Finally time to see the world

Parking                    ...$350

Room & board         ...$46,000

Medical care            ...$284,000

Bringing Hope home....priceless 

Today is the day I have waited for for the last 4 years - the day we finally get to bring our baby home and start our life as a family of 4 (can't forget Sanders!)

I knew over the weekend that today was likely our homecoming day and yesterday it was confirmed, as long as she gained weight overnight, but I didn't want to say it out loud for fear it wouldn't happen.  I have met so many disappointments on this long road, that I didn't want to get myself excited only to be disappointed.  I woke up this morning to the staff here weighing my sweet girl.  I was almost afraid to ask, but when I did, I learned she had gained 2g!  There is nothing keeping us here now and as I write this, I'm sitting in our room, looking out over Longwood medical area, BU, and cambridge, waiting for our discharge papers.  

Yesterday and today have been a parade of visitors, prepping us for discharge.   Genetics, nurses, Nutrition, feeding, doctors, Case Workers, etc.  

We are so excited to finally have her home and can't wait to keep everyone updated on her progress.  We really can't wait for everyone to meet her.  For now, what I'm really excited for is to not leave my house tomorrow.  

Happy Thanksgiving everyone!  

Hospital life

Today is day 39 at Children's.  Hope has still never left Children's, other than the brief trip across the street in an ambulance in the middle of the night.  She has never been out of the city of Boston and Chris and I haven't been outside of 128 since she was born.  

Looking at her magical frog

Other than the 10 days where Hope was completely sedated, I have averaged 10+ hour days.   The hospital is kind of a time warp.  Most days are the same but they're amazingly busy, especially since we've left the CICU.  I have stayed overnight 5 out of 7 of the past nights in effort to get little miss to eat, but before I was doing that, I was getting in around 10, and staying until 7.  Now that the dog is home it is slightly more complicated and I need to go home in the middle of the day.  

The last few days we have settled into a routine.  A typical day starts with checking in with the nurse.  Before I was staying, the nurse would give me the update on Hope's night, now that I've been staying, I've been telling the day nurse how things went.  After checking in, Hope eats breakfast around 7AM.  This takes about 30-45 minutes, then

I order breakfast and pump.  After that, there is often something on the schedule, though her primary job right now is to eat. Labs usually happen in the morning.  Hope has tiny veins, so this usually takes a while, but she never screams. Even when she is poked in her head.  Nothing more than a wimper.  If she needs X-rays or other diagnostics, these often happen in the morning.  Sometime late morning, the Nurse Practitioner stops by to give the report from rounds.  Then Hope eats second breakfast.  I pump when she's done, then I go to lunch after that and wait around for the 2:00 feed, then i run home after pumping to walk the dog and get the car.  Chris comes while I'm gone, so that he takes care of the 5:00 feed.  I come back in and Chris goes home.  We continue on the three hour schedule overnight, so I am basically sleeping in two hour increments. Basically, the day is feed Hope, pump, eat, then do it all again.  I'll be happy when we're home and I don't have to pump every three hours, since I can replace some pump sessions with nursing.    

Hanging out in our new room

The days are long, but go by quick.  It has become a blur.  We've met so many people and I have started to forget who cares for us when.  Since every day is the same, I only really remember really good data and really bad days.  I haven't had a lot of time to write, so I can't even remember it that way. 

All stretched out

Last week was a struggle.  My last post, I talked about the light at the end of the tunnel.  Well, that is one LONG tunnel.  Our number one challenge has been getting this kid to eat.  We have met several road blocks, the biggest being reflux and getting her to take in a certain volume.  We had been feeding her breastmilk fortified with formula, but we had a hunch that it wasn't agreeing with her.  We convinced the team to let us try straight breastmilk and see how she did. Lo and behold, her volumes increased and we were eventually able to remove the feeding tube yesterday.  This was a huge deal as it was a long, frustrating process.  She is no longer hooked up to any sort of machine other than the monitors they use when we're not in the room or during the night.  

No more feeding tube!  We now have the wireless version.  

Another struggle was our room situation. When we moved out of CICU, we went from a beautiful spacious single with one nurse assigned just to us, to a small double room on the hallway side and a nurse who was also caring for two other patients.  There was little room to move around, especially with two chairs and a crib.  The bathroom was on the other side of the room, our roommates side.  We were in that room for a week.  I was never happy with our room, but kept telling myself we wouldn't be there long. I don't like to complain or be a pain, so I never said anything.  We watched 5 different families come and go.  Our last roommate was the hardest of all.  The baby was not a good match age-wise for Hope.  He was probably a year and a half and was not feeling well. He screamed from the time they brought him in.  When they came in, they managed to pull one of our curtains over to their side.  This meant we didn't have enough curtains to close us off.  I had to pump / nurse, but was exposed.  There was nowhere for me to go and I lost it and melted down.  Later that night, we moved over to the new wing, and were given a nice, private room.  This room is actually larger than our double.  It is a single, has a gorgeous TV, and a private bath. There is enough room to have visitors and it is more like a hotel room than a hospital room.  I have felt much better since we moved here.  

Login' the boppy!

The last piece of the puzzle now is for miss Hope to gain weight.  Then she can come home, which will be soon!  Will keep you all posted!

Hope turned 1 month old last Monday!  She also had her staples removed.  

The light at the end of the tunnel

Getting ready for my CICU graduation!  I was all dressed up when she got there.

As I sit gratefully in our non-CICU room snuggling with my sweet baby, the proverbial light at the end of the tunnel is starting to shine brighter and brighter.  We are not currently attached to any machines, and there is only one feeding tube still attached to her body, the only tube keeping us here at Children's.  We're almost home.

We have had a busy week and I apologize for not updating everybody sooner.  

Lounging in the CICU on Wednesday, 14 days post-op.  Still pretty drugged up.

The biggest change is that we have officially graduated from the Cardiac ICU, and hopefully we will not go back there for a while and that our next visit there is brief.  We were there for 14 full days.  We expected to be there 5-7.  As everyone told us, this was a huge surgery for a very tiny baby.  Had she been much smaller, they may not have been able to do this surgery and would have had to do something more temporary, or we would have had to stay in the hospital while she grew bigger.  Thursday was the big day.  The big requirements for leaving CICU were to get off of morphine and off the cpap.  Her morphine was weaned last weekend and she got off the cpap Tuesday night.  She was ready to move on Wednesday, but the attending doctor, who is very conservative, wanted to observe her one more day.  Tuesday, there was a slight scare that she may have been withdrawing from the sedatives, but fortunately that was not the case.  

13 days post-op

We started to try to feed her with a bottle on Wednesday, but because her recovery is so slow, we are also feeding her through the NG tube.  They have slowly been increasing the calories to get some weight back on her.  Thursday was her graduation day and she got all dressed up.  

All dressed up.  15 days post-op and moving out of CICU

Hanging out with mommy waiting to move out of CICU

All my supplies (look at all that milk mommy made for me!) and my chariot that will take me out of CICU

Since we moved, we've been settling into the routine here.  Life is very different in transition.  The CICU nurses have total control over what happens with her care, and we have input, but ultimately everything that happens is their decision. They even have more say than the drs in many cases.  Over here, we are much more in control.  We change diapers, we call for bottles, we can take her for walks and field trips.  

17 days post-op.  Just after trying to eat.

The big task while we are here is to get Hope to start eating.  This has been a slow and somewhat frustrating task.  Because she was so young and the surgery was so big, she sort of forgot how to eat.  In addition, because she went 10 days without food and then didn't get much when she started to get fed again, she had lost a lot of weight and had no energy.  Lastly, she was on heavy-duty sedatives which made her very sleepy.  The sedatives have finally been lifted - she took her last dose of attavan on Thursday and her last dose of methadone last night.  She is starting to put weight back on.  The last piece of the puzzle, getting the coordination of the suck/swallow routine down, seems to be coming in to place.  

Today was a very good day.  The sedatives that were making her so sleepy are starting to really wear off, so she is now awake and alert far more often.  I got in just in time for her 8AM feeding.  She was wide awake and looking very alert.  She took about 7mLs, which doesn't sound like much, but she was showing interest and got a few good suck-swallows in, so I was encouraged.  She feeds every three  hours, so we hung out for a bit, I had some breakfast, then pumped.  While I was pumping, I gave her some skin-to-skin time, then decided to try nursing.  She did pretty well for not having nursed in three weeks.  She latched and suckled a little bit.  During the 11:00 feed, the feeing team came in to help her feed.  She showed a lot of interest, but was pretty tired from nursing, so only took 4mLs.  Again, there were some good suck-swallows, so we were encouraged.

Selfie with Mommy as she lets me snuggle skin-to-skin under a blanket 

I went home to get Chris after the 11:00 feed, and to walk Sanders.  Chris drove back in and I ran in.  This was the longest run I've done in probably 6 months.  I managed 7 miles and the pace was even decent - 9:20s.  Starting to really feel like myself.  

But the best part of the day was the 2:00 feeding.  Her uncle Rob came to visit and she decided to show off and take almost a whole bottle, 31mLs!  

Hanging out with Uncle Rob after eating almost a whole bottle

At 5, I nursed her a little bit, and then she once again took 30+ mLs.  We feel like she might be finally getting it down!

We are happy to accept visitors at this point, and can't wait for everyone to meet Hope.  If you visit, we ask you to keep visits to around an hour at most - I get tired and overwhelmed, but I am really happy to see people.  She had her first post surgery visitor on Friday.  We went on a lunch date to the cafeteria with my friend Carrie-Anne.

Field trip to the cafe!

With every feeding, she's getting closer and closer to home.  I'd like to think we'll be home Tuesday or Wednesday, but definitely by the end of the week.  We will keep you posted - hopefully this is a big week!

Sanders hanging out with me in the Nursery.  Waiting for Hope to come home.

Slow and steady (lots of pictures!)

Little Miss Hope has been slow and steady with her progress, but it's progress nonetheless.  If there is one thing we have learned about our daughter in the last three weeks, it's that she does thing on her own timeline. After all, it took her four years to get here in the first place.  We are slowly getting our little girl back.

Holding Mommy and Daddy's hands this afternoon

Since I last updated on Thursday morning, a few things have happened.  She is waking up more and more.  Each day since she was closed up, she has been a little more awake.  She is slowly being weaned off all the meds she was on, tubes and wires are being removed, and she is starting to look more and more like the baby we handed over 10 days ago.  

Thursday afternoon.  Chest tubes still in, but starting to look more like myself.  

First off, meds.  At one point, she had 18 different medications going in through IVs and her arterial line.   She was on 4 different meds for her heart, diuretics to help with the swelling, morphine for pain management and sedation, paralytics to keep her still, lipids and sugar water to feed her, etc.  Today, she was down to 6.  She is on atavan/methadone to wean her from the morphine so she won't suffer withdrawal, milrinone for her heart, lasix (diuretics), lipids, and a few other things.  Much of the medication she is getting is a matter of weaning her off the huge amounts she was on.  We are being told the arterial line will come out late tomorrow when she is weaned off of milrinone (a heart medication).  

These are all the machines surrounding her.  Each room in the CICU is equipped with most of these machines.  

Tubes.  She had one chest tube removed on Wednesday and the other two were removed on Friday.  These tubes were there for drainage and were pretty ugly.  She looks much prettier without them.  She still has some wires coming out of her chest and some electrode monitors.  The wires are there in case her heart needs regulating with a pacemaker, which is unlikely.  These are some of the last things to come out, for precautions sake.  

Friday and we're chest tube free!

Breathing.  I'm happy to report that she was taken off the ventilator yesterday. This was a huge step and takes us another step closer to getting out of the CICU.  She is still on breathing assistance, but it's just a cpap through a nasal cannula.  She is no longer intubated.  Chris and I watched them extubate her.   I found it tense, as if everyone held their breath while we waited to see if she could do it.  She pulled it off and is doing pretty well, but does need support.   She may be on the cpap a few days, and we can't get out of CICU until she is done with it.  First she needs to get her strength up and start breathing deeper on her own.  Another big thing that came with the removal of the breathing tube was moving her out of the isolette (the glass bassinet) and into a big girl crib.  

Breathing on my own and not so sure about it.  

Wide awake and looking more like myself, even if I am a little skinny.

All tuckered out but holding daddy's hand

Feeding.  They began feeding her breastmilk through a nasal-gastric tube (NG tube) on Wed morning.  They started with 2ml an hour and over the last few days have slowly worked up to 5. We stalled at 5 for a couple of days to make sure her gut could handle it and we didn't slide backwards into another episode of possible NEC (the bowel infection she had before surgery).  Today, they were upping it to 8, and by the end of the day tomorrow she should be getting 12.  This is getting close to the amount she was eating before the fast, when she was eating 40 every 3 hours.  After increasing it to 12, they will start adding calories.  Sometime in the next few days, she will get to try out a bottle again, though it is unclear when.  Today she was sucking on her wubbanub (the pacifier with a stuffed animal attached to it). She is incredibly weak, both from the surgery and from not eating for two weeks.  She has lost a bunch of weight and is down to 5lbs 3oz.  Her arms are so skinny and her eyes look so big in her head.  Can't wait until she gets a little meat on her bones.  Today we took some pictures so that we could remember just how small she was.

My hand in Mommy's

My hand in Daddy's

My wrists are so small, Daddy's wedding ring would fit on it

The best part, other than getting off the ventilator, is that we are now able to hold her again. It is complicated (given the number of IVs, the Cpap, etc) and the nurse has to hand her to us, but it is nice to have her in our arms again.  It was pretty clear that she was pretty content to snuggle again too.  

Snuggling with Mommy

Snuggling with Daddy

So cozy and happy to snuggle

We are starting to make the motions to prepare for her homecoming, even if it is still or week or so away.  Sanders came home today.  I am so thrilled to have him home!!!  Our house doesn't feel so empty anymore.  He is pretty happy too.  I took the morning off from the hospital today to hang out with him.  We went for a run and for a minute, it seemed like our old life.  

I think we can officially say we are out of the woods.  The next step is out of CICU into the transition unit, then home.  She needs to start breathing better for the first step to happen.  Her nurse suspects Wednesday, but definitely by the end of the week.  The other thing she needs to do is start eating from a bottle again.  We think she'll pick this back up quickly - she was eating so well pre surgery and has already shown us she can suck on a pacifier.  I don't think they'll let us go home until she gains a little weight, showing she can indeed eat.  

So that is the update. I feel a levity I haven't felt in months.  My body is starting to feel like itself again, my dog is back, Hope's heart is repaired.  Life is pretty good, but will get even better once she comes home.  After this ride, I'm thinking having a newborn at home (even if she is actually a one month old) will be much easier than what we've been through.  Instead of getting up to pump, I will get up to nurse / feed my baby.  We won't have to commute into Boston every day.  We will be able to snuggle our baby whenever we want.  I look forward to diaper changes, a screaming baby, and midnight feeds because it simply means that life is normal and our baby is finally healthy.  We can't wait to introduce her to all of our friends and family, and we will be sure to let everyone know when we are welcoming visitors.  We thank each and every one of you for the outpouring of support.  All of your prayers, messages, outreach, etc has been so wonderful.  I am very behind on responding to people, so I am sorry if you wrote me a message and I haven't responded - I promise I will get back to you soon.  We want everyone to know how loved we feel.  This is one loved little girl :)

Due date!

Today would have been my due date...lol.  9 months ago, when I found out I was pregnant, TODAY was the day I looked forward to with so much anticipation.  Yet, here I sit, in Hope's room, writing this in the wee hours of the morning, while I pump milk for my baby girl.  So weird.

It's easy sometimes now to feel like I was never pregnant.  I still find myself doing things like I have a belly, like bending over in a funny manner, but those habits are beginning to fade.  Yesterday, two days short of three weeks postpartum, I was able to button and wear my prepregnancy jeans, the jeans I bought as a reward for losing all the weight from IVF and then some.  It was a little bittersweet.  As I suspected, I miss being pregnant.  I miss feeling Hope move around inside of me and I'm sure this is amplified by the fact that she is not home with us.  But, in the end, pregnancy was not kind to me.  I was very sick, without realizing it.  Fortunately, I have great medical care and they knew it was time to get her out.  I still felt crummy for a week after she was born, but once I got on those pills, and my blood pressure came down, I felt like a new person.  Getting into my prepregnancy jeans is sweet, in that it is a relief to feel like myself again, a relief that I was able to get my body back and so quickly!  It is nice to have my style back, though my top half is still a "huge" challenge (pun intended).  Pregnancy improved my body image.  I loved watching my belly grow and my body change and find it amazing that it was able to shrink back so quickly.  I love the curves, and am filled with wonder in the fact that even though my body is not perfect, it is beautiful because it grew a perfect little baby girl.  

Hope is making progress.  Still at her own pace.  They took more tubes off yesterday, though she still has quite a few.  She was not awake yesterday, but I did not find this surprising.  They had to put her back on paralytics for the closure and they left her on them as she adjusted to them.  She didn't come off of them until yesterday morning.  As of yesterday, they were weaning her off of morphine and starting to give her methadone for the pain instead.  This will allow her to be more awake and the bigger step, will allow her to start working on breathing on her own.  She got real food for the first time in 11 days.  They are reintroducing food slowly through a nasogastric feeding tube (NG tube) to see how she does.  So all in all, it's good.  Chris and I would both like the progress to be faster, but understand we need to be patient.  I am far more relaxed now that she's closed and now that I saw her awake once and as much as I'd like her home, I'm ok with her taking her time if that is necessary. I'm hoping today is a day with much more outward progress.  

My nurse dressed me all up in fancy socks!

Down to just a bandaid!

Stay posted as I bring you more updates, but for now it is time for me to go back to bed.  

Joy and relief

Hope had a BIG day today.  Today was the best day.  I can't even describe it. It's the little things at this point that make or break my day.  

By now, many of you have read my status on Facebook.  Hope woke up for a little bit this morning.  This was unexpected for me, so when I arrived, as usual, I asked the nurse, Stephanie, how she was, and then I noticed immediately her eyes were open, and I instantly lost it.   As she heard my voice, I watched her eyes open wider and start to look around the room, searching for me.  I went to her bedside, and started talking to her directly and she was able to half-consciously look at me.  Then she smacked her little lips, just as she was doing when she went to sleep a week ago.  Yep, she is still hungry and she knows it.  I see this as a good sign, and it won't be long until they start to get some food in her.  

The other big milestone for the day was that the surgeon finally closed up her chest.  This does not come without risks, so I have been nervous about it, and anxious for it to be over.  There's risk of infection, more swelling, destabilization, etc.   We had to sign a consent, though it seems silly because it was not like we would leave her open.  Talking to the Stephanie pre-procedure, she warned me that even though they were closing her chest, there could still be complications.  Sometimes, when they are as little as Hope is, they can only close the chest a little bit, or sometimes they have to re-open it. Sometimes they need a lot of support - pacemakers, defibrillators, blood, etc.  I really like this nurse - she was her nurse immediately post-op last week, and she is brutally honest, which I appreciate.  It makes good news all the sweeter.  So when I left there at 1, kissed my sweet baby on the forehead, not only did I know that she was in good hands, but I also knew that I was well-prepared if it didn't go smoothly.  While they were closing her up, I went for a run because it was the best thing besides having a drink to keep me occupied.  Then I had lunch in the garden and waited for Chris to arrive and for the phone to ring.  The phone rang shortly after Chris texted to say he was in the area.  It was Stephanie and the news was good.  Hope rocked the procedure. They closed her chest and she needed almost no support.  They removed a couple more tubes. She was resting comfortably and was stable.  We went up a few minutes later and she looked so peaceful. Her numbers were good and it was obvious that Stephanie was not worried.  She left us to ourselves and didn't hover.  In the past 6 days, we have had very little alone time with our baby as she required a lot of professional care, so this was just another sign as to how well she was doing.  Stephanie did not mention the complications she had prepared me for earlier in the day, but instead talked of the recovery process - When the tubes would be removed, when we'd get her off the ventilator, how they would try to feed her my milk through the feeding tube (possibly even tonight), and how they would probably wake her back up tonight and start to work on keeping her awake.  The chaplain passed by and said a prayer of recovery with us.  I left there breathing easier than I have in 10 days.  

Resting comfortably post chest-closure.  Her eyes are not really open, they're just a little swollen still, but this swelling is nothing compared to a few days ago.  

Are we out of the woods?  Probably not quite yet, but I think we're on our way.  Each hour that passes, we're a little closer.  The 6 days she laid in the CICU unconscious with her chest open were the longest of my life.  I had to fight to keep my mind from focusing on the worst-case scenario, and I found it a struggle to not see big improvement from day-to-day.  It was discouraging for me.  But I never got that sense from her caregivers.  They remained positive even when the progress was small.  There was always forward progress, never backward, which is a really good thing.  It was just slow.  I think Dr Freidman would have liked for it to be going a little quicker, but he assured me that she was little and this was the problem with doing such a big surgery on a little baby and lamented again as to how he wished we could have waited.  Most of all, over the last 6 days, I have tried to stay busy doing other things.  My biggest struggle was feeling like I had a purpose.  Chris went back to work, but I am on maternity leave, with no baby at home to care for.  It feels sort of like summer vacation, but the days are short and the weather isn't as nice, and none of my other teacher friends are off.  Sunday, with its extra hour, something I usually relish in, seemed interminable.  

I am really grateful to have had such a positive day.  I know it does not always work out and my heart weighs heavily as I have been following another heart baby who is currently losing his battle.  I thank my lucky stars because I realize how blessed we are.  We waited a long time for this little girl and she has brought so much hope to our world, even when hope was lost.  We can't wait to bring her home and introduce her to all of those who already love her so much.  

It's a marathon not a sprint

The first few days post-op have been slow to see progress, and sometimes discouraging.  It is hard as Hope is still hooked up to machines, her chest is still open, she is swollen, sedated and on paralytics.  I have been in for an hour or so each day.  

Upon asking the nurse how she is doing, I've been getting a similar response each day - she's doing ok.never good, never great, just ok.  Each time the nurse has reiterated how sick our baby is, and each time I have to remember to take that with a grain of salt.  I know she's sick, no doubt about that, but I have to remember - how sick is she for her situation?   Is how sick she is normal or is she struggling?  So each day I have asked them to put it in perspective for me.  Is it normal for her size, her condition, the surgery she just had, etc.?   When you see your baby that sick and not making perceptible progress, it is easy to get caught up in it and be disappointed.  But each time I asked those questions, the reply was always that she was doing what she needed to do and that nothing was out of the ordinary.  Dr Pigula, her surgeon, has been satisfied with what he's seen.  He's never expressed any surprise.  I have never felt a frenzy around her bedside, but instead, I have been met with calm, capable, and skilled nurses, gently tweaking the doses of meds she was receiving, as well as the machines regulating different things.  It has been a process of fine tuning, getting her heart and body adjusted to the new blood flow.  

When her cardiologist came by to see me yesterday afternoon, he seemed pleased.  It is much easier to read that in someone you have gotten to know.  In her two weeks at Children's, we have met with her cardiologist on about 10 of those days, and sometimes multiple times in a day.  He re-explained everything the nurses had explained to me, and said it really well.   He explained that they never know how babies will respond to this surgery - you could take 20 babies, all the same age, weight, and use the same surgeon, and each baby would recover at a different rate.  So it was hard to say what is normal.  The good news, which we need to focus on, is that she has not made any backwards steps.  By the time I left Children's yesterday I felt good.  Apparently, she had not had a great night or morning, but by the time I arrived in the afternoon, she was making significant progress. The most significant improvement was that she was peeing.  Seems like such a little thing, but in order for the swelling to come down, this was huge.  Her cardiologist explained to me that his as probably a sign that she was turning the corner.  

So this morning when we got there and asked the nurse how she was, we were met with a "she's doing great and had a great night", it was clear that Dr Freidman had been right, she was turning the corner.  They are starting to wean her off of some meds, her heartrate and blood pressure have mostly regulated, and they took her off the temperature regulator.  The swelling is beginning to come down and her color is starting to look better.  She is comfortable and relaxed (but still very heavily sedated).  The goal for the day was to take her off the paralytics and possibly reintroduce breast milk via a feeding tube, though we left before either of those things happened.  Being that she hasn't eaten in a week, this made me so very happy.  They are slowly bringing her back.  The plan is still to wait until Monday to close her up and they won't start to let her wake up until they close her up.  It has been a long 3 days of not being able to snuggle with our baby or look in her deep, soulful eyes, so we are impatient to bring her back to life, but understand it can't be rushed.  It will likely be another 3 days until we get to hold her again.  

We have taken the last few days as a chance to step back and do some things for us.  Appropriate it happened over a weekend.  This is really the first weekend I've had since Columbus Day weekend.  Since I left work two weeks ago, I have not had a day off - it's been full time at the hospital.  Chris went back to work on Thursday and Friday.  I went to the hospital, but only for an hour or so.   We've gone out a few times and seen friends.  I went for a run.  Chris went to Krav. I got a haircut.  

I went to my own Drs appt and found out the meds were working and my BP was coming back down. It's been a somewhat refreshing couple of days.  

Yesterday was Halloween.  I was bummed that Hope had been born and we couldn't celebrate.  She didn't get to wear her little "My First Halloween" outfit.  But the Child Life team brought her a ballon, a new sign, and some cute Halloween socks.  

Other than Hope's improvements, today was also a good day because we met her pediatrician, Dr McKeen, who came to the hospital on a courtesy call.  This was the first time we met her and I have been so impressed with everything she's done.  She has called to check in on us a few times, including Wednesday, to wish Hope luck in surgery.  Yesterday when I arrived to see Hope, her pediatrician was on the phone with her nurse.  She is on top of things and is also caring and compassionate,  when we met her, she gave us each a big hug.  I feel like I've known her forever and can't imagine Hope seeing anyone else.  

Overall things are on the upswing.  We have turned the corner and progress has become more visible. I expect the next few days will show even more rapid improvement.  We will update when we can, but please know our priority is Hope and finding time for ourselves.  We thank each and everyone once again for your prayers and support.  We have been so touched by the outpouring of love she has received.