than later, and things will get easier. Its gonna be a tough summer.