I've had several people tell me lately that Hannah is strong and that she is a fighter. My response has been, "Well, she has no other choice!" I am becoming strong and I am certainly fighting for her. Our whole family is fighting for her.
Christmas week she fought coronavirus. New Years' Eve she had influenza A. We had our 3rd hospitalization Dec 30-Jan 2 at Primary Children's Hospital in SLC. After she had a febrile seizure the first night there (!!!), the doctors wanted to make sure she didn't have a bacterial infection, so they did a lumbar puncture and a 36 hour culture of CSF (cerebrospinal fluid). Fortunately they didn't find anything, and her urine and blood cultures were also normal. That was a big relief.
New Years Day her fever was gone and her respiration and oxygen levels improved significantly. She had a consult with a neurologist who didn't find anything alarming either (she already had a normal MRI). We were able to come home on Tuesday, the 2nd, with Hannah on oxygen (.06-just a whiff). If you have been counting, that is her 4th time coming home from the hospital. So now she has a feeding tube with backpack and a nasal cannula with oxygen tank. Certainly more baggage than baby!
Dr. Schramm told me that he "pulled back the reins" on any surgery the moment he found out she had had a seizure. I hadn't realize how truly sick she was, again thinking that the surgical myotomy was the answer to her apneic episodes, bradycardia, and cyanosis, and that was why we were going to Primary Children's. I thought that surgery was on the horizon and getting closer with each hurdle. But the last two weeks have brought us 2 illnesses and a hospitalization that had little or nothing to do with her esophageal problem. I also learned this week that the surgery might not be done until she is symptom-free for 6 weeks, ensuring no inflammation in her throat. So again, I am learning to adjust my expectations. Better yet, to have no expectations.
I never thought that a Speech Language Pathologist would have much to offer an infant that doesn't speak, but apparently there is quite a lot! A SLP stopped into our hospital room to spend some time with Hannah and teach me about how to keep her orally stimulated while she isn't able to eat by mouth. She showed me ways to interest Hannah in sucking on things, putting her hands in her mouth, tasting different textures, even smelling and licking flavored chapstick off her lips. She also told me to do skin-to-skin with her so that she is familiar with that area (Chris says this is good for husbands too). The hope is that she will someday be able to nurse again (and of course have normal eating habits later!), and that in the meantime she can maintain her interest in oral exploration, have positive, reinforcing experiences with her mouth (that doesn't include tests and tubes!), and continue to salivate with stimulation. Its really good that Hannah likes a binky. This is a whole world I never considered! The SLP pointed out to me that Hannah can manage her own saliva, otherwise she would be drooling constantly. Try going a whole minute without swallowing and you'll see.
We saw Dr. Henderson today and Hannah is 8 lbs 14 oz-past her birthweight! Hooray! She's finally got some padding now on her arms and legs, and her face is rounding out again like when she was a newborn. It took 6 weeks to get back to her birthweight, and right now she's gaining about 1 ounce a day. Dr. Henderson can see that I am eager for progress such as faster growth, transitioning to bolus feeds, weaning off oxygen, and ultimately having surgery. But he pointed out that we do have progress: Hannah is alive, she's healthy, she's home, she's growing, she's tolerating the NG tube feeds. Even though its a hard holding pattern to be in and it feels like we'll be here forever, her progress is measurable and important.
I am letting go of my expectation to be off oxygen after a certain amount of time. She is doing great with the oxygen, and her Owlet doesn't alarm at night. I sleep very well because I don't have to worry about whether she is breathing. What a difference!
I am letting go of my expectation to wean soon from the continuous NG feeding to bolus feeding. Right now she is growing steadily, not coughing or choking on any reflux and therefore aspirating. She is comfortable and actually sleeps through the night. Do you know many 6 week olds who sleep through the night? Eventually we will transition to a regular feeding schedule and it might be a lot like having a newborn again. I'm preparing myself for that possibility sometime in our future.
I am letting go of my expectation that each swallow study will show improvement. If it does, I will be pleasantly surprised.
I am TRYING REALLY HARD to let go of my expectation that Hannah can have surgery as soon as she reaches 11 lbs. Given her weight gain, that would be the middle of February.
I am letting go of the expectation that having surgery will solve all of her problems. She could have severe reflux that the hypertrophy(narrowing) is actually protecting her from; she could have more motility problems in her esophagus that need correcting; she could (heaven forbid) get sick again.
I am letting go of the expectation that even if the myotomy does work, we will ever have Normal. We still have recovery and swallowing therapy and re-introducing bottle- and breast-feeding.
I am letting go of my expectation that she will breastfeed again. Fed is best of course.
Christmas week she fought coronavirus. New Years' Eve she had influenza A. We had our 3rd hospitalization Dec 30-Jan 2 at Primary Children's Hospital in SLC. After she had a febrile seizure the first night there (!!!), the doctors wanted to make sure she didn't have a bacterial infection, so they did a lumbar puncture and a 36 hour culture of CSF (cerebrospinal fluid). Fortunately they didn't find anything, and her urine and blood cultures were also normal. That was a big relief.New Years Day her fever was gone and her respiration and oxygen levels improved significantly. She had a consult with a neurologist who didn't find anything alarming either (she already had a normal MRI). We were able to come home on Tuesday, the 2nd, with Hannah on oxygen (.06-just a whiff). If you have been counting, that is her 4th time coming home from the hospital. So now she has a feeding tube with backpack and a nasal cannula with oxygen tank. Certainly more baggage than baby!
Dr. Schramm told me that he "pulled back the reins" on any surgery the moment he found out she had had a seizure. I hadn't realize how truly sick she was, again thinking that the surgical myotomy was the answer to her apneic episodes, bradycardia, and cyanosis, and that was why we were going to Primary Children's. I thought that surgery was on the horizon and getting closer with each hurdle. But the last two weeks have brought us 2 illnesses and a hospitalization that had little or nothing to do with her esophageal problem. I also learned this week that the surgery might not be done until she is symptom-free for 6 weeks, ensuring no inflammation in her throat. So again, I am learning to adjust my expectations. Better yet, to have no expectations.
I never thought that a Speech Language Pathologist would have much to offer an infant that doesn't speak, but apparently there is quite a lot! A SLP stopped into our hospital room to spend some time with Hannah and teach me about how to keep her orally stimulated while she isn't able to eat by mouth. She showed me ways to interest Hannah in sucking on things, putting her hands in her mouth, tasting different textures, even smelling and licking flavored chapstick off her lips. She also told me to do skin-to-skin with her so that she is familiar with that area (Chris says this is good for husbands too). The hope is that she will someday be able to nurse again (and of course have normal eating habits later!), and that in the meantime she can maintain her interest in oral exploration, have positive, reinforcing experiences with her mouth (that doesn't include tests and tubes!), and continue to salivate with stimulation. Its really good that Hannah likes a binky. This is a whole world I never considered! The SLP pointed out to me that Hannah can manage her own saliva, otherwise she would be drooling constantly. Try going a whole minute without swallowing and you'll see.
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| Finally starting to fill out! |
I am letting go of my expectation to be off oxygen after a certain amount of time. She is doing great with the oxygen, and her Owlet doesn't alarm at night. I sleep very well because I don't have to worry about whether she is breathing. What a difference!
I am letting go of my expectation to wean soon from the continuous NG feeding to bolus feeding. Right now she is growing steadily, not coughing or choking on any reflux and therefore aspirating. She is comfortable and actually sleeps through the night. Do you know many 6 week olds who sleep through the night? Eventually we will transition to a regular feeding schedule and it might be a lot like having a newborn again. I'm preparing myself for that possibility sometime in our future.
I am letting go of my expectation that each swallow study will show improvement. If it does, I will be pleasantly surprised.
I am TRYING REALLY HARD to let go of my expectation that Hannah can have surgery as soon as she reaches 11 lbs. Given her weight gain, that would be the middle of February.
I am letting go of the expectation that having surgery will solve all of her problems. She could have severe reflux that the hypertrophy(narrowing) is actually protecting her from; she could have more motility problems in her esophagus that need correcting; she could (heaven forbid) get sick again.
I am letting go of the expectation that even if the myotomy does work, we will ever have Normal. We still have recovery and swallowing therapy and re-introducing bottle- and breast-feeding.
I am letting go of my expectation that she will breastfeed again. Fed is best of course.
I am letting go of my expectation to get back to work anytime soon. I put my Etsy store on hold and stopped taking on other sewing work before Thanksgiving, with the hope to return by Christmas. I simply don't have time for that. Hannah and the other kids are a full-time job right now.
I am letting go of expectations.
My baby is alive and I am happy to prepare her tube feeds every four hours, to pump 5 times a day, to snuggle her and play with her and change her diapers, to plug in her binky every 2 minutes. I'll do it again tomorrow. If I just take it one day at a time, I can do it. If I look ahead and worry that I will be doing this for 6 months I will break down in tears, so I'm not going to do that.
Today, tomorrow, the day after that: I can do this.
Deep breath.
Ready....go.
When I was going through a hard time, one thing that stood out to me during a scripture study one day was "And it came to pass." It's not a phrase you think of meaning anything. But in those words is Sariah's daily struggle to raise a family and get through 2 pregnancies in the wilderness on raw meat. In those words are years. Someday you will be able to say "and it came to pass." The sentiments of letting go you share are so inspiring. You are strong. You can help Hannah (plus those other 4) live, from one day to the next. And some day you too will be able to say "and it came to pass." Hang in there. I hope you feel the prayers we all offer up on your behalf.
ReplyDeleteYou write well. Little Hannah is a blessing. Thanks for being such a great mom to her. Barbara G.
ReplyDeleteJenny, thanks for sharing this. You are becoming an expert in all sorts of medical details and thankfully so. I think logging the day-by-day challenges and victories here is a great idea, there's always better clarity writing things down. Hopefully it may help us, your friends and family, support Hannah and you better as well. Love you cousin.
ReplyDeleteSo glad to hear she's recovering and healthy and that you're holding up under all the stress. You can do this. You're one of the strongest women I know. Sending love your way.
ReplyDeleteWe are following every bit of your news and continue to keep Hannah and you all in our prayers. Watch your mail; I sent Hannah a care package today!
ReplyDeleteExcellent post!
ReplyDeleteYes, unfortunately we have to let go of expectations sometimes. I'm glad you can articulate your journey. We are always praying for you and cheering for you. Keep that little bright-eyes happy!
ReplyDeleteYes you can do this. You are a woman of power! And faith! And love!
ReplyDeleteMom