Wednesday, September 30, 2009
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
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!
Paula, Jerry, and Family
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
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.
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.
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 prayers...it is more appreciated that I can write on a blog!
Sunday, September 27, 2009
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
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
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.
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
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.
Wednesday, September 23, 2009
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
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
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.
Sunday, September 20, 2009
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
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.
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.
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.
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 vaccination...it is just too new and that makes me nervous.
Friday, September 18, 2009
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 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.
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
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.
The Wodzisz Family
I know I didn't update yesterday...it 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 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
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.
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
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 here...my 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 today...it'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
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 mentally...it 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
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.
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
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
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
More good news...my 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.