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Coffee and Cereal

Today has been such a success!
I was up at 6:15am (although my alarm was set for 6:30am). Maybe one day I will hear that alarm again. (Sigh).
Anyways.... I woke up at 6:15 and started my brand new coffee maker. I haven't had a coffee maker since before I was pregnant, so it was a long awaited present. THANK YOU MOM!
After pouring a nice warm cup of coffee, I began my morning routine: Dishes, medications, laundry, and Ruthie's gym time. Before 7:30, I had another cup poured, the kitchen clean, Ruth napping, and dishes done. What a great start to the day!
Now onto the laundry and the bathrooms. Folded laundry while watching the end of the 7am news. By 8am, I was scrubbing the bathroom and prepping Ruthie's bottle and cereal. That is right, CEREAL!
Around 8:30, Ruth was wide awake and ready to eat. Today was the day to try cereal. Real rice cereal in a bowl, not in the bottle. After thickening the rice cereal concoction to Ruthie's liking, it was only a matter of minutes before I was mixing a second batch. She really liked the cereal today. Of course it was messy, but it was awesome to see how happy she was during feeding time. A half hour later Ruth was done eating and had taken down 2.5 oz worth of cereal.
Ruth helped me clean up her room. (and by helped I mean she laid on the ground and watched me:) But that is helpful! Ruthie and I played on her soft star blanket with many toys today. After Ruthie's stomach had settled, it was bath time!!! Ruth is starting to be pretty good in the bath.
Before I knew it, it was 10:30 and Ruth was apparently tuckered out from all the playing. So Ruth went off to sleep and I was able to shower. AHHHH! A nice warm shower in my nice clean bathroom. Wonderful!
I was able to completely get myself ready, load the car, pack Ruthie's diaper bag, and finish the grocery list before she woke up at 11:30. I guess coffee before 11am is quite powerful. I usually don't have any caffeine until 12 or so maybe it was the extra legal stimulant. AMAZING! I felt like superwoman, running around the house getting it all done.
Ruth ate like a champ again at 11:45 while I cooked dinner for later. She is such a good cook and so smiley in the kitchen. So much fun!
By 12:30, Ruthie and I were all packed up and ready to go to see Grandma Yarbrough and the great- grandparents Pollmann. I filled them all in on Ruth's antics for the day and said goodbye (okay I said goodbye like 5 times, but it happens:)) They are spending some quality time with her while I get to go grocery shopping and to work. It was really nice to be able to drop her off and just go in and out of the stores, especially in this weather. Silly snow/sleet/ rain. Icky!! And she needs some time with her grandparents.
So by 2:45pm I was done grocery shopping and home.

WHAT A GREAT DAY! I was able to get so much done and yet spend some quality time with my little girl. Perfect!
Today I am superwoman, thanks mostly to the coffee this morning! Oh man I think I found an addiction! Ah, oh well!

Another Reminder

Being a mom has it's ups and downs, as any mother knows. Some days you are full of energy and you feel like superwoman. Other days, you are there, just trying to get by. Yesterday was a good day when it comes to being a mom. However, when it comes to being a heart mom, yesterday was not a good day.
With every doctor's visit I am reminded that my life is not normal and I am starting to get use to the non-normal life. I am not getting use to the heart ache though. It hurts to think that your little one will have to go through so much. It hurts knowing that you can not fix this problem for your child. It hurts to think about the future because you are not sure what it will bring. Will I get to see my little girl grow up and go to school? Will she be able to get through a good portion of her life without a transplant? I am afraid to plan for the future. Afraid that Ruth may not make it that far so planning anything nervous. But how can I go through life not making plans? I can not keep avoiding the future, but how do I plan with a heavy heart?

It is exhausting! Waking up every 3-4 hours to feed a hungry baby. Checking medications. Planning doctor visits and hospitalization. And then being expected to keep it all together during the holidays and during family visits. What a crazy life! Living life as a heart mother is much harder than I could ever expect. Is the care of Ruthie hard? No. I enjoy taking care of her. However, the trade off of no sleep, no energy, no baby sitters (because honestly I don't feel comfortable with others watching her--- not because I dont trust them, but because she is a special baby and I dont want to make people feel uncomfortable) and no quiet time is a bit rough. It is a roller-coaster that I can't get off, but I wouldn't get off even if I had the chance.


I know that complaining does not get you anywhere, but some days venting is enough to pick me off the floor and to move on.
I do love my family. I love my life. I will march on.

Another doctor's visit

Today we went to the cardiologist, Dr. Goel. Nothing too new or exciting today. Ruth's o2 stats were hanging around 74 (where they have been for a while now) and Ruth weighs the same as she did last visit(9lbs 10 oz). We are still planning on the Glenn on Jan. 27th. They only thing that Dr. Goel wants us to work on is gaining weight. So for the first time today, Ruthie ate some cereal in her bottle. She did really well with it actually. So I hope to move her to cereal (not in the bottle) by the end of the week. I am looking forward to the cereal stained clothes and floor. But it will be worth it if she starts to gain weight.
Besides going to the doctor and trying cereal, Ruth had a pretty quiet day today. It was nice to sort of catch up from the weekend with a quiet, non- active Monday. Since we had the extra day over the weekend, I was able to get my cleaning done a day early so I could enjoy playing and just hanging out with Ruth today. It was a good day.

12.22.09

We have a date!

Posted Dec 22, 2009 8:01pm

On January 27, 2010 Ruth will be going into St. Louis Children's Hospital for her Glenn surgery. We will have a pre-operation day on Jan. 26th starting at 10 am. That night we are get to bring Ruthie home and prepare ourselves for the hospital and surgery the following day. We are not sure what time surgery will be, but we will have that information on Jan. 26th.

If, I don't get a chance to post before the holidays, then Merry Christmas to everyone and Happy New Year!

Heart hugs and prayers!

Ruthie, Laura and Josh

12.21.09

Planning on the Glenn in January

Posted Dec 21, 2009 6:18pm

I just received a phone call from Dr. Goel's office. He has talked to the surgeon, Dr. Huddleson, and they are planning on doing the Glenn a month from now. So we are looking to January now surgery. We should know dates, times, etc by the end of next week.
(Sigh)
What a relief! We are able to do the Glenn! I am so happy that we are able to do the Glenn.
(Cringe)
But at the same time, it means surgery: open heart surgery at the end of January.

We are happy, yet sad. Relieved, yet worried. What an emotional ride.
I guess we always knew there was another surgery lurking around the corner, but I don't think we realized that is would be this soon. It seems like yesterday that we were bringing her home.

So please keep Ruthie and our family in your prayers. We are praying for guidance, strength, courage, wisdom, healing, understanding, patience and hope. And anything else in between.

Happy Holidays!
Merry Christmas!

Heart Hugs!
Ruth, Laura and Josh

12.19.09

Happy Birthday Ruth!

Posted Dec 19, 2009 11:14am

We had a very active 4 month birthday yesterday. Ruthie and I started our morning by eating quietly (which was the first time in a few days). She polished off her 3 oz bottle and then proceeded to play while I got ready. After a diaper change and a new outfit, we were out the door at 8 am and on our way to her cardiologist, Dr. Goel.

Doctor Time...
Ruthie did really well at this appointment. She must be getting use to all the commotion and poking because she just sat there and took it. Ruthie weighed in at 9lbs 11 oz and is 23inches tall. She is just moving right along. Her O2 stats were at 74 which is about her norm now, or at least it has been the past couple visits. Her blood pressures were good too. However, when Dr. Goel checked her groin pulse he was a little concerned since it was not as strong. So without too much of a hassle, Ruthie and I went down the hall for an echo. Once again, Ruthie did awesome with the echo. I think yesterday was just "her day." She was very content. She even placed her hand around the cord and held on tight, as if she was helping. About halfway through the echo she began holding the technicians', Deborah, hand. Adorable. I wish I would have brought the camera. Next time though, next time.

Echo results:
They echo took a mere 20 minutes because Ruth cooperated so well. The results of the echo were not much different than the last echo. Her heart still has poor function. With the last echo, Dr. Goel put her on Lasix twice daily hoping that if we lost the swelling we would gain better heart function. Well, the swelling is gone, but her heart is still not contracting as hard as it needs to to pump all the blood out. Basically, her heart is not squeezing tight enough, so fluid is backing up in her lungs and around her heart. This is causing her hands to be bluer and is why her heart is not looking good. So we are continuing the Lasix two times daily and we are increasing her enalapril to .6 twice a day. We hope that the Lasix will keep her lungs clear and will help get rid of the extra fluid she is holding onto. We also hope that the increase in her enalapril, the heart medicine, will help her heart contract more efficiently and will then bring the pressures down.

Now when is comes to pressures...
we are kind of going in circles. Since her heart is high pressured right now, surgery may be risky. Like we were told earlier, if her pressures are too high, surgery may not be an option and then we would need to be on the heart transplant list. However, the Glenn will relieve the pressure in the heart and will make Ruth much better and her heart work much more efficiently. So surgery, the Glenn is what we, us and Dr. Goel, want to be able to do. But since her heart is high pressured we don't know if we can. We need the Glenn to lower pressure, but we can't do the Glenn if her heart is high pressured. It is a crazy circle.

So our plan of action....
We are increasing her medications as of this morning. She seems to be tolerating the increase thus far. We do not go back to the cardiologist until December 28th. Before then, Dr. Goel plans on conferencing with Dr. Huddleson, the surgeon, about when they think surgery could or if it will take place. Dr. Goel is hopeful that the enalapril will lower the pressures enough to get us to the Glenn. He is thinking that her Glenn is not too far off. He said yesterday that he was looking at the first week in February. However, he needs to discuss all of it with Dr. Huddleson.
So we are just waiting it out.

As if the doctor's appointment wasn't enough.
Ruthie had a visit from our health home care nurse, Angie, who needed to give her an RSV injection:( So Ruthie received her injection in the house which was nice because we didn't have to go outside again. On the other hand, my poor little girl had to get another shot this week (5 real shots total; 1 oral) and in her own home. The nurse said that she feels so bad having to give shots in home because that is the baby's safe place. But alas, Ruthie did much better in the afternoon after a long nap.

Fun Time
To celebrate Ruthie's birthday and to put both of us in the holiday mood, we made cookies yesterday. Ruthie helped me so much. She sat on the counter and gave me an audience to sing to and even patronized me with a few laughs and lots of smiles. And of course she gave me kisses which added to the sweetness of the cookies. It was really fun hanging out and just baking away. Ruth is such a great baker. Oh and a good cook. She has been helping Mommy cook a lot this week.

We sure had an eventful 4 month old birthday yesterday. I plan on posting pictures later this weekend.

As all CHD parents know, it is a rollercoaster we are on. Yesterday had it's highs, it's lows, and of course it's upside down moments. I am just thankful for it all. I am really trying to cherish each moment, good or bad, happy or cranky. We never know what tomorrow brings, so enjoy today!

Heart hugs!

Ruthie, Laura and Josh!

12.17.09

Two down, one more to go.

Posted Dec 17, 2009 6:48pm

This week is a pretty crazy week for Ruth. We went to the Endocrinologist Tuesday at 8:30 am and then to the Pediatrician at 1 pm. According to the Endocrinologist, Ruth is right on track. We are going to stay on the thyroid medicine daily at .25 mg. Apparently that is keeping her at the appropriate level. We don't have to have another blood screening for the her T4 until March now, which is right before we go back to see that doctor.
The pediatrician's appointment went well. Ruth is growing and is finally on the growth chart. She is at the 10th percentile for her height. So she is getting there, just slowly. She did receive 4 shots and one oral immunization. She loved the oral one, which surprised the nurse. No surprise for us, since she LOVES her meds each day. LOL. Ruth did not like the 4 shots though; nor did mommy. It was so sad:(
After a long day at the doctors on Tuesday we spent the rest of the evening fighting Ruth to eat. By the time the morning rolled around, we decided to call the doctors to see what we could try to get Ruth to eat and not scream at us each time the bottle touched her mouth. We tried new nipples, new bottles, different formula and Tylenol. After reaching the nurse at Dr. Goel's, our cardiologist, office we were on our way to Walgreens to get a prescription for reflux medicine. So here we are now. She has been on the reflux medicine for almost 24 hours now. She is starting to eat much better, but still fights a little. We hope this medicine kicks in tonight and that we have a more peaceful and less painful night for Ruthie.
We go back to Dr. Goel tomorrow at 8:30am. So hopefully after this appointment we will know more information about Ruth's eating (well not eating) habits and when her next heart cath will take place.
As always, we are praying for Ruth and her doctors.
I plan on updating soon after her appointment tomorrow but we will see what happens.
Heart hugs!

12.2.09

Cardiologist Appointment

Posted Dec 2, 2009 7:28pm

Tuesday, November 24th: Cardiologist Appointment
We followed up with Dr. Goel after Ruth's heart cath on November 18th. He did order an echo for her in order to see why her heart was still functioning poorly and if there was any reason why she would be swollen. Her poor little hands, feet and eyes were so puffy after the cath. After a long doctor's visit, Dr. Goel decided to put her on lasik again in order to help drain the extra fluid. We were told to keep an extra eye on her sleeping, eating and everyday habits over the holiday weekend and then we would return to him on Monday, November 30th to follow up.

Monday, November 30th: Follow Up
We returned to Dr. Goel's office a changed baby. Ruth looked much better and her feet, hands, and face were no longer puffy. He checked her O2 stats and they were hanging in the lower 70s rather than the upper 60s like the week prior. Her eating habits have also changed since the start of her lasik. She is now eating anywhere from 20-23 oz a day (before she was at 17-19). It is amazing how much happier Ruth seems to be now that she isn't swollen. We have a week full of doctor's visits starting December 15th. Until then we are just taking it all in day by day. We are truly appreciating all the time we get to spend with her.

Please pray for Nadine and Josh, parents to Hailey (HLHS baby). Today, God chose to take their angel back to heaven. RIP Hailey: 7/18/09- 12/2/09. Your life, albeit short, was extremely precious. May you now watch over your family and friends and help guide them through this incredible journey.

It is in moments like this, that you stop and cherish every moment you have had with your HLHS baby. Life is so preicous.

Big heart hugs and prayers for you all!
Josh, Laura and Ruthie

11.23.09

Hospital Week Over and Another Week Begun

Posted Nov 23, 2009 7:39pm

I feel like I start each of these postings with the same, "I am sorry we haven't posted in a while..." opening. So in fear of being a broken record, Sorry it took a while to post.
We spent both Wednesday night and Thursday day in the hospital last week.
The heart cath went well last Wednesday. Dr. Balzer went in and opened the aorta with a balloon. It was not completely closed off, however there was some narrowing so he went ahead and took care of it. He also discovered that the pressures in her heart are a bit high. In order to have the next surgery, the Glenn, those pressures need to be lowered quite a bit. Otherwise, surgery is too risky and no surgeon will safely say that surgery is the correct choice. If this happens then our next step is a heart transplant. Since we would like to opt for the Glenn, Dr. Balzer gave Ruth some medication in order to stabilize the pressure in her heart. She will be on this medication until our cardiologist, Dr. Goel, thinks her pressures are stable enough or even until the Glenn. We have a cardiology appointment tomorrow and we should know how her pressures are doing based on the blood test we took today. Unfortunately, we will have to have another heart cath before her next surgery in order to determine our next steps.
In terms of her thyroid, her levels are normal. She is still taking a small dosage of medication for her thyroid daily, but no other issues have arisen with it.
Now onto eating. Ruthie was starting to slack off in her eating abilities early last week. After her heart cath and since we have been home, her feedings have greatly picked back up and she is acting more like normal Ruth. We are thinking maybe the narrowing in the aorta was causing her to slack off or maybe it was just a coincidence. Either way, we are glad things are starting to get back to a somewhat normal pace.
We are looking forward to the holidays and I plan on posting more photos after Thanksgiving so I can do it all at once.

On a special note, please keep Hailey (4 months HLHS patient) in your prayers. She is having her Glenn procedure done tomorrow. Her parents are really hoping that the ECOMO does not have to be involved after this surgery like it was after the Norwood. She is a cutie and she unfortunately has not been able to go home since she was born. Please pray for her and her family. I can only imagine their struggle.

BIG BIG heart hugs!
Have a great thanksgiving!
I know we have so much to be thankful for this year.

Thank you to all who are praying and supporting our little girl.
We appreciate you all!

Love,
Ruthie, Josh and Laura

11.17.09

Catching up

Posted Nov 17, 2009 1:25pm

Well a lot has happened since our last post. Ruthie was hospitalized after a ER visit on Halloween night. Heart wise everything turned out fine. She did has a flook of nature with bacteria in blood that she cleared herself in 24 hours. The doctors were a bit confused. She was given some tamaflu since she was exposed to the swine flu. She also received anti-biotics for her blood and we were home by Wednesday November 4th.
The following week we had a few check ups. Ruth recieved some vaccines at Dr. Sitrons. Ruth will also start rsv injections soon. Dr. Sitron along with Dr. Goel think this injections will be helpful for keeping Ruth healthy. The next step was checking her thyroid by getting blood drawn. Dr. Hruz said her levels look normal and that we will continue on with one tablet a day. After Monday, we then went to Dr. Goel where Ruth had an echo. Her echo looked good and her o2 stats are still around 80. However, we were concerned with some puffiness around her eyes. Since the echo looked good Dr. Goel wanted to schedule a heart cath to check it all out and to help determine the cause of the puffiness.
So here we are, at Childrens doing pre-cath visits and testing. We come in tomorrow at 7 am to get things started. We all have mixed feelings about this cath. We are nervous about her being put under and having to go through another procedure. With any procedure comes risk. We are also excited for the cath in that we learn more about her heart and why she is puffy. We will also be able to get an estimate of when her Glen will take place. Oh, so many emotions. However, God doesn't give us more than we can handle. So we are putting our faith in Him. Please pray for Ruthie tomorrow. We will update as much as possible.

10.22.09

Progression

Posted Oct 22, 2009 6:11am

Once again, sorry we haven't posted in a while. Between feedings, diaper changes and doctor appointments it has been a little crazy. Howeve, things are slowing down se and doctor appointments are going well. According to the cardiologist office, Ruth is weighing in at 7 Lbs and 8.5 ozs. She is aso now 21 3/4 inches long. So she is working right along with everything. She is eating right by taking 2.5-3 ozsevery 3 hours or so. Her color is looking good and her pulse ox is anywhere between 81-86. She also has been taken off her LASIK medicine and is now on a lower dosage of her hypo- thyroid meds. She is truely in miracle form. We are so proud and amazed daily.

Currently we are working on holding our head up better and mastering tummy time. Ruth is really getting into mobiles and her car seat toy that lights up and plays music. It is so wonderful to see her interact with objects. She is also starting to understand where voices are coming from and is showing this by following sounds with her eyes. Ruthie is beginning to meet a few more family members here and there. We are phasing people in slowly so jher little imune system can handle any outside germs. With that being said we are also limiting contact by non healthy or slightly sick people. Some may call it over board but we are not risking her health for a meet and greet.

All and all Ruth is doing marvelous. We are so greatful for all the prayers and positive thinking. We truely believe that God has a plan and we are trying our best to follow this plan. Thank you for your nonstop support and prayers. Without it, we would be lost. We are still trying to wrap our heads around the next steps, but one day at a time.

Big heart hugs!
Ruthie, Josh and Laura
xoxo

10.05.09

Its Fall!

Posted Oct 5, 2009 1:37pm

Sorry we haven't posted in a while. Everything has been going great. Ruthie is becoming a pro- bottle eater. She is now crying (every three hours or so) when she is hungry and taking anywhere from 1.5 - 2.5 oz at each feeding. We are really moving right along. She is weighing in somewhere between 6 lbs 8 oz to 6 lbs and 10oz, depending on which doctor we are at. She is now 20 inches tall and growing more and more hair each day. She is doing so well. It's amazing.
We had a few rough nights over the past week. Ruth was extremely cranky for a few nights. Last Sunday (9/27) at 2:30 am we went to the ER because she seemed to be breathing funny. After a all night ER visit and being admitted until Monday, we found out that nothing was going on. Her stats read great and her echo was fine. We were just dealing with a cranky 6 week old baby. But, no harm, no foul. We felt like we needed to know for sure that everything was okay.
We had a few more cranky nights later in the week. Nothing unbearable just a little different from the first few weeks home. But all and all we think things are straightening out and everyone is doing well.
Thanks again for all the advice and support. The staff at SLCH and our friends and family have been so compassionate and wonderful. We are truely blessed to have you in our lifes.

9.23.09

We are negative which is a positive.

Posted Sep 23, 2009 3:46pm

On Monday, Ruthie went to Childrens to complete a sweat test. During this test they put sensorson her leg and then stimulated those sensors to encourage her body to sweat. When checking for cystic fibrosis, you colllect sweat to see what the salt levels tell you. Too high and you have CF. After they stimulated her leg they then placed gauze and plastic wrap around the area to collect the sweat. After 30 minutes, we re- entered the room and the gauze was sent to the lab. Dr. Sitron called a few hours later to inform us that yes she still has a heart defect and yes she still has hypothyroidism but no she does not have CF. What a relief.
Later that day, Ruths cardiologist Dr. Goel told us that since she is eating well we can remove her Ng tube. So now she is eating all on her own and honestly doing great. It is so nice to be tube free.
Thank you for all the prayers. God clearly answers his people.

9.16.09

The results are in

Posted Sep 16, 2009 4:00pm

Ruthie has hypothyroidism. Basically, her thyroid is under- active or under- developed which means her body is not getting the right amount of hormones. So each day she will have to take a pill in order to stimulate her thyroids to produce the hormones they usually produce. This may only be temporary and her thyroids may kick in on their own by the age of 3. However, if that is not the case, then is is just a pill a day to keep things regular. Overall, this seems like a pretty easy deal. Once we figure out how much of the medicine she needs for her body, we are set. So we start taking medicine and then getting blood drawn once a month until we know the correct dosage.
When it comes to the newborn screening, which is how we found out about the thyroid issue, we still have one more hurdle to jump. Apparently Ruthie's screen for cystic fibrosis came back with a red flag. The cut off for normal on that test is 70 and her is at 72. So on Monday, we go to Children's to have a sweat test done to determine our next steps. The pediatrician, Dr. Sitron, does not think we should be too concerned. He said that the chances of her having a heart defect, a thyroid defect and cystic fibrosis is pretty low. But, we will see.
Please pray for Ruthie.
We trust in God and we know that He doesn't give you anymore than you can handle. I guess He knows that Ruth is a strong little girl and that she is ready to handle it all. We just hope that cystic fibrosis is not one of the things He wants us to handle.
Thank you for your support.

9.15.09

Newborn Screening

Posted Sep 15, 2009 2:30pm

Today we got a phone call from Dr. Sitron, Ruth's pediatrician, saying that her newborn screening came back with red flag. Apparently there is an issue with her thyroids. We are going into Children's for further testing with the Endocrinologist. We know that this is not near as big as HLHS, but it is still a bit concerning. According to recent studies, one in 4000 babies are born with a thyroid issue or problem. So, Ruthie is really playing her odds.
So wish us luck and please keep the prayers flowing. She is such a stong and precious little girl. We know that God will protect her and that He will give us strength to endure it all. It is just another page in the book of Ruth.

9.11.09

Getting pretty comfy

Posted Sep 11, 2009 10:23pm

Ruthie is home now and doing great. We are working on taking the bottle by mouth. She takes about 1 oz (sometimes more) by mouth and then the rest (1.5 oz) by feeding tube every 4 hours. She is doing really well. We hope to have her off the feeding tube as soon as she is ready to take it all by bottle. Everything seems to be going good right now. She is adjusting to a more quiet living environment. No more nurses and doctors waking her every couple hours to unwrap her and check things out. No more alarms and other children crying. No more of mommy sleeping on a bench. We are really liking being home. It feels much more comfortable.
Ruthie had her first pediatric appointment today. She weighs 6lbs and 3oz (up 6 oz since birth) and is 20 inches long (up 2 inches from birth). Her development looks good and besides her special heart, she is healthy and normal. What a nice appointment. So relaxed.
We go back for a check up with the cardiologist on a Sept. 17th. So until then, we are just working on eating and getting use to the home life and my puppy Zoey. Zoey is still a bit confused with the crying noise and the whole baby thing, but in time we know they will be best friends.
Thank you so much for all the support and prayers. We know our journey is no where near over, but step one has been completed.
Thank Heaven for Little Girls.
Thank God for miracles.
and Thank you for all your advice and support. It means more then you will ever know.
We love you!
BIG BIG Heart hugs!
Ruthie, Laura, and Josh

9.9.09

Heading home

Posted Sep 9, 2009 8:34am

We are getting pretty anxious this morning. We know we are heading home but not sure when. Ruthie needs a hearing test and one final check up before we can go. I know it won't be too long now but we are definitely ready.

9.8.09

Starting to get to "normal": whatever that means.

Posted Sep 8, 2009 12:07pm

Yesterday Ruth said goodbye to her awesome CICU nurses and headed west (7 West that is). She is off of oxygen and a lot of her meds. She is starting to take some milk through a bottle and then the rest through her feeding tubes. All is going really well. We are able to hold her all the time and we are taking on the parent role. The doctors are going to discharge her tomorrow:) We are learning how to change her dressing, how to check the NG tube placement, how to feed and distribute meds. We are really excited to take her home tomorrow. It is an amazing feeling. We can't wait. We are so grateful for the love and support. Prayers are answered and clearly God works miracles. Thank you to everyone. It is your prayers that pulled Ruthie and our family through this all. Much love and thanks

No More Breathing Tubes

Posted Sep 5, 2009 1:07pm

Ruthie's breathing tube came out a little before 10 am this morning. She is doing much better than last time. She has 25% oxygen going through her nose right now. She is taking a pacifer now and doing quiet well with it. We got to hold her again today for a few minutes. We are just letting her rest up now so we can hold her more later. So far so good today but we are still hesistant to be excited since last Saturday did not go as well. Hopeful and prayerful today, but every bit of proud.

16 days later, we got to hold her!

We are officially parents.

Posted Sep 3, 2009 8:56pm

Today was pretty much another quiet day. Her vent rate went down from 14 yesterday to 10 today. They are making small adjustments to get her ready to lose the breathing tube this weekend. We did have a first today. Both of us got to hold Ruthie for the very first time this afternoon. It was every bit of amazing not only for us but for Ruth as well. She was fussy and awful sassy but then her nurse handed her to me and she instantly stopped crying and feel asleep. How precious. Dad got to hold her after me. He was able to get her to wake up and she just gazed around in his arms. It was adorable. So all and all a great day. Her stats read well all day and she was pretty content. Being able to hold her was the iceing on the cake:) We feel the parent baby bond now.

9.2.09

Pretty quiet

Posted Sep 2, 2009 9:11am

Ruthie is staying pretty quiet. She is doing great with everything this world has thrown at her this far. She is still receiving some potassium periodically. Today we are working on weening down the vent slowly. They are taking small baby steps to help her deal with the adjustment. Dr. Huddleson will be placing a cut down PIC line in Ruthie's arm today as well. The PIC line gives central access to her veins and is a more long term access for meds and so forth. The cut down PIC is inserted through surgery and sowen into a good blood vessel. It is not an extensive surgery but a surgery none the less. Besides the PIC line surgery, we are looking forward to a relaxing day. We are really amazed at how much she handles. We know that it is purely through God's help and guidance that Ruthie continues to be so strong. We are truely blessed.

9.1.09

The breathing tube dance

Posted Sep 1, 2009 2:17pm

Today Ruthie started the day with just having the vent as back up. What a victory!! However that only lasted six hours. She is now back on a low vent setting because she was having an irregular heart rate. It is just a dance: two steps forward, one step back. They gave her vitamin k (potassium) in hopes of making her heart rate stable. Since they gave it to her she has had good stars. So it's just a waiting game. She is taken breast mill very well and she is gaining weight. She is also not very swollen today. So far it's been an alright day. Please continue the constant prayers for her strength and our patience. We know she will tell us when she is ready.

8.30.09

Back to the tube life

Posted Aug 30, 2009 12:02pm

Ruthie is doing much better today. Her stats are back where they should be now. She is still on her vent with the breathing tube. Over night everything went fine. She is off the bp meds and her vent settings are at 30 percent which is only 9 percent more than room air. They took out her RA line and her fully cath this morning. They also put in a feeding tube so she will start on breast milk again today. We are looking forward to a pretty relaxing day.

Too close of a call

Breathing Tubes

Posted Aug 29, 2009 6:18pm

Well Ruthie had quite an eventful day today. She started the morning by getting her breathing tube taken out around 10am. She did okay for about an hour or so but her O2 stats did not stay stable. Around 12 they decided to give her a little more stabilty by putting her on oxygen through the nose. Her stats however did not respond the way we wanted with this move. At 2:50 her heart rate declined and her O2s became really low. Within minutes the docs were calling for a crash cart. As they worked on raising her heart rate up from 80 and her O2s up from the lower 30s and at one point 20s, we watched from across the hall. It is so hard watching and not being able to help or even know what would happen. Eventually they were able to reinsert the breathing tube and get the vent up and running. Her stats are now stable and she is resting. Apparently Ruthie was not ready for the vent to be gone. The settings on her vent are much lower already, but she was not strong enough to do it all alone yet. We know set backs happen, but watching her go down hill is not easy. They are planning on letting her rest for a bit and removing her RA line (since it is cracked) tomorrow. They are now going to make her prove she is ready before they take her off next time. All and all we are very thankful to God for letting Ruthie stay. If the nurse had not been in the room prior to this episode we may have lost her. Thank you God and please keep her in your prayers.

8.28.09

Ten days old.

Posted Aug 28, 2009 12:47pm

Today Ruthie is ten days old. She is soon quite well and everything is moving right along. Her chest is nicely closed now and her stats have stabilized. Today they are weening her down on meds and her ventilator. She is moving and stating awake more now. They are giving her pedialite currently and they hope to give her breast milk today at noon. We are really excited especially since we have a lot on reserve. As long as she continues to do well they want to take her off the vent tomorrow morning which means she will start crying soon. We never thought we would be so happy to hear a crying baby but we can't wait. They hope to have the line out of her heart early next week which means holding her is getting close. We are extremely proud of her progress and thankful to God and our supporters. How blessed are we and is Ruthie.

8.27.09

Chest Closure Today

Posted Aug 27, 2009 10:25am

Ruth will have her chest closed this afternoon. It is really exciting yet nerve racking at the same time. Any time she has to be away from us and in surgery is scary. Howver we know God will guide the surgeons and that He will keep her strong. She is our fiesty little girl. All of her stats look good and she is progressing as planned. She is holding her own temp now too. We know our HLHS journey is still a long one but this far smooth sailing.

8.26.09 Part 2

Ruthie: Our miracle

Posted Aug 26, 2009 9:52pm

Everything is going well today. Her swelling has gone down a good amount and she is breathing more on her own. As long as she continues on this path the surgeron hopes to close her chest tomorrow. We are really impressed with her strength and courage.

8.26.09

Day Two Recovery

Posted Aug 26, 2009 12:56pm

Last night went well for Ruthie. They increased her oxygen percent to 50 from 34 to help with her O2 stats. Otherwise they are starting to ween her down on a few meds and the ventalitor. She is breathing some on her own. This morning she was wide awake and trying to move around a bit. It was a great way to start our morning. However they want to make sure she is comfortable so they gave her some sedation meds. Right now she is napping and resting from her big day yesterday. Ruthie is doing good. She is swollen some today but that is expected after open heart surgery. Thank you to everyone for your support and prayers. Ruthie is very lucky to have so many people in her life. We would not be able to get through this without you all

8.25.09 Recovery

Recovery

Posted Aug 25, 2009 9:17pm

Ruthie is doing okay right now. She is back in her CICU home. The doctors and the nurses are just adjusting her medicines to keep her stable. There has not been any major changes for her which is good. We are staying positive yet prayerful. So far so good.

8.25.08

Surgery

Posted Aug 25, 2009 1:42pm

So the surgery is going great. We had another update and everything is going as planned They are able to take her off the bypass machine which means her heart is working:) We are thrilled. We are just waiting on the surgeon to come out and give us an overview of the surgery and then she will be in recovery for about an hour. We get to see our little girl soon. We can't wait. Thank you to everyone for your love, support and prayers. Miracles do happen and we have one named Ruth Elizabeth.

8.25.09 Surgery Day

Norwood Surgery

Posted Aug 25, 2009 10:20am

Well yesterday was a rougher day. She was trying too darn hard to breathe on her own, so they had to put her back on muscle relaxers. It was a bit hard to take since she was off of them for a day or two. However, we were able to give her kisses before she went back under. Last night, while we were saying our nightly prayer with Ruthie, opened her eyes to see us even though she was suppose to be sedated. It was wonderful to see her gorgeous eyes. It was as if she saying, "Mom and Dad, I am okay. Sleep well."
Over night last night went well. We got back to Children's at 6:15 am and we spent some time with her before her big surgery. About 15 minutes before they took her to surgery, she opened her eyes again (even though she was sedated). It was quite nice to be able to see her eyes one more time before she was off to surgery.
We just got updated that she is under now and that everything is going great. We should be able to hear more in about an hour.
Please keep praying for her today. She has a rough next 48 hours ahead of her. Pray for her strength and for her doctors guidance and wisdom.
We grately appreciate your support and love

8.22.09

What happens next?!?

Posted Aug 22, 2009 9:25am

Ruthie has been put on muscle relaxers and sedated as on Thursday evening. Her o2 stats were a bit too high for her type of heart. We thought 100 percent was good but since she has a special heart she needs special numbers for those stats. The docs thought that putting her out was the best way to be in control of her breathing. She is trying to be an over acheiver and she is trying to do too much by herself. She is still doing better then expected. The docs hope to start her 3 stage surgeries early next week. They are shooting for Monday but should know today for sure. Ruth has already pulled through some crazy serious stuff but she has only just begun this journey. Thank you all for your support, prayers and advice. Clearly. God does answer prayers. We are placing our trust in Him and we know He will provide. Gods will be done. Please keep praying and thinking positive thoughts.

8.18.09

She is here

Posted Aug 18, 2009 8:39pm

At 9:59am Ruth Elizabeth was born via c section. Upon arrival she was transported to Childrens Cath Lab. Her first surgery to create a connection between the two atriums went awesomely well. She is 5 lbs & 13 oz and 18 inches long. She has made it through the first most intense surgery and we will know more about her lungs in the next few days. She is truely a miracle. Thank God for her survival and strength. Thank you all for you prayers and support. We are definitely not out of the woods yet but we have already made it through much. We love you all. Keep the faith and keep praying.

7.22.09

Planning out the Un-plannable

Posted Jul 22, 2009 5:53pm

We have two more doctor appointments this week.
Tomorrow we are heading to Barnes Jewish for an ultrasound to determine when we should schedule my c- section.
Then on Friday, we have a pre-natal echo so the cardiac pediatric surgeon can get a look at what all is going on inside of her special heart.
So hopefully by the end of the week we will know when the c-section will happen and what our next steps will be.

Next week we have another cardiologist appointment with our Dr. Goel from St. Johns and an OBGYN appointment with our original doctor Dr. McLaughlin.

Everyone is so wonderful and so hands on. We know God has placed us into the best and most caring hands out there. We have faith in our doctors and they have faith in our little girl.

So at this point, we are trying to plan what seems to be the un-plannable and the unthinkable.
We are taking it all in day by and day. Hoping for the best and mentally preparing ourselves for anything and everything. With God, everything is possible. We are just keeping our trust and faith in Him and we know that no matter what the outcome may be, that it is God's will and we will place our strength and courage in Him to be able to handle it.

7.21.09

Cardiologist Appointment Update

Posted Jul 21, 2009 3:47pm

Yesterday we received some heart breaking news. The PFO connection that we thought was restricted is actually non- existent. This means that outside of the womb there is no chance of survival without communication between the atrium. So our labor and delivery plan has changed significantly and Ruthie's survival rate has hit an ultimate low. We will need to have a planned c-section at Barnes Jewish compared to St. John's (our original hospital) so that the cardiac team can be ready to open up Ruthie's heart at Children's within a matter of minutes from birth. As soon as she is born, she will be in surgery to create a hole where the PFO connection should have been. This is a pretty intense procedure and with current stats, it does not seem favorable. However, without this surgery there is no chance for survival outside of the womb because blood flow would not happen appropriately. After this connection is opened, the doctors will then be checking her lungs to see if there is any damage caused by the non-existent connection. If there is severe lung damage, once again survival is very grim. However, if her little lungs are fine and they are able to create the hole they need in the heart, then the next step is to perform the 3 step surgeries and she would be able continue on as a regular HLHS patient.
It has been an intense two days. We are still hoping for the best, but in our minds we are also preparing ourselves for the worse case scenario. We ask purely for your prayers over the next couple weeks as we begin this new chapter to our HLHS journey. We know that we are not in control and that God will provide. It is just really hard not knowing what to expect and to what extent we should expect things.
We are not giving up on this little one and we know that she is willing to fight.
She has made her impression on this world from inside my womb, now we are waiting for her to make her impression on the outside.

6.19.09

Doctor's Appointment

Posted Jun 19, 2009 11:23am

Yesterday we went to Dr. Goel, the prenatal cardiologist, to do a follow ultrasound. Overall the appointment went well. There is no more fluid around her heart, which means less stress on this already complicated heart. So that is the good news. However, we did find out that the PFO connection is extremely restricted. At this point, this connection being very restricted is ok. Since it is restricted it is allowing blood flow, but not too much blood flow to the lungs. I mean it is not the best news, but it could have been completed gone or completed restricted which would have caused other major issues. We are just hoping that this connection does not become anymore restricted because that can lead to lung damage. Now when it comes to the lungs we are really unable to know what damage there is or what damage there could be to the lungs until after Ruthie is born. If the PFO connection becomes completely restricted and major damage is done to the lungs then there is little to no hope for survival since you cannot fix severely damaged lungs. Unfortunately, there are no tests that can check the lungs until after birth since the lungs are not used while she spends time in the womb.
We have another appointment on July 20th (34 weeks) to see how the PFO connection is developing and to determine our plan of action for labor and birth. We can not rule out being induced or having a c- section at this time.
Hopefully, everything continues to just get better and better and she just gets stronger each day so when it becomes her turn to fight she will be ready.

As my mom said yesterday, God answers prayers a day at a time.
So for today our prayer is that no matter what the circumstances are that we can handle i

Transfering from Carepages.com

Hanging in there

Posted May 19, 2009 12:57pm

The Prenatal Cardiologist said that we have nothing we can do at this point
except prepare ourselves emotional. Her little heart is still
pumping away and doing everything it possibly can to survive.
However, there is a little fluid around the heart that wasn't there
before. This is a bit discerning, but as long as her aurora
valve and miral valve continue to work and the PDA stays open the
fluid should not do anything. So lets keep praying that her heart, albeit small, keeps fighting and making it happen. Unfortunately we also found out that a cardiac transplant can not be 100% taken off the table yet. This condition is so rare and so complicated that we will not know much until she is born. The doctor reassured us that between him and the surgeons, they will look at every possibility. But due to her almost non-existent aurora valve and her small miral valve, repairing her heart through the 3 surgeries may not be an option. Once again though, we will not know much until she is actually here and they can examine her a little more in depth.
Either way, we are still keeping the hope alive for the best outcome for little Ruth. Little does she know that she is so loved and she hasn't met a soul.
We will venture on and take each day, one day, one hour, one moment at a time. There is nothing more or nothing less that we can do, but pray.

Thank you all for beginning this journey with us and for keeping Ruthie in your thoughts, prayers, and heart. We, Josh, Laura and Ruthie, appreciate you all.
God Bless!

Brand New Blogger Here

Hello Blogging World!
I am a brand new blogger. I never thought I would be into this blogging stuff but here I am. I have been blogging on carepages.com for a little bit now. Ever since I found out about Ruthie's heart condition, I have been posting information and updates about her. I feel as though Carepages.com was a great start for me and now I am ready to blog on my own.
I plan on transferring all the information we have posted on carepages onto this site so we can make it complete. It may take a while so until then, please be patient.
Okay, so what is the point of this blog?
I really want to have a live journal of Ruthie's life: her ups, her downs, her everything. I want to have it all documented so that one day, she can log onto the blog and look at how far she has come. Also, I have been reading (here and there) about how important writting down your feeling is for your mental health. A lot of parents or people who have gone through life changing events and times seem to find blogging as a nice release. I am willing to try it out, what could it hurt?
So, here we go! I am ready to start this adventure. Let's see if I can do it.