Today we have been in the NICU for 4 weeks. Three months ago today, we found out about Faith's gastroschisis. The days are starting to run together a little... I need to be more diligent about getting on here every day to update, because now I don't remember what's happened on what day, so I don't think I can go back and write detailed posts for each of the days I missed. So, I'll just give an overview of everything since my last post.
This morning one of my favorite old hymns popped into my head:
What a Friend we have in Jesus, all our sins and griefs to bear!
What a privilege to carry everything to God in prayer!
O what peace we often forfeit, O what needless pain we bear,
All because we do not carry everything to God in prayer.
Have we trials and temptations? Is there trouble anywhere?
We should never be discouraged; take it to the Lord in prayer.
Can we find a friend so faithful who will all our sorrows share?
Jesus knows our every weakness; take it to the Lord in prayer.
Are we weak and heavy laden, cumbered with a load of care?
Precious Savior, still our refuge, take it to the Lord in prayer.
Do your friends despise, forsake you? Take it to the Lord in prayer!
In His arms He’ll take and shield you; you will find a solace there.
Yet another of those interesting God things that has served to remind me that He is there and in charge... I can't imagine why that particular hymn would have come into my head, when I don't even remember the last time I heard it or sang it in church. I think anyone who doesn't believe in God would, after reading everything that's happened to us in the past 3 months, and seeing how in control of all of it He has been. And how particularly meaningful it was for that hymn to come into my thoughts at this point in time, with everything that's happened since the last time I wrote...
Things have been very frustrating over the past few days. I am beyond tired of the surgeons; I feel like none of them understand that I expect to see one of them every day, even when I have made it perfectly clear now to two of them that I do... Is it really that odd to expect to see one of them on a daily basis, when they are Faith's doctors?? I don't feel like any of them tell me the truth about anything, either. They just sort of talk around everything... and they can't tell time. Yesterday they said someone would be up at 3, then they had an emergency surgery, but were going to be up right after that, then the nurse called and said Faith's legs were swollen and someone needed to come look at them and they said someone would come, then 3 hours later the night nurse called them and said someone needed to come talk to me, and they said someone would... then finally at 12:30 last night Dr. Sandeval showed up. I think I am going to get them each a watch for Christmas.
My mom and I went so far as to see one of the Patient Advocates yesterday to complain about them. I have expressed my frustrations about them to the nurses every day for the last 2 weeks or so, and finally someone in charge is aware of their problem so that it can really be dealt with. I talked to Dr. Potter last week about it, and Dr. Sandeval last night; but today the Clinical Care Director for the NICU said she got the complaint from the Patient Advocates and she forwarded it directly to Dr. Partrick. Two different nurses today said that Dr. Partrick would NOT be happy if he knew this was going on, so we'll see if anything changes...
Milk skimming is going well. I have finally heard from everyone who matters that they will try my skim breastmilk first when it comes time for feeding. They will have to fortify it, because it won't have as many calories without the fat, but as long as her drainage doesn't come back when they start feeding her with it, she can have that instead of the Portagen formula (which, by the way, says it is NOT for use as an infant formula). I am going down to the lab tomorrow to have my blood drawn for the screening the Milk Bank requires in order to test my samples on their machine. Then hopefully Dave and I will be able to take a bunch of samples over there on Monday to be tested, so we'll know when it's time to feed that the milk I've got frozen for her is ok.
The nutritionist told me yesterday that the skim breastmilk can (and really should) have up to 10% fat and still be ok for her, so that made me feel a lot better, since even after skimming 4 or 5 times, some of my samples are still separating a little. I was thinking none of it would work, because I knew from the separation that it still had fat in it, and I was feeling like I'd never get it down to 0%! But now that I know I don't have to get it to zero, I feel much more confident that at least some of the batches I've gotten done will be ok for her to have. So far I've done 6 batches and gotten them in the freezer, and each batch looks better than the last. I've figured out some tricks to help, too, so it's getting easier each time I do it.
One discouraging thing yesterday though was when the nutritionist told me how long it would be before Faith can get up to full-fat once she starts eating... she said it can take anywhere from 8-12 weeks! That really got me down for the rest of the day, because not only does that mean a more extended hospital stay than I had originally thought, but it also means that it will be that much longer before I can try to actually nurse Faith. I am just having a really hard time being optimistic that we'll be successful in establishing a good nursing relationship, when she won't even be able to try to nurse until she is a few months old.
Mary Ann was telling me the other day that there are different levels of nurses, and that in order to move up a level, they have to do projects, and her supervisor-type person for lactation has encouraged her to use this as her project to move up. So she is sort of using me to set a standard, to get this more widely recognized as an option for feeding babies with Chylothorax. She said there's a photographer coming at 10 tomorrow to take my picture while working with the milk, so they can use the pictures to document the history of the skim milk being used here at Children's. I think it's all kind of cool, first that I even found out about the skim milk option (one of those God things), then that Mary Ann knew that Presbyterian/St. Luke's Milk Bank can test the milk (another one of those God things), and now that I've been able to convince the doctors to let Faith have it, and that I'm setting the standard for other babies to be able to have it in the future.
Let's see... what else has happened since the weekend...
Faith lost her arterial line. It had been bleeding around it for a few days, and finally it just stopped working.
Faith got a Christmas present... we're not sure from where, but we think it might have something to do with the Harley toy ride thing that was going on this weekend, because the day they did that is the day it appeared in her room.
We woke up one morning to see Faith like this:
That was another of her cute hair clips from Lila.
This is another of her hair clips- I noticed that it matches one of her headbands really well:Faith had an IV put in her head. That was sad, because it meant no more headbands. But at the same time, it was necessary, and they didn't have to shave her hair, so I couldn't be too sad about it. And, it lasted less than 24 hours before it stopped working and they took it out. I don't know what it is with her veins, but they just do not like IV's.
I finally got the nurses to turn off Faith's warmer. I told them I thought it was stupid that she still had it on, when she's a full term baby, she's been all closed up for three weeks, and she was constantly getting hot under the warmer, so they had to break rules, like putting the lead in her armpit, and turning the temperature of the warmer way down so it wouldn't overheat her. I had gotten Mary Ann to turn it off one time before, but she didn't cover Faith up, so the next time she checked her temp, Faith was cold. That was one of those "duh!" moments- you wouldn't leave a normal, healthy baby naked and uncovered lying in a bed, so why would you do it with a sick baby?? Anyway, so now Faith can wear socks and hats as long as she doesn't get too hot, and she can be covered up with blankets. The nurse today even swaddled her (she wasn't as afraid of the chest tubes as most of the nurses are). Faith really seems to like swaddling, and I'm glad, because getting her used to that will help I think when it comes to having her like being held and cuddled and worn in a wrap or sling...Speaking of the nurse today, she was great. She was a resource nurse, so she wouldn't usually be one of the nurses directly taking care of babies, but she has been a nurse for a long time, so she used to be one of those nurses. She seemed like she knew a ton about everything, and she was much more comfortable treating Faith like a normal baby than any of the other nurses have been. We gave Faith a bath today (she needed it!), and then I got to massage her with lotion, and we moved her around a bunch to help some of the fluid shift so she could pee it off better. Faith loves her bath... she's just so comfortable afterwards. I think she doesn't like to stink.
Then, after all of that, the nurse wanted to change her bed, and while she did that, I got to hold Faith! :) Like, really hold her, not just hold her elevated above the bed for a minute, which has been all I've gotten to do since she had the chest tubes put in. I held her for over an hour, for the first time in 2 weeks. That was really nice, and once again, it had great effects for Faith- her heartrate went down, she breathed well, and she was just really relaxed and comfortable. And, now that I know I CAN hold her with the chest tubes in, as long as she continues to have good, stable days like she's been, I can hold her every day! I think it will really help both of us... it keeps me much more optimistic about everything, and I think it will help her get better faster.
Faith has been taking a lot more bigger breaths on her own today. That is a good sign, and a step in the right direction toward finally getting ready to be extubated. She has had a lot of secretions in her lungs though over the past few days, and has had to be suctioned a lot more than usual, and if she isn't suctioned pretty regularly, her oxygen saturation has been dropping from the high 90's where it usually is, down to the low 80's (and sometimes even lower). So, she is in isolation again, which means that all the staff who come into the room have to wear a bunch of protective gear- gown, mask, and gloves.
They took a bunch of samples today; they are doing cultures again of the secretions from her lungs, her blood, and her urine, to check for infection. If she does have an infection, the nurse today told me that it will probably be considered sepsis, but that doesn't have as negative a meaning in babies as it does in adults. She explained that since babies are so much smaller, they can become septic just from getting an infection in one place- so say for example Faith's PICC line got infected, she would quickly be septic just from that. But she said "septic" just means the infection is all over, not just in one place. And they put Faith back on antibiotics, and specifically on one that kills virtually everything, so hopefully if it is an infection, it will get better soon and not affect her too terribly.
I can't think of anything else that's happened over the past few days... I tried one of Faith's small hats on that I made for her since all of her other hats are too big, and it was too small. I am amazed at how much she's grown, when she hasn't even really eaten. She is still small, less than 7 lbs, and probably closer to 6 when she's not all swollen, but her head has grown enough that the little hat that would have fit perfectly when she was first born is definitely too small now. I guess that means I'll just have to make her some new ones, a little bit bigger. All of the store-bought hats that have come with outfits and such are still too big except for one, so she's just at this weird in-between stage right now I guess. One of the hats I made her does still fit though, so I was glad for that.
I will try to be better about writing every day, because it makes it a lot easier for me, too, to remember what happened on what day.