February 2013: Isla’s Firsts
During Isla's life, Mo used a blog on www.islajeanjohnson.simplesite.com as a means of communicating with friends and family for frequent updates about her condition. The following entries were transferred from the “Isla’s Updates” section of her previous website.
ISLA’S STAIRWAY….SURGERY TOMORROW? Authored March 4, 2013
Isla ascends the stairway It looks like Isla's surgery will be tomorrow morning (Tues March 5th). We have been slowly checking all the administrative, pre-operative boxes needed, which is encouraging. We've met with and given consent to the anesthesiologist, and had a detailed info session with the nurse practicioner, who went over all the steps of the surgery and what to expect. Isla will most likely be the first case of the day, and will be wheeled off to surgery around 7am and returned around 2. We'll spend the day pacing around the CICU and will get periodic updates from the nurses. Will keep you all updated as we learn more!
….WAITING…. Authored March 1, 2013
Another false alarm--on Wednesday night it was decided that Isla's surgery would be Friday morning, so we headed back to Dallas in preparation for last-minute snuggles and all the pre-operative consultations and consent forms. The chief surgeon who will do Isla's norwood procedure popped into our room Thursday night to tell us that another patient had a more pressing issue and Isla would be bumped to "early next week". We'd anticipated this, so we weren't to surprised!!
The nice part about our meeting with the surgeon, who is generally a stoic and exacting guy, is that he was all smiles and quite enthusiastic about how great Isla is doing. He told us that he's very pleased with her weight gain and stable numbers, and that he's very familiar with working on 6-8 week old babies who have had the PA banding procedure that Isla had when she was 7 days old. He said sometimes newborns thrive and grow after that initial procedure, and sometimes they stagnate and need the Norwood shortly afterwards. While the doctors initially thought Isla would likely have problems because of her small size, all the medical team has been surprised at how well she is doing. Our little pistol!
…STILL WAITING… Authored February 26, 2013
No news, we are just still waiting on a date for Isla's surgery. She is continuing to gain weight and is stable. Mo is back to work to save up some leave time for when Isla is in surgery and afterward.
THE WAITING GAME Authored February 23, 2013
Alas, we went from a "firm" date back to the wishy-washy timeline of the medical profession. The only thing that stinks about the whole thing is the sooner she has surgery, the sooner she can recover and come home!! Otherwise, the reasons we have been given for postponing her surgery have all been positive. Once concern that a doctor articulated very well for us today was about inflammation. She explained that the older Isla's tissues are, the more resilient they will be to heal up quickly after surgery. Newborn tissue is delicate and even a few days' time can make a significant difference.
And, just to reiterate--Isla is in no immediate danger for postponing her surgery. She is being closely monitored and if any numbers (from lab tests, continuous monitoring, weigh-ins, etc) indicate that she is not doing well they will move forward quickly. Right now it is a waiting game to see how long she can continue to put on weight and circulate oxygenated blood with her little heart. She's doing remarkably well, over 7.5 lbs, and staying awake for longer periods each day! We’ve been Showing Isla some high contrast art. The look on her face tells us she doesn't approve.
From what we've been led to believe Isla's surgery, the Norwood, has been postponed. The surgeon who does the work wants to wait and see if she will continue to grow and make big healthy gains before he intervenes. This is good news, as an older, bigger baby will have less complications and will recuperate faster. Isla is in no danger by waiting on the Norwood. She's been a little less fussy in the past week than she has in the past. We can get her awake a couple more times a day to bond and for a longer duration. She weighed in at 7 1/2 lbs tonight.
NORWOOD NEXT WEEK Authored February 16, 2013
ISLA’S STAIRWAY….SURGERY TOMORROW? Authored March 4, 2013
Isla ascends the stairway It looks like Isla's surgery will be tomorrow morning (Tues March 5th). We have been slowly checking all the administrative, pre-operative boxes needed, which is encouraging. We've met with and given consent to the anesthesiologist, and had a detailed info session with the nurse practicioner, who went over all the steps of the surgery and what to expect. Isla will most likely be the first case of the day, and will be wheeled off to surgery around 7am and returned around 2. We'll spend the day pacing around the CICU and will get periodic updates from the nurses. Will keep you all updated as we learn more!
….WAITING…. Authored March 1, 2013
Another false alarm--on Wednesday night it was decided that Isla's surgery would be Friday morning, so we headed back to Dallas in preparation for last-minute snuggles and all the pre-operative consultations and consent forms. The chief surgeon who will do Isla's norwood procedure popped into our room Thursday night to tell us that another patient had a more pressing issue and Isla would be bumped to "early next week". We'd anticipated this, so we weren't to surprised!!
The nice part about our meeting with the surgeon, who is generally a stoic and exacting guy, is that he was all smiles and quite enthusiastic about how great Isla is doing. He told us that he's very pleased with her weight gain and stable numbers, and that he's very familiar with working on 6-8 week old babies who have had the PA banding procedure that Isla had when she was 7 days old. He said sometimes newborns thrive and grow after that initial procedure, and sometimes they stagnate and need the Norwood shortly afterwards. While the doctors initially thought Isla would likely have problems because of her small size, all the medical team has been surprised at how well she is doing. Our little pistol!
…STILL WAITING… Authored February 26, 2013
No news, we are just still waiting on a date for Isla's surgery. She is continuing to gain weight and is stable. Mo is back to work to save up some leave time for when Isla is in surgery and afterward.
THE WAITING GAME Authored February 23, 2013
We're sure the date will change a few times, but the nurses have told us that Isla is scheduled for her Norwood procedure next week. This will be her first major surgery, and is a very long (6-8 hours) and involved one. Her speedy recovery from her other procedures, coupled with her good feeding and the fact that she doesn't need a ventilator and is able to breathe on her own are good signs going into this surgery. The Norwood is pretty complicated and is tailored a bit differently for each unique HLHS case. While it's a scary prospect for a month-old baby to undergo such an invasive surgery, the sooner she has it, the sooner she can come home, so we're eager to get on with it.
Isla now weighs in at a whopping 6lb, 6oz!
She has quite a reputation among the CICU nurses for her feistiness and has been known to throw monumental hissy fits. We try to calm her down quickly so she doesn't tire herself out and burn those precious calories on theatrics! Watch “Meltdown Atonement” and “Isla Wide Awake” from 2/15/13.
ALL MEALS BY MOUTH! Authored February 11, 2013
Isla has done so well with eating and gaining weight that the doctors have graduated her to all bottle feeding. She has also taken many of her medications orally, and if she continues to do so they will remove her feeding tube. Hopefully we will see her little face in its entirety soon! Peanut & parents! It's been 19 days since we've held her. I think she forgot what it was like at first as she became somewhat hostile. Things settled down after some warm milk and bedtime stories. She's up to 2675 grams! 5.8 lbs (2/10/13)
COUNTDOWN TO SNUGGLES Authored February 9, 2013
Isla's pic line was successfully installed this morning, and she recovered nicely from the anesthesia from the procedure. Tomorrow morning she is scheduled to have her cardiac lines removed, and by early afternoon, she should be in our arms! <3
THE INIFNATE APPEAL OF THE 8th FLOOR Authored February 5, 2013
Isla officially weighs in at 5lb, 13oz as of last night, and she is doing well. She's been stable since her procedure two weeks ago, and there has been talk of releasing her from the cardiac ICU to the "8th floor", a mythical realm of Children's to where patients graduate when they no longer require such intensive attention. The 8th floor allows families to comfortably room in with their children and boasts single rooms with pull-out beds for parents, private bathrooms, and doors that actually close! If Isla is cleared to go to the 8th floor, she will remain up there until her Norwood procedure.
The main thing that will allow this transition to take place is the removal of her cardiac lines, which are the thing preventing us from being able to pick her up. She will be give an "pic line" instead, which (as far as we understand it) will allow the doctors direct access to her heart to administer medications. So the goal for the next couple of days is to get the various doctors, nurses, and specialists to agree upon the timing of the cardiac line removal, and to get her scheduled at the radiology clinic, where she will be injected with a dye and monitored on a screen while her pic line is installed. Once this milestone is reached, we'll be able to hold our little girl for the first time in over two weeks!
In other news, she is stull chugging down her meals. Every other meal is administered via feeding tube, in order to maximize her calorie intake. Babies get their exercise from feeding, and if she spends too much time and effort extracting food from a bottle, she is actually burning off more than she is consuming. The speech pathologist has been monitoring Isla's feeding habits and is pleased with her progress. They don't foresee any problems when she moves to the bottle exclusively--for now, since the primary goal is to fatten her up, they are just opting to alternate active (bottle) with passive (feeding tube) feedings. She is such a trooper!! Love to you all.
THE ROAD AHEAD Authored February 2, 2013
Everyone is asking, when will Isla come home?? The answer we always get from the doctors is vague, but we got some info yesterday that gives us a better idea of what the road ahead is going to look like for our family.
Between the first and second surgeries, babies are typically sent home under close supervision. The time between the Norwood (1st) and Glenn (2nd) operations is the most critical. Children's has a "Safe at Home" program that includes education, supplies, a daily checklist for parents, check-ins with nurses, weekly visits to the hospital, etc. that has been very successful in reducing complications between the two surgeries.
Here's the kicker: in order to bring Isla home after her Norwood, the doctors and program advocates want us to live within 45 minutes of Children's, and we currently live about 1 hour 15 minutes away. If she stays in Dallas, she will be there until after her second procedure, usually 4 to 6 months after the first one. So, we are figuring some stuff out! A move might be in the cards...
EATING LIKE A CHAMP Authored January 30, 2013
Nana returned home to NC this morning, so we will be updating the blog every day or two with news about our baby girl. She's recovering well from the heart catheterization procedure the doctors did yesterday, and she's been moved again back to a double room with another baby in the cardiac NICU. She's gulped down all of her fortified feeds today, and if she keeps eating well, they might remove her feeding tube in a couple of days.
The doctors hope to give Isla some time to grow before her first major surgery, the Norwood operation. Right now she is about 5.5lbs, the minimum weight for what the doctors like to operate on. We are learning that the medical profession never speaks in absolutes, and for a baby with a serious heart condition will very rarely will give a prognosis for more than a day or two out! We still have no idea when she will have her Norwood operation or when we will be able to take her home. Right now, we are eagerly awaiting the time the doctors decide to remove the pacer wires from her heart, so we can pick her up and hold her again. We haven't been able to hold her since her PA banding procedure 9 days ago.
Love to you all.
