Wednesday, September 30, 2009

Hope is out of surgery

and from everything they have told us, her surgery went as expected.  We have witnessed yet another miracle and know that God is answering our prayers and the prayers of everyone else.  Thank you so much for your thoughts and prayers was a long, nervous, scary, and now good ending day.  I wrote down everything from the time we got to the hospital until we left:

Pictures of Hope before surgery

6:45 am - Jerry and I got to the hospital so we could spend time with Hope before they took her for surgery.  She was wide awake and looked at us with her beautiful blue eyes.  She seemed to be saying "trust me I will be fine".  We met Kim...the surgical nurse that would be calling us for updates when Hope went back for surgery.  We also met Debbie who was a nurse that would be in the operating room with Hope and all of the doctors.  She was extremely nice and put our minds at ease.

Jerry and I went to the Ronald McDonald Family Lounge to wait for updates.

8:30 am - The anesthesia team came and took Hope to the operating room.  We gave her lots of hugs and kisses and cried when they wheeled her through the doors of the operating room.

10:15 am - They are ready to start the incision.  They put in a new central line and they had to do some preparation for the Sano Shunt.  The Sano Shunt will connect the right ventricle to the pulmonary artery.  She is stable and doing fine.

11:20 am - She is on the heart lung machine and they are beginning the repair.  Nothing unusual or unexpected has happened.

12:15 pm - They are repairing her aortic arch.  After that is done they will work on the Sano Shunt and then take her off of the heart lung machine.  She is still doing fine and nothing unexpected has happened.

My dad arrived from Kentucky - it was a long drive for him and he left this morning at 1:00 am...what a trooper!  We really appreciate the support and know it is hard on everyone.

1:20 pm - They finished the repair and now need to get her off the heart lung machine.  They will do an echo and take a look at everything they have done.  It will take at least another two hours to clean everything up and make sure there is no bleeding.

My mom, Marilyn, and the kids all came to the hospital.  They were planning a day at the Children's Museum, but enjoyed the Family Lounge so much they decided to spend the day with us.

2:10 pm - Hope is off the heart lung machine.  The echo looks good.  She doesn't know whehter or not they will leave the sternum open for heart swelling.  She will know by the next update.

3:15 pm - They will be leaving the sternum open and there will be a clear covering over her chest.  She will also have drainage tubes that will help her get rid of the excess fluid.  It will be at least another hour before she is finished.

John (my brother) arrived along with Big Jerry and Rosie (Jerry's mom and dad).   I know how hard it is for everyone to get to the hospital and spend long days with us and we really appreciate all of the support we received today!

4:30 pm - They are finishing up with the dressing and she should be back in PICU in half an hour.  We can see her in about an hour.  Kim will call when we are able to see her.

Ron made it to the hospital to lend his support.  Paul loves spending time with Ron, so it took a load off everyone having to run around after him.  Dad put Paul to sleep and mom spent time with him while we all went down to grab a bite to eat.

5:00 pm - Dr. Mavroudis came to see us and tell us about how the surgery went.  He told us that the surgery went as he expected and that we may need to do a balloon procedure in the future to open her super vena cava.  He told us this may or may not be necessary, but they would be looking at it on the future echos.

6:00 pm - We were told we could see Hope.  The whole family was able to go in and see her, but we could only go in 2-3 at a time.  I have seen a lot of pictures and I basically knew what to expect, but I can honestly say that it was harder than I ever imagined to see my sweet little girl all puffy with her heart ust beating under a basically see-through bandage.  I don't think anything could prepare a parent too see their little baby like that.  I know it saved her life, but my heart hurt so much to think of everything she has gone through in her young life.

Pictures of Hope after surgery:

Tuesday, September 29, 2009

Please Pray for Hope

Hi everyone,

It looks like Hope will be having her first open heart surgery tomorrow.  Please pray for our family tomorrow.  I know God is listening as he has many times before, so any prayers are greatly appreciated!

Thank you,

Paula, Jerry, and Family

Minor Setbacks

We got a call at 6 this morning from the ICU doctor (Dr. Lipowitz).  Hope's oxygen saturation levels went down last night as well as her heartrate.  She even stopped breathing for a few seconds.  As a precaution, the doctor decided it was in her best interest to intubate her.  I am really sad for her, but I also know they are doing their best to make sure she has the best chance at surviving surgery tomorrow.  The doctor also told me that there was fluid leaking out of her femoral line, so they are testing that to make sure it is not an infection.  They pulled the line and decided to use regular IVs for her feeds until after her surgery.

Please pray that they do not find an infection.  If they do, she will not be able to have surgery tomorrow and we are not sure when they will be able to schedule it.

Monday, September 28, 2009

Lots of Meetings

We had a lot of people come visit us from the hospital today and got a lot of really good information from everyone.  The first person we met with was Laurie, the surgical nurse for Dr. Mavroudis.  She brought us a lot of information on the surgery and what to expect.  Hope is scheduled for the first surgery on Wednesday...which means it will start around 8 or 9 in the morning.  Jerry and I are planning to get to the hospital at 6:30 in the morning so we can spend some time with Hope before they take her to surgery.  It is going to be a stressful and long day for all of us.  There is a waiting room on the 3rd floor (Ronald McDonald Family Lounge) where they will call with all of the surgical updates.  The updates will begin about 2 hours after she is taken for surgery and every hour after that or more frequently if needed.  The surgery should take about 4-6 hours and Jerry and I will be in the waiting room the whole time.  Laurie indicated that they may just wait until right before surgery to intubate Hope and they will also need to do another central line (which is something I hate to see).  Following is a diagram of what Hope's heart will look like once her first surgery is complete:
After the surgery, they will bring Hope back to the room in PICU where she is currently staying.  I am not sure if we will have anyone visit when she gets back.  Jerry and I kind of know what to expect, but it may be hard for other people to see Hope.  Her chest will be open because they cannot close it until the swelling is down and she will have tubes in her chest to drain the fluid.  The tubes will remain for a few days until all of the excess fluid has drained and then they will close the incision that was made for her surgery.  The first 72 hours after surgery are critical and she will be watched very closely to ensure that everything is doing OK.  They will also check for infection several times a day because it is critical that she does not get infected while her chest is open.  Hope may need extra care because of her kidney function and they may put in an abdominal catheter as a precaution...just in case her kidneys start to fail and she needs dialysis.  They may not start dialysis right away, but they want to make sure everything is ready...just in case.  I am glad they are being proactive, but she is doing really good right now, so we are praying that will continue after surgery as well.

After all of the tubes and wires are removed and she is stable she will be moved to NICU to learn how to eat.  I am thinking this may not be hard because she loves her pacifier and has even taken to sucking her thumb.  I am hoping this will help her learn how to eat a lot quicker.  Once she is stable and learns how to eat, she gets to come home!  That will be the most exciting day of our lives.

We also met with Dr. Prieto, the cardiologist that admitted Hope.  She will continue to follow Hope after her surgery is done.  I really liked her and I know we will be seeing a lot of each other once Hope is discharged.  I really liked Dr. Patel at Akron Children's Hospital, but Dr. Prieto said that she prefers to follow the HLHS children that she admitted and that had surgery at the Cleveland Clinic.

I also met with the social worker to see about getting a room at the Ronald McDonald house for the night of surgery and possibly through the weekend.  I would prefer not to be so far away from Hope after her surgery.  We have been put on the waiting list and are hopeful that they can find us a room.  Laurie indicated that we should plan to go home the night she has the surgery because Hope will be pretty much sedated and they will be watching her very closely.  I just don't think I will be able to come home and get any sleep.

Other than all the meetings, everything went pretty good today.  Hope looks great and everything looks good.  Her sat level was kind of low today, but they are just watching it for now and there are no plans to do anything.

Please continue to keep our family in your thoughts and prayers.  We have been praying that Hope stays strong and does not get any type of infection.  We will be opening up the floodgate of prayers on Wednesday for the surgery, but we still pray every day that she stays as strong as she is and that no infection finds its way into her room and definitely not into her.

Thank you again for your thoughts and prayers.


Sunday at the hospital was pretty uneventful.  We were excited because they didn't intubate Hope and we were expecting that to happen over the weekend.  The ICU doctor on duty decided that she could wait to be intubated.  Hope had a small temperature this morning, so they have been checking her blood to make sure she doesn't have any type of infection.  So far they have not found any infection, but they are still checking every day.  That is the one thing that will keep Hope from going to surgery on Wednesday, so we are constantly praying that Hope doesn't get an infection.

A first...Hope was sucking her thumb today.  It was the cutest thing I ever saw.  I know the boys sucked their thumbs, but when I saw Hope it was just such a surprise.  

Sandy, Mom, Ron, Marilyn and her family all came up to visit today.  Hope and I love having visitors and you can tell when she opens her eyes to see who is visiting.  Jerry and I are finding a lot of peace in the people that come up to visit Hope.  We know that she can tell people are there to see her and she seems to do better when people are visiting her.

We are still requesting that everyone prays for Hope this week.  We need her to stay strong and infection free and then when we get to Wednesday, we will need to open the floodgates to God and pray that she gets through surgery strong and healthy.  Thank you to everyone that is continuing to keep us in your thoughts and is more appreciated that I can write on a blog!

Sunday, September 27, 2009

A Poem I Found

"When Time Stands Still"
by Debbie Hilton-Kamm 
It starts with news impossible to hear
It conjures up your every fear
It's when they say your child is ill
That's when time just stands still

In that moment, that suspended time
A thousand thoughts run through your mind
Will she ever laugh and play?
Will I see her wedding day?

All the planning, the hopes and dreams
Are put on hold -- just what does this mean?
Her crib is empty, her toys alone
For now, the hospital will be her home

This is a place where time stands still
Where the void's too large to ever fill
For in a hospital's intensive care
Children lie, some unconscious, some aware

And time is measured by a new yardstick
Every second marked by a monitor's tick
Noting every breath the child takes
And every beat her tired heart makes

Just a moment of watching a child writhe or strain
In sedated confusion, or fear or pain
Or pleading for a drink to which you can't oblige
Seems like far more than an entire lifetime

And the children who live far too long
In hospital gowns, trying to be strong
They have old souls, that's what they say
Because in each moment they've lived a thousand days

For those who say time goes by too fast
Sit with an ill child, and see just how slowly time can pass

Another Good Day

Even though the nurse yesterday did not let me hold Hope, it was still a really nice day.  I spent a lot of time talking and touching her and I know she really likes that.  We brought up all her stuff from Akron Children's and decorated her room a little bit.  It looks and feels a little better with her stuff in the room.

Jerry and the boys hung out on the 3rd floor most of the day, but came to visit and spent quite a bit of time in the room with us.  The boys do pretty good considering all the wires and stuff that I am sure they would like to play with.  The boys also gave Hope her Build a Bear and I know she loved it.  She woke up for a little while so that she could see the bear and they boys.

We met Dr. Edwards (Cardiologist) and he assured us that the surgery will happen on Wednesday unless another baby comes in with an emergency, Hope gets and infection, or her health declines dramatically before Wednesday.  We are praying every day that she stays strong and does not catch anything while she is waiting.  We can't really do anything about another child needing emergency surgery and if Hope is holding her own, we would prefer they fix another baby that would not be able to make it without the surgery.

When we got home from the hospital we had a package at the door.  It was a wonderful present from everyone at work...Seeds of Life.  It is an oak tree that we will plant for Hope and as she gets older, she will be able to see the tree grow as she is growing.  It was such a thoughtful gift and I want to thank everyone at work for their thoughts and prayers.

Friday, September 25, 2009

Perfect Day!

Today was the perfect day! 

I got to spend most of the day with Hope in my arms and it felt great...for both of us.  The nurse today was the best by far the best nurse we have had with Hope.  She spent a lot of time getting all the wires and stuff out of the way so that I could hold Hope and then pretty much left us alone so we could have mother and daughter time.  Hope's respiration was better than it has been in a long time and I believe it is because she knew I was holding her.  It relaxed both of us! 

My mom even got to hold Hope for an hour today and I know they were both really happy.  Jerry was too nervous to hold Hope...he doesn't like all the wires and I think it worries him that he might pull one out when he is holding her.

One of the former patients brought everyone a care package full of goodies today.  It was filled with food and water and really made my day.  It is hard to think about getting something to eat or drink when we are sitting with Hope all day and I am sure the family that brought the packages knew this.  I plan to do the same thing for the families in PICU when Hope turns a year old as well.

We found out the Hope will probably be intubated on Sunday.  As sad as it is, the doctors feel it for the best to intubate her a few days before surgery.  This will ensure that her oxygen levels are good for surgery and that she is stable and used to the breathing tube.  It is going to make me really sad to see because she has miraculously been able to avoid it for almost two weeks and from what we have been told, that is pretty uncommon...meaning she is one tough cookie!

Yesterday my mom took the boys to Build A Bear and they made Hope a cute pink bear.  I can't wait to take it to the hospital and show Hope how much her brothers love her.  They added a bunch of extra hearts to her bear and I know they will help her get through surgery and recover in record time!

That's about all the updates for today.  I guess you can see why it was such a great day.  I hope we have a lot more days like today!

Thursday, September 24, 2009

Surgery Scheduled

We met Dr. Mavroudis today before we left the hospital.  He came into Hope's room really quick before he left for the day to talk to us.  He told us that Hope is scheduled for surgery on Wednesday, September 30th.  I asked if there was a chance that he would decide not to do the surgery and he indicated that if she stays in the same condition she is in now (or hopefully better), he would be doing the surgery.  So, we are praying every minute of every day that she gets better!

They placed an arterial line in Hope's wrist today to better keep track of her blood pressure as well as allowing them to draw labs better...that way they don't have to poke her every time they need to draw blood.  This means that she has and IV in her wrist and it makes it hard for her to move her hand, but she doesn't seem to mind all that much.  She really is a trooper with all the stuff she is hooked up to.

We got a call today from a nurse case manager at Medical Mutual.  She will be helping to manage Hope's care at the Cleveland Clinic.  We also met with the social worker from the Cleveland Clinic and she will also help us with the care Hope is receiving and they will both be coordinating the care Hope receives when she leaves the hospital.

We have received a lot of support from everyone and we thank everyone from the bottom of our hearts.  My mom and sister have gone above and beyond to watch Jerry and Paul so we can be at the hospital with Hope. Thank you doesn't seem like a big enough word for all the support, but everything is so appreciated that we can't begin to express how we feel.


Yesterday was really nice.  Hope had a bunch of visitors and she loved every minute of the time she spent with her visitors.  Beth was here for a class and was able to come to the hospital to see Hope.  It was their first meeting and I know Hope loved seeing her Aunt Beth.  My brother also came to visit and mom, Marilyn, and her family all got to see Hope at the Clinic.

 Hope spent all morning getting tested.  The doctors repeated all of the tests that were done in Akron and not much has changed.  Her head and spine look normal.  Her heart and kidneys looks the same as they did in Akron.  Now we just play a waiting game to see if the doctors at the Clinic are willing to do the surgery.  We have been praying like crazy that they will be willing to let Hope show them how strong she is.

There was some talk about intubating her, but that hasn't happened and we are hoping that it won't have to happen until closer to surgery.  We do know that eventually she will have to be intubated so that they can control the oxygen levels better, but we don't want that to happen until we know for sure she is having surgery.  We don't want to put her through anything that invasive if they don't think she will be a candidate for surgery.  She has already been through enough and the thought of having her on a breathing machine scares me.  I have heard bad stories about how hard it is to get kids off a breathing machine once it has been started.

Wednesday, September 23, 2009

Cleveland Clinic Children's Hospital

We had Hope transferred to the Cleveland Clinic Children's Hospital late last night for a second opinion.  They were originally going to send her by air, but decided with the clouds that it would be best to pick her up by ambulance.  They got to Akron Children's Hospital around 8:30 pm and spent about an hour getting her ready to be moved.  Jerry and I went to the Clinic in our own car and after searching for the correct parking garage...finally got to her room around 10:00 pm.  We met her nurse and the ICU doctor and they were both really nice to us.  The Cleveland Clinic is a lot different than Akron Children's, but I am sure we will find our way around eventually.

Today was very special for Jerry...he got to change Hope's poopy diaper (his first diaper change on Hope).  I know it was hard with all her wires, but he did a great job.

We talked to the doctor and the nurse last night and they will be running a bunch of tests on Hope today.  They are basically going to repeat all of the tests that were done by Akron Children's and I am hoping the results are better at the Cleveland Clinic.  Some other good news...she is not under the oxygen tent, so we can touch her all the time.  When we got to the Clinic last night, she was wide awake so we spent over an hour playing with her and getting her settled for the night.

We want to thank everyone again for their thoughts and prayers.  They have helped get Hope the best care available and we are praying that the doctors at the Cleveland Clinic are willing to give Hope a chance to show them what a fighter she is!

Tuesday, September 22, 2009

Roller Coaster Ride

Jerry and I feel like we have spent a long time on this roller coaster ride and just when we think it is going well, we get news like yesterday.  We both fell apart, but held on to each other.  Looking back on yesterday I realize how strong our relationship is and that no matter what happens, we will still have each other and our marriage will be strong.  That is something we worried about a lot because our marriage has never really been tested by anything other than children and money problems (what marriage hasn't been through that?)  We are both realizing that we need to cherish the time we have with Hope and pray every second we get that she will get better. 

We went back to the hospital last night and spent time with Hope.  It gave us a lot of clarity on our decision and we talked to the ICU doctor about getting in touch with the Cleveland Clinic and seeing if they would be willing to take over Hope's care and evaluate her to see if they would consider doing surgery.  We should know something today or tomorrow, so buckle up for the roller coaster ride!

We want to thank everyone again for all the prayers, thoughts, and support you have given over the last week.  I can't believe Hope is a week old already.  She is staying strong and even though her blood tests don't show it, she is peeing a lot...which seems like a good sign to me.

Monday, September 21, 2009

Really Bad News

Today is by far the worst day of our lives.  We went to the hospital early this morning...around 8:00am to make sure we were there for rounds.  Dr. Spector (the cardiothoracic surgeon) and Dr. Chan (the nephralogist) met and discussed Hope's kidney function and how it will affect the outcome of her open heart surgery.  They decided that because her kidney function has not gotten any better, they don't believe that surgery is the best solution.  They don't believe that she would survive the surgery and if she did survive, her kidney function would be further compromised or she would not have any kidney function at all.

Jerry and I are heartbroken and devastated and not sure what to do right now.  I have a call into the Cleveland Clinic to get another opinion, but I really don't expect their opinion will be any different.  I guess I was deceiving myself into thinking Hope was in better condition and this came as a shock to both of us.  We never thought her kidney function would be the determining factor in whether or not she would be able to get surgery, but after talking to the doctors it seems that the heart surgery would compromise her kidney function and she would probably not survive the surgery.

I know this comes as a shock to us and probably to everyone reading this blog.  We have a huge decision to make (after we get another opinion) about when, where, how, let Hope go be with God.  We are hoping we don't have to make this decision and are praying like crazy.  If you are reading this blog, please pray with us that her kidney function gets better today.  Prayer is all we have left and we are waiting for our miracle to happen.

Sunday, September 20, 2009

Teddy Bear Run

Today was kind of nice for all of the kids.  There was a teddy bear run and Santa and a Teddy Bear delivered stuffed animals to all the children in the hospital.  Jerry and Paul even got teddy bears while they were in the waiting room.

Jerry's Aunt Kim and my Uncle Mike both came to visit Hope.  It really is great that everyone has come up to meet her and share in our joy.  Everyone has been great and brought a lot of joy into our lives by visiting with Hope and being there for us.

The doctors are concerned about Hope's kidney functions and are planning a big meeting for tomorrow morning to discuss how it might impact heart surgery.  They thought her kidney function would have improved by now and the nephralogist wants to meet with the cardiology team in the morning to discuss everything.  Jerry and I plan to be at the hospital early for the meeting to hear what everyone has to say.

I will have to post pictures later because I left the camera at the hospital, but Hope got a cute purple Care Bear and even though it is twice her size, I know she loves it.

Saturday, September 19, 2009

Sort of normal today

Today seemed sort of like a normal day.  Of course we visited Hope at the hospital which was wonderful, but then decided to take some time and go to Anthony's birthday party.  It has been a few weeks since we have done anything that seems 'normal' that it was kind of strange. 

Some good news from the visit today...Hope is finally going to be able to eat.  I have asked several times if I should pump and was basically told that she would not be able to eat until after her surgery.  I got to the hospital today and they asked if I had been pumping.  I have pumped a few times and stored it in the freezer, but it really hasn't been too much.  I was kind of thinking that I might try to stop my breast milk from coming in because I didn't want to throw it away.  I am glad I saved it and I found out that I can pump during the day at the Reinberger Family Center.  It is a great place where we take the boys and let them play.  Now I can go there and pump too.

Nicole (Hope's nurse) told me that the nephrology team came through on rounds today to discuss Hope's kidneys.  I guess both of them are pretty small...I thought only the left one was small, but from what I learned they are both pretty small.  The nephrology team will be making rounds on Monday at 8:00am along with the cardiology team to discuss how the lower kidney function may impact the outcome of Hope's surgery.  I plan to be there for rounds on Monday so I can hear everything the teams have to say about her kidneys and the surgery.  Maybe they will know more about a date for the surgery.  So far they don't believe her kidney function will impact the surgery because the labs they have been running (BUN and Creatinine) show that the kidneys are clearing out the blood.

John and Mia came by to visit and brought Hope some onesies and a cute blanket.  It was great seeing them and having people visit with Hope.  I know it is hard for everyone to see her in the oxygen tent, but I know she hears the voices and knows that everyone is visiting her.

Jerry and I really appreciate all of the support we have received from everyone.  We know how stressful this is for our family and understand how stressful it is for everyone else.  We truly hope that everyone understands that we may be short sometimes and our stress may get out of control.  For anyone that has been on the receiving end of our stress...we are truly sorry.  We don't mean to take our stress out on anyone around us...especially with as supportive and helpful everyone has been.

Oxygen Hood and Central Line

Yesterday was pretty difficult for me, but the doctors tell me that having Hope in an oxygen hood is best for her.  I am not able to hold her and can only touch her when the nurses are working on her.  They want to make sure her oxygen saturation levels stay in the mid-80s so that she does not get too much oxygen to her lungs and not enough to her body. 

Dr. Forbes, the ICU Attending Physician put in a central line last night.  It only took him 10 minutes and I am real proud of how well Hope held up through the procedure.  It scares the hell out of me every time they do anything to her and most of the time I can't be in the room with her, so it makes the worrying even harder.  She also had a chest x-ray and her lungs look great.  They may do another echo of her heart today, but we will find out for sure later.

Jerry picked up Destiny last night and she was finally able to meet Hope.  Little Jerry was also over his cold, so I took him in to see her too.  I think he was a little scared to see her, especially because she is in the oxygen hood.  He only stayed in there for a few minutes and then wanted to go back to the waiting room and play some more.

I had to take Jerry and Paul to the doctors this morning.  I missed Paul's appointment on Wednesday for his 15 month vaccinations, so thankfully I was able to get him in today.  I had the doctor give them both flu vaccines so that is one less thing to worry about.  I don't know yet whether I will have them get the H1N1 is just too new and that makes me nervous.

Friday, September 18, 2009

PIC Line and PICU

Yesterday they tried to insert a PIC Line (peripherally inserted central catheter) so that they would not need to change Hope's IV lines every few days.  A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic vein, or brachial vein and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavoatrial junction.

We were not able to be in the room when they tried to insert the line, but when we came back we found out that they were not able to insert the line.  The nurse told me that is actually pretty common, but it still worries me.  I don't know why it worries me, but every time they do anything I worry constantly.

My Aunt Betty came down from Michigan to visit Hope and spent a lot of time with all of us.  She practices Reiki which is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by "laying on hands" and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive. If one's "life force energy" is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.  Hope really seemed to relax and everything we can do for her will help.

My dad and Mary were still up from Kentucky and it was nice that they were able to meet Hope.  They are planning to come back next week when we find out the date of her first surgery.

Hope was moved to PICU (Pediatric Intensive Care Unit) last night around 7pm.  We went up to see her in her own 'big girl' room and it was really nice.  I like that she has her own room and her own nurse.  Dr. Smith likes to have his babies in PICU before surgery so they can meet the nurses and the nurses can get to know Hope. 

I am pretty sure that I spent too much time on my feet yesterday and they were telling me that last night.  They were swollen so much that I could barely walk when I got home last night.  It is really hard to find time to take care of myself while Hope is in the hospital, but I know I have to at least try.  It is not going to do either of us any good if I get sick and can't visit her.

Wednesday, September 16, 2009

Prayers Worked


The prayers from everyone worked. Hope is a candidate for surgery and will be having her first of three surgeries next week. It has not been scheduled, but it will be after Tuesday...Dr. Smith wants her stronger before the surgery and a little bigger as well.

Some other good news:

She has gained 2 ounces - she is now 5 pounds 14 ounces
She has both kidneys...although her left one is pretty small and they don't know whether or not it is functioning
She has inter-atrial communication, although they will need to fix the restrictive ASD during her first surgery
She does not have any neurological problems that they could find through the ultrasound they did on her head

Hope is still considered a much higher risk for the surgery than most babies with HLHS, but we are still hopeful that she is one tough cookie and will pull through and show everyone what a fighter she really is! God has been there for us throughout this whole journey and we believe that He will be there with the surgeons, cardiologists, nurses, anesthesiologists as our journey continues.

Hope will also be moving tomorrow to PICU (Pediatric Intensive Care Unit) tomorrow. This is where she will be staying before and after surgery and they want the nurses to get to know her and for her to know all of them. I am pretty excited because she will be in her own room rather than sharing a room with other little babies like in NICU (where she is now). Her brothers still have little colds (stuffy noses), so they have not been able to go and see her since she was born. We don't want even the slight possibility of her getting sick, but I would love them to be able to see her before the surgery.

We want to thank everyone again for everything that you have done for our family. We have great support from our family which has made this journey so much easier. Marilyn and my mom have been AWESOME taking care of the boys so that Jerry and I can spend as much time as possible with Hope. I actually got to hold her a few times today and it was the most precious feeling in the entire world. When I got home last night (the first time in almost a week) it was really hard coming home without a new baby. Being able to hold her today gave me a little feeling of how precious her life is and I can't wait to hold her again tomorrow.

The thoughtful gifts from everyone is appreciated more than we can say. Thank you seems so small when we feel so grateful for everything everyone has done for our family. I wish there were a better way to express how much we appreciate everything and if we don't tell you enough how much we appreciate everything...please know that our hearts are full of love and gratitude for everything.

Love always,

The Wodzisz Family

Prayer Request

Hi everyone,

I know I didn't update was a busy day and we spent most of it with Hope. She is doing great! I will update on everything that happened a little later.

My prayer request is for the Institution Recommendation that will be happening today. The hospital where Hope is staying has a meeting with everyone involved in her care and they will determine whether or not she is a candidate for surgery. She has a lot of adverse risk factors:

Low birth weight (IUGR)

Atrial and Mitral Atresia

Renal Agenisis (one of her kidneys may not be working)

Chromosomal Issue (although I personally think this is a non issue)

Please pray with our family that she will be considered a candidate for surgery. We value the recommendation and trust all of the doctors that we have been seeing, but we are truly afraid that they will determine that she is not a candidate for surgery. If that happens, we will have to make a decision as to whether we want to get another opinion or turn off her Prostin drip. We don't want to make that decision (and no parent should ever have to make that kind of decision).

We are finding out later today and I will update then, but in the meantime, please pray as hard as you can that the doctors decide that she is a candidate for surgery.

Thank you so much!

Tuesday, September 15, 2009

Hope Jane Wodzisz

Hope was born last night (September 14th) at 10:01 pm. Her stats:

Weight: 5 pounds 12 ounces
Height: 18 1/2
APGAR: 8 and 9

She came into this world kicking and screaming and we are so proud of our little girl. She looks better than we ever expected and we are the happiest new parents around. We were surrounded by love and many prayers when Hope was born...both Jerry and my families were there for her when she was born.

We had a beautiful service for her and she looked like a beautiful angel in her christening gown. After she was baptized and everyone had a chance to hold her and meet her, she and I went to Akron Children's Hospital. There really is not much to tell yet today. Jerry and I got back to the hospital at 3am to get a little sleep and we are heading back this morning to get a full report on her night and a detailed report on her echo.

We are so thankful for everyone's thoughts and prayers. I know they brought Hope to us kicking and screaming and will help her get through this possible rough road ahead.

Monday, September 14, 2009

Broken Water

They just got done breaking my water, so it will be a few hours and Hope will be born. I am dilated 4cm and 70% effaced and she is in position to come out. I am feeling so many emotions right now and I really wish she had more time with just me. I know she is fine inside of me...I just worry about when she is born. I don't like to think about it too much because I am so afraid of something happening before I even get a chance to meet her and tell her how much I love her. I feel like I have done a lot of work to plan for her birth, but no amount of planning can prepare me for when she is actually born.

My family and I would like to thank everyone that is made this easier and who has prayed with us and shown us support. Thank you does not express how much we appreciate everything.

I will update again a little later. Not sure how long it will be now, but I am pretty certain she will be here tonight.

Pitocin Started

I wanted to let everyone know that I started my Pitocin at 3pm today. I went for the ultrasound this morning and her fluid was really low (1.9), so they decided to start the induction. I am scared, excited, nervous, and every other emotion you could possibly think of right now.

My mom, Marilyn, and the boys have been up here most of the day. It is nice having the company, but I am sure I will not be wanting too much company when the contractions really start. Jerry's family will be up a little later and it will be nice to have everyone here once Hope is born.

GeraLeah and Rosie both tried getting Christina to let Destiny come up for when Hope is born and especially for her Christening, but Christina said 'no' because Destiny has a cold. I am really hoping that someone can talk her into it as I am guessing Destiny will not be very happy if she is not able to meet Hope.

I will update more later today...I am going to spend time with the boys now!

Sunday, September 13, 2009

More Boredom

I am actually kind of excited because I get a bunch of visitors today. Jerry is bringing the boys and his mom and dad will also be up to visit. It is just hard because everyone seems to come later in the day, so I have all morning to spend being bored and watching stupid shows on TV. They have Lifetime here, so that is basically what I am watching until someone comes to visit.

I can honestly say that I had my first real breakdown this morning with Dr. Piecarek. I am really sick of being here and cannot truly understand why I am still here. I feel like there is not a medical reason for me to be fluid is back up and Hope has been doing great on the monitors for the past 3 days. I just get the feeling that the doctors are playing CYA instead of actually practicing medicine and it is costing our insurance company a fortune. If Hope is fine, my fluid is fine, and I am feeling fine...there really is no medical justification for me to be here. I basically told the doctor that this morning, but she blew me off and basically said that if I want to leave I can...against doctors orders and that if I do that my insurance may not pay for the days that I have been here. So...I am going to talk to some of the other MFM doctors tomorrow (Dr. Peicarek is new to the practice and may not feel comfortable releasing me). I am sure it will be a 'fun' discussion!

Nothing else is really going on around here. The helicopter landing pad is right outside my window and one landed the other day when the boys were here...they loved it. It was not so great at 3am when I was sound asleep however.

Mom is taking off next week to watch the boys. Jerry is trying to save up his FMLA (which is unpaid) until after Hope is born, so I am happy mom was able to take time off to watch them. Hopefully they will not drive her totally crazy!

I will try and post some more later's just not a lot is going on around here.

I am back and doing a little better than I was earlier. It was great that Rosie, Jerry, and Greg came for a visit. I know they were probably bored because it is really boring here. I am just happy to have a few distractions during the day. It keeps me away from constantly thinking about everything that could possibly happen. I have tried really hard today to stop thinking constantly and trusting that God will give me the strength I need to get through anything...but it is really hard sometimes. The thoughts just come out of nowhere and then I dwell on them because I don't have anything to distract me.

The good news for the day is that they took the IVs out of my hand. I am not sure what that means, but I am hoping they won't have to put them back in until Hope is getting ready to be born. I am also planning to talk to the doctor tomorrow to see if I can go home and just come in every day or two to have my fluid checked. I am not sure if they will go for that, but I really want to try. I am not sure what time my ultrasound is tomorrow, but I will update as soon as I find out my fluid level and whether or not I can go home.

I want to thank everyone again today for keeping me and my family in your thoughts and prayers. It means a lot to me that so many people are supporting us through this long and winding road. We appreciate everything and may not be able to express it enough.

Love to everyone...and sweet dreams!

Saturday, September 12, 2009

Nothing New Today

Today was pretty uneventful...other than family visiting. Jerry and the boys came up for a long visit today and then mom and Ron came up for a couple of hours. The last couple of days have been nice with visitors...Marilyn and John were up yesterday and Jerry and the boys will be up every day. It is so boring being here all day with just the TV, books, and Internet to keep me company. Although I can hardly blame people for not wanting to stop up is not fun at all to be stuck in this cramped little room. There have been a couple times where I have been allowed to leave and go outside, but just a few minutes ago the doctor said 'no'. I am going to have a little chat with the doctors about writing an order that will let me leave my room during the day. I really don't understand what the problem is, but being stuck in this room all day and all night is more depressing than I can express in writing. I have too much time on my hands to think about everything that is going on and I just spend a lot of the time when no one else is here crying.

I did have an exam earlier today and the fluid level looks fine. They also checked to make sure I am not leaking amniotic fluid and I'm not, so that is also good news. I am not dilated or effaced, so I am sure I will be here for another week before they induce labor. I know it will help to have Hope gain weight, but I am afraid that is going to be really hard to be here for another week.

I want to thank everyone for the phone calls, thoughts, and prayers. I wish there was some way that I could express how much I appreciate everything everyone has done for me during this pregnancy...I feel truly blessed to know there are that many people out there that care about me and my family.

Until tomorrow...sweet dreams!

Friday, September 11, 2009

Fluid is good today

I just got back from the ultrasound the amniotic fluid level is back up there. It is 9.5 today which is really good. I will be still be at the hospital, but probably won't have another check until Monday. It will be a LONG weekend. I know it is probably best that I am in the hospital, but it really is lonely and depressing sitting here all day. I have too much on my mind and too much time to think about everything.

I am thinking about asking Dr. Silber if I can go home for the weekend. If no one is going to be able to check my fluid levels over the weekend, I just don't see the reason I need to be sitting here all weekend.

I also found out that I only get to leave my room once a day. I am so finding a way to get that changed. There really is no reason whatsoever that I need to spend the entire day and night in this room. I will seriously go crazy!

I want to thank everyone again for all the thoughts and prayers. I don't know how to thank everyone for everything that you have done for our family, but we are eternally grateful.

Kind of scary

We had a little scare around 2 this morning. I was finally able to get some sleep and then all of a sudden I have a bunch of nurses in the room. Hope's heart rate fell pretty quick and pretty low and then when they got to the room, they were not able to find her heart rate at all. They gave me oxygen and an IV filled with saline so that they could see if they could get more fluid. The resident finally came in and was able to find her heart rate and all was good for the rest of the night.

I just got up and am getting ready to head for the shower. I have my ultrasound at 9am...or somewhere around there and will update with the news when it is done. I am guessing that I will be induced shortly. I actually think I would prefer to get the induction and see Hope rather than have any more scares like last night.

I want to thank everyone for keeping us in your thoughts and prayers. It means the world to me to know that I have so much support.

Thursday, September 10, 2009

Another Day of Observation seems that my fluid is lower today than it was yesterday (yesterday 6.7, today 5.4), which is not good news. I will be here for another night and probably until Hope is born. I think I got a total of 2 hours of sleep last night, so I am not looking forward to a long stay here. The bed is super uncomfortable and every time I move, the monitor comes off and then the nurse has to come in and move it around.

I have another ultrasound in the morning and if the fluid is lower than it was today, Dr. Silber will schedule the induction for later tomorrow or Saturday morning. The fear they have is that if the fluid gets too low, she will have a hard time moving around and may end up on her cord and that would mean she could pass away before she is even born...and I don't want that to happen.

I am still hoping for more fluid, but Dr. Silber feels that even if she does increase her fluid, it would still be best for me to be in the hospital being monitored until Hope is ready to be born. I am not at all prepared for Hope to be born, but I have a feeling I will never be prepared for her to be born. I am so scared about the delivery and even more nervous about how sick she might be when she is born. I have been alone a lot today and have spent most of the day crying. I can't seem to stop and I know that I need to try and stay positive. I have spent so much time praying and I know that God will answer my prayers in the best way he knows how.

I will update more tomorrow after the ultrasound. I am praying that her heartrate stays up through the night and that I can get a little sleep.

Wednesday, September 9, 2009

Hospital Observation

I am hoping it is just for tonight, but when I went to the doctor's this afternoon they noticed that my amniotic fluid is low and they want me to come and stay in the hospital for at least tonight. Needless to say, I am heartbroken. I don't want to be at the hospital until Hope is ready to be born. I know it is best for both of us to be in the hospital being observed, but I am so worried that I am going to end up spending the rest of my pregnancy at the hospital, rather than at home with my boys.

I still have to pack a bag and I am just going to pack everything I had planned for when Hope is born. At least that way I will have it just in case she decides to come early and if I get to come home, I will still have everything packed and ready to go. Dr. Lavin really wanted me to head straight to the hospital, so I am actually happy that I was able to talk him into letting me come home and pack and not have to be back there until 10pm.

I need some prayers again for my amniotic fluid to increase so that I can come home and spend more time with my boys before Hope is born. I also need prayers that she gains some more weight. She has not gained any weight since our last appointment and is only about 5 pounds. The doctors really want her to try to get to 6 pounds before she is born, but are unsure if she will be able to get there with such low amniotic fluid.

I am pretty sure I will have access to the Internet, so I will try and let everyone know what is happening tomorrow. They will monitor me all night and then check my fluid sometime tomorrow and see if I can be released.

Thank you again for all the prayers and everything everyone has done to help me. I greatly appreciate it and all of your thoughts and prayers!

Thursday, September 3, 2009

Unexpected Good Appointments

After my appointments yesterday I am feeling a lot more optimistic about everything. I don't really know why I am more optimistic...although meeting with Dr. Patel (the cardiologist) did help. He told me that even though everything looks the same (with the addition of an atrial septal defect...which is not good), he still feels optimistic that she will be fine when she is born and that we should definitely talk to the perinatologist about starting her on Prostoglandin right away. What that means is that they would need to start an IV through her umbilical cord right when she is born. I am working with the maternal fetal group to see if that is possible...the major problem with that is the possibility of her going into respiratory distress and needing to be put on a ventilator. I am at a point now that I am not exactly sure what we will do when she is born, but I know that I will be with her the whole time. I also know that before they do anything drastic, we will have her christened. She has a beautiful dress (I will post some pictures soon) and I want her to wear it for the christening. After that...we will decide everything else.

More good non-stress test went great. Hope's heart rate went up and down just like it is supposed to. I had to laugh because every time she heard the nurse's voice she would kick me. The nurse has a very distinct voice and I am guessing Hope either really liked it or really didn't like it!

No ultrasound pictures this week, but I am pretty certain that she is growing so no big deal. She already has a lot of pictures and as soon as I get a few minutes I really want to scan them and post them here.

I also have to pack my bag for the hospital. I have a lot of great clothes for Hope from everyone and I want to make sure I don't forget anything. There is so much that I want to bring to the hospital and I don't want to forget anything. I think I need to put a list together and cross things off as I pack them in my bag.

Finally...I am pretty sure that Hope will be born on September 22nd. Please pray that she does not decide to come on her own. I am starting the induction late on the 21st and they won't start the Pitocin until the morning of the 22nd. I just really need everyone to pray that she stays with me until then. My labor and delivery is too fast to chance having her naturally and not making it to the hospital. So, if everyone could add that additional prayer (hopefully everyone is praying that God will mend her heart) I would greatly appreciate the additional prayers.