The tapestry of the life of a medically complex family

Archive for the ‘Preemie’ Category

Best Laid Plans

Ah, the plans we make. One of my goals for the coming year is to write here more often. I love to begin a new year with a beautiful group picture of my smiling kids. I had plans for sledding and lunches with my family & the birth family.

We all know what happens with plans, especially when kids are involved. Add complex medical needs, family gatherings, multiple kids- multiples! Well, some days it’s a wonder that ANYTHING gets done.

No group photo got done until tonight but here’s the reality of my new year’s:

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And one who worked SO hard NOT to smile…

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Category:

kids, Medicine, Nursing, Preemie, Special Needs, Trach, Twins

10 Reasons Complex Medical Needs Parents DON’T Drink Wine- But SHOULD

10. If you drink too much you could get a headache & not be able to do the next 11 neb medication series…

9. Frankly, if you TRY to drink “too much” you will only pass out as you take a sip of your second glass- exhaustion will force you into a deep slumber & you will SURELY miss dinner.

8. Your “normal” child is prone to sudden onset severe asthma & she will begin to wheeze when you begin to pour…

7. The corkscrew has been repurposed to open medication ampules and it’s too much bother to clean.

6. The oximeters have “relax-dar” – if you so much as move the milk over to consider taking out the Riesling, they will inevitably alarm repeatedly until repositioned on both twins.

5. The next neb treatment is actually due now…

4. It’s time to blend, heat, set-up & begin the overnight feed so who has time to search for a back-up corkscrew?!?

3. Have you ever been to a home with multiples and had all of the kids well at the same time??

2. BEEP!! BEEP!! ‘No food out’- what the hell??? Didn’t I just flush the GTube 5 seconds ago???

And the number 1 reason parents of complex medical needs’ kids don’t drink wine:

1. He’s making that cough again. THAT cough. That cough that indicates tonight or tomorrow will be the date of the next ER visit.

Category:

"the Ugly", Apnea, Emergency, Medicine, Preemie, Special Needs, Trach

Sandcastle by the Sea

My kids have been to the beach a few times. Sand and water are not a great accompaniment for a trach so we typically go only after it has rained- to make the sand wet and less of a flying powder. Also, my kids have put their toes in the ocean but we give it plenty of distance because we know how each wave can be bigger than the last. Today we went to the beach to remember our friends who have died- to “send off a wish” as my youngest calls it. To remember and to hope for peace for our friends’ families, while creating some peace for our own.

Today was perfect beach weather for my kids: cool enough & cloudy enough to keep crowds of people away, moist sand after a night’s rain, cool damp air to enhance the moisture of their breath into their lungs. We parked the oxygen tank, found “wishes” and threw them into the sea. The waves covered the bottom of their boots and frightened Trachboy, so we retreated to the wet sand and built my kids’ first ever sand castle. It was a wonder to them and magical for me- I’ve never felt that comfortable with all that sand and water with my trachees. We needed today’s magic to bolster us through the week ahead. Hoping the peace stays with us a while.

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Category:

Family, Memories, Preemie, Trach, Twins

A Second Helping

This weekend we got to go to pick apples again. It was a different event than the peaceful, leisurely outing of last year. Apparently, every weekend is a festival weekend at the apple farm. This weekend was also their community craft fair which made things EXTRA BUSY.

The highlights were the 3some enjoying their first “tractor ride” on a trailer pulled behind a red tractor – the DUSTIEST experience of my trached twins’ lives- & picking a GIANT bag of apples to bring home for making Gallettes and drying to eat for snacks. We will be needing to add some recipes to our repertoire in order to use all these up! Feel free to add some recipes in the comments- I can usually modify things to meet our grain-free diet. Enjoy our photos.

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Category:

Community, Family, Memories, Preemie, Special Needs, Trach, Twins

A First Glimpse Undersea

Our family is so thankful to Massachusetts Eye & Ear Infirmary- yes, for their provision of life-saving medical intervention for my twins, as well as my youngest, but also for their continued caring & support to our family beyond the walls of their hospital. When I wanted to take my kids to the New England Aquarium, cost has always been prohibitive for a single Mom headed household of 5. I asked the hospital if they ever got passes for their patients and they found a way to help my children to experience the sights & sounds of their first adventure with undersea creatures. It was a HUGE hit with my children & a gift for me that we could go. Thanks again MEEI.

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Category:

kids, Memories, Preemie, Special Needs, Trach, Twins

Photo Shoot

Even with our limited personal resources, our family has been thrilled about the opportunity to give back to the hospitals that give my kids such wonderful medical care. We went to a commercial shoot for Boston Children’s Hospital, where my youngest is featured at the close if the TV commercial, as well as appearing in the Boston Globe. It has been thrilling for her.

About 10 days ago, we were able to participate in a photo shoot on the Boston Common for Massachusetts Eye & Ear Infirmary. This hospital performed the life-saving tracheostomy placement for my older daughter & have provided skilled ongoing care & airway/ neck surgeries for each of my 3 youngest. Here is a glimpse at the fun we had that day. We can’t wait to get the pro shots!

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Category:

Community, kids, Medicine, Preemie, Special Needs, Trach, Twins