Categories: Our Journey, Our Journey (chronological).
Betsy writes: We, Nana and Grandpa Bill, are in “grand-parent heaven” since arriving for our visit here with John, Abby and Sweet Baby James!! Our days are filled with amazement on many fronts. First of all, the skill that John and Abby have developed so quickly in caring for James…you’d think they have had medical training somewhere in their list of degrees. They are so proficient in meeting every need that James has and in anticipating the next thing before it is needed or happens. It is incredible to see how God has equipped them and given them all they need to joyfully face the challenges of parenting and caring for James.
James is the most precious little one!! His smile is one of the most special things about him; it completely lights up our lives to see his beautiful facial expressions even when he has to endure the sometime painful things required to regulate and monitor his medical issues. He is such a little trooper!!
Bill writes: When we are with James, Betsy and I sing this song which is suitable for James and all babies.
“Jesus loves the little children, all the children of the world; red and yellow, black and white, they are precious in his sight, Jesus loves the children of the world.”
The interesting thing is that when we sing this and other songs to James he gets all wide-eyed and looks like he understands exactly what we are singing. Reading, singing. and talking to him is constantly enjoyable.
We will find it difficult to leave when it is time but will always cherish these days with this precious family. We constantly thank God for James and that many ways he has blessed our lives!Our Journey, Our Journey (chronological) | Comments (2)
This past friday, Grandpa and Grandma Warren drove back to Tallahassee, where we hope they are getting some much-deserved rest. They were a tremendous blessing to us, doing nearly every feeding, many of the shots, and supplying more creativity in playtime than Abby and I can possibly duplicate. Abby is so focused on the regimen of drugs needed to keep the boy alive that we both just stare with wonder with the fun ways that the grandparents interact with him.
A few hours after they left, Grandpa Bill and “Nana” Gjertsen arrived on the scene. Betsy (Nana) is a retired nurse, and so far they are quite smitten with James and proving to be just as helpful to us. We even got a chance to leave the house together this afternoon to pay a visit to our good friend Susan at the hospital, who just gave birth to her second daughter on Friday.
James had a pretty awesome day, starting the morning with more smiles than we usually see in a week. Two bottles this evening were finished completely by mouth, something he had previously only done twice since he’s been home. This may be an indication that he’s ready for even more food, even though it has been recently increased to 75 mL every 2.5 or 3 hours.
As his feedings increase, the endocrine team has to tweak the insulin order up a little bit as well. He’s been having some pretty high glucose readings, including one that just showed up as “HI” on the meter, which we assume means at least 600, since we know the scale goes up at least as high as 580.
James is still struggling developmentally with head control, but we’re trying to give him more tummy time and sitting him upright on our laps. He seems to enjoy studying his own reflection in a car mirror we have set up on the floor. He didn’t seem to enjoy college football with me this afternoon. At first I thought maybe he was pulling for Penn State, but later Abby found out his blood sugar was sky high.
James is still out of public circulation until November, but technology has allowed a few of his fans to interact with him by videoconference. He has never been shy of cameras, and so it seems like we may as well explain to everyone how JTV works. You need a broadband internet connection and an AIM (AOL instant messenger) client. You add “gjertsen7” to your list of buddies. There’s no way to predict when JTV is going to turn on, but when James is in a decent mood, I generally look to see what buddies are online. You might get a message that looks like this:
And then you would type back something like, “right on!” assuming you want James to stream live video of his world-famous face into your computer. (If you have a webcam yourself, the videoconference can be 2-way, but otherwise James is content to simply hear you and see his own face on the big screen.)
Our Journey, Our Journey (chronological) | Comments (2)
Yesterday we met our pediatrician, Dr. Smith, and found out that James gained 4 oz. in a week–to 5 lbs. 12 oz.! This is double his birth weight, a milestone we have been looking for! The pediatrician also said he should continue his 3-hour feeding schedule until he is about 12-15 lbs. Right now this seems like it will be a long time…but it is worth it if it helps him grow. Night before last, the nurse didn’t show, so my parents and I were all up with James on and off during the night. Last night we had a repeat nurse for once, so we got much more sleep.
Gaining weight is not the only milestone James has reached since coming home a week and a half ago. He has started to spend some alone time looking in a mirror and touching his face with his hands. We are not sure if he is discovering his hands, his face, or his self-existence, but he seems to be thinking pretty hard about something.
My parents have been working on teaching him “up” and “down” by moving his arms. This has turned into a fun game, and sometimes he reaches up when he hears the word (sometimes). He has even made coo noises that match the inflections of their exaggerated “up!” and “down.” After this happened, they exclaimed with excitement: “Your son is going to be talking by the age of one!” What a blessing to have loving grandparents who “always protect, always trust, always hope, always persevere” (1 Cor. 13:7).
Although he is making strides in other areas, James is still pretty limited with his spades game. He likes the pictures on the cards, though.
In our dining room, we have a Chinese batik of Jesus and Peter that James loves to look at while he eats or is burped. We wonder why it fascinates him so. In it, Peter is protesting that he doesn’t want Jesus to wash his feet, while Jesus kneels with a towel. I suggested that James might want to tell Peter, “It’s OK, Peter, I don’t like baths either.” My mom said he’s probably thinking that Jesus is getting ready to give Peter an accu-check prick on his heel, and he wants to tell him it won’t hurt too much.
We are thankful that James has been home a week and a half with no emergencies (I bet the endocrine guys are relieved, too). Look out Winnie Palmer NICU–we are coming for a visit tomorrow!Our Journey, Our Journey (chronological) | Comments (6)
Although it is tiring, I am so happy to have James home. The church and other friends are bringing us meals, and my parents are fully trained on blood sugar checks and insulin shots (although they have yet to give one), so things are much easier on me than they could have been. John and I even had a “date night” Friday to go see The Comedy of Errors. While we were out, the grandparents ruefully reported their own struggles to get James’s blood sugar checked with the blood not flowing, the meter turning off, etc. They eventually got it after 4 tries, and the rest of the evening went smoothly.
Speaking of evenings (and errors), we are supposed to have night nurses 8 hours at night for two weeks and then 6 hours a night for two weeks so we can get some sleep. That hasn’t worked out very well yet. We have had 4 different nurses so far, and each time there is a new one, I go over all his orders carefully and then stay up to midnight or later to make sure she is comfortable feeding James with the special bottle and his tongue issue. Then I wake up and check in every few hours to make sure everything is going ok. I am getting about 4-5 hours of sleep a night, and a nap during the day. This would change if we ever had the same nurse twice. The only nurse that was here more than one night didn’t show up or call on the third night. After that she is no longer working our case, so we still have no consistency, and the nursing agency seems to be hard pressed to find someone to work the night shift for us. The nurses we have had have issues like living too far away, not having a firm grasp of English, being smokers, and being about to go on maternity leave. It is starting to feel like it would be easier to just skip the nursing and do it ourselves, between my parents and me. We are going to keep hoping that the right nurse comes along, though.
James has tended to be on the lower side sugar-wise, and we are watching his g-tube for a possible leakage around the hole it comes out of. Developmentally, James is enjoying looking at mirrors, smiling, cooing, and reaching for things. He recognizes his bottle and can indicate whether he wants more or not. (When he runs out of interest we push the rest in with a syringe.) His biggest weakness as far as I can tell is being able to push up on his arms during tummy time. He cries when we put him on his tummy, but we need to keep practicing so he can get stronger and be able to do more.
I have a hunch he has put on some weight, which we can confirm at his pediatrician visit tomorrow. We were able to get him a new primary pediatrician who accepted Medicaid in the same practice that our first choice was in, so that was an answer to prayer. James also has appointments with pulmonology, GI, nutrition, genetics, neurology, ear/nose/throat, and endocrine specialists, as well as physical therapy.
His first big day of appointments was last Wednesday, when he saw Dr. Yang in his office for the first time and then Dr. Morgan, the surgeon, to get his g-tube stitches out. He also went to Arnold Palmer for a blood draw for lab work. My friend Chantel played the nanny (or chief paci-woman as we call it) and we left the house at 9 and didn’t get back until 4:45 or so. She was a great help, entertaining James during the long office waits and car rides with Elmo stickers and peppy one-sided conversations. James and I would have certainly melted down without her. We had to feed him bottles in the examination rooms of both offices and administer an insulin shot at one point. But we survived.
John found out he passed his CFP exam this week! Only 51% of people taking it passed. He is really enjoying his new financial planning job, where so far he has been working on setting up a Mac network/empire. His dad and stepmom will be coming soon to take over the grandparent/nursing duties.
Our Journey, Our Journey (chronological) | Comments (6)
Funny how we thought we could take some time off of blogging, eh?
Well, it’s been a little hectic these past few days, but it’s also quite fun to have the little guy at home. It’s been a blast to read to him,
teach him some sign language (pictured signing the letter “E”),
and take naps with him (of course he wakes up when the camera comes out).
We started out the weekend kind of low on places that we could set him down when we wanted to use both hands to do something. So we mentioned this on Saturday to a friend from church and by Sunday afternoon we had a loaner swing (thanks Kirbys!)
as well as a vibrating bouncy seat/rainforest simulation given to us by the church leadership.
J is pretty stoked about both of these new toys.
Hopefully that is enough eye candy for the fan club.
Though it’s great to have the little guy home, it’s anything but easy. On Monday James had his first visit to the pediatrician, which was mostly uneventful. He weighed in at 5.5 pounds, which is pretty much what he weighed at discharge. Unfortunately we found out that between the time we selected our pediatrician and the time we finally got out of the hospital, they had stopped taking Medicaid patients. So back to square 1 in terms of finding him a pediatrician. 🙁
Abby is doing a fantastic job being James’s nurse most of the time, and as I write this she is training our second night nurse on all of the complexities of his medications and feedings. The first couple nights we were on our own, but this will be the second night that we have nursing support from 10pm-6am. We are so thankful to be getting a little bit more sleep.
James continues to be a challenge to care for on the diabetes front, and by Monday we discovered our glucose meter goes at least as high as 580 and at least as low as 15. If you can see a trend here and think you know where the next reading might be, please let us know.
Our Journey, Our Journey (chronological) | Comments (4)