Sunday, November 30, 2008
She now has 5 potential sites for infection, between the 2 chest tubes, Broviac, and now 2 PICC lines. She has VERY uncooperative blood vessels when it comes to IV's and arterial lines... they had to do the second PICC line because her latest IV stopped working after only about a day. Then they tried to put in a new aterial line last night, so that they could stop poking her poor little heels again... they tried like 4 or 5 times, with different people trying, and they could not get one started, so they gave up. But, she is doing very well, we are being very careful to avoid her getting exposed to any possible sources of infection, and the doctors and nurses are keeping a very close eye on her so if she were to get an infection they would be able to treat it right away.
And, more good news- the night I posted about the doctor's news that Faith wouldn't be able to have my breastmilk, someone sent me a link to this article (<-- that is a clickable link). Today I said something to Mary Ann, our nurse, and she said that there is actually a milk bank in Denver that makes fat-free milk for babies with this condition! There are fees associated with processing the milk, but I am going to call them tomorrow and see what I can find out. I know a lot of people wouldn't have a problem with their baby having formula, or wouldn't understand why I would be so opposed to her having formula instead of my milk... so here is some information from the Human Milk Banking Association of North America.
"Human milk is the standard food for infants and young children including premature and sick newborns with rare exceptions.
Human milk provides optimal nutrition, promotes normal growth and development, and reduces the risk of illness and disease.
The unique composition of human milk includes nutrients, enzymes, growth factors, hormones, and immunological and anti-inflammatory properties that have not been duplicated.
Exclusive breastfeeding for six months is recommended with introduction of complementary nutritionally adequate foods at about this time. Optimally breast milk remains in the diet for two years and beyond.
In situations where mothers’ own milk is not available, provision of pasteurized, screened donor milk is the next best option particularly for ill, or high-risk infants.
Current research regarding human milk
Human milk is species specific and provides unique benefits.These include health, nutritional, immunological, developmental, social, economic and environmental benefits. The health benefits including long term decreased risk of a wide range of illnesses and infections last beyond infancy.
Feeding human milk results in both short and long term health care cost savings.
Most bioactive properties found in human milk remain viable after pasteurization.
Pasteurized donor milk for premature and high risk infants has been shown to reduce the incidence of necrotizing enterocolitis, sepsis, and infection, resulting in shorter hospital stays.
Donor milk has been reported to be effective for nutritional uses, post surgical treatment and provision of immunological benefits. Patients with varied comditions including bowel surgery (oomphalocele, gastroschisis), failure to thrive, formula intolerance, suppressed IgA levels (treated post liver transplantation), allergies, chronic renal failure, leukemia, intractable pneumonia, and HIV have responded positively to the use of donor milk."
I would think the benefits will be even better, since she can have my own milk. There is a lot of research to support the idea that having my milk, even processed to be fat-free, will help her to heal faster, avoid infection, and go home sooner than if she is on formula.
On a slightly negative note, I have developed an infection, probably because pumping is not nearly as effective as actually nursing... but we caught it early and I'm on antibiotics now to treat it. I don't know how I avoided this issue with Noah through 12 months of nursing, but now in 2 weeks already I'm having struggles. I still have a great supply though, which is really reassuring, especially with the troubles I had with that the last time. I also see my rheumatologist on Wednesday, and will hopefully be getting a lot of tests done to make sure that my lupus has stayed the same through all of this, and I think she will be starting me on a med that should help with the majority of my symptoms (the joint pain, fatigue, and some of the skin symptoms).
I have new pictures, I will post them tomorrow, I'm really tired so I'm going to get some sleep now...
Tuesday, November 25, 2008
She's not purple, or in a plastic bag anymore...
She doesn't have a big huge bag of intestines hanging above her anymore...
She has both arms and both legs free, and a belly with all of her organs in it!
And even swollen, she's still pretty darn cute! ;)
Monday, November 24, 2008
Sunday, November 23, 2008
I will keep updating through the day as we find out more. I don't think she will be extubated today though :(
Saturday, November 22, 2008
So I got off work and headed to Denver... driving somewhat quickly so that I was able to go see Raeanne and Faith (Noah is in Loveland this weekend with Raeanne's parents because he and Nathan really needed a break from the camper) but not so quickly that I got a speeding ticket... that's all we need is ME getting a speeding ticket!!! Anyhow so I got to the The Children's Hospital and went upstairs. Because neither of us had eaten dinner we ate quickly and went back to Faith's room... I was really itching to be able to hold Faith. After over a week of not getting to hold anything but Faith's hand or her foot I really wanted to hold our baby!
A little while later after Kate (our nurse) finished doing some things I asked her if I could hold Faith. I never really realized that it might be a bit of an ordeal to get Faith all set with unhooking and rehooking up all of her cords and wires and such and making sure that her breathing tube was in the correct place. It makes sense now that I think about it, but I had never really thought about it prior to getting to hold her last night.
When Faith was all hooked back up and settled in my arms it felt so great to get to finally hold my daughter! It is indescribable the feelings I had as I sat there finally holding my daugher! It was the culmination of everything that we as a family have been going through for the past few months since we found out about Faith's gastroschisis. To know that she has made so much progress even in the last week that we get to hold her is very reassuring. Perhaps our hope of making it home by Christmas isn't all that unreasonable?!?!? I guess we will see. Because of the timing of everything I only had the chance to hold Faith for about 45 minutes... but wow did that time fly by! I'm really looking forward to holding her without all of the wires and the breathing tube! I know she needs all of them at this point, but it make me nervous that I might bump something or I might do something wrong... Raeanne keeps assuring me that it will all be okay and that as long as I'm careful I can't really do anything wrong or hurt her. I guess my nervousness comes from not ever holding a newborn that is hooked up to all of this stuff before. I have held newborns before... just never with all of the tubes and wires attached.
One thing that I noticed as I was holding Faith was that man she is STINKY!!! I guess that happens when you don't get a bath for over a week... our nurse today is Becky, and Raeanne asked her around noon if we could clean her up. We had to wait a little bit for the results of her last blood gas, but everything came back fine and Becky said yes. She gathered all the supplies, since Faith had never been bathed before, and we got to it. I am proud to say that we now have a beautiful little girl who smells like a baby should.
Friday, November 21, 2008
She is doing so well, resting very comfortably after hanging out with Mommy!!
Her heartrate is back and forth right now because we were just messing with her, but she's coming back down again without needing more meds to calm her down, so that's really good. Her blood pressure has been awesome today too. :)
She's trying so hard to wake up- the doctors don't want her to wake up until 3 though, so we keep reminding her that and telling her to go back to sleep... not sure why 3 is such a great time to wake up, but I think maybe Faith's showing us already that she doesn't really care what she's "supposed" to do... she's definitely a fighter!
Here's a picture I just took... one tube less than the last pictures, hopefully she will keep having less and less! (I can't wait till she gets that breathing tube out!!)
One of the other babies that got here right around the same time as Faith got to go home today. She was a 6 week old and had a twist in her bowel, which is one of the potential complications that can happen post-op for Faith... they did surgery on her though and she was only here for 9 days! I hope that everything goes well for them and they won't ever have to come back here.
I wanted to say thanks again to everyone who's thinking of us, praying for us, and posting comments. I posted links to the blog on a couple of the websites that we used to prepare for Faith's birth, and I hope that anyone who finds us through those gets some good information and is helped by what I'm posting here!
Sarah just told me I can hold Faith!!! :) :) Will post more later!
Faith's been struggling a little since the surgery. Her heartrate has been very high (an indication that she's uncomfortable) and she's had a lot of gunk in her lungs that she just hasn't been able to shake.
Faith's overnight nurse was Laurie, she was very nice and made sure she told me everything that was happening; I think she could tell I was worried. When she took Faith's temperature around 11, Faith had a fever. She was really pale, her tummy was red, and she had low blood pressure again, too. Laurie called one of the docs, who said that she should run a lab workup to rule out infection, and give her a bolus of fluids to help bring her blood pressure back up.
Around 11:30, a couple of surgeons came in to check on her. One of them was Dr. Bruny, who hadn't seen Faith yet, but she was the surgeon we met with before Faith was born. The bolus helped Faith's blood pressure, and Dr. Bruny said that her lungs sounded good. She explained that the fast heart rate, temperature, and red belly were all just probably a reaction to the surgery, but that they'd keep an eye on her and rule out any infection. Faith's been on antibiotics since she was born, so infection isn't really very likely. Hearing this news helped me go to sleep; I knew I didn't need to worry so much and that everything was still ok.
Friday, November 21
One of Faith's med alarms (to let the nurse know the med is done) went off around 4:00 AM. It's a good thing it did, because I had set my phone alarm to go off at 3 so I could get up and pump, but I totally ignored it and turned it off in my sleep.
While I was pumping, Laurie was in doing Faith's cares, and when I finished she was just getting to changing her diaper, and it was poopy! And it wasn't meconium this time, so it was real poop that actually had to go the whole way through her system! This is such good news, because not only does it mean that there aren't any blockages in her intestines, but it also means that her GI tract is already waking up and doing what it's supposed to do. There are two things the doctors have to wait on before they'll start letting Faith eat: she has to show that her bowels work, and her NG tube (the one that sucks out her stomach) needs to run clear. So she's halfway there, barely 24 hours after surgery! :)
Laurie also let me know that all of Faith's labs came back good, her blood gases are good (I had heard the nurses say yesterday that she was getting acidodic again), her heartrate and blood pressure are good, and her temperature is normal again. So even though she had a little bit of a backslide, she is doing much better now.
Knowing that, I was able to go back to sleep, until my dad came and woke me around 7:30. He came down this morning to donate blood, in case Faith needs a transfusion for any reason while she's here, since they have the same blood type. (Faith's type is A-; when they told me that, my first thought was that she'll have to have Rhogam someday when she's going to have a baby...) I am very glad that my dad was able to donate for her, even though he got back from deployment less than a year ago. I thought it was pretty cool of him to take the time off work to come down and do that, too :)
Faith's nurse today is Sarah again, minus Erica today. Sarah is very nice and easy to talk to, and she does a good job keeping me informed. Faith is starting to wake up a little bit; they're going to stop the paralytic drug today and let her wake up. She's been moving fingers and toes, and arms and legs a little bit, and trying to open her eyes. She just had a dose of morphine to help settle her a little bit, because as she's waking up her heartrate is going up a little bit (and I think I made her mad because I was showing off her belly button to Mary Ann, her nurse from last Friday).
I will post more later!
Thursday, November 20, 2008
Depending on what time it is when the surgeon actually comes in (not sure if it'll be Dr. Potter or the other dark-haired guy whose name starts with an S) I may or may not post another update tonight. I do plan to tell Laurie to let the surgeon know that if I am asleep when he comes in, he should wake me up; because I want to know about her lungs from someone who actually knows and is in charge of making decisions. I also want to ask if they still intend to start lowering the Atavan tomorrow...
This is the inside of Faith's room. There is a sink to the left (you can't see it) where we scrub our hands when we come into the room... my hands are so chapped now that they bleed! I've been using the lanolin the lactation people gave me for my nipples on my hands instead... The door goes to our own private bathroom. There is a recliner and a couch, and the couch pulls out into a full-size bed. There's a curtain that pulls across in front of the bed for privacy, and the nurse also brought me a privacy screen on wheels the other day that I pull out when I'm pumping.
I think this is the most amazing NICU ever... they have done such a good job designing a place that can be comfortable for parents as well as provide the best possible care for the babies. The floors and ceilings are all made from materials that absorb sound, so it is much quieter than the NICU Nathan was in at the old Children's downtown. We really only hear other babies' alarms if our door is open. There is also an area next to the Family Lounge where there are two sleep rooms for parents whose babies are in the pinwheels, and two bathrooms with showers for us to use; and in the other Family Lounge where my mom and I usually take the boys to eat, there is a washer and dryer. So they've really made it so that you could essentially stay here without ever having to leave the NICU. I am so thankful that we've had the opportunity to be at such a great hospital!