A little glimpse into the chaos that is our life…
A little glimpse into the chaos that is our life…
Everyone under 9 years old is in bed (the dog is 8), and sleeping. Praise God! Our day was eventful, but so, so blessed!
Last night at about 9 Jesse and I decided to change our plans and both take Glory to the hospital. It seemed everyone we talked with thought I ought not to take her alone, and we decided that maybe they knew something we didn’t. After all, this is our first surgery. So, we called up two dear families in our church to see if they would together care for our other 3 kiddos, and we are grateful for the loving way the Fulks and Smiths (Ilers too!) served us and our kids today.
It was weird driving up to Indy today. I just kept thinking, “I’m taking my daughter to the hospital to have her thumb cut off. What???” Of course there’s more to it than that, but it was a strange thought, and a strange feeling.
We arrived at Riley early, thanks to Dave Iler picking up all the Magnuson children not having surgery today and taking them to the Fulks house for us. It was an odd thing to walk through the hospital with just one child. Jesse carried her, and I felt like such a tag-along walking with them, only carrying a diaper bag and our lunch. This was the first time that we can remember the parents outnumbering the kids. When you’re used to 4, having 2 parents for just 1 seemed a little, well, silly.
Anyway, we got Glory checked in, and were called back to our room at 10:15, about 15 minutes ahead of schedule. We signed paperwork, the nurse took Glory’s vitals, and we changed her into her gown. We were told she’d go back at noon, her hand surgery would take about 45 minutes, then having her ears cleaned and tubes inserted if necessary would take 10 minutes, then she’d need another 30-45 minutes to wake up, at which time we’d get to see her. By our estimate, that put her waking up just before 2 PM. before she went back, we were to see both the hand surgeon and the ENT, and a Child Life Specialist was supposed to come in, make friends with Glory, and would go with her to the OR using an iPad to distract her from the separation from her parents.
At 10:50 or so, the hand surgeon, Dr. Mih (say ‘me’), came in to give us an overview and answer questions. He left, saying they were getting ready for Glory, and a nurse would be in to get her later. At 11:15, the nurse came in, verified that Glory was Glory, and that the procedures in her file were the same ones we thought we brought her for (not a bad idea). Then she asked Glory if she would come to her. Glory did, and the nurse said, “Let’s go!” So we kissed her, and sat down as the nurse carried Glory out of the room. We could hear Glory and the nurse outside the door, and we just looked at each other and asked, “Did she just go for surgery, or is she doing something else?” When she didn’t come back, we decided she must have gone to be prepped for surgery.
We had been instructed that one of us was to remain in the waiting room at all times so that when the doctor was available, one of us would be there. So, we sat and read in our little room, which was decorated with Toy Story characters, until about noon. Thinking that she would probably have just gone into the OR, I suggested that Jesse go out and eat his lunch (no food allowed in the waiting rooms), and then he could go get himself some coffee and me some chai (drinks were permitted). He agreed, and then I suggested an alternate plan: I would go eat first, that way when he got back I could enjoy my chai.
So that’s what we did. I left, and returned 15 or 20 minutes later only to find out that Dr. Mih had been in, said everything went well, said he did have to use a pin, and gave additional instructions. Then, also while I was out, Dr. Morgenstein, the ENT, had been in to tell us he was about to clean her ears and would insert tubes if he saw any fluid at all. So basically, I missed everything! Jesse didn’t go eat, because Dr. Morgenstein was due back any minute. When he did come, he said there was some nasty fluid in there, so she got the tubes, and then he gave us instructions for her care.
Maybe 20 minutes after that, a nurse came to ask us to come to the recovery room because Glory was mad and did not like the nurses! She was fighting them, and they couldn’t tell if she was in pain, or just angry and wanted to see if she’d calm down for her parents. Glory is such a daddy’s girl, I didn’t even bother trying to pick her up, and Jesse scooped up our angry, drugged little girl, and she cuddled right down on his shoulder and went to sleep. The nurse said, “She just needed some vitamin M and D- Mom and Dad,” and then sent her back to our room with us to finish her recovery there.
After a 30-40 minute nap, she opened her eyes and jerked up her head at the mention of water. She slammed almost her full sippy, and was released to go home! Jesse carried her out, and it was such an amazing thing to see her noticing the different sounds as we walked to the parking garage- elevator bells, the sliding doors, and construction equipment all attracted her attention in ways they never have before. I had been warned that she might be afraid of new sounds and their volume, but there was no sign of fear (even at home- the noisiest place we go!). She did surprise us, however, as we heard her repeat sounds that she hasn’t repeated before, like “og” for “dog.” We expect this little girls vocabulary to take off, now that she can hear properly.
On the way home I rode in the back of the car with her, a little concerned she might get sick on or mess with her bandage, which is a soft wrap that must stay on for the next 3 weeks. She was sleepy, and trying to suck the back of her left hand, so I removed the small wrap that was covering the place where her IV went in. After I removed it, she offered me her right hand so I could remove that bandage too. I told her she was going to have to get used to that one for a while!
At home she took a short nap and joined the family for supper, feeding herself with her left hand as her right was bundled into the sleeve of a long-sleeved bib with a rubber band around the bottom. She acted like herself until bedtime, when she hardly put up a fuss when I put her in bed
Each step of the way we are reminded of God’s goodness to us. His goodness in leading us to this precious little girl, for providing her with the most important of her surgeries before we even met her, for allowing her to attach to us quickly so that her daddy was more comforting to her than pain medication this afternoon. What a blessing each of these things are! And His loving kindness goes even further to, in just under two weeks, arrange the schedule of Glory’s ENT to be available to deal with her ears today so a separate appointment was not needed and she didn’t have to go any longer with her limited hearing. We are awed by God’s mercy to our family.
Everything has been confirmed: Glory is to report to the Riley Outpatient Surgery Center on Monday morning at 10:30. Both the hand surgeon and the ENT are scheduled, praise God! Her procedure will take about an hour, then they’ll keep her an hour, then we’ll head home. She will likely have a cast on to protect the pin in her thumb. Jesse will take the day off and spend it with the other three kiddos at home.
Thanks for praying with us. We’re excited about making progress and checking off one of our little surgeries. By the end of the day Monday, we look forward to our baby girl having just 10 fingers, and to be able to hear clear as a bell!
Over the past week we celebrated some firsts and some lasts.
Emet and Jamin had their last days of preschool last week. For Emet, it was the last of his ‘career!’ This fall Emet will enter the realm of public school as a kindergartner, while Jamin will return to Little Seeds for pre-K. Here is Emet on his last day with his teacher, Connie Radovanovic.
Our firsts included the starts of the girls’ developmental and physical therapy sessions, which went well. Therapy sessions are held in our home, which is such a blessing! We did developmental therapy (DT) on Wednesday afternoon, and our therapist spent time with the girls together, and then individually, working with them on repeating words, taking turns, and I’m not sure what else since somebody had to watch the girl that wasn’t being worked with (the boys, mercifully, were invited to play at the neighbor’s).
Physical therapy (PT) was Friday morning, and a bit of a rush. For this therapy, I need to be in the room interacting with the girls and the therapist so that she can show me how to play with the girls in ways that encourage them to meet the goals we’ve set for them. The therapist did say that Glory will need orthotics because her ankles are very weak and roll inward. However, while we’re still just moving toward crawling and Glory has other surgeries ahead, we’ll wait on orthotics for a while.
And speaking of Glory, perhaps our most exciting first is Glory putting herself into a sitting position! On Wednesday morning I was pretty sure I had last seen Glory on her tummy, but there she was sitting up. I watched out of the corner of my eye as she continued playing, and sure enough, after going back down onto her stomach, she pushed herself up, got a leg under herself, and had a seat! We were so excited! It was like a switch going on- Tuesday at bedtime she could not do it, and Wednesday morning she could. She does it now at will
Glory’s new trick only just eclipses that of Jamin, who discovered last week that he can curl his tongue! He is the first of his siblings to master that wonder.
Aaand, Saige wore pigtails for the first time last week.
And finally, today we remember the anniversary of a really big first On May 13, 2009, we became parents for the first time. Here’s that post.
PS- I called the ENT last week to see if he was available to clean out Glory’s ears when she has her hand surgery next Monday. We’re still, with hope, waiting on a response.
For some reason, even addressing envelopes seemed an insurmountable feat this year, so, grandmas of my children, you will hopefully receive a card in the mail next week. We love you and appreciate you, and here’s a video of the kids watching Winnie the Pooh.
I talked with Riley Plastics (the department performing Glory’s cleft surgery) this week. Turns out the information they gave me a month ago was inaccurate, their system has been down for a month, and Glory’s file hasn’t even been submitted to insurance. Sheesh! I was expecting to be a month or two away from her lip surgery, but now it looks like 3 or 4 months easy. While I’m annoyed at the mistake and the delay, I’m really most concerned about having Glory’s ears cleaned out so she can hear properly. Saige is talking up a storm comparatively, and Glory’s vocab is still limited to “Light on,” “All done,” “Mama,” “Dada,” and “Woof!” Tomorrow I will try calling the ENT to see if by some miracle he is available to clean out her ears when she is out for hand surgery. Please pray about this with me!
We’re wrapping up the school year, and looking forward to having a little more flexibility. Of course, we still haven’t started therapy through First Steps, so we don’t know what that is going to look like. It seems like it will probably be developmental therapy one day and physical therapy another, with one therapist working with each girl for an hour apiece. Hopefully we’ll get a start date scheduled soon.
This is a pretty newsy post, devoid of stories or anything particularly interesting, so I’ll leave you with a video that is short and sweet, just for fun.
Finally! We have a surgery date for Glory! Granted, it is not the surgery we place in priority, but something is better than nothing Glory will undergo an operation to remove her extra thumb on her right hand and the extra bone in her right thumb on May 20 at Riley. It feels good to have something scheduled after nearly 2 months of waiting on insurance approvals. Next week I’ll give the cranio-facial team a buzz to see if they’ve sorted things out with insurance regarding Glory’s lip repair, unless they call me first.
As I think back, I am so grateful that the really important surgery, the one to repair Glory’s heart, was done last year while she was still in China (and that the repair was good, with no need to repair the repair!). In fact, it was done one year ago last Saturday. What a mercy to only face a little inconvenience waiting to be scheduled for surgery, rather than the anxiety of trying to provide timely care for a very sick little girl. God is so good- right down to the waiting.