Yesterday, we hit the 5 month mark at Childrens. We have seen three seasons change within this time. We entered in winter, Jan. 22,2010. Stayed through the spring and now we have hit summer. It has been an intense but rewarding 5 months.
We never thought we would be where we are now.
We are still waiting, still praying, still believing that her heart will come any moment. We still get angry. We still cry. We still ask why. However, we still keep our faith. We still trust in God. We still believe in miracles. We are still here and sometimes that is all that matters.
Ruthie is doing okay. She is considered stable although she is back on the vent. She is on a rate of 22 (which is down from 30). Her o2 % is 55 down from 100% on Monday (when she was re-intubated). She is keeping her stats in the upper 60s and low 70s. She is on fentaynol and dex to keep her comfy and not fighting the vent.
We are hoping to work on weening down her vent settings, but slowly. We know that it is a good possibility that she will remain on the vent until transplant. Everyday she seems to get a little stronger, a little more stable.
The nurses have been telling me how crazy strong Ruthie is and how they have never seen such a fighter. It gives me so much hope and joy to hear those things. I mean I have always known that she is feisty, but it means a lot when medical professionals not only agree but go beyond to say that she is the strongest little girl they know. WOW! Praise be to God!
Ruthie,
We are so VERY VERY proud of you. Your story, your strength, your love, your smile have all changed my life and the world. Thank you Ruthie for being a fighter. You have proven time and time again that you are willing to stick it out.
I LOVE YOU SO VERY MUCH!
I thank God everyday for you and for your ability to change the world around you.
You are amazing!
We love you!
Love Mommy
Wednesday, June 23, 2010
Thursday, June 17, 2010
Road trips.
When I think about the word "road trips", I in-vision many experiences. I remember my childhood consisting of many road trips. Road trips with my family of 7 to see distant relatives or to go on vacation. I remember road trips with my sisters. We would car sing and dance like fools and not have a care. I then think about the road trips with friends, feeling so "cool" and having a blast. I even go on and picture the future road trips with Ruth. Planning camping trips, going to visit different landmarks and people. I use to think only of car trips as road trips. Use to.
Now, when I hear the word road trips it holds a very different meaning. It means being moved from another hospital room to another. Another room, another cold reminder that we are in the hospital.
Yesterday, Ruthie went on a "road trip" to the ICU.
She had moved into 7 West on Sunday after being vent free for week and comfy in the ICU. It felt like a pretty big deal that she was moving. We were excited. It had given us the bump in our spirits that we needed.
However, yesterday her cough seemed worse and she wasn't able to clear herself very well. We tried suctioning her through her nose and through her mouth and neither really bumped up her sats. Around 1:15, she began to desat into the 50s. They changed the pulse ox, did assessments, turned up her o2s to 4L, order chest x ray and echo and nothing brought her up. She was not angry. She was pretty content the whole time, but she wasn't Ruthie. She would fuss, but not cry. She would almost smile and then fall asleep. There was something going on.
So ROAD TRIP down the hall and into the ICU.
It looks like, Ruthie just needed some more diuretics on board. She had been retaining some extra fluid which was making it harder for her to breath. Her chest x ray looked hazy and so they are faulting the fluids. She is much happier today. She is smiling and resting well. She is down to 4L from 5L on high flow nasal o2 at 100%. We restarted her feeds at 5 mils an hour. They have even mentioned something along the lines of moving us back to the floor (7 West) again. So it looks like we have another Road Trip in our future.
As I said earlier, I "use to" in- vision so many fond road trips in the past and future. These road trips did stick with the usual terms of road trip = vacation, a car, fun, family, friends, etc. Although the definition of road trip has changed for me, I have decided to continue to dream. The next road trip I want to go on is to the OR for her new heart. I can't wait for that road trip. The excitement, the fear, the gratefulness, the praise to God.
I am praying really hard for a road trip!
I love you Ruthie Rue!
Now, when I hear the word road trips it holds a very different meaning. It means being moved from another hospital room to another. Another room, another cold reminder that we are in the hospital.
Yesterday, Ruthie went on a "road trip" to the ICU.
She had moved into 7 West on Sunday after being vent free for week and comfy in the ICU. It felt like a pretty big deal that she was moving. We were excited. It had given us the bump in our spirits that we needed.
However, yesterday her cough seemed worse and she wasn't able to clear herself very well. We tried suctioning her through her nose and through her mouth and neither really bumped up her sats. Around 1:15, she began to desat into the 50s. They changed the pulse ox, did assessments, turned up her o2s to 4L, order chest x ray and echo and nothing brought her up. She was not angry. She was pretty content the whole time, but she wasn't Ruthie. She would fuss, but not cry. She would almost smile and then fall asleep. There was something going on.
So ROAD TRIP down the hall and into the ICU.
It looks like, Ruthie just needed some more diuretics on board. She had been retaining some extra fluid which was making it harder for her to breath. Her chest x ray looked hazy and so they are faulting the fluids. She is much happier today. She is smiling and resting well. She is down to 4L from 5L on high flow nasal o2 at 100%. We restarted her feeds at 5 mils an hour. They have even mentioned something along the lines of moving us back to the floor (7 West) again. So it looks like we have another Road Trip in our future.
As I said earlier, I "use to" in- vision so many fond road trips in the past and future. These road trips did stick with the usual terms of road trip = vacation, a car, fun, family, friends, etc. Although the definition of road trip has changed for me, I have decided to continue to dream. The next road trip I want to go on is to the OR for her new heart. I can't wait for that road trip. The excitement, the fear, the gratefulness, the praise to God.
I am praying really hard for a road trip!
I love you Ruthie Rue!
Monday, June 7, 2010
SURPRISE!!
Ruthie is now tube/ vent FREE and so very happy about it!!
Yesterday morning around 9 am, the tube left and the smiles appeared. Within a few minutes of being extubated, Ruthie was smiling and laughing.
Medically speaking…..
Ruthie’s cath Thursday afternoon went as planned. No changes, nothing to repair. She recovered nicely over night.
Friday mid morning, Ruth’s NP swab (from a week prior) came back positive for rhino- virus (the common cold). They put her on isolation and that’s about all you can do for a “cold”.
Saturday morning, Dr. Gatiz seemed to believe that the cold is what triggered her heart to go further into failure. This means that she wasn’t randomly getting worse or going into acute decompansating heart failure. Her catching a cold is not good, by any means. However at the same time, it is nice to hear that she may get better after the virus clears.
Sunday morning, Dr. Gatiz was ready to pull the tube! He felt that she was just working against the vent. Her cough had gotten better and she was able to clear the tube (meaning her coughs were more productive).
Currently, Ruthie is still tube/vent free! She is also fever free. Her heart rate, however, has remained rather high. She is staying in the mid 160s to the 190s. Her prior baseline was 130s-160s. She is not working any harder. Her lactase look normal and her respiratory status is stable. She is on a .5L of o2 through nasal cannula. Her art line was removed this morning since she is no longer on the vent they do not need a constant blood pressure reading. Less lines, less infections! She still has not slept very well since extubation. She is coming down off the dex and she is a little tweaked out. She was super happy yesterday, but very jittery. It was like someone spiked her TPN with Mountain Dew. I am not going to lie, it was rather funny because she was so pleased with the world.
However, today is a different story. Since she has been up for almost 36 hours straight (minus a cat nap here or there), she is starting to get a little cranky. She is tired, but fights sleep. We are working on weaning her off the constant dex with oral drug twice a day. I hope we are able to get her heart rate down and control her nap/ sleeping times again. She is not really upset, she is just tired and a tired baby is an irritable baby.
We are here. We are still standing.
So things are really starting to look up. Ruthie is getting stronger and now VENT FREE! (I don’t think I can say it enough! I smile each time! VENT FREE!). We are so grateful for each day.
Thank you God for giving Ruth a feisty, strong- willed attitude. She is so happy and so strong. I am so proud of her ability to smile even though things are rough.
Thank you God for being her strength.
Thank you Lord for being our hope and our source of peace. We trust in You and we believe that You have a plan. It is not for us to know His plans, just to trust and believe that He will provide.
We are always thinking about our heart babies near and far. We pray that each family finds peace in their situation. We pray for your strength and for your willingness to fight. We are so thankful for having you in our lives to share these triumphs and trails. We are so blessed.
Thank you family and friends. You always know what to say and how to protect us and provide aide. We are so lucky to have you as our cheerleaders and our crutches. This is not an easy task that you take on by being in our lives. Yet, you time and time again show your compassion and understanding. Thank you! Thank you! Thank you!
Thank you to the staff of SLCH! YOU ARE AMAZING! You do your job with such pride and care. Not only has Ruthie inherited a second family, but we have as well. You care just as much about Ruthie’s medical care as you do her about her and our families’ well being. You will never know how many times you have pieces us back together in those dark hours. Thank you Lord for placing Ruth is such capable hands.
I posted a new poem on the side bar. My sister sent it to me last night and I think it really gives peace to this whole "waiting" experience.
In His Time
Yesterday morning around 9 am, the tube left and the smiles appeared. Within a few minutes of being extubated, Ruthie was smiling and laughing.
Medically speaking…..
Ruthie’s cath Thursday afternoon went as planned. No changes, nothing to repair. She recovered nicely over night.
Friday mid morning, Ruth’s NP swab (from a week prior) came back positive for rhino- virus (the common cold). They put her on isolation and that’s about all you can do for a “cold”.
Saturday morning, Dr. Gatiz seemed to believe that the cold is what triggered her heart to go further into failure. This means that she wasn’t randomly getting worse or going into acute decompansating heart failure. Her catching a cold is not good, by any means. However at the same time, it is nice to hear that she may get better after the virus clears.
Sunday morning, Dr. Gatiz was ready to pull the tube! He felt that she was just working against the vent. Her cough had gotten better and she was able to clear the tube (meaning her coughs were more productive).
Currently, Ruthie is still tube/vent free! She is also fever free. Her heart rate, however, has remained rather high. She is staying in the mid 160s to the 190s. Her prior baseline was 130s-160s. She is not working any harder. Her lactase look normal and her respiratory status is stable. She is on a .5L of o2 through nasal cannula. Her art line was removed this morning since she is no longer on the vent they do not need a constant blood pressure reading. Less lines, less infections! She still has not slept very well since extubation. She is coming down off the dex and she is a little tweaked out. She was super happy yesterday, but very jittery. It was like someone spiked her TPN with Mountain Dew. I am not going to lie, it was rather funny because she was so pleased with the world.
However, today is a different story. Since she has been up for almost 36 hours straight (minus a cat nap here or there), she is starting to get a little cranky. She is tired, but fights sleep. We are working on weaning her off the constant dex with oral drug twice a day. I hope we are able to get her heart rate down and control her nap/ sleeping times again. She is not really upset, she is just tired and a tired baby is an irritable baby.
We are here. We are still standing.
So things are really starting to look up. Ruthie is getting stronger and now VENT FREE! (I don’t think I can say it enough! I smile each time! VENT FREE!). We are so grateful for each day.
Thank you God for giving Ruth a feisty, strong- willed attitude. She is so happy and so strong. I am so proud of her ability to smile even though things are rough.
Thank you God for being her strength.
Thank you Lord for being our hope and our source of peace. We trust in You and we believe that You have a plan. It is not for us to know His plans, just to trust and believe that He will provide.
We are always thinking about our heart babies near and far. We pray that each family finds peace in their situation. We pray for your strength and for your willingness to fight. We are so thankful for having you in our lives to share these triumphs and trails. We are so blessed.
Thank you family and friends. You always know what to say and how to protect us and provide aide. We are so lucky to have you as our cheerleaders and our crutches. This is not an easy task that you take on by being in our lives. Yet, you time and time again show your compassion and understanding. Thank you! Thank you! Thank you!
Thank you to the staff of SLCH! YOU ARE AMAZING! You do your job with such pride and care. Not only has Ruthie inherited a second family, but we have as well. You care just as much about Ruthie’s medical care as you do her about her and our families’ well being. You will never know how many times you have pieces us back together in those dark hours. Thank you Lord for placing Ruth is such capable hands.
I posted a new poem on the side bar. My sister sent it to me last night and I think it really gives peace to this whole "waiting" experience.
In His Time
Friday, June 4, 2010
Cath Lab
Ruthie did well during the cath yesterday. It took about 2 hours for the cath and then another one hour or so to stop the bleeding at her cath sites. She had to be re-paralyzed and sedated in order for the doctor to apply pressure and stop the bleeding. Otherwise, it was a pretty normal cath experience for her. Cath number 6 went off without a hitch.
Results:
Well, fortunately/unfortunately we do not have any "real" results. There was nothing in her sano shunt or in the stints causing a block. Her heart looks the same in those terms. However, what this cath told us is that her heart it getting worse because it's just getting worse. She has been working on a post-Norwood heart since August. Even though we have put her on milrinone (a heart med) we still can't not perserve her special heart.
The Plan:
WE NEED A NEW HEART!
We also have no plan on extubating until she gets her heart.
Unfortunately, where we are now is our new baseline. We need to keep her comfy and not let her work too hard.
We need to preserve her heart until she gets her whole heart!
So until then, we are praying and living at SLCH "our home away from home".
Constantly praying and constantly waiting!
Keep praying for all the heart babies! Pray for Nolinn, Grace, Audrey, Cameron and all the heart babies who have gotten their second chance at life. I pray they continue to stay strong with their new hearts.
Pray for Derrick, Jacob, Tucker, Ben, Gabby, Cameron, Gabby, Luke, Lorenzo and all those little fighters!
God is good!
Laura
Results:
Well, fortunately/unfortunately we do not have any "real" results. There was nothing in her sano shunt or in the stints causing a block. Her heart looks the same in those terms. However, what this cath told us is that her heart it getting worse because it's just getting worse. She has been working on a post-Norwood heart since August. Even though we have put her on milrinone (a heart med) we still can't not perserve her special heart.
The Plan:
WE NEED A NEW HEART!
We also have no plan on extubating until she gets her heart.
Unfortunately, where we are now is our new baseline. We need to keep her comfy and not let her work too hard.
We need to preserve her heart until she gets her whole heart!
So until then, we are praying and living at SLCH "our home away from home".
Constantly praying and constantly waiting!
Keep praying for all the heart babies! Pray for Nolinn, Grace, Audrey, Cameron and all the heart babies who have gotten their second chance at life. I pray they continue to stay strong with their new hearts.
Pray for Derrick, Jacob, Tucker, Ben, Gabby, Cameron, Gabby, Luke, Lorenzo and all those little fighters!
God is good!
Laura
Thursday, June 3, 2010
Prayer Request
Ruthie went into the cath lab about a half hour ago. Please pray for her and her doctors. Pray for strength, guidance and understanding.
They are preforming a diagnostic cath so we are planning to see her again around 6 pm.
I will update once we hear more info!
They are preforming a diagnostic cath so we are planning to see her again around 6 pm.
I will update once we hear more info!
We are really in the ICU now!
Yesterday morning Ruthie was intubated.
It has been one of the possibilities for treatment since Sunday afternoon. It was a well- thought out decision. Her o2 sats had been a bit inconsistent and her heart rate kept creeping up and then staying around 180.
So we had tried antibiotics to see if she had any type of lung infection causing her respiratory issues and there was no change. Her chest x rays continuously looked clear and showed no sign of pneumonia.
We then tried upping her o2 levels through o2 nasal cannulas. We went up to 7 L on 60%. She seemed to settle a bit, but it wasn't the right answer.
So then we tried nesiritide (another heart med), her sats did not improve and her heart rate once again stayed elevated.
Our second to last hope was to stabilize her with an ETT tube and then work from there. Well, stabilizing worked for now. She has already moved down from Volume support to pressure support. She is now at 30% o2 instead of 40% (that they started with). She even slept most of the day yesterday and was pretty easy to settle if she got upset.
We are still unsure what caused her to have these episodes. Almost all fingers point to her heart failure worsening. It is nice to hear that she doesn't have an infection or lung issues. However, also hearing that it is her heart means that we really don't have many other options. She still needs a new heart. Well, that is something we have known! I just hate being reminded by the doctors and nurses that "all we need is a heart!" It makes me feel as though they do not have any other choice but to tell me this since she is getting worse.
So today, we are planning to have a heart cath. However, it is not for sure. Everything depends on what the doctors want to do. They really don't think her sano shunt is the cause of all of her acute decompensating heart failure. They don't want to do a cath if they don't need to. On the other hand, they don't want to wait longer until she is more sick, more tired and then try to do a cath on an already "fragile" baby. So they are waiting until rounds this morning to decide.
So once again we will hurry up and wait.
I ask for purely positive thoughts and prayers. I know God will provide. He has placed so many in my life to give me a glimmer of hope and peace when I have needed it the most. I know HE will be there through it all and that in the end His will will be done.
Trust in the Lord God with all your heart.
Lord, we are trusting in you.
Heart hugs!
THANK YOU for being our support!
Laura
It has been one of the possibilities for treatment since Sunday afternoon. It was a well- thought out decision. Her o2 sats had been a bit inconsistent and her heart rate kept creeping up and then staying around 180.
So we had tried antibiotics to see if she had any type of lung infection causing her respiratory issues and there was no change. Her chest x rays continuously looked clear and showed no sign of pneumonia.
We then tried upping her o2 levels through o2 nasal cannulas. We went up to 7 L on 60%. She seemed to settle a bit, but it wasn't the right answer.
So then we tried nesiritide (another heart med), her sats did not improve and her heart rate once again stayed elevated.
Our second to last hope was to stabilize her with an ETT tube and then work from there. Well, stabilizing worked for now. She has already moved down from Volume support to pressure support. She is now at 30% o2 instead of 40% (that they started with). She even slept most of the day yesterday and was pretty easy to settle if she got upset.
We are still unsure what caused her to have these episodes. Almost all fingers point to her heart failure worsening. It is nice to hear that she doesn't have an infection or lung issues. However, also hearing that it is her heart means that we really don't have many other options. She still needs a new heart. Well, that is something we have known! I just hate being reminded by the doctors and nurses that "all we need is a heart!" It makes me feel as though they do not have any other choice but to tell me this since she is getting worse.
So today, we are planning to have a heart cath. However, it is not for sure. Everything depends on what the doctors want to do. They really don't think her sano shunt is the cause of all of her acute decompensating heart failure. They don't want to do a cath if they don't need to. On the other hand, they don't want to wait longer until she is more sick, more tired and then try to do a cath on an already "fragile" baby. So they are waiting until rounds this morning to decide.
So once again we will hurry up and wait.
I ask for purely positive thoughts and prayers. I know God will provide. He has placed so many in my life to give me a glimmer of hope and peace when I have needed it the most. I know HE will be there through it all and that in the end His will will be done.
Trust in the Lord God with all your heart.
Lord, we are trusting in you.
Heart hugs!
THANK YOU for being our support!
Laura
Tuesday, June 1, 2010
In a years time....
Sorry about the delay! Somewhere in the midst of May, I lost a good 7-10 days. I don't know where they went, but they are gone now and I am in shock that it is June! WHOA! So, sorry for the wait. We appreciate all your prayers. Please keep them coming!
May 4, 2010 marked the one year anniversary of Ruth Elizabeth's hypo-plastic left heart syndrome diagnosis. It has been a year since we started researching and learning about those four little letters "HLHS" that hold a huge meaning.
Over the past year, we have traveled a very bumpy road. Along the way, we have made friends and been touched by so many heart stories and families. I never would have thought that being diagnosed with a life threatening heart defect could affect and change your life in a positive way. Although it has not been an easy road to travel on, it is one that we are coming to know well.
If we have learned nothing else over the past year, but to love and trust in God then we still have learned so much. God is present in our lives more than ever now. Some say that a real God would not let these things happen. I say that through these "things" God is shaping us and preparing us for our life journey. All things in life that are worth it, are not easy.
So here's to stepping out of our comfort zones, being scared, and still living one day at a time......
Our little peanut...
August 18, 2009...
"God danced the day you were born!"
Finally home and now a month old!
Ruthie's official Church Baptism and her 2 month birthday!
My little pumpkin...Gearing up for Halloween!!
Three months old and showing some of that Ruthie ATTITUDE!
Say what!?! I am 4 months!?!
5 months and trying out that tummy time stuff!
Post- Cath, Lung Biopsy, Liver Biopsy! The day had come for her to be listed on the UNOS Heart Transplant List! Although she is not showing it, she is super happy!
Feb. 3, 2010
Happy 6th month birthday Ruthie, my fighter!
Happy 7 months Birthday!
(And day after St. Patrick's Day!)
Where's Ruths?
There she is!
8 months old and still happily waiting!
9 months old!
Ruthie is currently a very busy little princess. Besides keeping up with all of her meds and keeping an eye on anyone who enters the room, she has been cutting teeth. She is trying to cut number 8 now. I cannot imagine already not feeling the best and then being "sober" and cutting teeth. But she is a trooper.
She also has been working on a schedule over the past couple weeks. We have been trying to establish playtime and naptime and everything in between. We are getting there, slowly, but there is progress.
Her daily 7 West routine consists of:
6am: Wake up call! Time for diaper change. Vitals check. And of course, every girl's favorite thing.. the scale!
8am: Medicine and assessment time. We meet her day's nurse and hear what the tentative plan is for the day.
9am: PT time! Somewhere between 9-9:45 Physical therapy comes in to play with and work on developmental skills with Ruthie. She practices sitting up, reaching for toys, rolling to her sides and tummy time (if she will let us)!
After PT, we usually see the doctors for their morning rounds. They ask about Ruth, tell me everything that they are thinking about or worried about or excited about with her and then we make our daily plan.
9:30-10am- Time for us to fight the nasty thing called sleep. Some days, its a breeze. She cuddles in my arms and is out in a few seconds. Other days, though, she fights sleep by forcing her one eye to stay open or squirming around like a worm. Either way, once she hits nap time, she is done!
11am or so- Ruthie gets to taste test formula and
some baby food. She sits up in her little feeding chair and tries things out. Some days she can't get enough. But, once again, other days she doesn't even want to see that stuff. So we try our best each day. She is still progressing, just slowly.
By noon, Ruthie is ready to watch some Veggietales and hang out and or cat nap.
Of course vitals check and assessment time too.
1-2pm: Nap time again or pretend nap time (where she hides under her covers when I try to talk to her)! We are trying to get her to nap around 1:30-2 so then she will be happy and ready for Occupational Therapy (OT) around 3pm. But we shall see.
At 4pm, we have another vitals check and usually a doctor or two that comes in to check in for the evening.
At 7pm, the new nurse for the night comes in. She works with medicines, checking the pumps, etc. She also does her assessment for the evening and makes plans for the night.
The evenings are very random for Ruthie. She sometimes has visitors at night. Otherwise, by 7-8pm she is ready once again for Veggie tales and then bed.
She is a pretty "normal" baby despite being attached to TPN, lipids, feeds, milirone, a pulse ox and ekg stickers. She is a poster "hospital baby" (I guess if there was one). Even a few nurses have said that she is a good, calm, happy princess, unless she doesn't feel good... and then WATCH OUT for the DIVA!.
However, things have changed a little bit now.
On Friday, May 28th Ruthie was NP swabbed for nasal infection. She has been coughing a whole bunch lately and it seems like the cough is getting worse. In order to keep Ruthie protected, she went on isolation Friday afternoon.
Saturday, May 29th at 5:30 am, I received a call from Jennifer (a 7 West nurse) saying that Ruthie was moving to the CICU for closer monitoring. Over the course of the night, her cough had worsened and she had become irritable. They turned off her feeds to see if her stomach was not tolerating the 5 mils an hour. (Her feeds had been turned off the weekend before and Ruthie's main source of nutrition was now through TPN and lipids since her stomach is not as absorbent as it had been. So we were in the process of increasing her feeds). However, that did not seem to cut it. She was still coughing like crazy and very fussy. During these periods, she was dropping her saturation levels into the lower 60s and it was taking a bit of time to recover.
So to be proactive, they moved her to the CICU for closer monitoring and to figure out whether it was her heart or just a cold.
So right now we are still at a standstill. Ruthie is on 1.5L of 02 through nasal cannulas. They have restarted her feeds and those are running at 10 mils an hour. She is still on her cocktail of medicines including diuretics, milirone (heart med), reglan and another reflex/indigestion medicine, and asprin (as a blood thinner). She is no longer on potassium orally since they can add it to her TPN. This makes me super happy because sometimes that potassium came right back up because it was so rough on her stomach.
The doctors are once again talking about a heart cath this week. They have taken a few x-rays and done an echo, but nothing seems to be the problem. They are not sure if she just has a little bug and that is causing her coughing. Or if her heart failure is progressing. So we are just waiting to see what happens.
I think there is a common theme in all of this: WAITING!
If anyone really knew me before all of this hit my plate, they would know that "waiting" is not something I do well. If I want something, I want it now. However, that attitude leads to much disappoint and heartache when that "something" (aka the heart for Ruthie) doesn't appear. I am not going to lie and say that I still don't get my heartbroken with this whole situation. Each day, I wake up thinking... "Is this the day we get our heart?" And each night, I go to bed a bit disappointed that we hadn't earned our heart yet. I feel as though I am becoming a bit jaded with this whole experience. I am still VERY hopeful, but this "waiting game" is one hell of a roller coaster ride and frankly I would like to get off!
As of June 3, 2010, Ruthie will hit the average waiting time period for the heart transplant list at SLCH. The average time is 6-16 weeks. June 3rd = 16 weeks on the dot! We are so very grateful for each day God has given us with Ruthie. She is still my sunshine and forever will be!
It is amazing what a year can bring you. I am so thankful for each day over this past year. I have learned so much about myself and this world through the eyes of a now 9 month old. God has been seen through Ruth by so many people. Thank you, God, for letting your light shine through her smiles. We are blessed!
Please continue to pray for patience, peace and guidance.
In God's time all will be right!
Heart hugs!
Laura
May 4, 2010 marked the one year anniversary of Ruth Elizabeth's hypo-plastic left heart syndrome diagnosis. It has been a year since we started researching and learning about those four little letters "HLHS" that hold a huge meaning.
Over the past year, we have traveled a very bumpy road. Along the way, we have made friends and been touched by so many heart stories and families. I never would have thought that being diagnosed with a life threatening heart defect could affect and change your life in a positive way. Although it has not been an easy road to travel on, it is one that we are coming to know well.
If we have learned nothing else over the past year, but to love and trust in God then we still have learned so much. God is present in our lives more than ever now. Some say that a real God would not let these things happen. I say that through these "things" God is shaping us and preparing us for our life journey. All things in life that are worth it, are not easy.
So here's to stepping out of our comfort zones, being scared, and still living one day at a time......
Our little peanut...
August 18, 2009...
"God danced the day you were born!"
Finally home and now a month old!
Ruthie's official Church Baptism and her 2 month birthday!
My little pumpkin...Gearing up for Halloween!!
Three months old and showing some of that Ruthie ATTITUDE!
Say what!?! I am 4 months!?!
5 months and trying out that tummy time stuff!
Post- Cath, Lung Biopsy, Liver Biopsy! The day had come for her to be listed on the UNOS Heart Transplant List! Although she is not showing it, she is super happy!
Feb. 3, 2010
Happy 6th month birthday Ruthie, my fighter!
Happy 7 months Birthday!
(And day after St. Patrick's Day!)
Where's Ruths?
There she is!
8 months old and still happily waiting!
9 months old!
Ruthie is currently a very busy little princess. Besides keeping up with all of her meds and keeping an eye on anyone who enters the room, she has been cutting teeth. She is trying to cut number 8 now. I cannot imagine already not feeling the best and then being "sober" and cutting teeth. But she is a trooper.
She also has been working on a schedule over the past couple weeks. We have been trying to establish playtime and naptime and everything in between. We are getting there, slowly, but there is progress.
Her daily 7 West routine consists of:
6am: Wake up call! Time for diaper change. Vitals check. And of course, every girl's favorite thing.. the scale!
8am: Medicine and assessment time. We meet her day's nurse and hear what the tentative plan is for the day.
9am: PT time! Somewhere between 9-9:45 Physical therapy comes in to play with and work on developmental skills with Ruthie. She practices sitting up, reaching for toys, rolling to her sides and tummy time (if she will let us)!
After PT, we usually see the doctors for their morning rounds. They ask about Ruth, tell me everything that they are thinking about or worried about or excited about with her and then we make our daily plan.
9:30-10am- Time for us to fight the nasty thing called sleep. Some days, its a breeze. She cuddles in my arms and is out in a few seconds. Other days, though, she fights sleep by forcing her one eye to stay open or squirming around like a worm. Either way, once she hits nap time, she is done!
11am or so- Ruthie gets to taste test formula and
some baby food. She sits up in her little feeding chair and tries things out. Some days she can't get enough. But, once again, other days she doesn't even want to see that stuff. So we try our best each day. She is still progressing, just slowly.
By noon, Ruthie is ready to watch some Veggietales and hang out and or cat nap.
Of course vitals check and assessment time too.
1-2pm: Nap time again or pretend nap time (where she hides under her covers when I try to talk to her)! We are trying to get her to nap around 1:30-2 so then she will be happy and ready for Occupational Therapy (OT) around 3pm. But we shall see.
At 4pm, we have another vitals check and usually a doctor or two that comes in to check in for the evening.
At 7pm, the new nurse for the night comes in. She works with medicines, checking the pumps, etc. She also does her assessment for the evening and makes plans for the night.
The evenings are very random for Ruthie. She sometimes has visitors at night. Otherwise, by 7-8pm she is ready once again for Veggie tales and then bed.
She is a pretty "normal" baby despite being attached to TPN, lipids, feeds, milirone, a pulse ox and ekg stickers. She is a poster "hospital baby" (I guess if there was one). Even a few nurses have said that she is a good, calm, happy princess, unless she doesn't feel good... and then WATCH OUT for the DIVA!.
However, things have changed a little bit now.
On Friday, May 28th Ruthie was NP swabbed for nasal infection. She has been coughing a whole bunch lately and it seems like the cough is getting worse. In order to keep Ruthie protected, she went on isolation Friday afternoon.
Saturday, May 29th at 5:30 am, I received a call from Jennifer (a 7 West nurse) saying that Ruthie was moving to the CICU for closer monitoring. Over the course of the night, her cough had worsened and she had become irritable. They turned off her feeds to see if her stomach was not tolerating the 5 mils an hour. (Her feeds had been turned off the weekend before and Ruthie's main source of nutrition was now through TPN and lipids since her stomach is not as absorbent as it had been. So we were in the process of increasing her feeds). However, that did not seem to cut it. She was still coughing like crazy and very fussy. During these periods, she was dropping her saturation levels into the lower 60s and it was taking a bit of time to recover.
So to be proactive, they moved her to the CICU for closer monitoring and to figure out whether it was her heart or just a cold.
So right now we are still at a standstill. Ruthie is on 1.5L of 02 through nasal cannulas. They have restarted her feeds and those are running at 10 mils an hour. She is still on her cocktail of medicines including diuretics, milirone (heart med), reglan and another reflex/indigestion medicine, and asprin (as a blood thinner). She is no longer on potassium orally since they can add it to her TPN. This makes me super happy because sometimes that potassium came right back up because it was so rough on her stomach.
The doctors are once again talking about a heart cath this week. They have taken a few x-rays and done an echo, but nothing seems to be the problem. They are not sure if she just has a little bug and that is causing her coughing. Or if her heart failure is progressing. So we are just waiting to see what happens.
I think there is a common theme in all of this: WAITING!
If anyone really knew me before all of this hit my plate, they would know that "waiting" is not something I do well. If I want something, I want it now. However, that attitude leads to much disappoint and heartache when that "something" (aka the heart for Ruthie) doesn't appear. I am not going to lie and say that I still don't get my heartbroken with this whole situation. Each day, I wake up thinking... "Is this the day we get our heart?" And each night, I go to bed a bit disappointed that we hadn't earned our heart yet. I feel as though I am becoming a bit jaded with this whole experience. I am still VERY hopeful, but this "waiting game" is one hell of a roller coaster ride and frankly I would like to get off!
As of June 3, 2010, Ruthie will hit the average waiting time period for the heart transplant list at SLCH. The average time is 6-16 weeks. June 3rd = 16 weeks on the dot! We are so very grateful for each day God has given us with Ruthie. She is still my sunshine and forever will be!
It is amazing what a year can bring you. I am so thankful for each day over this past year. I have learned so much about myself and this world through the eyes of a now 9 month old. God has been seen through Ruth by so many people. Thank you, God, for letting your light shine through her smiles. We are blessed!
Please continue to pray for patience, peace and guidance.
In God's time all will be right!
Heart hugs!
Laura
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