Rare Bird

This "homebound" business is for the birds....

So, almost two months after coming home, we have settled into a beautiful and comfortable routine, well, as much of a routine as having a baby allows.  :)  For those of you who have followed our blog (or us on Facebook), you will notice that we made some changes to old posts this week.  We took out all places where her name was mentioned and we'll refer to our sweet girl as "Babybird."  (This was the compromise that me and "Papabird" reached because I wanted to put pictures on the blog and his number one concern is keeping our family safe, so for privacy reasons, we've modified some.) 

Babybird is doing great!  She weighs almost 13 pounds now and while that may not seem much for a 4 1/2 month old, compared to 2 pounds, it's HUGE! She still is on a heart/lung monitor to alert us episodes where she holds her breath and drops her heartrate, but thankfully, those are getting fewer and more far between.  SO...we still battle daily to keep her well and illness-free.  Due to her weak immune system, we still are considered "homebound" so all of her physical therapy and developmental checks are done in our home.  (Which is nice, because I bake when I get stressed out, so it gives me someone to share cupcakes, apple bread, muffins and bread with!)  However, we are venturing out more, just to keep "Mamabird" sane--the people at the drive through at the Coffee Zone know us well.  :)  So, we do "drive-by" visits for her great-grandparents and aunts and uncles, and we still limit our visitors.  Which is SO hard when you are as social as I am.  But...again, I would do anything to keep her well! 

So, her first Halloween provided lots of "wardrobe" changes as she spit up on a number of things before it was even time for our trick-or-treaters to come to the porch, so by the end of the night it was mostly just a onesie and a headband.  So, we met our trick-or-treaters at the door and folks peered through the window.  Lame, maybe, but you only get one first Halloween.  :)

 
But she's doing great.  She's breathing better, eating better, sleeping a little better (whew) and hitting those milestones.  I'm sure that parents of full-term babies monitor milestones like turning over, holding their head up, etc pretty closely too, but when you have a staff of therapists, doctors and nurses who keep check, it can get pretty intense.  But, still we let her call the shots.  She's further ahead than her developmental age (1 month) but still behind her chronological age (4 1/2 months) so she's leading us here.  She can flip from belly to back, hold her head up a little and track me and "Papabird" with her eyes and those smiles are worth waiting all day for!

A lot of what the therapists do with her is baby massage, so we've learned LOTS about how to help her calm down, loosen her legs and just enjoy time with her doing baby massage.  It's great...it's another silver lining to this whole ordeal--we get training in all sorts of cool stuff.  :)

But she's like any other baby these days--she loves her swing, her tummy time mat and ADORES being worn in the sling.  (You can't spoil a preemie I've decided...they can never get too much love or bonding...we've got MONTHS of seperation to make up for!) 

I have an old friend who has really gone through a crisis the past few weeks and her husband posted some stuff on his blog last week that made me realize how little people know about how to help people who are hurting.  So, this week, I'm going to work on a post for how to help people who are hurting--practical, real ways, NOT based in bumper-sticker theology.  My hope is to post more.  It helps me feel a little more connected to the "outside" world.

So, thank you for continuing to support us and pray for us.  We are so blessed!

Home is where the heart (monitor) is...

So, four days into our sweet girl coming home and we finally had one of the diaper blow-outs that our "Babybird" had become so famous for at the hospital!  (However, not having a maintenance man to change curtains or a housekeeping/laundry staff to clean up the wreckage made it MUCH less amusing at the time!)  So, the baby is bathed, Mommy is bathed, the walls are scrubbed and linens are changed and she is sleeping as if nothing had ever happened.  :)  Welcome home!

Her first pediatric appointment was Thursday and I laughed when the nurse commented, "Big day...It's her first doctor's appointment."  I laughed because I thought about how actually it was only the 2nd day in her life that she hadn't been seen by a team of doctors.  Ha!  It went really well...she is up to SEVEN POUNDS!  The doctor was great as well.  Since she's so little (while she is 7 pounds, she's also almost 3 months old...so still tiny in comparrison) and since her immune system is so fragile, we sit in the car until the nurse comes to get us and that way we aren't exposed to stuff in the dr. office.  Then, a nurse sits with her in the exam room while I check out and we leave sans icky waiting room again. So, they are being great about recognizing that she is a "special needs" baby (or "high maintenance" as I prefer to call it!) and helping us to keep her well.  I had to laugh though because the sweet doctor shows us the chart and talks about percentiles and stuff and we realize that it will be a while before our daughter's "dot" even shows up on the chart.  They don't make preemie growth charts, so it'll be a while before she catches up enough to even be close to the curve (much less on it.)  See...she's off the charts already!

So, now we wait on her surgical appointment next week to evaluate her HUGE belly button hernia.  Our hope is that the decision remains as it was--"Let's not operate.  Let's wait."  But we'll see what he says.  It's not hurting anything right now and it's large enough that it will likely be ok for a while, so she might grow out of it when she starts using those abdominal muscles.  (And no, grandma, we're not taping a nickel to it.)

So, we eat, sleep, poo and start the cycle over again.  It is so precious to have her home and have things feel like a normal family with a newborn--being exhausted, eating junk because you're too tired to cook, wearing PJs all day, smelling like spit-up and barely having time for a shower.  :)  After all that we've been through, you'd be really surprised at how precious and comforting those "inconveniences" are now.  The only real difference is that we can't have visitors or get out (which in all actuality isn't all that bad after all...but it's only been a week!)  So, after a doctor's appointment, we did do a couple of "drive-bys" for family and let them say hello through the car window while she was snug in her carseat, still hooked to her heart/lung monitor.  I've said this week, "She's not totally wireless yet, but she is portable." (And let me tell you, they tell you that for every 10 times the monitor alarms, that 9 of those may be false alarms, that doesn't stop me and Andy from breaking our necks running to check on her when it goes off!)

Again, our biggest challenge now is keeping her well until she gets stronger, by limiting her exposure to stuff.  Six months ago, I would have thought, "Wow...that's extreme.  How overprotective."  But again, once you've seen your child fight so hard to live, you'd do anything within your power to keep her safe.

But, her little seven pound self is happy as a lark in her swing, her big crib, with the lights on and some soft background noise (we're trying lullabies on the record player, but so far she prefers people talking.)  See, there are advantages of raising a newborn in the NICU--they can sleep through anything!  She's still tiny enough to wear preemie cloths but we can wear newborns too, if they are short in the legs.  You see, they make preemie clothes for babies who are long and skinny--we are neither of those things.  So, we tie up the legs so she doesn't get lost and then we bulge at the snaps.  :)  (She clearly takes after me and not Andy in that respect!)

So if you've called and I've not answered, I promise I'll get back to you.  And if you are still waiting patiently for a thank-you card for a sweet baby gift, I promise they'll get out soon.  But I'm thinking that you all will forgive me if I'm a little late--I'm being dazzled right now staring at this precious baby girl that we've all prayed so hard for, thinking how amazing it is that she is home. 

 

Going Home!!

Well, the news is in--we are headed home tomorrow.  Hubby and I have to complete our "home monitor training" and our final Infant CPR certification this afternoon and then we "practice" with the new monitor tonight.  Then, in the morning..."Babybird" gets to smell the outside air, see the sunshine and feel the wind on her newly-chubby cheeks for the very first time in her almost 3 months on our planet.

I've already spent the first part of the morning (and a tiny bit of yesterday) crying sweet tears as we say goodbye to some of our favorite nurses, doctors, social workers and therapists.  These people have been responsible for keeping my child alive on a daily basis and I have grown to really love many of them.  There will come other people in her life that I will be thankful for, but I will NEVER forget how precious this "family" has been to us in our time here.  They have laughed and cried with us, encouraged and blessed us and supported us all along the way--all while keeping my daughter breathing/eating/living.  I could not have asked or prayed for a more precious team...and I will never forget their kindnesses.  We've made precious friends through this (NICU parents and nurses both) that I will cherish for many years to come.  We have been so blessed.

So, we will be heading out in the morning (as long as Babybird does OK tonight).  We'll be taking her home on a monitor which will track her heartbeat/breathing that we'll hook up at night, just for all of our peace of mind, since she still has a tendency to hold her breath when she refluxes.  Other than that, we will be bringing home a precious, healthy baby--two weeks early.  She has been so strong and so brave and I can not wait to see what God has planned for this child.

We have weathered some dark days and have learned so much through this experience, and now we will get to begin living our joy--the day we've waited for--our baby is well enough to come home.

So, we'll keep you updated! 

At the Corner of Grace and Frustration

So, we finally got moved to a transition room within the NICU. Hooray (we think!) This means that I stay with Milllie at night and handle all of her feedings, medications, etc. Many of you have asked how long we might be here. Had I answered this question yesterday, I would have said, "Well, they will keep babies in the transition ward until they are ready to go home. I've seen people go home in a week or in 4 weeks." HOWEVER...this morning, the doctor comes in, announces all of these changes he's making and says, "We were going to send you home today, but we want to see how she handles this, so maybe in a day or two." WHAT??? I am packed and ready for a two week stay--I've prepeared myself that she's going to need a little more time, etc. So, as I'm reeling from this news and take the day to recover, "Babybird" lets us all know very clearly that she does NOT love all the changes he made (discontinuing her reflux meds, changing her formula, etc.) and she starts spitting up. Not a tiny bit, but about 2/3 of each feeding. So, I start to panic...and because it was 7:00 this morning when he tells me all this and I haven't slept all night, I wasn't my usual advocating self.

So of course, I am able to word it all a little better this afternoon than I was at 7 this morning so once I finally get it together and express my concerns, we go back to the old formula because that's the ONLY thing she can tolerate right now--milk is not her friend. (Ironic, huh?)

SO...by next week, we should be headed home. Which is wonderful and terrifying and exciting--all wrapped up in one. And after spending last night with her, it is clear that my baby girl is used to sleeping through all sorts of noise and bright light...she wouldn't sleep a wink with the lights off and no sound. Finally, I try the lights and TV and she falls right asleep (why didn't I think of that 6 hours earlier?) But, it's lots of good changes and this is what we've been working towards, so we're ready. I just want to make sure that she is ready and that we're not pushing her or forcing her too quickly. So we wait a little more.

So the past 24 hours have been so full of blessings and exciting changes, but it's also so frustrating to know what the right decision is when it comes to being your child's advocate. I know that all of the parents reading this are saying, "Yep...and it only gets worse." I don't want to be THAT parent but the truth is that Papabird and I are her voice now...so I'm learning to trust that. We still have lots to do--she has to pass her carseat test (be able to keep her heartrate and oxygen levels up for 45 minutes in the carseat) and Andy and I will have to complete our infant CPR course, but our mandantory videos are watched, forms are signed and we are ready for Millie to be ready. :) So again, we wait on this six pound infant to give us HER time schedule again. She's really stubborn (she gets that from her dad.)

So, thank you all for keeping us with us, for praying and for loving on us. Sooner or later, I promise you'll get the note "We're Coming Home!" But until then, we'll wait at this corner of Grace and Frustration. :) Love to you all.

Big Steps Forward and Tiny Steps Back--Weeks 8 and 9

So first, let me apologize for not updating you all sooner. You have been so supportive through this and I know many of you are praying for and thinking about us and that positive energy is SO precious to us. So, we are doing a trial run of no oxygen canula (the tube with prongs that fit inside her nose) this week. Ideally, we hope her lungs are strong enough to sustain her with no help, but if she needs it back, we'll try again later to wean her more slowly. However, she's been off of it since Friday at 9 am and it's mostly gone great.

She is still having a couple of "episodes" every day when she holds her breath, for lack of a better description. Then, depending on how severe (like today!) her heartrate then drops and she holds it until she turns blue and has to be rescued. It looks like these are related to reflux from her belly (just like older people can reflux...it's just much more severe when you only weigh 5 pounds.) So, when she eats, it's SO hard for her to digest her food, reflux, then digest some more so when she starts hurting, she holds her breath. Well, you can imagine that when she does that, she has to be rubbed or pinched or stimulated to take deep breaths. All of that movement can cause her to reflux more and spit up, which in turns leads to her holding her breath again. A really frustrating cycle. Which is why I feel like we may actually be at the hospital until she turns 4! Do you think they'd let us start a preschool there? :)

So she's getting medication for the reflux (thanks to our highly trained and hard-working pharmacy friend who is slowly realizing that I may be craft-challenged and can NOT be taught to knit) and we wait for "Babybird's" digestive system to mature a little. Before her really dramatic breathing episodes today, we were looking at maybe moving to a "transition room" by the end of the week. Now....we'll see. The transition rooms are like "rooming-in" rooms where parents stay at the hospital in the same room as the baby. It's kind of a step-down unit. Each baby doesn't have their own nurse, but is still monitored closely by nurses on the hall...the parents stay and get support on how to care for their special-needs infant (feeding, how to administer medications, CPR, etc.) While this will be a step towards going home, it's indefinite how long a family can be in transition--could be days or weeks.

Another big thing we have to start thinking about is safety after we get home. As I've mentioned before, with such an immature immune system, germs that could give healthy kids a cold or the flu could give her pneumonia or RSV and land us back in the hospital. Which means we have to be so careful--no WalMart, no grocery store trips, special appointment times at the doctor before hours, etc...and then comes the tough part. We've already experienced hurt feelings from family and friends by not allowing any visitors and being very protective of her exposure, which will have to continue well after we come home. Many people (I know I was among them until this whole experience) just don't realize how deadly this exposure can be to premature babies...so I battle with the best way to educate without being hurtful. I want the folks who are in our lives to get their "Babybird time" and for her to know how many people love her....but my priority now is to protect my daughter and keep her from having to return to the hospital. So, we've already started "prepping" our families that it's very likely we won't be able to come to big get togethers at Thanksgiving and Christmas or get out very much at all. In addition, we'll have to limit our visitors at home, which is going to be so tough. (So, I'm super thankful this is not 1980s when I couldn't anything done online!) I know, from friends who have walked this road already and from the hospital staff and educators, that since we have to limit her exposure it's very likely going to be a pretty solitary fall and winter...BUT we just can't take any chances. So, in addition to getting her well know, we're working on a plan to KEEP her well, so that in a few months, I'm not writing to you all from the PICU (the pediatric intensive care unit.) So as you keep us in your thoughts and prayers, please remember me and "PapaBird" as we try to do all of this in the best way possible.

On a funny note, though, she has made quite the reputation for herself with all of the places she can manage to sling, squirt or spit things that should only be found in diapers or burp cloths. The maintenance man yesterday, said, from the top rung of the ladder he was on as he had to change the divider curtain, "How exactly did poop get way up here anyway?" :)

So, again, we wait. We wait for her belly to mature, we wait to find a feeding plan that works for her, and wait for her to figure out how to breathe and eat at the same time. The nice part is, all of these things are normal for preemies. So it's not something new or "sinister," it's just regular old complications, which time should fix. So, there's our long update for the last few weeks. Blessings to you all!

 

Sixteen Sticks of Butter, My Laptop and "Babybird"--all things that weigh 4 pounds

 

Well, our little one finally hit four pounds. I never dreamed I would be able to look at a four pound baby and find cheek fat or leg rolls, but yes it is possible. She's still not up to full feedings yet because we're going slow to keep a weather-eye out for the N.E.C. infection's return, but she's doing okay. We got moved to a new hall within the NICU so we went from being the one high maintenance baby among big, mostly healthy babies to being one of the healthier babies (for now!) :) We'll see what tomorrow holds. One of the doctors really likes to say, "You can't trust a preemie" because each day, sometimes each hour, can be totally different.

Our obstacles now are...
1. to keep any nasty infection like MRSA or staph from getting to her (hence why the NICU limits visitors and we are all hand-washing maniacs)
2. to make sure the NEC infection doesn't return
3. to see if there are any lingering effects from the infection like intestinal obstructions OR effects from the medications we gave her to get rid of it (is there ever a way to win?!)

But all in all, she is doing well. She moved to an open crib today, so that felt like a HUGE step. Things look a little less clinical now and it's easier to interact with her. She's keeping her body temperature stable, so she can be cuddled a little more. AND...in a stroke of pure just-like-her-mama-stubbornness, she's eating part of her feedings from a bottle, though she's technically not supposed to have the skill to suck and swallow until 34 weeks. She's only getting 10 cc every three hours (about 1/3 of an ounce) but she's growing well even on that. She did have to have a little more blood today, so again, if you are a blood donor (or have perfect blood like my girl Jody who the Red Cross stalks for her perfect platelets) THANK YOU SO MUCH! Still no word on when we might get home--they tell you to plan on staying until your due date (which for us would be September 20th and would mean another long month and a half) but lots of babies get to go home before that, so we'll see, but since she's healthy and safe, I'm okay with her there. Exhausted--yes, frustrated--yes...but okay with her there where she's getting what she needs to grow and get stronger.

She's a really blessed little girl to have so many people believing in her and hoping for her. I can't wait to tell her about how all of you supported and encouraged her, even before she made her debut. One of the things I've really become concious of during this experience is how many babies don't have that. I've really been praying for and pulling for some of the other babies there with her...many of them don't have families who love on them. Which is why it makes the nursing staff even more precious to me...because I know that each of these babies, while they were there, had 24 hours a day full of people who believe that they are here for a purpose and that they are each a tiny miracle.

So we wait some more and see what she tells us she needs next. So keep up the prayers and loving thoughts for her...we love you and are thankful for you!

Our Little "Warrior" Fights Back

See...I knew her name would be significant! Has my little "Babybird" had a fight this week or what? The infection she has is N.E.C. (yes, I know we were all praying that it wouldn't be that...but it is.) A Google result for "NEC" is horrifying. It's an infection called necrotizing enterocolitis and what it does is necrotizes/kills her stomach and intestinal tissue. It's one of the scariest infections a preemie can have with the worst statistics. That being said, it looks like we caught it early.

According to the neonatologist ("tiny baby doctor") team, there are two kinds of this disease--medical NEC and surgical NEC. Right now, we are diagnosed as Medical NEC, which, if there is a positive side to this, is good. Her abdominal x-rays are showing a little improvement, so it appears (of course, no guarantees) that she is responding to medication. If she continues to improve (or at the very least, not worsen) then we will be hopeful that we might can avoid surgery (which in this case is really invasive and heals super slow.) They stopped all of her feedings and we wait. The scariest part for me is that even if we get this all cleared up, and they resume her feedings after a long enough period, the infection can reoccur. Grrrr. So, again, we need a miracle.

But, she is still pink and wiggly and cries like mad when she is hungry (she's getting IV nutrition, but she's still a little mad that her actual food is gone!) Those are all really good signs that she is fighting off the infection and still has a good bit of energy. The nurses and doctors who work with these babies are amazing. I could not ask for kinder, more compassionate, yet brilliant and efficient people to take care of my daughter. They are the best! Anyone who will text my cell phone with a picture of my baby at 7 in the morning to say, "Hey Mom, I stink. I'm getting a bath" yet still be a super qualified nurse, is a hero in my book. :)

Our families (for the most part!) have been so sweet and positive and I am so thankful for that. We had our first shower today (yes...I know we're doing this backwards....talk to Babybird...she's calling the shots!) and it was so sweet for me to see that so many people believe in my daughter and are planning on her coming home happy and healthy. The hardest part for me was coming home--this is the first day I didn't spend at least 9 or 10 hours with her at the hospital, but it was wonderful and I know she's in good hands there.

So, thank you all for your support and prayers. One day soon, I'll get to post some good news that doesn't end with "So we wait." But for now, we keep loving her and praying for her as she fights this big, scary infection. Have a blessed weekend.

 

 

A Dark Day

"We must accept finite disappointment, but we must never lose infinite hope." --Martin Luther King

 


"Babybird" has an infection. I wasn't even going to write this note because I feel raw and I hurt and I'm tired, and quite frankly, I wasn't sure I wanted to admit to the world that she is sick...and I'm afraid if I start crying, I may never stop. All day, I've dreaded hearing the platitudes--"Well, God has a plan for this." and "She's going to be fine." I know in my head all of those things are true--but my heart is too hard to hear them today. But then I remembered how many of you are "vested" in my daughter now--you are rejoicing with us in her good days, so it's only fair to let you love us through her bad days.

This morning, she was doing great--spitting up a little but nothing too severe. By lunch (after my huge and frustrating battle with Farm Bureau--do NOT trust them with something more valuable than a renter's policy) she was throwing up full-on and dehydrated. An abdominal x-ray, blood tests and a culture showed that she is definitely fighting an infection. Our fear is that it is N.E.C.--a very serious intestinal and lung disease that is unique to premature babies. We are obviously still hoping and praying against that, but preparing for the worst. They've started her on antibiotics and stopped all of her feedings. They put the I.V. back in to give her nutrition for now as well as get the antibiotics to her more quickly. This moved her from a "critical" baby to one that is "highly critical" and is being watched like a hawk by the entire staff. So now we wait. We need a miracle.

She so far has been just that though--our miracle. She has fought respiratory problems and been ahead of the game in so many ways. She has been surprising us from the very beginning--from the moment we even found out we were expecting, so my hope is that she has a little more fight in her and a few more surprises for us. It's just the most painful thing ever to watch her be so brave and fight so hard in a battle where I can do nothing at all to help her--I feel so helpless.

So please keep praying and thinking good sweet thoughts for her. We need it now more than ever.

Our Preemie Roller Coaster Ride

So Babybird's third week has been fairly eventful. She's had really great days and really awful, scary ones. I went home on Tuesday babbling on and on about how well she was doing--no spitting up, keeping milk down, temperature good, breathing easily, still doing good with her IV nutrition, etc. So, the doctor tells me how we're going to start weaning her from her I.V. nutrition so that she could have her I.V. taken out and that we would work on getting her oxygen off.

So "Papabird" and I were excited to go back that night and spend some time with her. While we were there, she was laying on him while her milk was going in her feeding tube and she decided that breathing was too much work. So, her respiratory rate dropped further than I've seen it go and she turned blue. Blue. Terrifying. So, the nurses and respiratory guys come over and she's back to normal within 30 seconds--which is a REALLY long time when you're the one rubbing her back and pinching her foot to stimulate her with a team of people looking at you, walking you through what to do. So, Tuesday night was a little horrifying for us, because as a preemie, she's bound to have these episodes frequently, and it was a glimpse of the things we'll need to learn to care for her. I left crying and discouraged, thinking, "Wow. We're going to be here till she turns 2."

Cue Wednesday--I walk in to the NICU and she is laying there, all wiggly and pink, without her PICC line (which means no more I.V.s) and her oxygen has been decreased from 4 liters to 2 liters and she's only getting 21% (which is called "room air" and is what you and I breathe.) The doctors and nurses are all smiley and tell me how great she's doing. So, clearly the neonatologist and I have different ideas of what the word "weaning" means. :) He said, "Well, her IV site looked a little red, so we were going to change it out, but I decided she can do without it." So, we're giving her a chance to be a "big girl" and breathe and digest on her own. The only medication she is on now is Zantac to help with digestion. She's being so strong...for now. I am cautiously excited because I have no idea what awaits me tomorrow.

So, our sweet bird is up to 1380 grams or 3 pounds and 1 ounce. (My friend Pam got a dog this week--a toy poodle. Her tiny puppy weighs 2 ounces more than my little girl! That is hilarious to me.) Her weight gains are going great, her feedings are improving and her lungs are getting stronger. The biggest hold-up right now is her temperature regulation. Because she is so young, it's hard for her to hold her body temp--so it's up and down. You know what you can do for that? Not a thing. So we wait for her to learn it on her own as we continue to do everything possible to keep her infection-free. And as she grows, she's rocking out to her new lullabies, classical music and recorded nursery rhymes that "Papabird" put on a tiny MP3 player for her isolette, which is sporting some new stained-glass decorations--a gift from the mom of one of her NICU neighbors.

So, in addition to being one of the littlest babies in the NICU now, we're also one of the "long-timers." All of her neighbors are headed home or to the transition unit to get ready to go home. We're still weeks from that, so it's hard not to compare or get discouraged when these giant 8 pound babies come in and stay 3 days and leave. (I know that 8 pounds isn't giant, but compared to my toy-poodle-sized baby, they are!) But...since we even found we were expecting, she's been surprising us with her time schedule, so now we just wait for her to do that again. This growth has to be on her time, and all of us--the doctors, nurses, me and "Papbird", and all of those who love her--just have to help support her as she makes her way in her own time. When she needs medical help, we'll intervene then, but try not to give her more (or less) than she needs. My favorite doctor in the NICU describes it as "walking beside her and guiding her...not pushing or pulling."

So thank you all for helping us to walk beside and support her. Every prayer, positive thought, casserole, cupcake (yummy...thanks!), baby gift or encouraging note that you all have given has helped strengthen us to give her the time and energy she needs. I can't wait to tell her one day about all the people who loved her and believed in her as she made her way into this world.

 

This is the angel that one of the "long time" NICU moms made to welcome us. 

Fever...and not the fun Saturday-night Kind

Update on our "Babybird": So, the doctor that is on this week is a little more aggresive than last week's (which is good, because it takes all kinds) and he decided to NOT cut back on her feedings when she started spitting up. Which is great, because she's tolerating the milk very well now and she's up to 14 cc every two hours. Which means, since my body is uncooperative that she will surpass what I have to offer her in a day or two. I realize that being in a dairy family, I should really be a better "milk cow" but we have "changed my feed" and tried all sorts of stuff (I'm taking like 20 herbal supplements, drinking Ovaltine like it's going out of style, and shooting down gross tea infusions) and nothing is increasing the supply. The medication that they make to help this has horrifying side effects (like suicidal thoughts and facial paralysis, which apparently is irreversible!) so that's not an option. I'd rather not have my daughter really noticing me for the first time, looking like a stroke survivor. I told "Papabird" that if I were one of the cattle that they'd sell me or put me down and he smiled and said, "Nah...we keep the favorites, even if they're not producing." So I guess I'm good for a little while longer. BUT...they can supplement with preemie formula, so they'll mix whatever I can offer with that. Not ideal, but we'll do what we have to. Her feeding is going well and she is up to 2 lbs. 14 ounces.

Now...for the bummer. She has a fever. It could be a thousand different things--so we wait some more. Obviously, I'm hoping for the news that my nurse perhaps had a brain freeze and just accidently turned her isolette temp up too high. (I realize this is HIGHLY unlikely, but I'm clinging to hope where I can find it these days.) An infection, however small, could mean weeks of setback for us and a huge battle for my little peanut, so we are hoping and praying against that, or something even larger.

She has a little fluid in her lungs and is still having problems regulating her oxygen saturation as well, so they did another echocardiogram to check to make sure that the valve is closed off as it should be (it still is! HOORAY!) But that doesn't help explain what the issue is, so they started her on a diuretic which will flush out the fluid and then we start over. If it doesn't come back, we rejoice and be thankful...if it does, then the team will try to find the underlying cause. The medicine will cause her to lose some weight though, so we are expecting that.

So, I find myself doing some more waiting. Thank you all for loving and supporting us. Fight, "Babybird", fight!