Finding Strength
- Chelee-Mark Finch
- Oct 21, 2021
- 5 min read
"He gives strength to the weary and increases the power of the weak." Isaiah 40:29
Finding strength in difficult situations is not an easy task. The premature births of Bailee and Kalli and Mark coming to terms with his alcoholism, made us find strength when we did not think we had any left in us. There were days when either Mark or I would feel like we were in a dark hole and there was no way out. When I thought I had nothing left to give, Mark would be there to build me up. When Mark was weak and he was ready to give up, I was there to tell him he had more strength within him than he could fathom. You see, strength not only comes from within, but it also comes from others building you up and it comes from God. Don't ever think that you don't have the strength to carry on. Don't lose sight of who you are and do not doubt yourself. Accept what is, such as the past, and let go of unrealistic expectations. Talk with someone and learn from them. Pray about it. "Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength."
My last blog post Kalli finally was home after 135 days in the hospital. This was not the end of her story, only a fraction of it has been told. Kalli came home on numerous medications, a tracheostomy, feeding tube, supplemental oxygen, apnea monitor, pulse oximeter, nebulizer treatments, weekly therapy sessions, many follow-up doctors visits, and 24 hour nursing care (provided by Mark, me, Deb (nurse we hired), Krista (niece who came to live with us), and Lindsey (niece who also was a nurse). Let's not forget that Justine, Bailee, and my mom and dad took CPR classes and we taught them how to suction Kalli and feed her. Keep in mind that Justine and Bailee were only 8 and 7 at the time, but we could not have done it without them.
Kalli was baptised on easter Sunday in April of 2006. We had a private baptism and we were able to host everyone at our house. Mark, Kalli, and I had to miss my sister Marci's wedding that was held at Disney World the end of April 2006. We had plane tickets and hotel rooms that had been purchased prior to Kalli's birth. She still was to sick to travel at that time. The airlines and Disney World hotel was so accommadating and we were able to be fully refunded . We did our best to maintain our "normal" life, even though it was anything but at the time. Mark and I continued to work full time and we took our share of nursing "shifts." We still tried to go camping as often as we could. We even took Kalli all the way to Chicago for my nephew John's wedding in July 2006. We had all of the equipment in tow and we followed my mom and dad. Only Mark, Kalli, and I could fit in our mini van with all of her equipment. We had a portable power charger and plenty of portable oxygen tanks. Many felt we were crazy. We wanted to try and keep truly living. We didn't want to stay at home in a protective bubble. We wanted Kalli to experience all that life had to offer despite her medical needs. In case you were wondering, yes we did ask her pediatrician prior to taking the 12 hour one way trip. The pediatrician felt we were amazing for doing it.
As the months went on, Kalli continued to slowly improve and make gains. She was still very far behind developmentally for her age, but she continued to make gains both mentally and physically. We were able to ween Kalli from her day time use of oxygen, We continued to use it at night because of her heart issue, RVH. We continued to make the 350 plus mile one-way trip to Minneapolis monthly for check-ups, even including a couple of outpatient bronchoscopies. We continued to see her pediatrician at least every other week, if not sooner. There were several times we ended up in the pediatrician's office as Kalli got sick very easily. The scariest moments were when we would suction her and we could tell she was getting sick because we would have to suction her frequently, The more we had to suction, the more it irritated her trachea. She often had very bloody secretions and this usually meant she had an infection. She was already on daily antibiotics for her kidney reflux (making her at risk for Urinary Tract Infections), so often we had to culure her secretions to make sure she was on the correct course of antibiotics. We were always able to keep her at home when she got sick. There was nothing more they could do in the hospital that we weren't able to provide for her at home.
We tried to get Kalli to tolerate and use a passy muir valve. It hooks up to the tracheostomy and allowed her to use her voice. She did not tolerate this at all and therefore, we did not push it. We knew that once her tracheostomy surgery was completed, she would need extensive speech therapy for her vocal as well as her eating by mouth. She had to see a retinal specialist several times as she did have ROP (Retinopathy of Prematurity). Thankfully it corrected itself and Kalli did not require surgery.
She remained extremely small. She was only 8 lbs. and 20 1/2 inches long at 7 months of age. She only took a handfull of "full" bottles by mouth and the rest was always given via her feeding tube. The end of May, BC/BS decided to cut the nursing hours. I believe at that time were allowed 12 hours of nursing care a day. Mark and I always helped out and this made us even more responsible for the hours of care that Kalli needed. June 9, 2006 she had a bronchosopy. Her stenosis (narrowing) of her trachea did not get worse and they were able to increase the size of her tracheostomy. The pediatric ENT in Minneapolis tentatively set a date for Kalli's major trachea surgery for September 2006. He was worried about her size. Kalli was only about the 7th or 8th child that he had performed this surgery on and she would, by far, be his smallest patient he had performed it on.
The end of June Kalli returned to Fargo for several appointments; retinal specialist, pulmonologist, and cardiologist. The main concern continued to be Kalli’s heart. Her RVH was getting worse and due to this we had to add more oxygen as her heart was working too hard. She was doing well medically, other than her heart. We were able to get her down from 7 medications to 2 medications. She was startig to gain some weight and she was around 9 lb. 11 oz. at 8 months of age. Kalli was hitting some milestones and others were so hard for her. She always had a "never give up" attitude and she always had a big grin on her face. By the end of July, she had returned for another cardiology appointment to find her RVH was slightly improved, but now she had pulmonary hypertenstion. The pressures in her heart and lungs were too high. Her small airway was causing significant heart problems and it needed to be reversed sooner rather than later. We knew that Kalli would not be able to make many more gains physically and developmentally without the tracheal surgery. We waited patiently for a date for surgery.
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