Well....today 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 part...it 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."
Wednesday, March 31, 2010
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.
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.
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.
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 part...so 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.
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 part...so 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 strange...is 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!
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 strange...is 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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