3 weeks old today!!

Yes, we have been in this joint for 21 days! But, well on our way of recovering. We were moved to the 15th floor yesterday. We now have our own private room with a pull out bed, bathroom/ shower, tv. We now can stay the night. Daddy was the first one to stay night with her last night. We also started bottle feeding again yesterday, a little at a time to get her belly used to eating again. Increasing the amount every couple of feeds. Whatever she doesn't take by mouth they give through her NG tube. But, she is doing well so far. No specific plans on how much longer we will be here. Think the goal is to teach us how to care for her so we will be prepared for home. She also must be feeding well.

Arm Bands/ Blood Clot Update

Day 19

Sweet Baby Girl

Looking like a normal baby again... Yeah!! Yesterday 4/27/09 we were diagnosed with a blood clot in our left leg. We have been telling people over and over again that her left leg was bigger than her right leg. No one listened of course. Been taking her blood pressure (BP) on L leg 116/58 (high for a baby). The docs were going to put her on some meds to decrease her BP, when I suggested taking BP on R leg (86/51). Good thing I spoke up. This led to an ultrasound, which led to diagnosing a blood clot... probably from cardiac cath 12 days before!! This will keep her on blood thinners ( Heparin, Asprin, or Lovenox) for probably 3 months to be followed by a Hematologist. One step forward, two steps back.

Today she was able to start feeding again!!! Yeah, it's been 10 days!! Unfortunately the docs felt starting off with feeding by NG tube was best option at first. Hopefully tomorrow we will be back on the bottle! We were supposed to move to 15th floor today, kinda like a stepdown unit... on our way out of this joint!! But, there were no rooms to go to today. Maybe tomorrow. Overall doing great though, I'm sure thanks to all those prayers out there. We are back to being able to hold her again, which she is loving (and we are too of course).

As you can see in the picture above the red arm band. These are specially made for support of Abigail. They are awesome!! Created by my wonderful friends at Women's Hospital Labor and Delivery. They say "Have a Heart for Baby Abigail" . They asked me to mention them in my blog. If anyone interested you can contact Megan Johnson via email and she can get them to you. megjohnsonrn@hotmail.com

Will keep the updates coming...

Once again I say thanks to you all!! I will never be able to thank you all enough... So many IOU's to fulfill.

Love ya all- Holly, the rest of the Roricks, and extended family

Update

Abigail is doing GREAT! Thanks to all the prayers, visitors, and support she is getting!! Thank You to you all... You have been a blessing to our family!! She is still in CVICU, hoping to get moved in next 1-2 days. She looks better everyday. Our breathing tube GONE! NG tube GONE! Femoral arterial line GONE! Chest tube GONE! She is on day 9 of her 10 day antibiotics and NPO (nothing to eat) NEC treatment... poor girl is starving. We can only soothe her with the paci. Was getting a little sugar water, but the mean nurse today said no. You can see in the picture a little of her incision under her arm. It extends about 2 more inches around the back. Apparently it is a painful incision because they go through the muscle. They give her morphine for pain, but makes her very sleepy. Her oxygen saturations are 81%-88%, who would have ever thought thats what they want it to be? Normal for any of us without a heart problem is in high 90's.

But, overall she is recovering well. She has so much love and support. Can't wait for you all to meet her. Thanks again to you all for your support!

My wonderful friends at Women's have created arm bands especially for Abigail's supporters. They are red and say "Have a heart for Baby Abigail". They are awesome. I will wear it proudly everyday!!

CVICU

Abigail has done well all day, remains very stable so far. She is still very sedated, but doing great the docs say. I thought she had too many things connected to her before. But as you can see we have many more, 14 things either in her or monitoring her. I thought I would list them below.
1. Cerebral Oximeter (in her forehead, monitoring brain oxygenation/cardiac output)
2. Nasogastric Tube (in her nose, to empty any contents out of her belly)
3. Endotraceal Tube (in her mouth, to breath for her while sedated)
4. Left arm PICC line ( to administer all her medications)
*Vasopressin ( to increase her blood pressure)
*Heparin ( a blood thinner)
*Calcium Gluconate ( not really sure what for)
5. Right arm PICC line (to draw labs and monitor CVP-central venous pressure)
6. Chest Tube on right side ( to drain any fluid or air in chest)
7. Foley catheter ( to drain and measure urine)
8. Femoral aterial line in right leg (to monitor blood pressure continuously, draw blood gases)
9. Pulse Oximeter on foot ( to monitor oxygenation in blood)
10. 5 Lead on chest ( to monitor heart rhythm continuously)
11. Temperature probe on abdomen (to regulate body temperature with warmer)
12. Temperature probe on sole of foot ( to monitor cardiac output)
13. Rectal temperature probe (for body temp)
14. Restraints on arms (guess in case we wake up and want to pull out our tubes)

And the incision is right under her right arm, covered with a dressing. Appears to be 1-2 in wide.

Crazy right!! Do some of you people out there who aren't in the medical field feel like you have just taken a cardiovascular course?

Well, I am glad to report that things are well at this time. We were unable to get a room at the Ronald McDonald House tonight, so Daddy is up with Abigail now watching her rest. I am home with Jackson who is going through quite a transition right now, not so easy for a two year old!!

I wanted to congratulate my sister,Haley (Aunt LeLe), who has been at Abigail and my side through this all. She will be graduating tomorrow from UTMB Nursing School!! Yeah!! Plans to pursue her career in Pediatrics, hopefully at TCH.

Sorry , I know this was a long one, but its good for me to get it all out. Going to try and get some rest and do it all over again tomorrow!!

Surgery Completed Successfully!

1115 am : Spoke with Doctor, Jeffery Heinle, surgery is done now. Everything went as planned. YEAH, Success! She is now in CVICU. They say that we will be able to see her in about 1 hour after they get her settled. They have stopped her Prostaglandins now and expect her PDA to close in next 24-48 hours, allowing shunt to work and somewhat regulate blood flow to lungs. Expect her to be intubated next 24-48 hours and to have many more tubes and wires. But glad to be able to report good news so far to you all.. Please don't stop the prayers!!

Holly

Surgery Update 04/23 1000 AM

They took our sweet baby Abigail to surgery about 0700 AM. They expected anesthesia preparation to take 1- 1/2 hours to put in tubes and lines in prior to the surgeons starting their procedure. Just got update from CV Surgery Charge Nurse at 10 am. They did incision under right arm (thoracotomy). Everything going well so far. They have made 1st connection of shunt and will start the second connection now. Plan for 1 1/2 hours more. When Surgery completed she will be transferred to CVICU (cardiovascular ICU) where she will be for a couple of days to a week or so before being transferred to another floor.
I just met another mother, Jessica, of a heart baby here in the waiting room. She is here with her 6 month old daughter, Autumn, who is here for her 2nd heart surgery (the Glenn Shunt, which is hopefully Abigail's next surgery). Her daughter has already had the BT Shunt, was here for about two weeks after that procedure and has been home since, growing well and strong. So what a great motivational story for us to hear while waiting through this first surgery. We will keep her in our prayers too and thank her for her inspiring words. She gave us a website to check out:
http://www.littlehearts.org/
http://www.itsmyheart.org/ is another website we have found based in Houston that has been helpful to us.

Will keep everyone updated as I can.. WE thank you all for your prayers and thoughts sent our way!!

Thanks Holly

Surgery Tomorrow

As of today the plan is that she will have surgery tomorrow morning (thursday) at 7am. Everyone please keep her in your thoughts that she stays strong and has a fast recovery.

Blalock- Taussig Shunt

The Blalock-Taussig procedure is a surgery in which a detour (shunt) is created from the aorta to the pulmonary artery. The surgery is performed on infants and young children who are born with a congenital heart defect that reduces the amount of oxygen-rich blood circulating in the body. The Blalock-Taussig procedure is performed as a temporary solution. In other words, it will improve the immediate signs and symptoms of the underlying heart defect, but it will not correct it. Other surgeries are usually necessary in the future to repair the defect itself.The surgery involves making an incision in the chest.

Surgery Update

A little update on Abigail.

Monday, April 20th- Our Necrotizing Entercolitis (NEC) is definitely improving. The repeat abdominal xrays are clear of any air in abdomen. yeah!! She had an episode of tachypnea (fast breathing) which lead to chest xray and CBG's (capillary blood gases) which both were fine. They're not really sure of cause. She received another blood transfusion today. Her Hgb and Hct were 11 and 30 something. The cardiologists would like her Hct to be around 50 prior to surgery. All her blood cultures have come back negative. Just enjoyed hanging out with her all day. She has tons of visitors everyday, lots of support and prayers sent her way.

Tuesday, April 21st- Well today during rounds they discussed that her surgery would probably be sometime Thursday or Friday this week. They are satisfied with her progress/ improvement from the NEC and feel that moving on with the surgery is the best option. I will update everyone with any further plans re: surgery as I receive the information. She was receiving another blood transfusion when I arrived today, otherwise no new news is always good news.
I wanted to thank all my friends and family for all their support and prayers. They are getting me through each day!

Hey Mommy & Daddy

I was talkin to Paw Paw Murph early this morning and he said he would help me write this blog. Mommy I do not know about you but boy was I ready to get out of those cramped conditions. It sure was nice an cozy for those 9 months but I like the conditions out here much better. Daddy thank you for helping out mommy all these months I know it was a joint effort to finally get me here. I want to thank aunt Lele for starting this blog. I would like everyone to know that I am here for a short while then I am headed home to be with my big brother Jackson. Jackson did his part over the last few months listening to me inside my Mom's belly. He threw a few jabs along the way to let me know who was in charge. I cannot wait to get home and spend more time with him. Now how lucky can a kid get having three sets of grandparents around who love me. Sure going to be nice at Christmas and Birthday's. I'm looking forward getting out of here to be able to play dress up with Aunt LeLe. As soon I get home and get my strength up my mommy can show me around the malls. I know I have seen a lot of you up in the hospital over the last 10 days. I want everyone to know that it's okay to come up and see me. I like company. I get to meet two nice nurses each and every day. So far they have all be very nice to me. My Mom & Dad have been so good to me but sometimes they need the support from other friends and relatives. I like to sleep a lot. I know I will surely be glad when they quit poking with needles all the time. Sometimes I think it hurts my mommy and daddy more than it does me. I cannot wait to get well and with help from all my family, friends and everyone who loves me I am going to get home soon.
Love you Mommy, Daddy & Jackson
Abigail Ruth Rorick

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Mommy's update on Abigail

So much to say... I'll try to keep it as brief as possible, but lots has happened to our sweet baby girl since her arrival. The first couple of days were pretty uneventful. They started an UVC (umbilical vein catheter) in her belly button to give her medications (prostaglandin E) to keep her PDA open in her heart (keep her blood oxygenated)... She did not require any extra oxygen. Only issues were with her blood sugars the first 24 hours, which quickly resolved, but left her heels all bruised up from being stuck .

Monday April 13th- I was discharged home from hospital. It was so hard to leave her here that evening . She was NICU III.

Tuesday, April 14th- . Today Abigail received an UAC (umbilical arterial catheter). This will measure her blood pressures continuously. They decreased her oral feeds (drinking breast milk by bottle) due to the new catheter. Started her on TPN and Lipids (supplemental nutrition) through UAC.

Wednesday, April 15th- Upon arrival to hospital today I was surprised to learn that they had stuck her, unsuccessfully, 4 times attempting placement of a PICC line (peripheral inserted central cath) in her hand. I was a little irritated walking into that, no warning, no consent needed I guess. But little to my knowledge at that this would be just the 1st of many surprises. Now they say she will need Interventional Radiology to place PICC line.

Thursday, April 16th- She was tenatively scheduled to go for cardiac catherization today sometime after lunch. To my surprise I was awoken at 7 am to tell me they were planning to take her to cath lab asap. So rushing to get to hospital I was then called by 3 MD's trying to obtain consent over the phone to do the procedure. I then hurried to hospital, but they had taken her back for catherization before I arrived. Very upsetting not to see her before a big procedure. She was intubated (breathing tube) for the procedure which lasted about an hour. She was extubated (breathing tube removed) right away. We were later informed of the results: Hypoplastic Right Heart (very small right ventrical) which we knew about ahead of time. Her case is considered very severe. Also, Right Coronary Atresia, and Pulmonary Atresia. The Coronary Atresia is what we were hoping not to hear. They also spoke of possibility of needing a heart transplant. They plan to talk more about her case further with all the cardiac docs and surgeons to discuss further plan of care. They took out her UAC (umbilical aterial line) this afternoon. This was a rough day for us all. Me and Nathan stayed at the Ronald McDonald house that night.

Friday, April 17th- We were up bright and early. She was scheduled for PICC line today at 9 am. They had kept her NPO (nothing to eat by mouth) since midnight before. For second day in a row, she was intubated for her procedure. Interventional Radiology placed PICC line without difficulties. She came back to NICU extubated. We spoke with cardiologist Dr. Price today re: her further care. They plan to do 1st surgery (BT shunt) next week . Will decide further plan of care after then. They were concerned with some yellow secretions noted on end of ET tube (endotracheal tube)..... Now concerned with infection... Labs came back negative for any sign of infection. She did not eat well today. I think they just wear her out with all the different procedures and poking that she gets too tired to eat. Threatening a NG tube (nasogastric tube) to feed her. They stopped her TPN and Lipids today.

Saturday, April 18th- We came into the NICU this morning to find her with an NG(nasogastric) tube in. The nurse said she hadn't eaten very well during the night and was tachypnic (fast breathing). I discovered a bloody stool when I went to change her diaper. This led to the diagnosis of NEC (necrtotizing enterocolitis), bacteria in the intestines. This was not a good addition to the list of her problems. This diagnosis led her to get a new IV in her other arm. She also has been started on antibiotics for the next 10 days, and wont be able to eat for a week. The nurse took out her NG tube and put in another tube down her throat into her stomach that is suctioning everything out. She doesn't like not eating very much. NEC is also going to delay her surgery until it is resolved.But, Were still like to make her look cute, with bows, socks and hats.:)

First Blog by LeLe

Hey guys this is Aunt LeLe (Haley) giving an update of Abigail Ruth. We wanted to create this blog spot so all of our friends and family can see what's going on with baby Abigail. Everyone is always wanting to know how she is doing, so this is a way to let you all see and even make comments. We knew before she was going to be born that she would have a congenital heart defect, called Hypoplastic Right Heart Syndrome, which is pretty rare. Holly saw several different doctors, geneticists and cardiologists to watch over the baby in utero. They said that she would probably have three open heart surgeries to correct this defect, one at 7 days old, 3 months and then 3-4 years old. Holly had a c-section at St. Luke's on Thursday, April 9th at 0819 AM... and there she was...beautiful baby Abigail! Weighing 6lbs and 7oz and 18inches long. Doctors expected her to need oxygen and maybe need a ventilator after birth, but NO she was a fighter, and didn't need any of that! After stabilizing her, she was sent over to Texas Children's Hospital in the NICU. This is where all her doctors and surgeons are, and where she will receive her surgeries.

Our family has gotten so much support for her, just wanted to thank you all! Keep praying for our little fighter!