Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).
James’s neighbor in the NICU is Rafael, who has recently come off of a breathing machine and seems to be doing better. Rafael is the youngest of nine, and his family is also our neighbors at the Ronald McDonald House. The only one in the family that speaks any English is the eight year old, Oliver. The nurses are very thankful to have Oliver around to translate, and we are thankful as well to have a nearly ever-present source of levity and friendship with this fourth grader.
Earlier in the week we commissioned Oliver to decorate the side of James’s isolette, as he loves to draw, and Rafael’s isolette was already full of his drawings. So now James has on his box a dancing chili pepper, a sombrero, and the number 1. There is also a picture of a bowl with a slice of watermelon, a slice of pizza, a plantain, a piece of chicken, an apple, and a flower. (We told Oliver that this second picture will help remind James that he needs to eat to grow big and strong.)
We have another blogger as a neighbor. I met Jamie only briefly, but spoke at length with her mother at dinner the other night, who recognized us from our picture on the blog. A friend we have in common posted a comment on their blog (www.parkeru.org) that mentioned our blog. Jamie just had a baby, too, but it is her 2 year old, Parker, who is currently battling leukemia. Her mom shared with us that even as her grandson is in a fight for his life, she was moved to read our story and empathize with our situation. Like us, the source of their strength in the midst of adversity is the anchor of hope they have in their loving God. Written on the top of their site is the verse:
Your love, O LORD, reaches to the heavens, your faithfulness to the skies. -Psalm 36:5
Other neighbors are Kevin & Christina, who are from New York. They were down in Florida for a conference when they had their baby at 27 weeks. We’ve gotten to know them pretty well, and we’re going to go out to dinner with them this Monday.
James had another little neighbor while he was in the ECMO room whose name was Elvis. Elvis’s father, Chad, had dedicated one of his arms to Elvis Presley-related tattoos. It seemed like Abby and I were just starting to connect with his parents at the Ronald McDonald House when Elvis died at two weeks old.
And his is not the only fatality we’ve observed.
As I’ve begun to take notice of the people around me, it’s more clear to me every day that they are in a lot of pain. This morning I read in Luke 10 where Jesus defined the neighbor not as the one who had the most in common, but as the one who showed mercy. Since we moved into the Ronald McDonald House, we’ve found that, despite appearances, we have a lot in common with those around us. Lately I think God has been teaching me that he has us there for a reason, just as he has called us to write in this blog for a reason.
I was listening to a Caedmon’s Call song on the way home this afternoon that summed it up pretty well:
We are called out; we are ransomed
We are not of the world we’re in
We are chosen; we are blessed
To bring light to the lives of men
So Father sow Your seed
Give us life in community
Wake us from our sleep
This is Your time; this is Your place
And we are vessels for breaking under Your grace
We are led by Your Spirit
You have redeemed us by the blood of Your Son
Send down your word we are eager to hear it
Ready our hearts to carry Your love
Even as the hospital staff is engaged in a rescue operation for James and his neighbors, we know that God is also engaged in a rescue operation to bring mercy and forgiveness to sinners through Jesus, and we are witnesses to this great mercy with a testimony to share. May God grant us love for our neighbors.Meditations on Scripture, Our Journey, Our Journey (chronological) | Comments (2)
—Their Eyes Were Watching God, Zora Neale Hurston
“Hello, Boyfriend!” (Mitos)
“Hey there peanut.” (Megan)
“How’s Mr. James?” (Kady)
“I’m sorry, boo boo.” (Lauren)
James is quite the ladykiller here in the NICU. When he turns his big blue eyes on the nurses in this place, they fall hard. Half the staff (I count at least 54 in my notes) have taken care of him one time or another, so he boasts lots of “girlfriends.” (He has had a couple male nurses too.) I think they love him because they all feel so bad for having to stick him with needles all the time.
Seriously, the nursing staff here at Winnie Palmer is fantastic with almost no exceptions, and not just because they have big hearts. They will bend over backwards to get James smaller needles, treat him to a little syringe of milk or a sugary pacifier, improve his pump arrangement, order a better concentration from the pharmacy, or find him a new blanket or pacifier. They have all had at least four years of nursing school and have been trained not to pick up anything that falls on the floor (however, they assure us that they would pick up a baby if it was dropped on the floor.)
However, while a constant stream of new nurses increases James’s popularity, it also increases the possibility of mistakes when communicating or administering his unusual regimen of shots and sticks. With two months down and looking like at least two more to go, it’s time to get James a consistent team. Today I talked to the nurse in charge about which nurses we want ask to “primary” James if they are available. The list I gave her includes people from every pod we have been in, and I’m not sure if they can all be pulled over to pod 1, so we’ll have to see how it goes.
Our Journey, Our Journey (chronological) | Comments (3)
Today James is two months old! He celebrated by taking a ride in a swing. James was much more interested in his pacifier and the black netting on the sides of the swing than he was in the fancy toy bar hanging in front of him.
Remember when James’s blood sugar bottomed out the day after his surgery, and Dr. Desrosiers told the nurse to shoot him if he ever used Lantus (the 24-hour insulin) on him again? Well, James’s blood sugar has often been above 500 for the past few days, so Dr. D decided to try Lantus again to bring him down. He gets a half unit a day and regular insulin every six hours on top to further fine tune his sugar. Yesterday’s sugars were the best he has had in a long time, ranging from 408 to 139. Today, however, his readings were 500+ and 37, so Dr. Desrosiers has cancelled tomorrow’s dose of Lantus. James is a moving target, it seems.
Over the weekend James’s nurses forged ahead with the bottle feeding, and he started taking every other feed via bottle, then 3 out of every 4. After all that success I thought it would get easier, but his first two feeds for me today were complete failures. I felt discouraged, especially because I hope to be able to bottle-feed him when James goes home. When the occupational therapist came in for the first afternoon feeding, she noticed the bottle nipple we had been using was the wrong kind. When we remedied that, things went much better. He took 2/3 of his next feeding via bottle.
His weight has been inching up, but today his anti-diuretic hormone shot wore off before the next one started and he lost a lot of water into his diapers (and Mommy’s shirt). That will most likely drop his weight tonight.
Basically James is see-sawing right now. We are praying for more in the “plus” column.
Our Journey, Our Journey (chronological) | Comments (3)
This weekend I officially entered an exclusive club. I was able to bottle feed my grandson James and watch those bright eyes as he relished his meal. Then, unwisely without a burp cloth, I lifted him to my shoulder to burp him. James, it turns out is a champion burper for his size, and he did what anyone would expect…he anointed my shoulder. I am now a proud member of Grandmothers International.
Our Journey, Our Journey (chronological) | Comments (2)
When I wake up every morning to pump milk, what gets me out of bed is the prospect of another day with James. Like the Hospice license plates say, every day is a gift. What I look forward to most is feeding James his bottle. He has moved up to two bottle feedings a day, and he can usually finish them all before he tires out. It’s still pretty tough to get on top of his tongue, but when—on about the sixth try and with the help of another person—it works, he lights up and gulps it down. He’s not all smiles afterwards anymore, and often he fusses right afterwards once the burping is done. It’s still a precious bonding time, though. Right now John and my mom are with him, getting some experience at the tongue vs. nipple wars.
As a result of the family meeting, James has had blood drawn to go to some labs that will test for genetic disorders and levels of certain molecules. Actually the lab here accidentally stored a couple vials of his blood incorrectly, so he has to get that drawn again Monday. The nurse who drew the blood painstakingly—drop by drop from his heel—was so angry when the lab called that she wrote them up and demanded that they send someone down to apologize to me. All the nurses feel sorry for how many times they have to stick James. Dr. Albertini took one shot off his menu yesterday when she discontinued his epoetin on M-W-F (he seems to be over his anemia now, praise God).
Meanwhile the blood sugar battle continues. He tends to be 500+ rather than <20 these days, but Dr. Desrosiers has upped his highest insulin dose to 0.6 units and may raise it again to get him down further. If he is still running that high after this weekend, they are going to give up on the subcutaneous insulin shots and go back to putting it into his bloodstream through the central line. This would be a setback in terms of getting him closer to what we will do at home, but at that point the short-term goal of controlling his sugars so he can gain weight will take precedence.
Today Dr. Brown went through his whole regimen and took out any superfluous sugar, from the drip that keeps his line open (changed it to saline) to the iron supplement that was suspended in a glucose solution. He continues to be on high-calorie feeds, though, and his weight has gone up the past couple days.
Dr. Barr, the neurologist, dropped by today and checked James for signs of spasticity (muscle tightness, a feature in most HPE patients). He said he looked good, though. He warned that James needs to gain weight so his brain can grow and push his skull pieces apart before they fuse incorrectly. James has ridges going down the middle and sides of his forehead right now where the skull pieces overlap.
Dr. Barr also took a look at the second MRI of James’s brain from 6/13. He confirmed that James has semilobar HPE, the medium level of holoprosencephaly, instead of the mildest form, lobar HPE. However, it does seem to be on the milder side of semilobar. Some of you may have noticed that James doesn’t have the typical midline facial defects of “regular” HPE. For instance, his ears are tiny (microtia) and his lower lip opens sideways, where usually HPE patients have problems with eyes, nose, and upper lips. The doctors think that is because James has a syndrome with different physical manifestations than the typical single-gene HPE. I don’t yet fully understand what all that means, other than the typical literature on HPE isn’t going to fit James in a lot of ways.
That’s all for now. Mom and John got back and reported that the nurse was more successful at getting the nipple on top of the tongue than they were.Our Journey, Our Journey (chronological) | Comments (2)