HIGHS AND LOWS

(Oct 18) My FB post: “The NICU life is like a daily roller coaster that changes its track right when you think you know what to expect. It has been nice to be closer at Ronald McDonald House when we need it, and get a hot meal every evening. I have been on a junk food diet during this crisis and began having gallbladder pain again. Now, all 3 of us have different food needs. Myself on low fat, Aaron on soft, and Hannah on her mac cheese and pizza diet (lol to our picky 4y/o). I have been able to hold Gabriella a handful of times for skin to skin. Each time is different, as sometimes she begins to destat and we have to abruptly stop. Other times she has perfect O2 and rests peacefully on me. I love the encouraging messages from friends and family, as my anxiety comes and goes. I had the privilege of experiencing my first panic attack on the way to visiting the hospital and it continued that day while I was trying to hold Gabriella. Two weeks ago, the head ultrasound did identify a grade 1 brain bleed on the left side and grade 2 on the right. The doctor explained they are not in a space that will cause severe brain swelling that damages, so there is nothing they will do at this time for it. Last week, she had multiple destat and Brady events(they say it’s normal to have more trouble breathing after the 2 week mark), so they continue to adjust vent and O2 settings including raising the caffeine amount they give. Over the weekend, they identified hemoglobin trending down, so initiated a blood transfusion. They planned to stop her food intake and give IV nutrition at the same time as the two separated transfusions. She was supposed to get 2 IV’s since the PICC line was already pulled, but she was a hard stick and they settled for 1 IV. This meant she could not receive blood and TPN at the same time. Miraculously, during the 24 hour period, she still gained weight and is now 1130grams (was 970grams at birth). We have struggled to come up with a weekly schedule, but seem to need to change things last minute every time. It is a jigsaw puzzle deciding on who is staying where for the night, who Hannah will be with, getting Hannah to preschool 3x/week and where the dogs will be on what day, also living on the pumping schedule during it all. The stressors of that make it difficult to get daily tasks done. Right when you think it should get easier and the travel days are planned, there are really hard moments like saying goodbye to Hannah with all of us crying and her begging us not to leave her. From getting through mail, forms to fill out, to forgetting to get Hannah’s physical done for school, the checklist continues to fill up. We love and appreciate the people checking in and asking us what we need. We may not be able to think of something now, but eventually as things evolve and Aaron gets back to work, we will. Today, the doctors were very positive saying that Gabriella’s labs look good, she is doing well taking 20ml of breastmilk each feed through tube feed, and they are able to lower vent settings. She will still be on c-pap until about 32 weeks, but she is already 3 weeks old tomorrow! Thanks again for all of the sweet love and support.”

The same day I posted this message, Gabriella had a bad destat event while I was holding her. The nurse took forever to come to the room and then they called for respiratory with them never showing up. She went to 28% saturation and turned purple in my arms. The nurse put her on a bigger mask and bagged her having me hold her head and mask on while she layed in my lap. I thought she was going to have to intubate. I wondered why no one else was coming In to help her. She continued to bag until she was back to 95%. It felt like a lifetime waiting for the numbers to go up. She tried to switch back to cpap and the plastic pieces fell apart with the tube falling on the floor. I get so nervous now every time I am getting ready for skin to skin and don’t want to try holding her again. Sometimes I have so much anxiety just coming back to the hospital and would rather be home. I feel guilty no matter where I am and wish I didn’t have to put Hannah through all of this with me. 

I talked to another NICU mom who said her son had been intubated for over 100 days and during the times she held him, he would destat and have to go back in the isolette. Also, I have been getting connected with NICU/preemie groups on FB and reading their stories helps a little with understanding how the ups and downs of preemie breathing development work. 

This quote resonated with me, as there have been so many negative feelings to work through while looking for some good in each day.