The tapestry of the life of a medically complex family

Archive for the ‘foster children’ Category

Reconstruction with Rib Graft, Part 3

The nurses at the Eye & Ear are wonderful and caring. They worked hard to support my kids through the pain and discomfort of their recovery from airway reconstruction. They checked in on us frequently and, between the two beds, they were kept busy with IV adjusting or replacement and drain/wound care.

While they were terrific and friendly, my children responded with terror at each new person who walked through the door. They crawled to the side of their cribs where I was closest and tears flowed freely. They would wriggle frantically, crying soundlessly, trying to climb through the bars into my arms. I spent nearly every waking moment seated between their cribs, holding and rocking one or both of them. For each neb or procedure, they would sit in their crib, reaching immediately back to me as soon as it was over. After 3 days of fielding questions about whether they were “always this difficult” from a support staff member at the hospital, my insurance company approved skilled visits by the nurses who worked in my home. The relief in having that second set of familiar hands, a person who could spell me so I could SHOWER or eat a meal- which I had to do outside the room or during their sleep because Trachgirl had not been cleared for anything by mouth since she failed her swallow.

Trachboy’s first bronk post-op got the “thumbs up, A-ok” seal of approval and the stent was removed. It had been a week since we had tried anything by mouth for him so I worked at re-introducing the bottle in a chair outside our room while a nurse spent time with Trachgirl, 3 days into her post-op “fast”. Trachgirl signed milk at least 100 times per day, at the arrival of each person, because her hunger now exceeded her fear. For the next 3 days she signed madly, cried silently, batted eyes at each and every arrival, BEGGING to be given something, anything by mouth. On day 5, after much urging from me, the docs finally ran a blood panel. A resident said her bloodwork was “normal” to which I replied: “Geez. That IS gonna save me some money.” implying the no food option being equal to the food option seemed a “win-win” from my perspective… <sarcasm>

The fellow came in afterward and went over the bloodwork with me, told me about a change in her IV fluid make-up to balance some things out, and talked about putting in an Nasogastric-tube (NG) to give her some nutrition. I agreed to the NG, knowing she would have to be confined to her crib during feeding and that “welcome sleeves” would need to be applied to keep her from reaching her face and pulling the tube out, but hoping that the filling of her belly would help her to heal faster and be happier. When the nurse arrived with the feeding, she put it on a bolus rate and told me not to worry about it being too fast- after all, she was starving hungry and a full belly would only “feel good”. The feed began at about 10:45p, just before shift change, and the nurse left soon thereafter to report-out to the nurse who would be taking over for the night. Trachgirl sat in the middle of her crib looking like a beaten and defeated child: surgical scars and adhesive sutures, NG tube taped in a trail across her face & head, “welcome sleeve” arm braces to prevent her from getting her hands on her new “feed equipment”. She leaned back on the inclined crib surface and at about 10 after the hour, she began to vomit.

Trachgirl immediately aspirated the formula through the cleft from the stent, at which point she crashed, sats plummeting, alarms sounding, nurse running to our room. As her sats dipped to 68%, Trachgirl blacked out into the pool of her own vomit and I continued suctioning while the nurse ran to the nurse station to make the STAT call for the doc to get to the floor. Her heart rate dipped low, the docs arrived and re-assessed her as she returned to more stability. After a consult with our ENT, the resident removed the NG, radiology came to the bedside for a lung xray, and we waited for her EKG to be completed to be sure her heart rhythm had returned to normal. Sleep that night was a non-option for me. I spent the rest of the night seated next to her crib, holding her upright in my lap.

Not Asked For

I know you did not ask for this
family arrival, challenged, challenging.
I know you could not say yes
when asked to do more than you can.
THEY did not ask for this
Abuse, separation, alienation from birth
They did not ask for their challenges
to be a burden by birth and adoption
I asked for this
to welcome, to love, to hold
I asked for this
believing in their potential-
in their right to the support needed to achieve it.
I will continue to ask
continue to work toward their successes
continue to strive for their acceptance in this world that did not ask for them.

A little surprise…

Soon after the twins’ arrival they needed airway surgery to open up the area under their vocal cords to allow air to pass over them. The amount of scar tissue that was present would prevent them from being intubated from above in the event their trach failed and their ENT thought it was important to have the surgery about a month after their transition home. I’ll write more about that (and other surgeries!) later because this post has another star: my youngest! [so far]

After the surgery, while the twins were inpatient recovering and awaiting the follow-up procedures needed before leaving for home, I had a visit from the twins social worker. We talked about how well the twins had bonded to me, how their birth family wanted to get a chance to visit in the fall, AND that their bio-mo was again in labor… My kids were 17 months old, their next older sister was 28 months old, and another child was being brought into the world through the same cocaine-tainted uterus that wreaked havoc upon my twins. Immediately I asked if the child was a girl or a boy… and followed with: “it really doesn’t matter but hopefully this is it for a while because I only have so many bedrooms.” With that comment uttered, I began the process of welcoming the fourth of my children into my home. She was a bit better off than the twins gestationally; her delivery occurred in the 33rd week of the pregnancy, making her a “giant” at 4lbs. 4oz.

The Department quoted concerns that my twins were too needy to handle another child- I sent them a slideshow of pictures of our walks along the river, trips to my sister’s, playing with toys in the playroom. The Department has RULES [unwritten] about not placing another child in a family that has children under the age of 2- they delayed matching my new homestudy until the week of my twins’ second birthday. The Department conceded that it would be best to place her with her older sister and brother. She was FINALLY going to get to come home!

My youngest was a tiny babe when I first met her, March 10, 2008, 1 year and 1 day from my meeting of the twins! She was cuddly and snuggly and 8 months old, living in a foster home near where her bio-mo was last seen. Her loving foster parents cried when I first came, knowing they would soon be sending her to live with her forever family. Although we do not speak the same language, I understood the tears were shed for the sadness they felt in knowing they would miss her, as well as to share the happiness of her finding a home where she could grow up with her older siblings. Over the next week, I visited  her daily and brought her brothers and sister into town to meet her and get Easter Bunny pictures taken.

8 days later, the social worker parked her car out front and walked my precious new bundle up the stairs. Youngest lay in my arms and the twins touched her face, held her hand, and brought toys to show her. I scheduled a family photo for that afternoon, knowing full-well I might realize quickly that there was no WAY I was ever going to get out of the house again! The pictures were a big success, all four kids looking intently at the camera, a smile from the teen at how crazy his Mom truly was.

For some time, this is the completion of our family. One day there may be others who join, related or not, but for now the craziness feels full, real, rewarding.

Twins

In early March  2006, Trachgirl & Trachboy were born at 27 weeks gestation. Trachboy was born not breathing and without a heartbeat- he was immediately moved to a resuscitation room. Both were intubated and moved to the NICU. Trachgirl weighed just over 800 grams (1pound 12 ounces) and Trachboy weighed just 1000 grams (2.2 pounds). Both children tested positive for cocaine, as did their biological mother. They were immediately taken into custody by state social services.

Over the next 3 months, Trachgirl & Trachboy struggled for their lives as they were fed through nGtubes and hooked up to monitors and ventilators. Trachboy was trached first and was able to go home to a foster home in late June 2006.

Trachgirl was not trached right away. She regularly pulled out her breathing and feeding tubes and it took a lot of supervision to keep her safe. After her time in the NICU, she was moved to a pediatric rehab hospital and her level of airway obstruction was checked. The ENT doing the procedure found an almost completely blocked airway and placed a trach for her as well. After many weeks, Trachgirl was able to go to the same foster home as Trachboy- they were together again.

Both kids were fed through NGtubes, had significant respiratory issues and had many other challenges to overcome. They were legally free soon after going to their foster home and waited in foster care to find their family. Over the first year, they suffered setbacks and hospitalizations but kept up their fight to live and thrive. I saw their cherubic faces, with trach tubes nestled under their chins, on a state photolisting page, and foolishly (& thankfully) thought “these are my children!”. I found out that the state agencies agreed with me and met them just after their first birthday.

Trachgirl was the shy one, leery of new people, remembering the hospitals, the doctors, the people who come in and out of her life; she kept a safe distance during our first meeting. She warmed up later in the visit and played peek-a-boo in my arms on their nursery floor. Trachboy, less aware of a reason to be fearful, lay in my arms, looked up into my face and cemented their places in my heart. As he nestled into me, nuzzling my arm and falling asleep, I knew there was no hope of turning away or turning back- I had found them. We had found each other.