Uncharted Lands

The news so far... Some good, some bad… All is a big challenge.

We cannot process anything in NJ hospital if we don't have a local NJ home address. The plan now is that Daddy will go to NJ this weekend, so he can get a lease on an apartment, and go next Monday to the hospital to fill out paperwork in person. It is the last chance to achieve something else than what we already know that can be done within the island. We have an acquaintance that recently had to move over there in order to give his daughter another chance for life, and he will try helping us out in the apartment hunt as he already did so two months ago. Hopefully things will turn to our side. If anyone else know of a place within Newark or have any other ideas that could help us, feel free to email us. Many minds together can think better than two weary-drained-tired minds. We are also looking up jobs in Newark, any help on that will be deeply appreciated. Obviously one of us will have to stay at home with baby, but the other needs to get a job… pronto! Fingers crossed about it all.

Deirdre is going back to her lower parameters, little by little. Yesterday night we left her at 25% oxygen. Her secretions are thicker, so we have to watch her for plugs that get stuck letting her oxygenation go down and crazy. Now they are trying vibrating her while coughing her… I am not convinced by that technique as it wears her out too fast, even if it is true that it makes more secretions come out while suctioning. I guess I am more into following steps, and the coughing then vibrate then position-drain then chest-tap makes more sense to me. Slower but more certain, doing things too fast may cut some time momentarily but may create other headaches in the long run. For now, we are just making annotations on what works and what doesn’t, speaking up when something doesn’t seem right and fine tuning the power of observation. Thickness of secretions makes it mandatory to suction her almost hourly, which we are doing ourselves while we are at PICU.

Baby liked The Little Mermaid. So now it’s a movie session of Nemo and Ariel, back to back. Deedee seems to prefer them to other cartoons… Must be the music. We always had music playing in the background, even before she was born… So music is a big part of her, bringing soothing comfort while she’s asleep or while she’s alone. The Sound of Music and Mary Poppins follow in line as her favorites. We leave Disney Lullabies or Baby Einstein instrumental music when we go away, as she used to sleep with them playing at home. It was that, Harry Potter or Lord of the Rings music scores.

Puppets made their way to a washing machine, thanks to one of the RT’s making sure that no bacteria stays around for a third round. So right now baby has only a mirror displaying her evil alter ego… Yeah, there is that baby stalker that keeps popping up in the mirror-window… And won’t stop staring! Besides the hanging mirror creeps the musical Octi, whose tentacles go wild with Caribbean music each time the social worker visits our small diva. Hopefully Deedee’s entourage will be back within two more days. The bed looks so empty and devoid of color without the plush dolls… And we know that visual stimulation is a must so our DeeVa stays interested, entertained and happy… With who else can she talk at night, gossiping about everything that goes on? We’ll get her a new friend today, so she can have some comfort in the meantime. Being without Bear-ly-Princess has been a big impact on baby’s routine!

So… Hopefully a positive resolution lies ahead. Daddy has a big mission ahead of himself… and Mommy will have to cope with: “Meanwhile, in the isle of enchantment…”. If baby keeps on getting better, then perhaps everything will fall into place soon. We need to solve the complete puzzle within the next two weeks.

Keep sending on prayers and good thoughts! Miracles happen everyday, everywhere. God is very busy, but very diligent. He never fails. And even if we drift through uncharted lands, we shall not fear for He guides us with His Light and His Love.

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