Yet again I've found myself wanting to update the blog and recap the last week, but words escape me. How does one sum up the adrenaline rush of racing from Manhattan back to Kansas City because surgeons are calling us for consents over the phone?
Last Thursday we packed up the kids in less than 20min and headed home because Isaac's fever, which we originally thought was just his allergies, started rising. We made it home to Manhattan safely and quickly, but with three potty breaks for the kids and one stop to wipe down Isaac with cold wet wipes in an attempt to stave off his ever increasing fever. Alan dropped me off at the new urgent care in Manhattan while he took the kids to their pediatrician for an 8pm appointment. I was given an allergy steroid shot and an antibiotic just to be safe. The kids were given antibiotics as well. We headed to Walgreens, loaded the cart with comfort junk food since our kitchen was fairly sparse back home, and because the breaker tripped at some point last week, causing our freezer to shut off and destroy any life of delicious frozen food that had been stocked in it. We didn't get the kids to sleep till 9:30, only to have them wake up around 11pm, Isaac with a 104.6 fever, Abi with a 102 fever. At one point, I was sitting on the floor of our bedroom rubbing cold washclothes along Isaac's back and rubbing Abi's back with my other hand while Alan drew up even more Tylenol. At another point, we both were on the floor with the kids soothing them and rubbing their back and praying for them and for Chloe. There was a surreal moment where we realized every member of our family was being attacked with some health issue, be it the virus the kids had, my allergies, Alan's newly found asthma, or Chloe's conditions. It symbolized the rest of the whirlwind around us, feeling like everything was crashing. The frustration mounted.
By Friday morning, rain was pouring, the sky was gloomy, but the kids' temps were back to normal. They were feeling better, our friend was well on the way from Iowa to stay with them for the week, laundry was getting done, I'd already ran errands to get contacts ordered, last minute Target trip accomplished, and back home to finish organizing for another week away from the kids.
Then Isaac brought me my phone and said, "Mama, you have a new email because your phone just dinged like it does when you have an email! So here's your phone!" I gasped because he nearly dropped it-the lifeline to Chloe-on the floor, thanked him for my phone, set it on the table and walked away to finish making his broccoli he requested. He reminded me that I had a new message and wanted me to check it. I assured him I would in a minute, but he insisted, so I grabbed my phone and read the latest message from my friend, Elizabeth, who was up sitting with Chloe.
"Chloe coughed out her tube. They've got it under control. I will text you constantly with updates."
I panicked, in a weird, calm sort of way. I knew there was nothing I could do from 2 hours away. I waited for the next text.
"They're working on getting her re-intubated."
Still calm, surprisingly. I considering letting Alan know, who was in the shower, but figured they'd get it back in right away, no problem, no worries, why bug him while he's still showering?
"All the doctors are here. You may want to pack and get here."
Panic. Heart raced. This was real. Again. Just like the sickening adrenaline of her first episode exactly two weeks earlier. I tried frantically to think of who could watch the kids till my friend got in. I kept texting Elizabeth, who stood by her word and kept me constantly updated...
"They're still working on her...Still stable...ENT just got here...They're taking her downstairs (OR) to intubate...They will be calling you for consent. They are talking trach depending on how reintubation goes..."
My phone rang. It was Elizabeth. I answered it frantically, but it wasn't her. It was one of the nurse practitioners updating us on Chloe. It was easier to just use our friend's phone to call at that point. Another call and we gave consent for possible tracheotomy. Another call, this time anesthesia consent... We were on the road by now headed back to KC.
Text from Elizabeth, "I'm not leaving this hospital. I've got my kids covered all day. I won't leave Chloe. Just text my number to anyone that needs updated." She tried to text a picture, but it didn't come through. "She's still very stable. Sats are good. Getting her all prepped to go downstairs."
What I didn't know, because the picture never came through, was that Elizabeth was so scared we might lose Chloe that she took a picture of her holding her tiny little hand for me. I just found this out a few days ago, and my heart swelled for my friend. Not only was she willing to stay in the most difficult moment, but she was there, holding my sweet baby's tiny hand while they did chest compressions. I'll never be able to thank her enough for this. Ever. This same woman who met us in passing on our first visit to a local church has become a source of life for us, helping to get us through each day, each moment, even the scary ones. So thankful for the way God has provided. Eight short weeks ago I didn't know this woman existed. And now she was holding my daughter's hand as she took frantic breaths, praying over her, updating me, and keeping us updated.
The texts and phone consents continued. Elizabeth sat in the surgery waiting while we continued to speed to KC. Another friend of ours had their sweet little girl in surgery at the same time, so there were many gathered and many prayers going up for both girls. We arrived here shortly after she was out of surgery, having gotten the new tube back in, but they did not need to do the tracheotomy. ENT said she definitely needs a trach for a stable airway, however they wanted to do it in a more calm, non-emergency setting. We finally settled on Monday for tracheotomy. She's been sedated more this weekend so that the tube does not come out in the meantime.
Chloe was initially considered an "add-on" case, meaning surgery for the trach would be at the end of the day after all of the already scheduled surgeries. However the evening before she started desatting every 15 minutes, like clockwork, down into the 50's. Her normal range is 70-95. She was dancing and playing in the 50's, and we were all nervous. It didn't make sense as to why because she wasn't agitated, she wasn't showing signs of discomfort or external signs of anything causing a desat. Through the night at one point they ordered seizure meds for her, trying to rule out that possibility, but the desats continued, meaning it wasn't seizures.
The desat episodes continued into Monday. Every 15 minutes. Felt like timing contractions for a woman in labor, but unlike the joy of birth that comes with such labor, we were terrified of what this could mean should they start dipping lower. We were all stumped. Literally all of her doctors couldn't figure out why this would be. They ended up doing an echo on her heart, but nothing had really shown change. Finally they decided on a blood transfusion as her hemoglobin was slightly low, and because the low oxygen could also be from her pulling oxygen from her tissues since she was having trouble getting it to the rest of her body. Essentially, her blood was moving throughout her body before going to her lungs, which meant it was shunting somewhere in her heart, we just didn't know where. With all of this going on they were still going to proceed with the tracheotomy, which was making me more nervous by the moment.
Finally it was decided to start her on prostaglandins to keep her PDA duct open, and to go ahead with the blood transfusion. We needed another line for the new meds, and while they were working on getting it in, ENT arrived and started apologizing profusely for cancelling the surgery due to the fact that they did not have cardiac anesthesia available. We were actually extremely relieved. This meant that in a case of miscommunication about which anesthesiologist should be there, it actually meant that Chloe could rest, get the blood transfusion, get the new meds started, and have more time to get back on track and stop desatting before surgery.
With that said, she is doing much better today. She looks pinker, not the dusky blue she was the previous day. She only desats when the nurses are bugging her with trivial things like temps, diaper changes, etc. Rounds with doctors went well this morning. She is puffy, partly from the stress of it all, partly from the fluid pushing her versed through. Partly from the blood transfusion. Hoping this puffiness goes away soon. Her surgery is scheduled for first thing tomorrow (Wednesday) morning, most likely around 7:30am. Please pray she would continue to do well throughout today and tonight.
In the midst of our storm that is NICU life, a real storm came up last night as Alan and I were headed back to see Chloe from having gotten out for a late dinner. It was somewhat surreal as we drove up to the hospital, seeing lightning flashing everywhere and knowing a tornado had already touched down in Liberty, just miles north of the hospital. We arrived to find the nurses moving the babies from the windows, and in Chloe's case, since she's a vent baby, moving her down the hall to a completely different room. It was controlled chaos. The nurses were calm even though there was a storm brewing outside. They knew their job to keep the babies safe. They knew protocol for situations like this, and they were calm. It gave us peace.
God has been like that to us in our storm. He knows the path of the storm, even if we do not. We kind of feel like Chloe in the new room last night-the safe room, away from the windows. He's got us in His grip, even now, as this storm continues to rage around us. This storm called NICU life, where nothing is in our control and we pray every moment. There are days He feels distant, but we know He is still there. He has a plan. We're thankful Chloe has made it this far and we know He will continue to protect and carry her in the coming days and surgeries. Please pray with us that we will continue to cling to Him as our source of strength.
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