Slow Saturday

Hey guys,

Elise is slowly continuing to improve today. The doctors did have a few things to change today starting with my breast milk. Elise needs extra calories to heal her damaged lungs, and my milk, although yummy, just doesn't have enough calories for as sick as she has been. So the doctors are adding a fortifier to my milk, kinda like a protein shake. I offered to eat extra calories, who wouldn't love a doctors order to eat high calorie foods! But they said the only thing I can do is avoid low fat foods, which I won't have any trouble doing.

They also added some salt water to her milk today to increase her sodium levels, and decreased Ativan from 0.2mg to 0.1mg. And her only set back today was she vomited 3 times after getting all her meds and milk fortifier. But hasn't vomited again since then, so she should be ok.

Her oxygen sats are staying in the 80'sand 90's even when she gets upset now, which is a great improvement even from the first of the week. This means that hopefully we can start to decrease her 5 liters on her oxygen next week.

Otherwise Jason and I sit by her bedside and watch her funny facial expressions while she sleeps and laugh. Hope you all enjoyed your day.

Love you all.

Kristin, Jason, and Elise

Putting in Our Time

Elise has been hanging out nice and steady today. Her respirations are slowing down and little bit and she's tolerating the wean of her morphine (now 0.2 every and six) and ativan (still 0.3 every six). We were waiting for that slowing of her breathing before beginning bolus feeding, so that was initiated today. She was getting 25cc/hr continuous, so now she has been converted to 33cc/hr for 3 hours with an hour break. This is repeated throughout the day. Her oxygen saturation has also been better today, staying around low 90s with 70% oxygen. She has been responding to the diuretic, Lasix, so we will be using a different diuretic, chronically, for up to six months. We started that other diuretic, Aldactacide, which is a combination of spironolactone and hydrocholorothiazide. It takes a couple of days to be effective, and that's why she got the lasix together with it. The medication is safer than lasix, not having the ototoxicity that can cause hearing damage and will not mess up her electrolytes, especially potassium. She is beginning to better tolerate us moving from crib to our laps or onto our shoulder. We like what we're seeing, it's just difficult to be patient. Love you all, Jason

Slow going

Hello everyone,

Not much to report today, which I think is going to start being the theme from here on out. Elise had a very stable day, like yesterday. The doctors didn't change anything today, but are only maintaining her where she's at. So Jason and I are sitting by watching her, waiting for our moment to hold her. She desats easily with stimulation, so we try to limit bothering her, which is hard to do when all we want to do is hold her.

We are starting to accept the fact that we are going to be here until at LEAST the beginning of June, and who knows how far beyond that. It is really hard not to be mad everyday, since we feel robbed of this gift of a first child. Not getting to experience the joys of bringing home a new infant, and becoming a family in our home. Instead we are stuck trying to become a family in a hospital. We hear stories from everyone about other families who have gone through similar hardships with their children. And although it is comforting to hear that we are not alone, we are still flooded with feelings of frustration, anger, resentment, and a general misunderstanding of why this is happening. We try to have positive attitudes, but find it is easier to cry and break under all the stress, and metal fatigue. What helps us get through each day is knowing how many of you are out there thinking of us, and all the support we have received through cards, emails, texts, care packages, and financial support. We cannot thank all of you enough for continuing to be supportive during this long process. We couldn't have done any of this without all of you.

Thank you, thank you, thank you.

We love you all.

Kristin, Jason, and Elise

Get Physical

Do you think she looks like her dad? Here is my 3-day-old picture.

Elise taking a nap with her bunny from Aunt Jane and Uncle Sam. Chillin' out in Grandma Marcie's outfit. Elise was feeling up to it, so I did some exercising and stretching with her. That feels good dad, I can take bigger breaths when you do that. Elise did pretty well today; not so up and down on her sats. I think she really needed that Lasix to get some fluid off her lungs. She's been hanging out in the 90s steadily today after getting Lasix every 12 hours, beginning yesterday morning. They converted her to oral Lasix today. Her sedation wean has got her taking Ativan 0.2 and Morphine 0.3 every six hours, alternating the two every three hours. She stills gets a small dose of hydrocortisone and some MV with iron all through her NG tube. Converting the Lasix to oral was the final step in allowing us to remove her umbilical artery catheter. She now no longer has any indwelling catheters! (A good note from an infectious disease standpoint.) We are holding on to the continuous breast milk feeds through her NG at a rate of 25 cc/hr. She is still breathing a little to quickly to tolerate a bolus feed. The bolus feed would be the same amount of food given over two hours with a one hour break. We gained some advice from friends at St. John's NICU, and it seems like it would be best to continue our stay here in St. Louis for a while. The continuity of care is important, and it is also very nice to have our private room. We also don't think she will be able to comfortably travel for a little while. Kristin and I are going to return to Springfield this Tuesday so I can work a shift at St. John's and then go back to St. Louis on Wednesday. This will give us a short break, allow us to see family and our doggies. We still aren't sure how long we will be here, a week or two is very possible. Even at that time she will go home on her hydrocortisone for a short while, and possibly Lasix and oxygen via a nasal cannula. We can't forget that her lung disease is substantial and that she will need time to grow out of it. Today she tolerated me doing some stretching with her, as she gets really stiff and I hope to expand her chest to improve her breathing. When I got finished with her, occupational therapy came in and worked on her further. Kristin and I enjoyed a nice walk to and through the zoo today and are going to have dinner with Uncle Don tonight. We feel pretty good about today and hope that we can stay on a level plain with her progress. Love you all, Jason

Our little Drunk Monkey

Hello Everyone, Looks like your stuck with me again writing on the blog today. Due to our frustrating day, Jason doesn't feel up to writing about it so here I go again. We came in this am to Elise breathing over 1oo times per minute (too fast), and her O2 sats hanging out around 80% (too low). They took a chest xray and found her pulmonary edema (fluid on the lungs) had returned, requiring her to need another dose of Lasix (a diuretic), which she hasn't needed for 2 days. A minor set back, but a set back none the less. Another issue we have been dealing with is her weaning off sedation. Since her PICC line was removed Sunday, she has been taking her sedation by NG tube, and has been continuously sedated. Which means she sleeps constantly, with very few awake times. The doctors assure us that they are working on a decreasing dose, but it seems like it is taking too long. And as you can see in the first picture, she looks quite drunk today. Which even though is rather amusing, is not what we want. And to make matters more frustrating, it looks as though our original transfer back to St. John's plan is not only not going to happen, but it looks like our stay in the hospital could be up to another month. Our only hope is that Elise keeps proving the doctors wrong with her rate of improvement. So as you can see although this day wasn't a total 2 steps backwards, we definitely didn't go forwards any. As we end our day with a minor decrease in sedation, and an improvement in lung function after the lasix. I'm holding Elise in my lap, and she's looking back at me with her big, beautiful, steel blue eyes.........blowing bubbles in her mouth. Thank you everyone for all the mother's day wishes, and cards. We miss you all, and can't wait for you to meet our precious little monkey. Love Kristin, Jason, and little Elise

No more NO

We got some quality time this morning. She's really able to relax more.

Kristin held her for quite a while this afternoon. Elise really likes hanging out with mom.

Thanks for all the support.

Well we successfully got offthe nitric oxide (NO) this evening, and that's the reason for the late post. She is satting lower without it, but I think she is going to manage. After pulling her PICC line yesterday they started morphine down her NG and discontinued the IV fentanyl. This evening or tomorrow her IV versed will be converted to NG ativan. At that time we will be able to remove her umbilical artery catheter, and she will no longer have any IVs. The not-so-good side of the day is the news that weaning her high-flow oxygen through nasal cannula and the sedation will likely take a couple of more weeks. That means late this week or early next week an ambulance will retrotransfer her to the NICU at St. John's. They first want to establish a weaning schedule for morphine and ativan that she can tolerate. If they don't wean her carefully, she will withdrawal as seen by agitation, vomiting, restlessness, rapid breathing, and diarrhea. She may need to go home on oxygen for several months even after her stay at St. John's. The nasal cannula is to support her with positive pressure as she may not be able to expand her lungs and oxygenate on her own. We will also need some time in the NICU to make sure that Elise can breastfeed as they will likely not send her home with NG feedings. So she made some good progress today, and will need some rest to recover. We hope that we will be able to come home this week, but we'll have to see how she comes off the morphine and ativan. Love you all,

Jason

Steady As We Go

Today was a day of slow progress, but probably more importantly, no setbacks. We successfully weaned Elise's inhaled nitric oxide down to 3 ppm from 20. She had some difficulty with it and so needed a bit more oxygen, now at 73%. She seems to be resting very comfortably now, so the staff feels there is no hurry to move on anything else. She is to goal on feedings, 25 cc/hr of breast milk, but they are cautious about going to bolus feedings until we wean off the nitric. Elise clotted off her PICC line and so that was removed today. She was only receiving her versed and fentanyl through that line continuously, so they just switch it to her umbilical artery line. Now that she is getting those infusions in her UAC now they have to do heel sticks for her twice-daily blood gases. She is no longer getting lasix, and they won't be doing anymore chest x-rays unless she has trouble. We're just going to sit tight on today's progress, let her recover, and progress again tomorrow. Our schedule looks like we will possibly be going home next Monday, plus or minus two days, if all continues to go well. As that stands, we ask that no further mail be sent to St. Louis. Kristin got to spend some time with her mom today, as she came up along with A.G. and Brad. We attended mass at the beautiful Cathedral Basilica of St. Louis (you have to check it out at http://cathedralstl.org/intro/). Kristin and I are thinking about a nice dinner later this evening. She got better rest last night, as did Elise, and she is thinking about sleeping at the RM house tonight. We really miss being at home with the doggies, family, and friends. We truly appreciate the help of our friend, Jon, who is staying at our house and looking after our girls. It has taken a large load off our shoulders. Keep posted to see what comes of tomorrow. Love you all, Jason