Wednesday, March 31, 2010

Arrythima is Back Gwen's heart started to act up a little (which means our hearts are all struggling too). This time, the arrhythmia is not caused by electrolyte imbalances. She snaps out of them and "tolerates" them (blood pressure is not affected, ect.) but she has had them on and off through out the day. The doctors seem to still be calling them "benign" - that they are the "kind" that you or I could have at any given moment and it's totally normal. However, they went ahead and put the IV back in (this time it is in her foot, so at least her hand doesn't have a gigantic gauze on it). Also now they are talking about possibly having to give her medication for the arrhythmia. My question now, is, if she goes on meds for the arrhythmia, does that mean they are not "benign" and they are a problem. I'm a bit confused.

The feeding tube is going to stay in for a while. The tube has breast milk fortified with formula to up the calories. The docs want her to gain more weight than she is currently (I keep trying to plant it in their head that Lil is small so not to expect too much - but they keep saying "heart" babies burn more calories because their hearts are working harder, so they need to off-set that). We won't offer the bottle as we hope she will learn to nurse. She did a tiny bit better with "nursing practice" but it is going to take a lot of faith and patience on my could be a long time until she is into that whole thing.

To report some good news - Gwenyth, as of the last few hours, is off the oxygen and doing excellent! They will take the silly thing out of her nose sometime later today if she keeps on keeping on with "room air."

Time for her Hep B and Synagis (for RSV - a respiratory virus vaccine that will last for one month), then they her weight, and bath time where Myers and I will learn "wound care."

Prayer Requests: The many other families here

We have been greatly blessed by your prayers.  Gwen is recovering well, and has avoided many of the roadblocks other kids have run into.  While we have been here we have met other families who haven't had as easy time as we have. There children have much more complex conditions than what Gwen did, and then on top of that they have had infections, bad drug interactions, or haven't progressed on getting off breathing support like she did.

Laura and I have had something like survivor's guilt when we realize that while Gwen is getting better by leaps and bounds, they are still in the CICU night after night, trying to juggle the rest of their families (there are 3 other families with kids around Lillian's age), jobs, and the day to day logistics of living at the hospital.  They need your prayer.

Another Great Day

Gwen seemed happy today. She had an echo-cardiogram which they said showed her heart to be in great condition. As expected the muscles around the lower chambers of her heart are "thick" and the doctor's expect this to change over the next 6 months.
She's getting her feeds over 90 minutes now, down from over 2 hours. She handled it quite well. I think they'll go to 1 hour feed tomorrow.

She's down to 1/4 L of O₂ now.  The nurse was going to take her off completely tonight to see if that would work. 

The CPR class was scary, but informative.

Laura is very tired after spending two nights in the room with Gwen.  In between baby crying because of her wet diaper, feed pumps playing a loud alarm when they are done, loud neighbors and nurses coming in to check vitals it's very hard to sleep there.  We are together at the RMDH. 

We look forward to being at home with our two girls.

Monday, March 29, 2010

Whirlwind Day - Learning About Taking Care of Gwen at Home

Today we began to learn about what care Gwen will need when we leave here. This week we will take at least three classes. Tomorrow we will take infant CPR. When we leave, they are telling me she will keep her feeding tube (more below). Also, we will need to be super-hyper vigilant in protecting her from illness - "heart babies" and the common cold don't mix well at all. A cold will cause her to have a serious respiratory illness requiring hospitalization. Congestive heart failure is another risk factor we need to be ever careful to watch for any signs.

I've been picking the brains of each nurse and fellow or resident to learn how long they expect to be here. None of them give a straight answer - but we know that we could get little warning (kinda like we did when they moved us to "step down" and we know it will most likely not be before April 2nd.

We are still waiting for her tube feeding to be condensed to bullious feedings where her tummy is left empty after being fed for a half hour (right now she is being fed for two hours at a time). At the same time they are adding a caloric supplement to the breast milk she is being tube fed. They want to give heart babies all they can to help them grow. Heart babies struggle with growth because their heart is using so much energy (Gwen's is enlarged due to the extra work required all her life in utero - so even as it is "fixed" it is still a hefty muscle - at least right now that is my understanding as to why she is at risk for "failure to thrive").

Until she takes in her feedings in a half hour time period they will not try a bottle or see if she can swallow by putting milk down her throat. They will let her "practice" nursing - so far, she hasn't got the knack yet. Nursing is actually far better for her than a bottle as it requires far less work on her I really hope she can figure it out. They say heart babies sometimes have a difficult time because they didn't learn it before surgery and they don't have the association with being hungry and nursing - and I am sure it doesn't help that when she "practices" her tummy is already full. She takes a pacifier very well, hopefully she isn't too used to that. They are trying to tell me that is not the case, but I can't help but wonder.

It really has been a whirlwind of a day as we learned all these details. At first our nurse said she may or may not need oxygen and a feeding tube. Later in the day the nurse said "she would almost bet a million dollars Gwen will be on a feeding tube when we leave." I need to inquire why the sudden sureness about it...I don't know why I didn't ask then and there. Also, we were given the impression by the fellow that Gwen will not be on oxygen. Again, I don't know why she seemed so sure about that. Things are all a bit confusing right now.

As far as her health, the results of blood work and her x-ray show all is well - kidneys are leveling out as they want them too after surgery, lungs are open, blood levels of electrolytes are steady enough. She will have an echo-cardiogram tomorrow - a first since surgery that they will see just how the heart is functioning. All indications based on her clinical signs are that it is working quite well. It will be great to have that confirmed.

Tomorrow Myers and I will have blood drawn. It appears that she has some random duplication of some gene. We are told they don't think anything of it - that they are finding this type of thing occurs in just about everyone and that these don't seem to be of any significance. They will check us to see if one of us also has the duplication and if we seem otherwise normal (no comments please) then they will be settled and done with the situation. If we don't have it then as I understand, they still find it insignificant and don't think it is anything important.

At the same time the hematologists will take our blood to help confirm that her scary, freaky, lack of white blood cells at birth was indeed a type of autoimmune reaction caused by one of us.

Finally, we will also be contributing our blood to science for research being done on the genetics heart defects.

Sunday, March 28, 2010

The Big Move

I apologize for all the many pictures, but I just love taking them and it's hard to narrow it down. I took 44 pictures today in about 5 hours, mostly of a baby that doesn't move!

The move down the hall.
(Why yes, we are traveling vagabonds.)

Myers and Lillian, talking about all the tubes that Gwen has helping her.
(It's a series of tubes.)

Gwen's huge new bed.

Trying to figure out what's going on.
(On her arm is an IV covered in gauze and in her nose is oxygen and a feeding tube.)

Gwen loves her mommy.

Remember to look at her big sister's blog to see what Lillian's up to!

BIG NEWS for Gwen - She has a NEW ADDRESS!

Gwen is still on a small dose of diuretic, 1 liter of o2 and a feeding tube with plans to be evaluated tomorrow to see if she can take food through her mouth. In the meantime they are over-flowing in the CICU (Cardiatic Intensive Care Unit). These details combined means she GRADUATED to the "step-down unit" known as the "Cardiac Care Unit"! Hooray for Gwenyth - she is on a excellent path towards going home to enjoy Springtime in the Shenandoah Valley!

So....what is the Cardiac Care Unit/Step Down Unit? It is her own room, just down the hall from CICU. She shares a nurse with three other babies and Mommy and Daddy take over much of the care and go through all kinds of education so we know how to care for her at HOME (infant CPR and other details). One of us is allowed to and encouraged to stay with her over night (there is a futon like bed).

It is quiet in this room, spacious with a little bit of a view of Center City, Philadelphia. It is so calm in here, nothing beeping or otherwise making noise (except when Lillian is here). We are all decompressing and adjusting to such the stillness and quietness. It feels strange - but good so wonderful to be here in this room because we know it means Gwenyth is closer to going home.

She's been checked out by a resident and a a fellow and both docs say she looks excellent. Gwen is doing well, very well.

Myers is enjoying being with her as her wide eyes take in the world - we love when she takes a break from sleeping to look around. We marvel at her and how well she is after a week and three days since some major surgery ("as big as it gets" according to Dr. Spray).

Thank you God for my sweet, healthy, healing baby girl!

Saturday, March 27, 2010

A slow day

Grammy holding Gwen for the first time.

Dad was left to watch after the baby. Seemed like a perfect time to catch up on reddit.

Here is the wonderful figurine that Aunt Becca made.
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Friday, March 26, 2010

Thank you to every single person who has prayed for and been thinking of and following Gwyneth's story. The cards in the mail, the emails, the comments here and phone messages - the extended prayers as you passed the story on to others - when I look at her, I think of all of you as her angels. I think about how I can't wait to someday tell Gwenyth (and Lillian too) about all of you who are sustaining us through this.

Please, take time to include prayers or a moment of thought for the many other babies in the CICU (Cardiac ICU) and hospital wide. CHOP, and all children's hospitals exist in another dimension of reality. All day long I see smiling faces of children or little babies in their beds and can read the faces of the parents, anywhere between cautious hope and drained, depleted reserves. The phrase "dedicated parent" simply is too weak a description for all that I witness here.

So as for Gwen, at the moment, besides the fact they decided to "take the edge off" by giving her some "calming" meds (which I wish wasn't protocol), things are slow and stable today (I say with very, very cautious optimism). I am waiting to hear about her blood work. I am waiting to learn more about how her lungs look. I'm hoping the potassium did in fact correct the "benign arrhythmia." There are many, many little details and details upon details all day long that we try to follow and understand.

Sometimes I just want to grab her and run. I want to take her away from all this. But, I know she is still in recovery. She is still being watched and needs her doctors nearby and the monitors (do you know how stressful it is to change a diaper while your baby is hooked up to a monitor - her O2 stats go into alarm as you hurry to finish up - it is actually not a big deal, she is fine, but still, you have this alarm going off and a flashing low number...). Anyway, Gwen is holding her own...but she still needs to be here and keep improving day by day. But, she has come a long, long way...she has over-come so many hurdles - just being born was an amazing feat!

Thanks be to God for giving Gwen to me and letting her stay with me this week and two days...I do not say that lightly, I say it with a humble heart that knows more than I ever have before how precious and fragile is life. The "real world" outside these windows is foreign to me and I will never feel the same when we do at last, return to join the daily grind. I pray it will be soon, I dream of springtime with two little girls and the usual craziness that is daily life with kids. I will soak it up with appreciation like never before. I will try not to think to much about the fact that we will return here again as her heart will need more surgeries as she grows. Never will a day go by that I don't think about the kids and families here. Till that day, we'll just be here as Gwen heals as she needs to, no rush or hurry.

And, so keep praying her along, please. She still needs all of you, she is just a tiny little thing and she is still here, in the CICU which means she is still working towards getting to the point where her heart will tell the doctors "I'm okay, I've got this now, I can do this...thanks for fixing me."

She's Wearing Clothes

When we got here this morning we found that Gwen has advanced to wearing clothes and being bundled up in blankets. They've turned her bed heater off. She's on 3L of O₂, down from 4L yesterday.  She's moving to intermittent feeds, on for 2 hours, off for 1.  All these are steps towards getting her used to what life at home would be like.

During the night they moved her IV for her lipids from her foot to her arm.

The nurse this morning could not get Gwen to settle, and chalked it up to how crazy it is here. And it is crazy. Not a minute goes by that some machine somewhere is beeping. The worst are the ventilators on Gwen's neighbors. When we first got here there were a lot of visitors. The nurse gave her a sedative, which we would prefer her not to be on, but she needs to sleep. They are talking about her having a more steady dose.

Laura's holding her right now.  I got to hold her for an hour before we left last night.

Thursday, March 25, 2010

Dr. Sock Monkey is IN

If you up on your Lillian lore you know there is Mr. Ultra Sound Transducer Monkey. While acting out the 20 week ultrasound that she came to, Lil would put the sock monkey up to Laura's tummy and say, "The monkey can see the baby." Turns out that he has a cousin that showed up in the mail yesterday whom we'll call Dr. Sock Monkey. You can see him now doing his rounds with Gwen.

Alisha Huber found both of these monkies roaming the wilds of her sock drawer and tamed them before sending them. They make a welcome addition to our home.
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Few more details

Laura and I finally opened all the cards we've gotten from our church today at lunch.  We were touched by all your kind words.  We'll show Lil her cards when she arrives after nap.

Talked to the attending doctor, who wanted to know about hypno-birthing, and told me that Gwen was doing great.  Another sign that they think so is that she is sharing a nurse with another child, like she was last night.

Talking with the nurse the reason her lungs are closing up is that she's just been laying down all the time, and not being held/moved around.  Her heart arrhythmias continue, but none in the last 15 minutes.

We have the signs that her digestive system is working great as the first of the milk is making it's way out of the body :).  I got to change the diaper :).

It's a good morning

Gwen had her right atrial line and pacer wires taken out. The nurse is looking for a rocking chair so we can hold her. We'll post some pictures when that happens.

She is having some "benign" heart arrhythmias and occasionally her gagging reflexes are kicking in for reasons we don't know yet. She getting some potassium for the arrhythmias. The doctor's say neither of these things worry them.  This morning's x-ray showed that part of her left lung was closed, so we are doing more chest PT's.  She also is on all breast milk and some lipids, and no extra sugars this morning.  She is on two diuretics.

I and some other CICU parents are having vertigo. It's really odd that multiple people are having it at the same time. Pray we figure out what's going on, or that it will at least go away.

Wednesday, March 24, 2010

Pictures of Gwen with Her Family

My camera cord came in the mail today so here are some pictures of our precious baby before the surgery.

Gwen and Mommy

Gwen, Daddy, and Lillian

Gwen and Grammy (Laura's mom, Jackie)

Gwen and Sani (Myers' mom, Lane)

Gwen and Aunt Becca (Myers' sister, me)

Captivated by Those Eyes

To look in her is breathtaking. Nothing in the world could compare. She hasn't really zoomed in on us yet, her eyes are can imagine she must be trying to make heads or tails of what's going on...I mean, beyond the heart surgery and all, but in general – she is a newborn and is only just discovering the world. And she's got something stuck up her nose blowing air – what an introduction to the world!

So today really is an amazing morning. Yesterday was difficult to see – about three times they had to put the oxygen mask to her face and watch the monitors as slowly, slowly her O₂ stats increased back to a more respectable range. The first time it happened (the morphine incident) we could only stand and watch, not knowing what was going on (I didn't know they had morphed her). There was a flurry of doctors and nurses, there were needles being prepped, and giant x-ray machine (all decorated with a space motif) was rolled into the scene. They had her sideways in the bed and all with serious demeanor's as they held that mask tight to her tiny, tiny face. But that, like the ventilator incident, through very scary to watch is behind us now and not nearly as scary as some of the other "flurry" activity we've witnessed around us. Please know Gwen is one of many, many sweet little babies struggling in their little bodies to recover.

By nightfall last night she was a little more settled, they did give her something to take the edge off – a very small amount (but not morphine of course). But Myers and I worked with her until she took her paci or was otherwise comforted. Now that she can be comforted when she cries, you can imagine, it is that much more difficult to leave her at night or anytime during the day. Before I couldn't do a thing but be near, sing songs, and talk to her and hope that somehow that did something for her. The nurses were everything. Now Myers and I are a part of her care – and what a challenge when you can't just scoop her up (but I'm not complaining, mind you)! But, we can still comfort her even as she is not "scoopable" right now - it often means our shoulders and arms ache as we reach over to hold her hand and offer the paci and then we hold still in whatever position we are standing to let her hold tight to our finger while she sleeps so peacefully.

Last night she was fussy and would have these full body shudders. I asked the nurse if she was hungry despite the nourishment being given through IV. The nurse told me she could hear grumbles in her tummy – that yes, she could be hungry. Imagine knowing that, seeing that and not being able to do anything about it? It was tough to leave her last night.

But, she did so well over night. They gave her a smaller nose thingy (but don't get me wrong, she still tries to pull it out). They have her off all the meds - all of them except one diuretic. She is getting a "trophic feed" – which is just enough to get her digestive system to kick into gear. Then they watch her as they slowly increase it, to see if her system is functioning well. Then, finally, hopefully tomorrow this poor child will actually get enough to fill her little tummy. Even with the trophic feed she seems to be so much happier – so I'm convinced that even that small amount is enough to calm some of her hunger. It is so good to know she's not starving anymore, and that, if all goes well, she's on the "fast track" for getting her milk.

Today they took out the IV and the line that they draw blood from. Those were both in her belly button. Tomorrow, again, if all indications are good, they will take out the line that go into her heart and the pacemaker wires (which she has not needed for two days or so and that is apparently really, really excellent – in fact, I found out today that they were "worried" when she needed to be on it, as that is not something that always is needed after such surgery.) To take out the direct lines into her heart they have to make sure her blood will clot well (they actually will give her a "clotting transfusion" or might need to do that) since there is a small risk of bleeding. So our hope is that tomorrow she will be a-go and do well for that procedure.

Grammy (Jackie) and I got to gaze into her eyes again later this afternoon (it has taken me all day to type this). She captivated us.

Good Morning!

Gwen was awake and looking at us for a little while. This is the first photo of her since her operation that doesn't look "scarry".
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O₂ now in the low 90's; She's getting some milk!

This morning Gwen's O₂ is now in the low 90's. She's been moved to "high flow", which is still something over her nose, but more comfortable for her. The nurse described the last thing she was on as like having a hair dryer up her nose.

We thawed some breast milk and she is getting over a feeding tube that goes directly to her stomach.

Tuesday, March 23, 2010

She Woke Up!

Gwenyth woke up for a few minutes, looked around for a while.  She seemed to center in on my voice.  I tried to welcome her by making funny faces.

Her O₂ is up to 85ish.  She is crying a lot.  I need to drag laura away before she gets too tired.

All about the Oxygen

Today's struggle has been with Gwen's blood oxygen saturation.  For most people it's around 95% or higher, Gwen has been around 70%.   At times today it dropped down to 50%, the first time it caused a mad scramble.  The doctors can see in her morning x-ray that part of her lung is collapses, that can be treated with Chest PT or putting her back on the vent.   I actually got to do the Chest PT for a while, which felt good to be part of her treatment.

It could also be influenced by the amount of fluid in her body.  She gained a lot of fluids in the surgery, and have slowly being loosing them.  They can add pressure on her lungs. She is now on a stronger diarrhetic.

We came in after dinner and she's up to 85%.  Perhaps her lung has expanded?  We'll find out when they see her morning x-ray.

Also, she's crying!  I'm sure most parents one week after having a baby would rather not hear more crying, but while she was on the vent she didn't make any noise.  It makes her more real to me.

Pray that her O₂ stats go up.

No Vent so far

Gwen is did not have to go on the vent. She likes her arms secured, with her hands up next to her face. Jackie and I are watching her sleep, while Laura and Becca are at the RMDH with Lil who is supposed to be taking a nap.

On the Vent Again?

EDIT: Gwenyth had a little bit too much morphine and MAY have to go back on the ventilator. Her lung is not functioning to its full capacity and they are worried about her not getting enough oxygen or if there is fluid in the lungs. Being off the ventilator is a big step in her recovery so she need to be off of it as soon as possible. They are monitoring her very closely now.

Please pray that her lung will function well and that the wall of her heart will thin out to the normal size.

May Go Back on Vent...Pray She Does Need To I now realize part of the reason they took her off the vent was to help her right ventricle. As you recall, this poor ventricle really got a work-out in utero - it is thickened and stiff now. Being on the vent doesn't help it relax, which is what they want.

She is still on the nasal air thing (sorry that's all I can remember to call it right now). That can also make the ventricle work harder. But, she needs to be on it.

However, last night her stats dropped and they did an x-ray [they do one every morning - myers]. Her right lung pockets are closed [only a lower part of her right lung. Perhaps a 1/8 of her lung -myers]. To hopefully open them they need to put her back on the diuretic as there is fluid they know building back up (not good for heart or kidney either).

Also, they do "chest pts" where they have a tool that they tap her with to try to get them to open. However, the nurse has not really been able to do it because she gets too upset. Getting to upset is not good for her right now. They are keeping her a little sedated to help (but not too sedated as that is not good for blood flow). [I was able to do it this afternoon for about 10 minutes - myers]

Her latest gas showed that all their efforts to keep her off the vent are not getting her where they want. She is a little bit worse as of the last gas. They will decide momentarily. Pray.

I knew steps back could happen. But we have been kinda spoiled. This is hard.

Monday, March 22, 2010

Test results say NO for 22q11 deletion

The one thing that is known to cause truncus arteriosus is DiGeorge syndrome. During the ammno they sent off a sample to test for DiGeorge but weren't sure when the results would be back. We got them today and she is negative. The doctor's think the test is pretty definitive.

Off the ventilator

Gwen is off the ventilator, breathing on her own. She has a nasal bridge giving some extra pressure "so she remembers to breath", so there are still tubes going up to her noise. When she cries we can she actually makes noise. It's wonderful, but it jerks your heart strings that much more. This is all going on as I type, it's hard to watch.

When she came off she gave a scare because she was taking a big breath to really let out a cry. They called it a terrible 2 like temper tantrum.

Pray I can get Laura away long enough that she can eat.

(Food what's that? Laura here to add something...please pray that she can stay off the vent...they are still working on her, but so far so good. Now they will see how she does today. More watching and waiting. Again, this situation is always one step forward with the possibility of needing to go back a little. Pray that she will keep eeeking forward. At this particular moment they are giving her something to chill her out a little, or "take the edge off a little". She doesn't like all the work they are doing as they get her off the vent - who blames her? I keep hearing these little cries....poor thing...)

Gwenyth Graham Carpenter: The night before surgery.
(Just a photo I took that didn't get put up with the last batch.)
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Continuing Down the Slow and Steady Path of Risk/Benfit Tradeoff

Today's Big HOPE: To be off the breathing tube and breathing beautifully and well all by herself.

So, we are watching Gwen now. She is off the paralyzing meds (as of Sundayish). Last night they took her off the sedation and took out the tube that helped drain the area around the heart and took off the gauze over her scar.

Today they are hoping she gets "annoyed enough" so they can take out her breathing tube (she needs to be a little more awake, in other words, before they will take it out).

She has these little crying spells, very quick, then she settles again.
Because of the breathing tube there is no sound. It is so hard to watch her face and know she is crying. We are trying to sooth her. She just seems agitated today...but I suppose that is expected since she is off the sedation.

Her eyes are mostly shut, but every now and again we see two very groggy, big blue eyes peer out - a first really since before surgery. But, I know she is still out of it, so what those eyes see and her mind thinks I cannot imagine. She has no frame of reference to pull from besides the two days of life out here before going under for surgery.

So, what is "annoyed enough" that will cue the doctors to take out her breathing tube? We thought her little bouts of crying spells were moving her in the right direction. However, as it turns out, she needs to be grabbing the breathing tube. So that's what we are watching for as my heart aches with each spell that I can't really do anything about. Come on Gwen - get mad and grab the tube!!!

They will take it out IF she doesn't have a lot of swelling in her trachea. It will have to stay in otherwise and await steroids to get the swelling down. It is not great for it to be in longer, it is not so great to be on steroids because they can hinder healing. As is EVERYTHING in this process it is a delicate balance of risk benefit.

We'll talk to the hematologist today. Her white blood cells were lower today, however, as we understand at the moment they would expect that after surgery. We still believe we are, thankfully, very thankfully, out of the woods in that regard, but it will be wonderful to hear it from the hematologist.

I miss my Lillian. I don't see her much at all, and it's hard to say "goodnight, I'll see you tomorrow when you come to visit me, okay?" Lillian however, is doing very, very well and I'm so glad. My mom and Myers' mom and Aunt Becca are all taking such good care of her.

Myers' and I settled into the Ronald McDonald house last night - that place is amazing - and I was overwhelmed to know that it was there for us, for us who are walking in a haze, far apart for the real word with heavy hearts. We have a comfortable room, we have dinner cooked for us, and best of all, Lillian could not have been more excited with all the play things and other children to play with. She didn't want to leave last night (she stays with Grammy and Aunt Becca at the apartment - which really works out well - as we can be on or own schedule even as I would love for her to stay with us at night).

Thank you for lifting our spirits with your prayer and comments. I have little time to get to the computer these days, so please know, even as I simply cannot respond to everyone, we here and we appreciate all your notes and care!

Sunday, March 21, 2010

Continuing to progress

Gwen is on a little less oxygen, no longer on a pacemaker.  She is progressing nicely.  Any time anyone mentions a timeline, they couch it in so many conditions and assurances that even if she doesn't progress along that timeline everything could still be ok.  It is an orchestra of numbers.

The last two days we've see a lot of visiting families.  We are so glad ours have been here all this time.  Lil and Suni when on an adventure this morning.

We are moving over to the Ronald McDonald house tonight.

Saturday, March 20, 2010

Slowly coming out of her deep sleep

The medical team is slowly weaning Gwen off of the drugs she's on, and she's showing signs of coming to.  She's partially breathing on her own, and she's trying to open her eyes a little bit.

Laura and I are spending the night in the hospital's sleep rooms again tonight.

Chest close; heart beating on her own rhythm

Gwen's chest is now closed.  The operation went smoothly.

Her heart is beating faster than the pacemaker, which is good news because it means it's finding it's own rhythm.

Her white blood cell count is up, and the bone marrow sample they got yesterday showed lots of Neutrophils.  They think that perhaps Laura had developed antibodies that were killing Gwen's Neutrophils, and that since she was on meds to stop the antibodies that shouldn't be a problem.

The are taking her off of the drugs that have her paralyzed.  So we should see her moving around tonight. They are also weaning her off of the ventilator slowly.  Once her central lines are out we will get to hold her again.

Becca and Lil are coming this afternoon and Lil will get to see Gwen for only the second time.  Hopefully Lil won't be too concerned about all the wires and tubes.

Closing up her chest

Gwen is having surgery right in the CICU now.  Dr. Spray came and felt now was a good time to close up her chest.  They leave the chest open after a open heart procedure because the heart and tissue around the heart swells, and there may be bleeding that would add pressure on her lungs and heart.  Gwen didn't swell very much and what she had has gone down.  She also didn't bleed much.   We are expecting a call anytime now telling us they are done.

Yesterday surgery was 110 minutes from when the heart and lung machine went on, until it went off.  One of the other surgeons who came by to get our consent for today's surgery told us that any other surgeon than Dr. Spray would have take three times as long. 

Gwen still needs our prays.  Pray that:
  • She doesn't get an infection
  • That did not have a stroke or have a seizure during surgery
  • Her kidney's keep working
Pray for Lillian as she's not totally comfortable with being away from Mom and Dad.

  • We had the best surgeon
  • We had the best nurse
  • We have such great help in the form of our mothers and my sister.
Gwen has gotten a lot of attention because of how rare her condition is.  It's very rare for anyone to have two donor valves.

We are making friends with the other families here.  They are showing us the ropes. 

Friday, March 19, 2010

Tonight when we left, Lillian passed out before we even go in the taxi. Poor baby is so tired. We decided she should stay with me tomorrow until after nap time and then we would go to the hospital. My mom and Jackie will go when they are ready in the morning.

Lillian is doing very well with everything but does ask for her mommy and gets very excited when she sees with Myers or Laura. She's still very entertaining and creative and constantly surprises us with all the things she comes up with or remembers. Last night when we were leaving the hospital she looked at me and said, "Patrick [my husband] miss you." I melted my heart that she thinks about me and him. She cares about all of us so much and we all love her to pieces. Laura has a list of things she's been saying we will post later on.

Laura was discharged so tonight she and Myers will be sleeping in a tiny closet/room with a bed in it at the hospital and hopefully tomorrow move over to the Ronald McDonald house. Next week we should be able to establish a little bit more of a routine and I know that will help all of us out.

Right now Gwenyth is going through a critical time. Dr. Spray told us this afternoon that about 8-12 hours after her surgery she might have a low time when her body really processes the surgery and all the changes. 12 hours is at midnight so she is half way through it.

Please pray for Gwenyth, especially in the next two days. Also pray for Myers and Laura, who are almost dead on their feet, that they will remember to take care of themselves and lean on all of us to help them.

Right now...

Gwenyth is back in the Cardiac Intensive Care Unit (CICU). Myers and Laura have visited with her and hopefully my mom, Jackie, and I will be able to see her soon. I want to touch her as much as possible so she knows that she is loved. Lillian is skipping her nap today because she can't settle down enough here in the hospital. Laura and Myers are doing well but are very tired and can't wait to sleep. Mom and Jackie are on the phone a lot, spreading the news.
They are discharging Laura at 6 tonight and Myers and Laura might be spending the night in some family rooms provided by the hospital and the Ronald McDonald house and then moving to the Ronald McDonald house tomorrow.
Although the surgery went well, there is some risk for Gwenyth in the next 24 to 48 hours. The risks are arrhythmia and bleeding. Her heart muscles are thick because of her leaky valve and that may cause her to have arrhythmia so to counteract that they are slowing her heart down with medicine and controlling the beats with an external pacemaker.

Repair now done

Our CICU nurse just called and told us the repair work is done.  Gwen was cooled down to slow her blood flow, and she's now being warmed up.  She's still on a heart/lung bypass, and will be until they give her an echocardiogram.  If they kept her native valve, it's possible they might decide after seeing the echo that they will have to reopen her heart to replace it.

The hope was that since she was having 2x to 3x the blood flow through that valve that once they put in the pulmonary artery the valve will still be leaky and narrow, but acceptably so.  If she can keep her native valve there a better chance they can push off the next surgery until she's large enough to have more options.  Her only option for a replacement now is a donor valve (or homograph), but if her heart was larger she could use artificial valve, which won't wear out, but will require blood thinners.  She is already getting a homograph for the pulmonary artery.

UPDATE:  Our CICU nurse just visit us in person.  They were unable to repair her native valve, so she has a double homograph.  This may mean that she will need surgery in the next year, as opposed to two or three years (which would be due to her outgrowing her pulmonary artery).

Pictures from last night and this morning

The nurses decorate Gwenyth's bed. We found this after the first night.

Last night around midnight we got to hold Gwen for about an hour.

We woke at 5:30 and saw the sunrise. The sun bounced off one of the hopital buildings into the CICU.

Laura rocking sweet Gwen.

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In the Hospital Room

I am now a contributor to this blog. That way my poor brother and his wife can get some rest and spend time with the jewel that is Lillian.

We are sitting in the hospital room, looking at pictures of Gwenyth or entertaining Lillian. By "we" I mean Sani (Lane), Grammy (Jackie), Myers, Laura, Becca, and Lillian. Myers is picking out which pictures to post, Sani and Laura are helping Lillian with her new princess toy, and Jackie is about to head off to get some coffee and tea.

We've had a visit by a nurse names Laura who has 20 years experience with heart babies. So now Gwen has one of the best doctors and one of the best nurses!

I got to visit with Gwen last night and I have to say that the pictures don't do her justice. She has little rosebud lips and a little upturned nose like Lillian. She was very wiggly and stretched her legs out. She cried and little bit but stopped when I put more of my hand on her leg. I love her so much!

Gwen is now in surgery

Last night we both got to hold for a while. It was wonderful.

We got a tiny bit of sleep and left our room at 5:45 to spend time with her before we walked with her down to the operation room door. For some reason they were late starting - so we were with her as the sun rose and peaked in on her and we were there until 7:45ish when they were ready.

They wheeled her into the room - our sweet little baby... Myers and I went up the elevator to meet with Dr. Spray.

Today we will find out if her white blood cells showed up. In the meantime, during surgery, they will take some of her bone marrow and try to figure out what's going on if the white cells still seem to be in hiding.

Today Dr. Spray is going to do everything he can to make her native valve be usable. [Laura got interrupted with this and is now resting... I'll just post this as is - myers]

Surgery Tomorrow at 6:30am

Gwenyth's base is negative. That means a lot to all of you I know, but in actions that translates that she's been bumped from "2nd case" to "1st case" meaning she will leave the Cardiac Intensive Care Unit (CICU, aka Myers and Laura's new home for the next few weeks) for surgery prep at 6:30am rather than 11ish.

The surgery will last for 4 1/2 - 5 hours. We'll get to talk to the surgeon Dr. Spray before and after the surgery, and we'll get updates every hour. Which will leave us a lot of time to update this blog.

In a few minutes we hope to get to hold Gwen for a little while.

Pray that Gwenyth's stats remain the same overnight. They are hoping that by scheduling her surgery earlier that they will not have to start "interventions" such as a breathing tube to hold her over until surgery.

The 48 hours after surgery are critical. Pray that it all goes smoothly.

Thursday, March 18, 2010

Mom and me

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Surgery Tomorrow

Although we haven't been told formally we overheard that plans are for surgery tomorrow.

Prayer Request: Neutrophil White Blood Cells

We saw Gwen for a little while, and talked to the fellow that's watching her today. She told us that Gwen has none of a certain type of white blood cells called Neutrophils. It's not a sign of DiGeorge syndrome, which is something we are concerned about. It's possible that they might just start showing up. Pray that they start to see some soon.

Day 2

Today has promised to be a flurry of activity. We have to talk to a bunch of doctors and other folks from the hospital. Lil, Jackie, and Becca are coming to visit in the afternoon. My mom arrives late afternoon.

I think the best moments will be when Lil and Gwen meet for the first time.

Mom and Dad come visit me

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Wednesday, March 17, 2010

I got to hold her!!! She is so, so sweet!!!!

I have my baby that you all prayed for - thank you all!! Thank you God. She is here! My St. Patrick's Day baby!!!

I just finished watching some of the video Myers took down the hall at the Cardiaic ICU. She is just as calm and as sweet as can be even with all the lights (which Lil said, with much concern upon seeing the bed Gwen would be in, would "scare Gwenyth").

They did take her right away for a spell, right after she was born. They took her into the room next door with a special window - and we could hear her crying for a little bit at first, and then Myers could watch as they did the standard cleaning hooked her sweet little belly button up to some tubing.

Then, they brought her to me, and carefully adjusted all the wires as they passed her to my arms. She started to cry as they passed her along and she settled the moment she was on me and heard my voice. I know it's totally impossible, but this little girls face, even with the eye drops, radiated such delight - delight in hearing her parents voices, delight (I swear a smile) when we mimicked her "talking" to us, and to see her eyes look over to Myers to find where his voice came from - she amazed me beyond words. You would never dream, from looking at her that anything at all could be wrong with her.

Myers went back to be with her, if they will allow, during the tests she will now undergo. There seems to be a chance my sweet, perfect, perfect-looking, little girl may have to have her surgery this week. I thought maybe since it was so late in the week, she wouldn't be scheduled 'till Monday. I suppose it is better than waiting - but now that I'm on the other side of her birth and can let my brain now take on what she faces next - I don't know just how I will walk forward from here. I want to swaddle her and take her home so bad it hurts. I want her to be okay....I want her to be more than okay. I don't want to loose her, I want her forever. Please God, bless this baby with all the strength in the world and the best surgeon in the world - please let her be fixed and be okay.

Mom, what are these guys doing?

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We have a BABY!

I can hear her crying in the next room. Laura is in better shape than with Lil.

Gwenyth Graham Carpenter
7:15 (official)
5lb 15oz

Our Cast: The Doctors and Friends

All the folks from the last shift are doing it... even though it's 5 minutes after their shift. As near as I can tell there are only 2 other families on the floor, so we are excitement of the day.

"She's not resting. She's Hypnobirthing."

Said by Nicole to the neonatologist in the stabilization room next door.

8 cm! We're going in!

That's 4cm to 8cm in 40mins.

Laura reports need to push; folks are being paged

Unfortunately right at shift change... but things are still working. She's had chills and tingling they think is from her breathing pattern. Asked her to slow down the breathing.

4 cm; 90%; -1

What more really needs to be said? Oh and the sound of typing bugs Laura.

Update from the delivery room: Now with harder contractions

At 3:20 the OB came in said she was going to check on Laura's progress at 4:30. Not 15 minutes later she was back, saying that the contractions where coming rapidly and they'd like to checker her now. Finding that she was only at 3.5 cm, they asked if we'd like to break Laura's wat... I mean cause membrane release. We decided to go with it.

Laura has said the contractions feel much harder, so it seems we are moving a bit faster, which is exactly what we hoped.

Update from the delivery room

Laura is having regular contractions, they've backed off on the pitocin, and at 12:30 was at 3cm (from 2cm at 7 this morning). Gwen has moved from station -3 to -2. We want more like 1.5cm per hour, but I don't think they'll check again until 4ish.

The good thing is Laura is relaxed. So relaxed she's asleep. When she was awake she was breathing nicely through the contractions.

Now on Pitocin

Laura has been on pitocin since 9am. We are having contractions every 3 minutes or so. Laura actually went to sleep for a while.

Tuesday, March 16, 2010

In the hospital room

Laura and I are in the hospital room, getting ready to spend the night. Lil, Grammy and Aunt Becca are taking a taxi back to the apartment. We are praying that Laura will go into labor tonight.

Before we came in, we stopped and had some awesome Austin style BBQ. Laura wanted to eat up since they won't let her eat in the hospital.

St. Patty's Day baby!

We got the phone call around 11:30ish today...

Tonight I am to report in to CHOP around 6:00-7:00. The induction is a two step process but tomorrow is when Gwenyth will most likely to make her appearance.

So many feelings right now...I can't wait to hold her if only for a moment before they have to take her for the echo and any other testing and hook her up to whatever it is they plan to hook her up to.

I know Lillian will be okay...but those of you who know me, I never do well in the time before I know we will be parted...and of course this is a bit more than a few days and nights out of town, our life together is changing and the transition will be more challenging than the typical adjustment to the "new baby". Becca and my mom are so wonderful with her and for that I'm very grateful, but my heart is still heavy for all that I know Lil will have to process in the days to come.

Pray for a strong baby girl who will be ready for the doctors trained hands and have nothing else to complicate her situation.

Very soon we will know for sure, the anatomy of her heart and have a final diagnoses and we will also know what day she will undergo surgery...

Thank you - to everyone who is keeping her in their prayers - I am overwhelmed by the care and support we have received and am so appreciative.

Saturday, March 13, 2010

"Borderline" - A Result We Didn't Expect

Having not really thought about it, nor having been told that the first test they send out could show the lung maturity to be "borderline" we were a bit taken aback to hear that news today. However, I suppose it makes sense that there has to be some grey area when testing for such a specific and important detail. At least we know her lungs are not underdeveloped - so that is good news (no steroids needed). Now we wait for the second test which involves the Amnio being sent to Utah. Crazy huh?

To explain more clearly, two tests are done for lung maturity. The first test is done fairly quickly and if it is positive then they don't need to bother with the second test. So, in Gwen's case, they will be sending in the second test since the first one only reported a "borderline" result.

So, we are now told that "realistically" it will be Tuesday before results are in, which means Tuesday night would be the start of the induction, IF the results are postive. Perhaps she will be honoring her Irish heritage on my "Sammon" side of the family and be a St. Patrick's Day baby (Bob, you may have called it)!

If they cannot be sure her lungs are ready, then Thursday is the day, 37 weeks is the magic number, somehow they are sure her lungs will be "done" by then.

This whole thing is just crazy.

Thursday, March 11, 2010

Moving Along Towards Gwenyth's Birthday

We are moving along now... The Amnio is done (thank goodness) and there is indication already that the lungs are mature, but they won't know for sure till they run the tests...but Monday is looking more and more like the day I'll go to the hospital and spend the night as they start the induction. This means that sometime Tuesday would be Gwen's birthday! Now we just wait, and wait, and wait....the call will come tomorrow or Monday.

We took Lillian and my mother to the hospital for lunch today. Lillian had fun and she is handling everything very well.

Becca's plane will arrive around midnight on Sunday, so Lil will have the best of caretakers, I know.

p.s. Just something to keep in mind - in the next few days we may also learn about DiGeorge syndrome/22q11 deletion or any other disorder from the Amnio, as the docs insisted on testing for all that now. If they cannot get results from this Amnio, we will learn for sure, after she is born. Please pray that she is free of anything else - that her issues are only limited to the heart, and there are no more complications with her heart, that nothing else is amiss.

Monday, March 8, 2010

Three in 30 Years of Surgery

That is what our surgeon told us was his experience with surgery on babies with Truncus Arteriosus complicated by a valve that is both a leaking and stenoic. She is in the rare category of rare.

Today when the surgeon used the word "stenoic" he referred to the single artery (the turncus) being narrow at the valve. As I understand it stenosis can mean either stiffening or narrowing, so apparently in her case it is narrow not "stiff" as I thought previously. In any event, the stenosis causes the heart to have to work harder to gain enough velocity to push the blood through, and her heart muscle is therefore thickening over time, as would be expected. The leaking valve, well, that is obviously not good either and also strains the heart. So, again, it was stressed, as soon as her lungs are ready, they want to induce and get her stable and then into surgery. She is more at risk now than during surgery, even as far as she has come.

A Surgeon for Gwen!
Today, yes, we met our surgeon - and honestly - I am in awe of answered prayer about how it came about.

The first part was basically clear guidance in helping us make our choice. At our first appointment of the day the sonogopher said something that indicated she assumed we were going with Dr. Spray as our surgeon. I told her we still had to choose and she indicated, that in our case, she really would go with him. So, that was all we needed as we really trusted her assessment of everything. We would request Dr. Spray even as he might be "hard to get".

But, as it turned out, we didn't have to choose. In fact, when I met with my nurse coordinator after the fetal echo, she was sure we had already expressed our wishes when we were here a month ago. According to her, Dr. Spray was our surgeon. We got the guy they explained everyone wants but is hard to get because he travels so much - who they essentially told us not to bother asking for because he is often out of town or booked because he is requested so often. It was so out of my hands I couldn't believe it - I didn't have to do a thing and we are set and Dr. Spray is not leaving town anytime soon. And after meeting him today we are assured that Gwen will be in the best hands. Praise God.

A Clearer Time Frame for Gwen's Arrival Date: Sometime Between Monday the 15th and Friday the 19th.
The Amnio is scheduled for Thursday at 1:00. This means she can be born, if I understand things correctly as early as next Monday! If her lungs are not mature the will use steroids to bump up their development and induce no later than 37 weeks.

The goal is to get her into surgery within a day or two of being born. Of course, that is IF she is stable. It is really impossible to predict, based on her less than optimal valve, how her heart will handle things once the lungs become part of her circulation. There is always the chance that she will need surgery immediately - we pray this will not be the case. There is also a chance that she will need more than a day or two to be stabilized and strong enough for surgery. We pray also, that this will not be the case.

One Last Technical Detail - The Valve Replacements
We learned today that she will in fact NOT have artificial valves used for either artery, but instead they will use a "homograft" - non-living, human donor valves. We are still hoping and praying that her native valve will surprise us all and be "fixable" and usable as the aortic valve, as that is the best case scenario. However, if they must use a homograft, we were pleased to learn she would not require blood-thinners as would and artificial valve (see earlier post). The bad news with a homograft on the aorta however, is that she would need more frequent surgeries to replace it as she grows.

Sunday, March 7, 2010

"Hello trees, I'm going to Philadelphia!" - Lillian in the car to the trees out the window

So....we made it out of town, out of Virginia. I tend to take a long time to leave the house - I under estimate what I need to do and how long it will take. So, we did get a late start...and we did hit quite a bit of traffic on the D.C. beltway even as we thought we were late enough to miss the rush hour. But, we made it here and Lillian was a great little traveler.

My mom and dad had already arrived here and they welcomed us into our new, temporary -home. It's a furnished little two-bedroom on Antique Row in Center City. It has pretty much everything we need and I actually enjoy walking to buy grocery's and such. Everyone in Philadelphia is so friendly too. I love this warm weather too.

The only detail that has me concerned this weekend, is that Lillian for the first time ever, woke last night saying she was "scared" and I invited her to come sleep next to me and she actually took me up on it. She's had what I would call nightmares before, but always just went right back to sleep... My heart breaks to know I will not be here for her in the near future as she will stay with Grammy and Aunt Becca here at the apartment and Myers and I will call the Ronald McDonald house home so we can be nearest to Gwen.

Lillian adores Grammy - in fact, she will "cook" for Grammy and not for me when Grammy is around. Aunt Becca is also ton's of fun for Lillian. So, that's good...but even so it will be difficult for Lillian to not have me around that's hard to just accept that Lillian will have to deal with the situation and there is not much I can do. Lil is so happy, so sweet-natured and always seems to go with the flow very, very well - but I fear this will challenge all that so, so much. It is hard. Tonight, as I type this, she is having trouble going to sleep - talking about "creatures" coming in and scaring her; but she wasn't really all that freaked out and so I just sang to her and she did go to sleep eventually. But this is all out of the blue, she's never been like this before.

So, tomorrow (Monday) will be another long day of appointments and doctors. They will set a date for the amnio to check her lungs. By the end of tomorrow we'll know when this next step will take place. After the amnio we'll know when we will be welcoming Gwen into the world.

I don't know if I'll meet any of the surgeons tomorrow - somehow or another we are supposed to choose one. We will "tour" all the hospital units that will be part of our experience. We will talk with researchers apparently too, about what I have no idea. I don't expect to have any new light shed on her condition, but they will do an ultrasound and an echo-cardiogram of her heart - please be praying that she is growing well, that her valve and general heart function has not changed any in the last month, and that we will have wisdom in selecting a surgeon.

Thank you to each person who has sent me notes of care and support, for the other "heart moms" out there who've shared their story and are walking with me, and for all the prayers that are holding us up, but especially holding up Gwenytyh - she has come a long way!

Ten years loom and as always seems to be the case, I find myself struggling the most in the days ahead of the anniversary  - be it her birt...