God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.
(2 Corinthians 1:3b-4, NLT)

Sunday, November 30, 2008

More good news!

Faith is doing so well! She looks wonderful, her swelling is much better. The chest tubes are draining quite a bit of fluid, so she has to have a significant amount of replacement fluids and electrolytes to keep her from getting dehydrated, but even with the extra fluids she is getting she's not as swollen as she was.
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

A New Approach, and Finally Some Answers

Tuesday, November 25, evening
So, today was one of the only times we've ever left Faith alone, without somebody at the hospital in case something happened. My mom and I had a couple of errands to run, so we went out quick to do them... we were gone maybe 4 hours. I'm not used to having a cell phone, so I had forgotten my phone at the hospital. We got back, and I thought it was weird that when I walked by the nurse's desk there were a couple of other nurses there, including the charge nurse, and I heard her say "Oh, there she is."
I went into the room and checked on Faith, because that made me a little nervous, but everything looked fine. I noticed her Fentanyl was dropped again, to 1.5 now, and her rate on the vent dropped from 35 to 32, but otherwise everything looked pretty much the same as when I'd left her. Then I went to check my phone, since I figured Dave had probably called, and I noticed a missed call from the hospital, and I really started to wonder what was going on. It took probably 10 minutes or so before Liz, the nurse, came into the room and told me that they had tried to call because surgery wanted to do a tap to drain off some of the excess fluid, and they needed my consent.
Then I got more nervous, and called Dave and my mom to tell them what was going on, and to get my mom to come up to the room so that when the doctor came in she'd be there to hear what he said, since sometimes I don't necessarily absorb the information as well when someone's just telling it to me, so I try to always have a second set of ears when it's something really important.
The nurse told me that the surgeons had talked to the neonatologists, and they had weighed the pro's and con's of the procedure, and thought that Faith would benefit from it. The neonatologists have been paying more attention to her the past couple of days. The surgeons are still in charge, but it seems like the neonatologists want to know more of what's going on. They even stopped outside her door earlier and talked about her while they were on their rounds.
While we were doing her cares, I asked when Faith's next feed was; Liz told me they weren't feeding her anymore. That was disappointing news. They had been getting more green stuff from the tube into her stomach, so they had to stop feeding until it went away again. I know she had one feed, I think maybe 2...
By that time, my mom and the boys were upstairs, so I went to let them into the NICU, and we came back to Faith's room. I told my mom what the nurse had told me, because my mom had the same initial reaction that I had to the news that they wanted to tap her- her doctor, Dr. Partrick, had seemed opposed to that idea yesterday, so we both wondered why he would change his mind today. I mentioned that Liz had said the neonatologists were involved in the decision, and said that I wondered if we could talk to Dr. Hall, the neonatologist who was directly involved. I went out and asked Liz to have him come down.
About 1/2 hour later, Dr. Hall came and explained the whole procedure and the reasoning behind it. I got to ask my questions, and he actually listened and gave me straight answers. (I think the surgeons should be politicians, because they all answer questions the same way, really talking around the question.)
He explained that the fluid in her chest is actually a pocket of fluid between the lung and the chest wall (the pleural space). He said that what they'd do is just put a needle into that pocket and drain it off, and what that would do for her is relieve some of the pressure on her lungs, and give them a chance to look at the fluid from a diagnostic view, and make sure that it's the kind of fluid they think it is (just "effusions", the fluid that leaks out of her blood vessels) and not from something else. He said that he called and talked to Dr. Partrick personally, and that they discussed the procedure together and decided it was the next logical step.
Hearing him explain everything made me realize that it really was something that was a good idea, and then Dave called and my mom told him everything Dr. Hall had told us (I was pumping). I talked to him after I finished, and we decided to go ahead and let them do the tap.
Dr. S (it sounds like Sandeval...) came into the room then and had me sign the consent, and I held her little hand while they did the procedure. They gave her extra medicine, so she went to sleep and it didn't hurt. It reminded me of an amnio; they stuck a needle with a catheter (kind of like an IV) into her chest, and then used a syringe and drained out the fluid. They took 80 mL (about 2.7 oz) of fluid out of the pocket by her right lung. They came and did an x-ray right after that, and said her right lung looked much better. They said they would come and do her left side the next day.

Wednesday, November 26
Mary Ann was our nurse again today. Dr. Potter came in around 8:30 or so to drain Faith's left side. I was pumping when he came in the room, so he just told me what he was going to do and then left until I finished.
He came back in and got all set up to do the tap. I held Faith's hands while he drained the fluid pocket on her left side; he drained off about 60 mL (about 2 oz) of fluid. They did another x-ray afterwards.
When the x-ray came back, it showed that all of the fluid was back on her right side. Once again, the doctors were stumped. They had been sure that when they got the fluid drained off, her lungs would expand and it wouldn't come back.
The good news was, all of the tests they had done for infections had come back negative. The tests on the fluid they'd drained from her right side showed that there were white blood cells in the fluid, but no bacteria.
The bad news was, that meant they didn't know why she was still swelling and having all of this fluid in her chest.
The doctors ordered an ultrasound of her legs to check for blood clots, and another echocardiogram to make sure her heart was ok and that all of the main vessels around her heart were functioning correctly and that there weren't any clots there, either.
The nurse practitioner came into the room to explain, saying that they were sure it was a clot, because if there was a clot it would cause the swelling in her chest and head. As soon as she said that, I got very worried, thinking of the possibility of stroke, cerebral palsy, etc if the clot moved...
Luckily, she came back a little while later and said there was no clot. Good news, but again, bad news, because once again, they had NO CLUE what the reason for the swelling was. She said they might have to put chest tubes in to keep the fluid drained.
She said that a doctor would be coming in to talk to me some more, so I sat around the room and waited. And waited. And waited. Shift change came, our night nurse was Amy, and I asked her if someone was still coming to talk to me. She had to call surgery with the results of a blood gas, so she asked them if someone was coming. The only person there was a resident, which means she's just learning and doesn't really know anything, so she tried to explain that there was no infection and no clot, so they were just going to keep doing what they had been doing. Not what I was looking for.
Dave and my dad came down after Dave got off work; we all ate dinner together, and the boys kept us entertained until it was time for bed.
Thursday, November 27
Faith is 2 weeks old today, Thanksgiving. She was very upset this morning. I think as she gets more awake, she is more annoyed at having the breathing tube down her throat, and based on the amount of air they get from the tube in her stomach every time they irrigate it, I am sure she probably has a stomachache (not to mention she's probably HUNGRY!).
She was also extra pale this morning... and looking pretty darn swollen. Dave and I saw the doctors go by on rounds, and I watched them the whole time they were in the hall, hoping that one of them would see me and realize I was still waiting for someone to come and talk to me. Just before they moved on, Dr. Hall poked his head in and said he'd be back to talk to us, and that they now had a PLAN!
This was exciting news. I told Dave not to be surprised if the plan was to put in the chest tubes to keep the fluid drained. We hoped that having a plan meant that maybe they had an answer WHY she is swollen. I called my mom and told her that the doctor was going to come and talk to us, and that they should come in so they could be here when he did.
Finally, Dr. Hall came back to talk to us. He explained that they know now what is causing the swelling, and why the fluid came right back. He said it is not normal "effusions", fluid that leaked out of her blood vessels. He said that it is fluid from her lymphatic system, called chyle. It was leaking from her thoracic duct, which he said goes from the intestines and empties into the vascular system in the chest. This duct is the one that deals with fats that we eat, particularly long-chain fats. They could tell it was chyle because of the white blood cells that were in the fluid from her right side; the cells were lymphocytes, which indicated that the fluid was chyle. He said the condition is called "chylothorax", and usually happens in babies as a result of post-surgery trauma, but that it is very rare after gastroschisis; it usually happens in babies who've had surgery in their chest. (I actually read an article written by a surgeon about the condition, and it lists the frequency as 0.2-1%, after cardiothoracic surgery, which is surgery in the chest... so I'm guessing it's probably even more rare when there hasn't been any surgery in the chest...)
He told us that their new plan would have a 3-pronged approach. First, they would insert chest tubes on both sides, to keep the fluid drained. Second, they would use a medication called octreotide, to help the thoracic duct stop leaking. Third, and most disappointing, they would not feed her until after the leaking stops. And, because the predominant fats in breastmilk are long-chain fats, when she is able to start eating, she will not be able to have breastmilk, because those fats would cause the leaking to come back and the fluid to build up again. He said that this doesn't mean she will never be able to have breastmilk, but that it will probably be a few months until she is able to process those fats. So I guess the pump is going to become my best friend over the next couple of months... I hope that I will continue to have as good of a supply as I currently have, so that once she is able to breastfeed, it will still be a possibility.
Dr. Potter came around 1:00 to get our consent and start getting things together for the procedure of putting in the chest tubes. He also told us that they'd be putting in a PICC line, to give her medications through. Because everything needed to be sterile for the procedures, we had to leave the room, so we decided to go ahead and leave early for Thanksgiving dinner.
We went to Traildust Steakhouse, they were doing a Thanksgiving buffet to raise money for a charity program called Step 13.
When we got back, Faith looked so much better. Her face was less swollen, and her chest seemed to match her legs and arms better. Her headband is almost too big again!She was also much more comfortable, resting very well, but not completely drugged. She even opened her eyes and spent time looking at me, Dave, and my mom.
We aren't able to hold her anymore until her chest tubes are out, but just knowing how much better she is doing with them in makes it ok, and hopefully they should only be in for a week or so, until the medication works and the fluid stops coming back. And, once the tubes are able to come out, the ventilator should follow quickly.
Dave and my dad had to leave tonight to go home; Dave has to work in the morning and my dad is going elk hunting. They'll go hunting together on Saturday, and then come down either Saturday night or Sunday morning. I think Faith will be doing much better by then, and Dave will be really happy with her progress.
Please pray that this is the answer, and that the doctors' plan will work, and that Faith will not have to be on formula for an extended period of time.


Tuesday, November 25
So, today is a better day. Our nurse last night was Joanna, and she was really good. She could tell I think that I was upset, and was sort of "fishing" to find out why, and so I told her that it was just really discouraging and frustrating to feel like I really didn't know what was going on. So the next time she was out at her desk, she caught a charge nurse walking by, and told her that I felt that way, and the charge nurse told her to call surgery and have someone come up right away to talk to me.

Well, all the surgeons had just left to go home, the only person there was a research fellow, who never sees patients and doesn't know anything about cases.

He said though that he would make sure Dr. Potter got the message, and that someone from Faith's primary team would come up and talk to me today. So Joanna came back in and told me all of this, and told me to write down any and every question I have, and make them give me answers. She told me that it kind of sucks when babies are followed just by surgery, because then they are the only ones who can really talk about the baby, and they're so busy it's hard for them to get a chance to really spend any time with the parents explaining things. So I started a list of questions last night. I feel sorry for whatever surgeon gets stuck coming up here...

I was awake pumping this morning when the surgeons came by on rounds, so I was able to hear some of what they said. None of them talked to me, but I understand why now since I talked to Dr. S last night. He explained that when they go on rounds, they only have like an hour to see all the kids they have in the NICU, so they have to hurry and get through them as fast as they can. I have to say, it's not very reassuring to hear your baby's doctor (Dr. Potter) say that he doesn't know why she's still swollen. I heard him tell the nurse to run a bunch of cultures, blood, urine, and trach. I went back to sleep after they left, since they come so darn early (6 AM).

When I woke up at 8, the new nurse was here. We have Liz again today. I was going to ask someone that we not have her again, but I figured I'd give her another chance, since there have been a couple of nurses I really didn't like the first time we had them, but then did like the second time. She seems to be better today.

She explained the cultures to me. Basically they will take a sample of blood, a sample of urine, and a sample from her throat, and they will run a bunch of tests to check for pretty much every infection under the sun, to see if there is some "other" reason for her swelling. They were doing the throat one when I woke up. Faith didn't like it much. Until that one comes back negative, now Faith is in "droplet isolation". Doesn't really mean much, other than now anyone who comes into the room (staff-wise) has to put on all the gear they had to wear when she first came, when we were waiting for the MRSA test to come back. So they have to wear this yellow gown thing over their clothes, and gloves and a mask.

They're still doing Lasix and Albumin today... maybe today will be the day they actually work.

So, like you can probably tell from the title of this post, I did get some good news this morning too. They are going to start feeds today! They will start out VERY slowly... just 3 mL every 3 hours, with no increases or anything, but it's still a big step in the right direction! They will take out the OG tube that sucks out her stomach, and put down a new tube that they will give the breastmilk through. It makes me feel much better, because if she did have some kind of an infection or something, I know it will help her to get breastmilk/colostrum, even if it is such a small amount. It will definitely make it feel more worth it for me to pump, too.

Speaking of pumping, I tracked how much I pumped all day yesterday... and between 10 PM Sunday night and midnight last night, I pumped over 68 ounces! (A gallon is 64 oz!) It's funny, because I had just joked the other day that I figured I was probably pumping a gallon a day...

Mom and the boys are back down here now; hopefully the break the boys got by going home this past week was good for them and we can start to settle into some kind of a routine. I know I will be much less lonely.

Faith is getting feisty... she's really getting sick of all these tubes and wires I think. Her arterial line stopped working again this morning, so she gets to have 2 feet again. She doesn't have any IV's, just the Broviac. So the only other things she has that go into her are the OG tube that empties her tummy, and the breathing tube. And she has grabbed onto both of them a number of times the past few days, threatening to take them out. She's been trying to cough it out, too. I keep reminding her that she just needs to be a good girl and pee a whole bunch, and get less swollen, and then they will take the dumb breathing tube out. Then once she starts really pooping, and as long as she doesn't throw up a bunch or anything like that, they'll start increasing her feeds, and then she will get that tube and the Broviac out, and she'll just have the monitors hooked up and nothing going in.

Everyone who comes in to do anything to Faith goes on and on about how cute she is. :) I can't wait to see how cute she is when she's not as swollen... and yes, I do think she looks a lot like Noah. I probably annoy Dave because I go on about their similarities, but he didn't get to be there when Noah was a little baby, so I guess I'm just trying to let him have that experience vicariously through Faith. I sort of knew ahead of time that they would look so much alike though, because the profile ultrasound pictures of her and Noah looked EXACTLY the same. I still think she has Dave's eyes though. Not sure whose mouth she has, since I've only seen hers for that little bit of time before she was transferred over here... But thank God, she got my nose! ;)

I think when I get discouraged, I need to go back and look through pictures from the beginning, and remind myself how far she's come...
She doesn't need a nurse to hold onto her blood vessels where her cord pulled off anymore...

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

needing prayer

Monday, November 24, evening
I'm feeling extra discouraged today.
I just got to talk to one of Faith's primary surgeons (FINALLY- I hadn't seen any of them in at least 2 days). Her head surgeon (Dr. Partrick) did not think doing a tap would be a good idea, so they aren't going to do that. This surgeon (Dr. S, I can't ever remember his last name) is one of the ones just below Dr. Partrick, on the same level as Dr. Potter I think. He was able to answer a few questions for me, and help me stop worrying, but it's kind of more of the same... her swelling is just an inflammatory response from the surgery (he didn't seem to think it is necessarily abnormal or unexpected that she's still swollen, despite what the surgeon this morning said), and they're doing everything they can really to get it off. There really aren't any lasting effects from her being swollen for so long, other than sometimes the fluid can back up into her lungs, which causes breathing problems. They had already told me there was fluid in her lungs, and today Mary Ann told me that there's fluid outside of her lungs, too. That's why it's so hard for her to breathe. He also explained that some of it has to do with the fact that her little liver is working so hard to process all of these medications they've had to put her on.
Mary Ann left today at 3, Rachel is here now until shift change at 7.
I am feeling very frustrated that it seems like they're doing everything they can about her swelling, but none of it is working. I am glad that I put that headband on her, because it gives me an easy way to tell how swollen she is at any given time, without going back and comparing pictures... Her bed is still tilted... but it doesn't really seem like that's doing much in terms of helping the fluid come off. She pees a lot after she has the Lasix... but not so much when she doesn't have it.
Please, I know that everyone is praying for us, but please pray specifically that Faith's swelling resolves soon, that her little organs continue to function as they should, and that God will continue to give me strength, PATIENCE, and encouragement through this wait-and-see game... patience has never been my strong point...
Thank you to everyone for continuing to keep us in your thoughts and prayers. I hope that the news will get better soon.
I take a picture every time I write a post... but looking at this one compared to the last one, they look almost the same. I guess you can tell where Faith likes to keep her arms and hands... not too surprising since her hands were up in her face for EVERY ultrasound I had (and I had a lot of them!). I don't think she's going to be a big fan of swaddling with her arms in...

Outside of "Normal"

Monday, November 24, morning
Faith's headband is looser today... so we have a new way of measuring how swollen she is. She is still swollen though, which like I said last night is kind of the root of all of the other issues she has, and the reason they're having such a hard time getting her off the ventilator. She's resting really well though, so well that she's actually barely breathing over the vent, so they're going to lower her Fentanyl again.
I asked the surgeon today what the normal range of time is for the swelling to go down; he said she is already beyond what is considered normal, and they would have expected it to have gone down by now. He explained that the fluid is due to an inflammatory response in her body from the surgery, and the inflammation has made her capillaries leaky, so instead of the fluid draining through her veins like it's supposed to, it has leaked out into her tissues. They are giving her more Albumin to try and get it back into her blood vessels to drain out of her body, and they are going to come later today to do a tap, at least on her right side but maybe on both (her right side is worse on the x-rays) to drain out some of the excess fluid.

Faith's potassium was low this morning, so they have been giving her some to balance those levels out. It is such a game of balancing things, making sure she has what she needs, without giving her too many fluids, because they don't want her to have more reason to swell... they've cut her TPN (nutrition) way back (in fact I'm not sure she's getting any right now with the potassium going).
A nurse came by earlier and asked if I'd be willing to have Faith participate in a study they're doing on some new pulse ox probes (the little thing with the red light that tells her oxygen saturation in her blood), and since it's non-invasive and they can only do it on babies with an arterial line in, which Faith just happens to have again since yesterday, I said yes. I participated in another study, too, when I went in for my amnio at 37 weeks- they were studying whether certain measurements at the ends of some of the bones in her arms and legs correlate to the results of the amnio in terms of lung maturity, with the point being that if they can figure out the correlation, they wouldn't actually have to do amnio's anymore, they could just do an ultrasound and measure those parts of the bones, and get the same results they get from the much more invasive amnio.

I think it's kind of cool to be involved in different studies to advance the way they do things, and learn more about certain things... if there was ever a lupus study that I qualified for, I'd probably consider it, and if anyone ever contacted us doing a study about what causes gastroschisis, I'd DEFINITELY be interested, especially since we really don't fit the demographics of what they know for who usually has it (young moms, moms who do drugs, etc), and because of my lupus and the possibility of finding some kind of weird link between the two.

Anyway, that's what's been up today so far... Dave left early this morning to go back to work, and won't be back till Thursday... he did get to hold Faith though for awhile this morning before he had to leave, so I am sure that made his day, even though it meant getting up earlier.
I will update more probably after they come to do the tap.

Sunday, November 23, 2008

No More Heel Pokes

Sunday, November 23, evening
So, Faith's blood gases have still been borderline, although Ayanna, our night nurse, said the last one was much better. However, because they have to take them so frequently, they are constantly poking her little heels, which she obviously doesn't like much. So, the neonatologist decided that they should put in a new arterial line so that they don't have to poke her anymore to get blood. They put it in her left foot.Unfortunately, that means that Dave doesn't get to hold her tonight... they want to be sure that it's going to stay put and they can get some good gases from it; but hopefully after she rests tonight, he can hold her for awhile before he leaves for work in the morning. Otherwise, we'll just hope and pray that all of these extra tubes are out by Thursday, and she can be held pretty much the whole day.
Other than that, she is doing really well, recovering much faster when she gets upset, and resting more comfortably. Her OG tube (the one that goes in her mouth down to her stomach to suck the bile out) is actually not suctioning anymore, it is working just by gravity now, and when they do suction it, very little is coming out, which combined with the fact that she's having more and more bowel sounds, is a really good sign that things are starting to work the way they're supposed to.

I heard today that some of you are worrying about her lungs, so I wanted to reiterate that her lungs are healthy, there is nothing wrong with them. She has been slow to wean off the ventilator mainly just because she is holding on to extra fluid, which is perfectly normal considering she just had major surgery 4 days ago, and really can't change positions or anything beyond going from side to back to other side, to let the fluids drain off. But please don't worry about her lungs, they are perfectly healthy, it's just because of the stress of having surgery and the fluid retention that she is having to work extra hard to breathe, and still needing help from the ventilator.

I was talking to my mom earlier, and I said I think that it is because she has had a few really good days, so when she has a day that is pretty much just normal, it seems more like a bad day, even though it's to be expected considering the situation. So even though I might be more pessimistic sometimes when I post about her progress, she really is doing wonderfully, and her rate of progress is perfectly normal.

I am glad that people are enjoying reading this, I am definitely enjoying writing it, and it really helps me to process and deal with things as they are happening. I think it will be cool too, for Faith to read this someday and be able to really understand what she's been through.

The Bright Side

Leave it to me to find the ray of sunshine in things... kind of like how I was thankful for my lupus, because it made us find out about Faith's gastroschisis... anyway, the one good thing about Faith's swelling- it makes her head a "normal" size, so her little headbands fit! Now people might stop calling her a boy...

Ups and Downs

This is Raeanne posting again. Anytime Dave posts, we'll make sure to say it's him, but otherwise you can pretty much assume it's me.

Becky's our nurse again today. They did another chest x-ray this morning. I think pretty soon Faith's going to glow in the dark from all these x-rays... Anyway, when I got up this morning, she was pretty upset, and Becky was trying to calm her down. I was able to get her calmed pretty well, but then her IV wasn't working anymore, so she wasn't getting her meds like she's supposed to, and that was making her more mad. Becky told me her gases were still borderline, and her x-ray looked worse again this morning, her lungs were a little more wet again.

They're giving her Albumin to try and help her excess fluid get into her veins so she can pee it out. Her face is pretty swollen again, and she's still just got a lot of excess fluid sitting there, especially in her chest and lungs. They've been measuring all of her diapers, and they want her to pee out more than she's getting in, so they know she's getting the excess out too... if the Albumin doesn't help, they'll give her another dose of Lasix this afternoon.

She got weaned down on her Fentanyl again in the night, she was at 4 after surgery, then they took her to 3 yesterday, and now she's at 2.5. They didn't make any changes to her vent though because of her gases, and probably won't again for a little while still. I think the whole vent thing frustrates me more than anything else, because before they put it in, she could breathe just fine, and now they can't take the dumb thing out because she's not breathing as well. I know it's because of the excess fluid in her lungs, which is because of the surgery, but it's still hard because getting that out is such a big step in the right direction.

I did suggest raising the head of her bed to get some of that fluid moving out of her lungs, so we're trying that. I know when Noah was littler and still in a crib, and he would get congested in his chest, I would stick pillows and stuff under the head of his mattress to raise it up and get some of it cleared out, so hopefully it will help her, too. It's got to be better than having her flat on her back...

She had a little Atavan again this morning because she was so upset and not really calming; she's been better since she had that, she didn't even really get upset when they had to do an arterial stick to check her gases. (They usually poke her heel to check her gases, but Dr. Potter wanted to make sure the heel pokes were consistent with her arterial gases.) I found out the other day that the drug they used to paralyze her was actually something different, the Atavan is just to help her stay calm (which makes sense, since it's an anti-anxiety med for adults). So in the previous posts where I talk about them cutting back on the Atavan to let her wake up and move, I really mean the other drug, which I didn't really catch the name of, I just know it was something that sounded like "pink"-something. Some of the nurses are much better at keeping me informed of what she's on than others...

They aren't going to start another IV right away, they're going to just do everything through her Broviac for now (her central line, where she gets her nutrition, it's actually sutured in and is much more permanent and lasting than an IV). They just don't think it's worth it to upset her again, when they can do it that way and avoid more pokes. I know with as much as I hate having an IV put in, she probably doesn't like it much either. And they're running out of places to poke her... I think she's pretty much had IV's everywhere but her head (and I hope that they'll never have to put one in her head, I think that's the worst!).
The other thing that's so frustrating for me, is that it seems like she'll have a REALLY good day, like yesterday, where nothing seems to bother her, and even when she gets upset, her stats stay ok and she calms back down right away, and then the next day is way worse again. I'm hoping since it's still early, things will just get better today and the rest of the day can be better.

After the way the morning started though, I really didn't feel like we should leave her alone, so we're going to watch church on the computer today instead of actually going. It's kind of cool, the church we're going to down here (Calvary Chapel) actually does a live webcast of the entire service, including the music. As much as I am enjoying the church down here though, I am really looking forward to getting home and going to our home church again. This church does feel like a good fit for us, and has been a wonderful blessing to us in the time we've been down here, and even though it's been a good "home away from home", it still isn't home.

On a brighter note, I got to hold Faith for awhile again last night. I can't wait until she has less tubes and wires and it's easier to hold her more often. I think she is going to be a very spoiled baby in that way... I'm pretty sure she'll be held an awful lot after all of this, I know I will be wearing her in one carrier or another as much as I possibly can once we're home; the swing probably won't get much use.

After I held her it was time for cares, and she woke up, so we actually got a couple of pictures with her eyes open! Dave and I can now do almost everything involved with her cares, which is nice because it makes us feel less like "bystanders" and more like parents.
The surgeons just came by on rounds, none of them were anyone I recognized, and it was just pretty much more of the same in terms of what they said. They said her belly button looks great, and it's just a matter of time, getting her off the vent, and getting her bowels working so they can get her off the TPN and start feeding her. Becky did say Faith had a little smear of poop last night, after they gave her a glycerin suppository, so once again, that is a good sign.

Dave just asked Becky for more details about the suppositories; she told him Faith has one once every 24 hours, and the 24 hours re-starts at the time that she has any progress with pooping, so whatever time she had the smear last night is what time the 24 hours re-starts, and if she were to poop at like 3:00 today, the 24 hours would re-start then.

So, pray for poop! Also, the tube suctioning her stomach was better explained to me the other day, and the way it works is that as things start moving through her bowels, there's nothing left to come up the tube but spit that she swallows. So the more poop, the better! Becky did say she's got more bowel sounds going on, so that's good progress.
When we got back to the room from eating lunch, Becky was just finishing Faith's cares, and Faith was a little upset, so Dave gave her his finger... and she wouldn't let it go! So I got a couple of cute pictures of that :)

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

Daddy's first post

I'm making Dave write in this post, since it is going to be about him finally getting to hold Faith for the first time :) We are loving reading all of the comments, knowing that everyone is enjoying reading about Faith's progress... but sometimes we are having a hard time figuring out who different people are... So could you please just sign your name at the end of the comment, so we can know who's been reading? Thanks! :)

So when I got the phone call from Raeanne on Friday telling me that she is finally holding our daughter it REALLY made my day! I had been having kind of a crummy day at work being overwhelmed with all the work that I needed to get done and I had just gotten out of a staff meeting that was filled with a bunch of information that really didn't make my day! But talk about a massive turn-around! It's amazing how God works sometimes!
Anyhow, so when Raeanne called and said "guess what I'm doing... holding our baby!!!" I had mixed emotions from jealous to excited to get off work and go straight down to Denver to see my 2 beautiful girls... Raeanne and Faith. Because I have have been working 4-10 hour days my work days have been a little longer than I'm used to but because of the news on Friday my afternoon could not have moved any slower!!!

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.

Another cool thing that happened today was that as Raeanne and I were downstairs eating breakfast, someone who recognized us from the Vineyard in Fort Collins (our home church) walked up and began to talk to us. Neither Raeanne nor I could figure out how it is that she recognized us, but we thought it was really cool that she thought enough to come up to us and to introduce herself to us. It turns out that she is down here with her daughter to have surgery. It's pretty cool how God works sometimes! To bring someone into our lives, even if only for 5 minutes or so, that is from our home church to know that we and our families are not alone in this situation.

Having been here every day, and spending so much time with Faith, I am SO impressed with how well she is doing today! Her vitals are amazing, and even when we bathed her, something that could or should have upset her, she stayed nice and calm. :) I think she was thankful for the opportunity to get cleaned up; she is resting wonderfully now. I can't wait to hold her again, I think Dave and I are both looking forward to doing that again today :)

Friday, November 21, 2008

funny :)

Dr. Potter just came by to check on Faith. As he came into the room, he said I look different today, and asked if I did something different to my hair... I said it was probably just because I'm so happy I got to hold her, and all those happy hormones must be covering my pain... but yeah, I should look different, considering he usually sees me at 6:00 in the morning, in a nightgown with bed head! I thought that was kind of funny :)

Anyway, he said Faith is doing great, and they plan to extubate her tomorrow or Sunday!! :) :) Stay tuned for pictures where you can actually see her pretty little face!!

Thank you!

I want to say a HUGE thank you to everyone who has brought us meals! We appreciate them more than we can say, and it is such a huge stress reliever not to have to worry about food! You have made it so that we never even have to leave the NICU, and we are so incredibly grateful. I am overwhelmed at the kindness of so many families at a church we are really just visiting while we are down here. I am so glad that we found Calvary Chapel, and everyone there has been so incredibly nice and helpful, we will remember it forever!
And to the ladies of DAP, again most of whom I have never met in person, thank you also for the meals, help, and kind thoughts and words.
To everyone who has sent gifts and cards of encouragement, thank you. The love that everyone has shown for our family is truly a blessing from God.
To our parents and family members helping us and praying for us, thank you guys too! We can't wait to have some great family get-togethers when Faith is out of the hospital!
And Faith wanted to send a big thank you to her Uncle Anthony and Aunt Anna for the pretty butterfly and balloons that just arrived!

She is doing so well, resting very comfortably after hanging out with Mommy!!

Oh Happy Day!!

So, I got to hold Faith for over two hours :) I could have held her longer, but by that point my milk had let down three times, so I really needed to pump! I can't wait to hold her again though, and for Dave to hold her, too! :) It was so good for both of us, for me to finally hold her after 8 days felt SO good, but the good it did for her was really obvious- her heartrate really hadn't dropped below 140 since before her surgery, but pretty much as soon as they gave her to me, it went into the 120's and 130's! And it has stayed there since then :)
I love it that this hospital is so in favor of parental involvement :) They are very supportive and encouraging with breastfeeding, and they totally push for parent interaction, kangaroo care, and such. We are SO blessed that we are able to be here with Faith!

They've weaned her down on her oxygen twice this afternoon, she's down to 27 now, 21 is "room air". Assuming her blood gases come back good when Sarah checks them at 5, they will probably take it down more! She is doing so great, she'll be extubated before we know it! :)

Friday noon

I just got back to the room from eating lunch and Sarah just finished Faith's cares. She said she had a really good blood gas, and she peed a great amount, so Sarah took out her catheter! :) Faith had been peeing around the catheter for most of the time that it was in. It's so good, she's really draining a lot of the excess fluid and starting to look a lot less swollen.

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!

Thursday night/Friday morning

Thursday evening
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).

If you look at her eyes in this picture, you can see she's trying to open them

I will post more later!

Thursday, November 20, 2008

Thursday afternoon/evening

The afternoon was pretty much the same as the morning today... because she is so sedated, she really just lays there, and when you change her diaper and stuff she feels like a rag doll, just really limp. She is still having troubles with gunk in her lungs and her tube not being in exactly the right place; they've done a couple more chest x-rays on her, and one of the surgeons is supposed to come in sometime tonight and check on her.

Dr. Potter came in while I was in the shower (somehow I had great timing today and missed him every time he came in...) and ordered her another dose of Lasix. They are watching her lungs very carefully, and her night nurse, Laurie, told me that the last x-ray showed that her right lower lobe is not as aerated as it should be. So it's sort of wait-and-see with her lungs, it seems... I don't doubt that she can breathe on her own though, I really think it's probably a lot to do with the swelling and sedation. She's been breathing over the vent a few times today, and when she does that, they have to give her more sedative, because they don't want her fighting it so much.
Her heartrate has been very high for most of the day, too... but hopefully that, too, will resolve itself over the next day or two post-surgery. It's sort of discouraging almost, that she was doing better on these issues before the surgery, but I try to just remind myself that she's all fixed now and all of these things are just the only way her body is able to react to the fact that she had surgery yesterday. I've never had a major surgery, so I can only imagine what her little body is going through...

Her blood pressure is really low again... I wouldn't be too surprised if they put her back on the Dopamine... we'll see what the surgeon says when he comes by.
I did get a chance to take a much better picture of her belly button. She will have basically a little dimple of a belly button, with another straight scar extending from the right side of it, where the tape is.

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...

Your unofficial Denver Children's NICU tour

This is the camper, out in parking lot 10... a nice little walk from the hospital, especially when it's 39 degrees out!A view of the hospital from the camperA view of the hospital from the frontThe boys call this elevator the "rocket ship"- it's all glass and it goes WAY too fast!This is a view of the "Boettcher Atrium", inside the main entrance of the hospital, from the 4th floor, where the NICU isThe boys really like this butterfly picture, Noah likes to count the butterfliesThe entrance to the NICU waiting roomJust inside the door of the NICUThis is the NICU milk bank. They have a really great system for handling the breastmilk that moms pump. I think their freezer is probably half full just of my milk, since I just keep adding and none is getting used...The entrance to the room where we go to eat. This is one of two kitchen areas in the NICU; when I'm alone, this is the one I eat in, just because our food is all in it, but when my mom and the boys are here, we usually eat in the other one because it's a lot quieter.The eating area in the Family Lounge. There is also a couch and some comfy chairs, and a TV and DVD player in this room. Mostly the families who have babies in the pinwheels hang out in here. I just go in here to eat, since we aren't allowed to eat in Faith's room.This is the door to Faith's room. She doesn't have her name on her door yet... we need to fix that. The sign on her door is to remind people to shut the door at night- the only ones who consistently do this are the surgeons. The nurse's station is directly to the left of our door, between our door and the door of the private room next to us. I've never actually asked, but I'm pretty sure there is one nurse for two babies- so our nurse takes care of Faith, and then the little boy who's our next door neighbor.
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.
There's also a closet/cabinet to the right when you go into the room, and plenty of other cupboards and a couple of drawers under the couch that we are using for storage. We have our own TV and VCR/DVD player, too. We are very lucky and blessed to have a private room right from the start... most people start out in a pinwheel and get to move into a private room later, but it just happened to be that someone left right as Faith came, so we got right into this room.This is Faith's area of the room... all her tubes and wires and monitors... The red sign hanging on the side of her bed is to remind people to actually tell me who they are and what they're here for... but no one sees it there so I think I'm going to put it on the door, too. I can't wait for the ventilator to be out of the room (that's the machine in the left corner of the picture) because it takes up lots of space.A closer-up view of Faith's bed and all of her stuff. The blue sign hanging under her name sign on the bed tells how to pronounce our last name, but no one looks at it, because they still all say it wrong.

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!

Total site visits: