Breathe
Real life, realness, reality, realize.
What is the meaning of real? It means truth, genuine.
The genuine, true, reality of having a baby with medical needs is HARD!
So many women comment to new moms who are expecting babies with down syndrome that it is better on the other side. When you give birth to your baby and you see them, your worries go away.
In part this is true, but for the moms who had to have babies in the nicu and go home on medical equipment and medicine, it is hard!
I made a video of what all we have to do for Evey, from her oxygen, to her medicine, to her feeding pump, to her bottles and finally to her NG Tube. It's a lot, but she is worth it. It's also overwhelming!
This past week I had to put her NG tube back in daily. The nurses at the hospital taught me that if it gets stuck and you can't thread it through, to breathe, take a break and try again. PATIENCE is what it came down to. It was all great until the 3rd day and it got stuck for the first time.
I panicked. I was trying to stay calm, have patience, breathe. But I couldn't. All I thought about was her not being able to eat because I couldn't get the NG tube down her throat and into her stomach and having to put tegaderm on her already red cheeks and her crying out in pain. I called Joshua. He was at school. He listened to me as I cried and sobbed and broke down in total defeat. He said: Mandy, you are going to have to do it, take a breath. Pause and just start again.
TAKE A BREATH. Those three words brought me back to reality. The truth! I can do this. The nurses at the hospital taught me and cheered me on when I had to drop the NG tube into Evey three times. I finally was able to get it in there and we went on with our day!
Since I've been home with Evey for the past month, we have had 9 doctor/therapy appointments and one short hospital stay. The doctor visits ranged from meeting with the heart nurses, to the NG feeding nurses, to the cardiologists and to the pediatricians. We also went to feeding therapy so that she can learn how to eat from a bottle more efficiently.
The hospital stay was for possible aspiration. That was a VERY scary moment. She had woken up on Friday, September 8th, with a goopy eye. I had a private duty nurse come in that day and she looked at it and thought it was clogged. She told me that if I felt like it was pink eye that I could call my pediatrician. As the day went on, she became more irritable, so I went with my mama instinct and called the doctor. We had an appointment for 4pm. At her 11am feeding, Evey was able to take 20 mls out of the bottle. It was her biggest intake that she had taken from the bottle in 2 days. I was so happy. I burped her and put her in the bouncer to finish her feed through the pump.
While she eats, I pump. In the middle of pumping, she starts to spit up. I stop pumping, pick her up, and put her on her side so that she doesn't choke. She ended up throwing up most of her feed but she couldn't catch her breath. I start patting her back and sitting her up. She turned dark red for a moment and then finally I heard her breathe normally. The nurse checked her pulse and oxygen saturation and she was sitting in the low 70s so she increased her oxygen to .75 liters. Evey's baseline is .5 liters.
She started getting agitated right before we had to leave for the doctor's appointment. I gave her some Tylenol thinking something was bothering her. I checked her oxygen saturation and it was 79%. I put her in the car and off we went to the doctor.
When we got to the doctor, the nurse checked her oxygen saturation and she was in the high 50s. We cranked her oxygen to 1 liter and she got up to 66% oxygen saturation. The doctor came in, mentioned that she has a son with down syndrome and then looked over Evey and said very calmly, "I think we need to send Evey to the ER since her saturation has not gotten above 70 on 1 liter. She may have a cold that is requiring her to need more oxygen." All I could say was OK. Since it was a Friday night, she ordered an ambulance to take us to Moses Cone. By the time the EMTs were there, they had to bump her up to 2.5 liters to get her in the 75-85% oxygen saturation range. When we got to Moses Cone, they did a respiratory panel, xray and an ekg. Everything came back clear so they thought it was her heart and transferred us to Duke.
My sister was able to come stay with the kids and Joshua's stepdad was able to drive Joshua to get my car and meet me over at Moses Cone. We arrived at Duke on Saturday Morning at 12:01am. They let her rest and later that morning we talked with the team. They ordered their own echo and x ray and did not find anything. After hearing the events they concluded that it was an Aspiration event and that they would watch and wait. By Sunday they were able to wean her down to .5 liers, and the doctor said as long as she keeps improving we could go home as early as Tuesday. She did so well overnight that on Monday, they discharged us.
Now, it's Sunday the 17th, and I'm just now processing about all of the events that have happened since she has been home. Our lives have changed drastically since she has been born. To say it has been all butterflies and unicorns would be a lie.
For me it has been constant worrying, debating on whether or not to go back to work, trying to find a nurse to stay with Evey since her cardiologist made it very clear sending her to childcare was not an option and balancing my time with my other three children. Oh and also trying to stay away from the Beginning of School Cold.
As I sit here, typing, I'm realizing that pausing and breathing is what I need to do more often. Even if I feel alone in this journey of caring and raising a child with complex medical needs, I need to lean more on God. Pray in those hard times when I'm stuck by myself and she has pulled her cannula or NG tube out for the billionth time. Pray when mornings start getting hectic when I start back to work this week. Pray minute by minute for Evey and her private duty nurse that will be staying with her while I work.
"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Philippians 4:4-7 NIV
Today I will rejoice that her thrush is almost gone and she is taking more from the bottle. I will rejoice that she has stopped spitting up and avoiding aspiration since the team has changed her from getting fortified milk to only breastmilk. I will rejoice that she is continuing to gain weight.
We have lots of upcoming appointments in the next few weeks and I'm going to pray for all the outcomes to be positive. She will be going to the gastrologist to see if getting a gtube would work for her. Both the cardiologist and feeding therapist assured me that the gtube would get her face back, I wouldn't have to worry about her pulling her NG tube out and she may end up eating more out of the bottle and not have oral aversion. The goal is for her to continue to grow for her big surgery. It's a scary thought of her having a permanent hole in her stomach and a scar after we pull the tube out. I'll be taking lots of pictures of her belly between now and then.
When they set the date for the gtube, she will be going to the cathlab to see what they need to do for her big surgery. They will be looking at her lungs to see if she will be prone to lung diseases, what is impacting her oxygen saturation and then figure out if they need to balloon her stent to help her maintain stability before her big surgery. We are all praying and hoping that she will be able to come off oxygen soon! We want to see her pretty cheeks!
The most amazing part is that she keeps fighting and working hard. Going to the hospital and getting messed with again didn't bother her. She worked hard to wean her oxygen back to her baseline so that she could come home. She loves being home!
Be like a Bee- hardworking, wise and delicate!
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