Home Sweet Home

We made it home!  What a great feeling.  We got home really late last night...the early morning discharge did not work out at all.  They had a lot of stuff that we had to get done before Hope could be discharged.  Finally, around 7pm we were done with everything and loaded the car with all of Hope's stuff (yeah, she had a roomful) and made it home a little after 8pm.  It was actually kind of scary driving home because Jerry and I were in separate cars and I was worried the whole way home that something might happen.  We got everything organized and set up and finally went to bed after her midnight feeding.

Today was our first full day at home and even though it was hectic and we had some learning curves, it was perfect.  We had the pulse ox delivered and Hope was at 84...higher than most of the time at the hospital!  I think some of it was from the nice air she was breathing outside.  Yes...the weather was nice enough for her to spend a little time watching the boys play.  We also had the home health nurse come over and talk to us and show us how to do everything else that we need to do every day...like weighing, feeding, medicine, etc.  Some it was stuff we already knew, but we both had to be here to make sure we both know how to do everything we both know the schedule.  I put together a spreadsheet with the days and times everything needs to be done.

I am posting a bunch of pictures from the last few days.

Pretty in Purple

Look at all her stuff....this is from the first trip to the car!

Dressed for home:

In her new car seat

I want to thank everyone again for everything they have done.  I know everyone went out of the way to help us and we appreciate all of the help more than words can express.

Homeward Bound

So far, so good.  It looks like I am bringing Hope home tomorrow.  I am spending the night at the hospital to make sure I know her full schedule and then I am getting tested tomorrow on replacing her NG tube tomorrow.  So far, everything is looking good for her to be discharged...just not sure what time.  When we get home we will have a few visitors delivering stuff for her.  She will get her own pulse oximetry machine that checks her oxygen saturation levels.  I will need to check that at the same time every day and call the cardiology nurse every day with the results.  I also need to weigh her and give the nurse that information as well.  I bought a scale and I am hoping that will be delivered tomorrow or Thursday as well.  The home health care agency will also be delivering a food pump for her NG tube and I need to be there so they can show me how to use the machine.  I guess it is a little different than the ones they use in the hospital.  I am sure it won't be too difficult to figure out, but it is nice that they will be showing Jerry and I how to use it.

Today has been pretty uneventful around the hospital which is great.  I brought a suitcase to pack up all of Hope's stuff...and there is a lot.  Marilyn and her family bought Hope a new stroller and car seat which is awesome.  It is pink and brown and I have strolled the halls of the step-down unit to get her comfortable with being in the car seat.  She kind of liked it, but I know that she enjoys being carried around a lot more.

I have requested an early discharge, but I am guessing early around means sometime in the afternoon.  I asked for 9am...let's see what time we actually get out of here.  It will just be so great to be taking my little girl home for the first time.  I am sure the boys will love seeing her and we can finally all be at home.  I am so excited and I think Hope is as well.

I didn't bring the connection to download pictures, but I will get some posted tomorrow when we get home.  I know I will be taking a bunch when we are getting ready to leave.

Boys Visit and Pictures

Today was a wonderful day with Hope...other than her throwing up two of her feedings (more on that later).  Because Hope is basically OK to be discharged for rehabilitation I was allowed to take her out of the step-down unit to the 4th floor waiting room.  Jerry and the boys were there waiting for us.  They are not allowed in the step-down unit because of flu season, so they have not been able to see her for almost a month.  They have missed her and I think she has missed them as well.  I spent 1/2 an hour with all of them and it was the greatest 1/2 hour I have spent in a really long time.  I felt like we were a family for the first time in a long time because we were all together.

Tomorrow Jerry and I are taking a tour of the rehabilitation center to see where Hope will be going for a little while when a bed opens.  They don't think she will be able to get in until sometime next week...I am hoping for early next week.  The sooner she gets in there, the sooner she can come home.  I am getting prepared to learn how to measure and insert the feeding tube.  I get the feeling that she is going to come home with a feeding tube and I need to know how to check and change it before she comes home.  I already know how to check it...that's the easy part, but changing it is the scary part for me.  If you insert it wrong, it can go to the lungs rather than the stomach and that is what scares me the most.

Now to the problem with throwing up...I am sick of it.  I really wish I knew what was wrong, but I really don't have a clue.  They are going to have an ENT (ear, nose, throat) doctor take a look at her on Monday to see if there is any problem in those areas.  I have also asked if they could have a stomach doctor take a look at her...it looks like she is throwing up a lot of mucus, not formula.  She is also not throwing up during the feeds and it is happening with both NG feeds and when she is fed with the bottle.  The weird thing to me is that it is happening about an hour after she is done eating and it is not happening with every feeding.  It is puzzling to me and I am hoping maybe a doctor can figure out what the problem is...she really needs as much food to stay in her as possible.  Big news this morning...she now weighs 2.7 kilos (she was in the 2.6s for so long).  That is almost 6 pounds!!!

Thank you once again for keeping us in your thoughts and prayers.  We appreciate all of the support we have received through this journey.

Devasted - Aiden Passed Away

I have no idea what to write that could describe how I feel right now.  I am devasted and crying my heart out for Aiden and his mom and dad right now.  It is something that I fear every single day and I know all heart parents have the same fear.  When one of our own dies, it makes the reality that much harsher...our babies are gifts and they are very fragile.  They are miracles and every day they are with us is another day we can feel the grace of God.  But, it hurts so much to think that another angel has his wings...even though his heart is now healed and he is living in heaven.  Please keep Levy and Tracy in your thoughts and prayers.  I can't imagine the pain and heartache they are going through right now, but I know they need the healing from our prayers.

Following is a poem that Stephanie Husted wrote that describes better than I can write how I feel:

The Day I Became a Heart Mother

One day my world came crashing down,
I’ll never be the same.
They told me that my child was sick.
I thought, “am I to blame”?

I don’t think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved her for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.

I will learn all that I need to help my child thrive.
I’ll even use that feeding tube.
My child must survive!

Will she need a lot of therapy?
Will she gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.

As another Angel earns his wings,
I run to my child’s bed.
I watch her sleep for quite a while.
I bend down and kiss her head.

I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can’t know your ways….no matter how I try.

And yet, I trust you hold her life, and guide us through each day.
My mind says savor each moment she’s here,
but my heart begs, “PLEASE let her stay”!

From pacing the surgical waiting room, to sitting by her bed.
From wishing for a good nights sleep, to learning every med.
From wondering, “will she be alright?”, to watching her reach out her hands.
With every smile my heart just melts, despite life’s harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.

That scar I trace with my finger (It’s the door to her beautiful heart).
God must have known how much I’d love her (Just as He loved her from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for her (and no other).
I will always embrace that beautiful day…….
When I became a “Heart Mother”.

~Stephanie Husted

Rehabilitation Center

Well we got the word and the OK to go to the Cleveland Clinic Children's Rehabilitation Center as soon as a bed opens for Hope.  They will spend their time trying to get her to take her bottle better and trying to get her to gain some weight.  She is still hovering around 5 1/2 pounds and they really want her over 6 pounds before she comes home.  We would all like her to come home without the NG tube, but we are realizing that may not happen.  They are more worried about making sure she is growing than making sure she is taking the bottle because she has another surgery right around the corner and they want her big and strong for that surgery.

She has been eating pretty good from the bottle for me when I am able to feed her.  They still want her to only take the bottle for every other feeding, so that makes it hard.  She gets fed every 3 hours, but a bottle only every 6 hours...not often enough for me to get in more than two or three bottle feedings a day.  The other times she is doing the bottle with the nurses or the physical therapist, and then she only takes 10-15 mls.  With me, she usually takes around 15-25 mls.  Still not the full bottle, but we are getting close.  We rest a lot during the feeding and it seems to help her take more of the bottle.  No throw up today, so that is GREAT!!!  She really tries to take the bottle, but gets so tired that she ends up falling asleep at the end.

I want to thank everyone for their comments from my last post.  I am trying not to feel so guilty all the time and I know that I am doing the best I can for my whole family.   We will make it through this and 5 years from now we will all look back at this time and realize that the time spent apart was well worth it...Hope will be thriving and hopefully done with all her surgeries!

I have to tell you that one of my heart friends from BabyCenter was at the Clinic with her son Doug yesterday.  He had surgery and had to spend the night in step-down.  He is the cutest little guy and his parents are the greatest.  He has been through a lot in his young life and was still smiling like crazy when he was leaving today.  It is such a heart-warming feeling to meet other heart babies and see how well they are doing.  It gives me so much encouragement and hope and acknowledges that I made the right decision to bring Hope to the Clinic and have the surgery that has saved her life.

I left my camera at the hospital again, but I will post some new pictures tomorrow.  Hope has managed to wear all the clothes she is able to wear...they have to have front snaps...and I finally have a full load of laundry that I need to clean for her.  I can't believe after everything that we have been through in the past 6 weeks that I have a load of laundry to get done for my little girl.  I try really hard not to think back to the day at Akron Children's when they told us they would not do her surgery, but today I did and I am so happy that we got the second opinion and that I have a load of laundry to do for her.  Anyone that knows me knows I HATE doing laundry, so this is HUGE!!!

We want to thank everyone again for keeping us in your prayers.  Please also remember to keep our other heart friends in your prayers as well.  Erica and Paul's little guy is doing really good and I think he will be heading to step-down this weekend or early next week (just my prediction).  Levy and Tracy's little guy will be heading in for his surgery on Friday.  You can follow their story here.  One last person that I would like everyone to pray for is Lisette and her little Sami.  Sami is due in a few weeks and Sami has had the most eventful pregnancy of anyone I have ever known.  Please pray that the rest of the pregnancy is great and that she able to enjoy it without the excess fluid and no more itching.  You can follow her story here.  Please keep all heart babies and their parents in your prayers.  We all need them every day!

One last thing (I got this from another heart mom's website) which you can find here:

The Congenital Heart Information Network needs your help and a minute of your day..

It's that time of the year again when many CHD organizations are gearing up their efforts in spreading their CHD awareness message.

Please take this brief survey and help shape the focus of CHD Week 2010/2011 for The Congenital Heart Information Network.
 
You can find the survey at: http://tinyurl.com/yly46g7

Please share also this message with families and friends affected by CHD.

Guilt

I am trying to figure out how many different ways I can feel guilty lately.  I feel guilty when I come home because I am not spending time with Hope.  There are parents that stay at the hospital all day and night and I feel so guilty when I go home.  Then...I go to the hospital and leave the boys with either Marilyn, Danielle, or Jerry and I feel guilty leaving them.  They miss having their mommy with them and Paul has started holding onto my leg and crying when I leave him.  I know it doesn't last long, but it breaks my heart knowing that the boys do not get my full attention all the time.  I feel guilty asking everyone to watch them too because I don't have anyway to repay the favor.  I am spending every minute I can at the hospital and with the added expense for gas and the hospital bills, I can't really afford to pay anyone for their help either. I spend so much of my day feeling guilty about something or other and I am wondering when that will end.  I don't want to take advantage of anyone and I don't want anyone to ever feel that they are being taken advantage of either.  I am sure my guilt with work will start soon too.  I am starting back on Monday and I know that everyone has been picking up my slack while I have been on maternity leave.  I want to jump right back in because there is a new release out and I know that the sales teams are wanting to demo everything right away.  I still need to get up to speed on everything and start building out our demo environments.  I haven't been keeping up since I have been on maternity leave and I feel guilty that I will probably need to spend the first week back just getting caught up on everything that has happened. 

On to a lighter note...Hope is doing pretty good.  She is eating very good for me...almost 30 mls yesterday.  She is having problems with other people feeding her though (another reason for me to feel guilty).  It seems that she threw up two bottles yesterday and no one can figure out why.  She really needs to gain weight so she can come home, but when she throws up her food, it is definitely a set back.  They also started her on Digoxin which is a heart medicine that will slow done her heart rate.  Her heart rate is still pretty high and they want it to be a little lower so she doesn't have to work so hard.  I guess that is also keeping her from gaining weight because she is working so hard to just breathe. 

I still haven't heard anything about when she might be able to come home.  She may have to keep the NG tube in when she comes home because she is not taking enough in through the bottle to take her off the NG tube.  They are also talking about possibly sending her to rehabilitation to work on her feeding more.  I think she is doing pretty good considering she was a month old before she even had a bottle. 

Please continue to pray for our family and say an extra prayer for Hope to start eating better and gaining some weight so she can come home. 

Thank you for your thoughts, prayers, and support.  Words alone cannot express how grateful we are for everyone that has been there for us.

Happy Sweetest Day

For those in Ohio, you know it is Sweetest Day.  For most of the rest of the world...this is basically a made-up holiday because we have American Greetings and Hallmark based in Ohio and they created this holiday for couples to celebrate (much like Valentine's Day).  Anyway...my wonderful husband got me chocolate covered strawberries, a beautiful bookmark, and D'linQ bracelet with all my children's names on it.  Of course, my step-daughter (the best in the world) Destiny helped him pick everything out!  She is great and knows exactly what I wanted.

I didn't get a chance to post yesterday because I was at the hospital late and didn't get home until really late and wanted to spend time with my boys and Destiny before everyone went to bed.  Not too much happened yesterday anyway.  Hope got her first diaper rash and you would think it was like asking for a million dollars rather than some diaper rash cream from the nurses.  I guess it is something that has to be ordered by a doctor and that didn't seem to happen until today.  I decided to bring my own Aveeno diaper rash cream rather than waiting.  I know she feels better today!

Hope ate really good for me today.  She has been averaging at least 20 mls at each feeding for me.  She doesn't do that well for the nurses, but I think it also has to do with the times that I am feeding her.  She is really awake when I am there...not like 3am when they try to feed her.  Today I think she ate too much too fast because when I was burping her, she threw a lot of it up.  I felt really bad for her and had to change her clothes, her blanket, and her little monitors, and give her a little bath too.

Please be sure to keep baby Kylan in your prayers.  He is the little guy that has hypoplastic left heart and had his surgery last Wednesday.  He had a few seizures and has some bleeding going on in his head.  I will be praying that they are able to stop the bleeding and he will be able to get off the vent and move to step-down next week.  He is a strong little guy and Erica and Paul are wonderful parents.

Destiny came up with Jerry today and spent a while with Hope.  She held her for a long time and I know Hope loved it.  She was awake and alert and looking right up at Destiny almost the whole time.  I wish the boys could come up to visit Hope, but the restrictions are preventing it.  They will have to wait for her to come home.

A couple other happy items to report.  They finally took the IV out of her head.  I didn't even realize it until I was messing with her hair and noticed I didn't have to watch out for the IV.  She looks so much better without it!  Her incision looks really good.  They don't even keep it bandaged much anymore.  There is one small area that they keep bandaged because the stitch got a little icky, but that's it.  It doesn't look nearly as bad as I was expecting.

Thank you for keeping us in your thoughts and prayers.  Please continue to keep our family and our 'heart families' in your thoughts and prayers.  They are working and we feel the hands of God every day!

CHD Poem

This is a great poem to remind everyone how common Congenital Heart Defects are and the need for additional research on how to prevent and/or cure all of the CHDs.  It is, of course, written by Stephanie Husted. 


Somewhere....someplace...today....
A family is waiting to hear.....
Is something wrong with their baby?
The answers aren't quite clear...

This family has entered an unwanted world...
And they just don't know what to expect...
Somewhere...someplace...today
They first heard the words: heart defect.

And how they hoped this was not true...
And thought...this cannot be...
I too...know just how this feels..
This happened to ME...


Somewhere...someplace...today...
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...

They haven't got to hold her yet...
Without...a cord or line...
They pace the room awaiting news...
And hope she'll be just fine.

Prayers fill this busy waiting room..
And mom and dad are scared...
Somewhere...someplace..today...
The tiniest hearts are repaired.

Somewhere...someplace...today...
A child's growing fast...
Smiling, laughing, thriving...
Her mom thinks...can this last?

It's almost easy...to forget
That anything is wrong...
Somewhere...someplace...today...
Her child seems so strong.

Somewhere...someplace...today...
A little girl fights...just to live...
A father holds her tiny hand...
His love...all he can give...

The doctor's are all baffled...
They fear that she might die...
Somewhere...someplace...today...
A family says goodbye...

Somewhere...someplace...each year...
More than 40,000 families will see...
What it means...when something's wrong...
They'll face a CHD.

Today...for just a moment...
Stop...remember...reflect...
My life has been forever changed by a heart defect.

Hands On

The step down unit is more hands-on and it is meant to teach parents how to take care of their children when they go home.  By the time Hope comes home I will know how to feed her, bathe her, give her medicine, and know if there are any problems.  They will be spending a lot more time with me showing me how to do everything and I will be talking to someone every day when Hope comes home.  I will need to track her feeding, her oxygen saturation, and her weight and I will receive a call every day to let them know what all the numbers are. 

Today I spent the whole day holding Hope.  They put her on a new monitor so I could actually carry her around.  I did that for a few minutes and she fell right to sleep.  I also fed her a little bit (17mls) and then she got tired and went to sleep.  I am hoping she will be that easy to comfort when she comes home!

Danielle got Hope a cute pink pacifier and she loves it.  The best part is that it is the same size as the nipple on her bottle, so the therapists told me it would help with her feedings too.  It is so nice to get into her room and see her all decked out in pink.  She was even dressed today and looks so cute!

One Month

Hope turned one month today...HOORAY!!!  After such an uncertain beginning, it is the greatest feeling in the world to know that she is a month old.  I keep looking back to that Tuesday at Akron Children's Hospital when the doctors told me that they didn't feel she was a good candidate for surgery and when I see her today...I am thrilled that we decided to get a second opinion.  I fully understand why the doctors in Akron felt the way they did because medically Hope is a miracle.  She is doing so much better than any of the doctors expected...including the ones in Cleveland.  God is definitely playing a HUGE role in Hope's life.

I got to feed Hope a bottle today when I got to the hospital.  It was the greatest feeling in the world.  She drank 22mls and she really seemed to enjoy it!  She got a little fussy and tired, but I know that she will get better and better every day.  It is just the best feeling in the world to be able to hold her and even better to give her a bottle.  It seems so 'normal'.

Mom and John came up today too.  I know my mom enjoyed holding Hope for a few hours.  Now, I just need to borrow a rocking chair when a baby gets to go home.  I have found that is the way to get new stuff for her room.  I get to take advantage of the good fortune of others...they get to take their little one home and I get a new chair.

I also wanted to let everyone know that Erica and Paul had a long day yesterday, but it was worth it.  Their little one came out of surgery and is doing good.  I haven't seen him, but his mom and dad got the news about 6pm last night.  YEAH!!!

Bottle

Hope was able to eat a little out of a bottle today.  The Speech and Occupational Therapists were in this afternoon and they spent some time working with her to drink out of a bottle.  She really loves to suck, but was having problems swallowing.  She got 4ml down and then decided she was done.  I know it doesn't sound like a lot, but it was the first time she ever had a bottle and I think she did a great job.

I am adding a bunch of pictures today because I brought my camera home.  You can see how great her bed looked yesterday and then I guess they decided it was too much and took all the stuffed animals off last night.  I decorated her whole 'room' with presents that she has received.  You can also see in one of the pictures that I opened the shades for her so she can look out the window.  She really liked that...although she is basically looking at a building next door.

It is flu season right now and I am hoping everyone has been vaccinated.  Our whole family has been vaccinated and we will also be getting the H1N1 vaccination.  The boys will be getting their RSV vaccinations as well.  We strongly urge anyone that is planning to visit Hope, either at the hospital or at our house when she comes home, to get vaccinated.  She is very suseptible to viruses and if catches something it will mean another stay in the hospital.  So, even if you don't think it is necessary for your health (we want you all to be healthy), please keep Hope in mind!

Thank you for the continued prayers for Hope and our family...including our extended 'heart families'.  We greatly appreciate the support and know that God is answering the prayers every day!

Poem for Erica and Paul

I found the following poem for Erica and Paul...their little man will be having his Norwood tomorrow.  It is written by Stephanie Husted (Braedens Heart Journey).  She writes the most beautiful poetry that really shows how 'heart parents' feel.

Tomorrow... she'll walk down that hallway....
While holding her son's tiny hand...
Tommorow... he will leave her arms...
For surgery as planned.

Tomorrow... she will kiss his cheek...
Say mommy loves you...then...
I know she will be thinking...
Will I hold him just like this again?

I know these feelings all too well...
I've walked this road before...
It's true...no one can tell you...
Exactly what's in store.

That crystal ball we joked about...
Is not around to say....
You need not have a worry...
Things will go well today.

Tomorrow...she will watch him go...
(She does not have a choice)
She'll lose her concentration...
Her thoughts...her words.. her voice.

And to the waiting room...she'll go...
With a mother's heart of fear..
While other's say what can I do?
She'll say...I'm just glad that your here.

She'll try to stay focused...
She'll try to stay strong...
But I know she will wonder...
What's taking so long???

Nauseous, scared and so unsure...
Of what this day may bring...
Praying,hoping,waiting...
Not sure of anything.

Tomorrow...seems to have a way...
Of coming as it should...
You cannot hold on to "today"..
(As many wish they could).

Tomorrow...she will let him go...
And then she'll likely pray...
Lord...please hold him in your arms...
And let him be...okay.

Step Down

Hope was moved to the step down unit today!  There are so many MIRACLES that we have experienced since Hope was born and this is yet another one.  We are totally thrilled with how well she is doing.  She is in a pod with another baby, but she has a 'big girl bed' and I decorated it with all her presents.  She looks so small (she has lost a little weight...she is now 5 pounds 7 ounces) in her bed, but it is a really nice bed.  Her room is smaller and there is only one nurse for 5-7 patients, so she doesn't get the individual attention she got in PICU.  I got to her room shortly after she was moved and she was pretty fussy.  A bunch of people came in to check on her and she gets fussy when so many people unwrap her all the time.  Her sats were pretty low, but they came back and have been staying in the high 70s. 

Dr. Prieto came in for a few minutes to check on Hope and us.  She told us that they want to keep an eye on her because her pulmonary artery seems to be kind of small.  She is thinking that just watching her sats will let us and her know if they need to take a closer look at the artery.  She also thinks it may be something that can be fixed when she goes for her heart catherization prior to her next surgery.

We should be able to start Hope on a bottle tomorrow.  She has been on full continuous feeds...that means she is getting 13ml per hour.  She has been handling the food really well...believe me, she is able to take the food in and definitely get it out (we changed 2 poopy diapers in less than 4 hours). 

I also have a couple prayer requests.  I met a really nice couple named Erica and Paul on Sunday.  They have a really cute little boy (I am pretty sure his name is Krylan, but not positive).  He has HLHS and is scheduled for his Norwood on Wednesday morning.  Please pray for their little guy and for them.  I know too well how stressful it is when your baby is getting ready for surgery.

My other prayer request is for Levi, Tracy, and baby Aiden.  Aiden was born on October 9th and has several heart defects (Unbalanced AVSD w/ Pulmonary Atresia and Heterotaxy Syndrome).  The doctors are not giving them very good news right now and they are in need of prayers.  Please keep them in your thoughts and prayers.  They also have a blog which you can follow:

Aiden

I will post some pictures tomorrow.  I left my camera at the hospital, but I took a bunch of Hope in her new room.

Another great big THANK YOU to everyone for keeping us in your thoughts and prayers.  God is listening and answering them every day.  You are all a part of our miracle!

No More Oxygen

Well...I called early this morning because I knew we had to get a few things done before we went to the hospital to see Hope.  When I called, she was still on 25% oxygen and they were pushing 4 liters as well through her nose cannola.  That is the same as when I left the hospital yesterday, so no big deal.

When we got to the hospital this afternoon, so much had changed.  First, Hope decided enough was enough with the IV in her neck and pulled it out.  I think that totally freaked out the nurse.  After that, the IV in her left arm decided to stop working so they had to put one in her right arm (after just getting the arterial line out yesterday).  That kind of sucked for her, but they really needed somewhere to draw labs and put in the medicine so they don't have to stick her all the time.  The yuckiest (not real sure if that is a word) thing is that they put an IV in her head...yes, her head.  The doctor said that the veins in a babies head are pretty good, so they use them.  It was hard to see her with the IV in her head and knowing that they are not using it (it is a back up) was even harder.  So, you would think that would be it, but nope.  Her monitor decided to stop working.  They had to set her up with a battery powered one until maintanence made it in.  He was called on his day off to come fix it.  Amazingly, he came in and turned it on...yes, you read right...he turned the switch on.  Someone must have accidentily turned it off.

GREAT NEWS:

Dr. Dan decided to get a little aggressive today.  Right before we got to the hospital, they stopped all oxygen.  Just turned off everything to see how Hope would do.  Our little trooper did AWESOME!!!  After the scares we had yesterday just turning the oxygen down to 21% and leaving the 4 liter push...her sats stayed in the 60s.  Today when they turned off all the oxygen, her sats stayed in the 70s.  We were there for over 3 hours and she didn't have any oxygen help at all.  She even had a few little fits and they still didn't fall all that far.  Even when the nurse pricked her heel to test her blood sugar...sats stayed good (although she threw quite the little fit).  She also sucked on her pacifier quite a bit today, so hoping that will help when we can finally start feeding her.  I also figured out how to turn the lights on in the room, so the pictures look a little better.

We are so proud of our little trooper.  She is doing great and it the strongest little girl I know.  God has answered yet another prayer and continues to show us miracles every day.

Please continue to keep our family in your prayers.  God is listening and hearing each and every prayer!

Thank you!

Patience

I have been learning valuable lessons in patience...just about every day.  I think that is one of the many lessons God wants me to learn through Hope.  I find myself getting frustrated and not realizing all of the progress Hope makes every day.  They lowered her oxygen to room air today (21%), but she couldn't seem to handle room air, so they had to raise it back to 25%.  I am grateful that the breathing tube is out and I am grateful she made it through surgery and is doing so well...I need to concentrate on all the great things God has blessed us with and stop getting frustrated when Hope has a setback. 

When I got to the hospital today, Hope was totally decked out in pink.  The night nurses used all of the blankets that I brought to the hospital and decorated her bed.  It was the cutest sight and I was so happy.  She even had her pink hat and socks back on.  She looks so pretty in pink!

They took the arterial line out of Hope's arm today.  I had to take a picture of her arm because it has been so long since I have seen it without an IV.  She has the longest fingers I have ever seen on a baby.

Hope had physical therapy today too.  They moved her around a little and also tried stimulating her tongue to get her used to sucking.  She didn't throw a fit either...YEAH!!!

Today I am celebrating the birth of another heart baby.  Aiden was born at 6:26pm and after a scary start, he is doing great.  Please add him to your prayers as you continue to pray with me for Hope and her recovery.  Aiden will need surgery as well and you can follow his story here:

Aiden

Thank you for your continued prayers.  God is listening and answering them every day!

More Oxygen

Well our little girl decided to throw a fit this morning which made her heart beat really fast and her blood pressure rise a little too high.  Her oxygen saturation also dropped into the 60s...which is not good, so they decided to up her oxygen through her nose.  Early this morning they were talking about moving her to the step-down unit, but after her little temper tantrum, she has to stay in PICU until she can get her oxygen down to 1 liter and her % down to 25.  She can't even start eating until that happens, so we are praying that they can continue lowering everything tonight and start feeding her tomorrow.  She threw a little fit while I was there today and it scared the heck out of me.  She got so upset that little tears were coming out of her eyes.  She still can't really make much sound when she cries, but she get really red and blotchy in the face.  I am hoping that within a few days she will be stronger (they tell me her chest needs to get stronger from being on the breathing tube) and her stats will be better when she throws a fit.

After visiting with Hope all afternoon, Jerry and I went to his parents for stuffed cabbage for his dad's birthday.  HAPPY BIRTHDAY!!!  His mom makes the best stuffed cabbage in the world.

I finally got a baby book for Hope.  My mom went shopping today and bought one.  I don't know why I didn't have one, but I definitely need to spend some time getting it up-to-date.

Hope also got a wonderful card from her cousin Dominic.  It is a wonderful get-well card.  The hospital has a new policy that no one under 12 years old can visit, so even though Dominic has been there to visit before, he is not allowed to visit anymore.  It is sad that the boys can't visit either.  It was nice knowing that they were close while I was visiting with Hope.  Now it will be hard for them and for me.  I just can't wait until she comes home!

Please keep Hope in your prayers that she will be strong enough to come off the oxygen.  I really want to hold her and feed her and it breaks my heart that I have not been able to for over a week.

I found the following picture on another babies blog and I loved it!  I just had to share with everyone because it shows just how much of a role I believe God played in helping our daughter.

Breathing Tube is OUT!!!

Picture from today before the breathing tube came out:

Hope's breathing tube was taken out today.  The doctors decided that they lowered everything enough that she would probably be fine if they took it out.  About three this afternoon they finally decided it was time.  My mom was there with me and we both decided to go to get coffee while they were taking it out.  They explained that there would probably be a lot of alarms going off and it would take about half an hour to get her fully stabilized, so we waited until the nurse came and got us from the waiting room.  I have to say that apart from the surgery and closing her up...I was most nervous about them taking out the breathing tube.  She did great without it before the surgery, but it scared me so much thinking about them taking it out and then possibly having to put it back in again.

Picture from today after the breathing tube came out:

It was great seeing her again without the breathing tube.  She still had oxygen through her nose, but they said that wouldn't last too long.  It is basically to make sure everything is fine and that she doesn't have any problem breathing on her own. 

I wanted to share the next picture because it was something I noticed today and it means a lot to me:

As you can see from the picture, Hope's bandages are in the sign of the cross.  I think it is totally symbolic of the role God has played in her life.  It is just another sign that God is watching out for our little girl and is answering our prayers every single day.

Jerry and I want to thank everyone yet again for another miraculous day.  We would be lost without the support, thoughts, and prayers from everyone.  THANK YOU!!!

Getting Ready to Extubate

Hope spent the day getting ready to be extubated.  They have lowered her medicine even more and have been lowering the ventilation to get her ready to be taken off the breathing tube.  They also started her on some medicine that will take the swelling down in her throat.  They need to hear a 'leak' before they can extubate her.  I'm not really sure exactly what that means, but from what I understand most people (children included) develop some swelling when they are intubated.  They need this medicine to bring the swelling down so they can take the breathing tube out.

Hope was pretty awake for a few hours today.  Of course, the batteries in my camera died before she woke up, so I couldn't take pictures.  She responded really well to me talking to her, but the nurses again decided that she might be in pain so they gave her some more morphine to make her feel better and go back to sleep.  I love spending time with her when she is awake and recognizing my voice.  I can't wait for her breathing tube to be taken out so I can hear her cry.  It will be the sweetest sound!

Tomorrow is probably the 'big' day for the breathing tube to be taken out.  I am hoping there won't be any problems when they try to take it out.  Please keep Hope in your prayers tomorrow that there are no problems when they take out the breathing tube and that she breathes perfectly afterward and her blood pressure remains good and her oxygen saturation stays where it should.  I know it is a BIG prayer request, but there are so many things that need to happen all at once when they remove the breathing tube.  It has basically been breathing for her for over a week and now she will need to do all the work herself.  I am just praying extra hard that she is strong enough and will not have any problems.

3 Weeks

Hope is three weeks old today and  what a miracle and blessing she has been in such a short amount of time.  She looks so good that it is hard to believe she has been through so much.  She was awake for a little while today, but the doctors wanted her a little more sedated...so out she went.  They removed the other drainage tube and her foley catheter (this is the normal catheter that they put in everyone who has surgery).  They also lowered some of her medicine...mostly the blood pressure medicine and the medicine that helps her heart beat.  They want to see how well her heart handles her blood pressure and heart beat on its own.  They also lowered the the settings on the ventilator and will continuing lowering them until they are pretty sure she will be able to handle breathing on her own.  They will probably try and remove the breathing tube by the end of the week.

Jerry went back to work today, so I am relying on my mom and sister to help with the boys.  It is going to get even harder when my mom goes back to work because she has been great about coming over and helping out almost every day.  Marilyn has been great too, but she has her own family and kids and I know it is hard on her and I don't want to take advantage all the time.  I appreciate everything everyone has done.  I know it has been hard on everyone and Hope has changed a lot of lives.  Please know that Jerry and I are extremely grateful for all of the help and the time that everyone has given up to support our family through everything.

A Poem for My Husband

I have to say that Stephanie Husted writes the best poetry around:

I am the father...

My child was born with a heart defect..
Its "my job" to be strong...
And tell my wife things will be fine...
(And pray that I'm not wrong)

And still the bills need to get paid...
And things need to be done...
And it's so hard just sitting here...
"I want to hold my daughter"!

I lean down as I watch her breathe..
"Keep fighting", is my plea..
"I thought I'd teach you to be brave...
"But daughter, you have taught me".

I hear the beeping of all those machines...
(They're helping my child to live)
I wish that I could take her place..
(Man, what I would not give!)

To have the faith and strength I need..
to hold back all my tears...
to say I know she'll be okay...
despite all of my fears...

I'd only fall down in defeat...
when no one is around...
I'd be the rock she surely needs..
I'd stand on solid ground.

A daddy says," come to my arms...
and I'll chase those monster's away"...
This daddy's heart cries out to God...
and says, "please let her stay".

A daddy needs to cry sometimes...
and God must see right through...
that " tough daddy exterior"...
for He's a daddy too.

Some Tubes Out

What a surprise we had today...Hope had one of the drainage tubes removed and the peritoneal dialysis catheter removed.  The best news is that it means Hope is doing a good enough job peeing on her own that she won't be needing dialysis.  Most of her puffiness is gone and she looked so good today.  I can't tell you how blessed we feel every day when we see how well she is doing.

Today she spent a bit of time awake and alert...which the nurses really didn't like too much.  It was kind of scary to think about how much she has been through and how much pain she must be in when she wakes up.  They even gave her some additional sedation medicine and she still decided she wanted to see everyone, so she fought the medicine to stay awake.  I loved every minute of her time awake, but I know it is best that she rests until they are ready for her to be awake.

They will probably remove the other drainage tube tomorrow or Tuesday and they are going to start weaning her from the blood pressure medicine she is on.  They are also going to continue weaning her from the ventilator and I am guessing they will try and take the breathing tube out one day this week.  I like that they do everything slowly because it gives Hope time to get used to everything before they remove them from her.  I get excited thinking that maybe this week or next we will be able to start working on her feeding with a bottle.  She has been sucking on the breathing tube and she loved her pacifier, so I am hoping she will love her bottle too.

Jerry is starting back to work tomorrow after bring off for 3 weeks on FMLA.  It has been hard without his paycheck and we checked into it and he will be able to take more FMLA time if anything comes up with Hope.  I know I am going to need him when she first comes home and definitely when she has her second surgery in a few months.

Our entire family is so thankful for everything everyone has done to support us these past 3 weeks.  We know we are going to need a lot more help as we try to get a schedule together and we are thankful for our families extending us their help.  Words cannot express how thankful and grateful we are to everyone for their thoughts, prayers, and help!

All Closed Up

They closed Hope up this morning and she looks wonderful.  They finished closing her up around 9:00 this morning and then the nurses got to clean up everything for a little while.  When I got there this morning, I was surprised at how good she looks.  God has granted us yet another prayer and for anyone that does not believe, just look at our beautiful miracle:

As you can see, most of her puffiness is gone and she looks so much better.  I can't believe she had open heart surgery just 3 days ago.  She woke up a few times today and looked around...especially when she heard my voice.  It was so sweet and such a miracle.

Professional Pictures - NILMDTS

When Hope was born, the hospital contacted Now I Lay Me Down to Sleep (NILMDTS) to come and take pictures.  Her prognosis was not good and we wanted to make sure we captured her birth with a professional photographer.  NILMDTS provides their services to parents of children that may not survive very long after birth.  We are honored to share these pictures with all of you and hope that if you are able to donate to them, we would be extremely grateful:

Now I Lay Me Down to Sleep