Abigails Home

Sorry a little late on this post, but Abigail cam home last Monday the 21st. We are so glad to have our whole family home. Things are going pretty good, incision healing. Still struggling with her eating, thats really been our only issue since coming home... but hey, isn't that always her issue. She went to peidatrician yesterday to just check in, nothing to report. She was supposed to have a cardiology appt today, but since she is doing well and their schedule is too full, they have moved it to next week.
So life still remains busy... two working parents, juggling Abigail from one "sitter" to the next, a 2 yr old, making bottles, giving meds twice a day, little sleep, feeding during the night and all the normal things of a household! Trying to get through each day is a challenge in its self! But hey, thats life right!! We are hanging in there!

Abigail is doing GREAT! Today they took out her NG tube and IV, so she no longer has any tubes going in her anymore!! She is eating well, smiling again, and seems to be comfortable. She had a few couple of really bad days (Wednesday and Thursday- probably the worst of them all), but I am so relieved to say we are over that hump. The only problem is that her hair is falling out, like in chunks. I have heard that anesthesia can cause hair loss and have heard that it can just be stress from the surgery. Either way... poor baby girl is balding! Thank goodness for hair bows!!

The doctors rounded today and said they are pleased with her progress. She will have an ECHO of her heart on Monday, and if all checks out then they will let her go home!! Woo Hoo!!

I am so thrilled to be able to update with such great news. We are looking forward to going home. Aunt Patsy hasn't left Abigails room since she arrived on Wednesday. She has been a great help during these difficult times.

I can't thank you all enough for the support and prayers sent our way these last 5 months. It is so great to know I have such a large extended family.

We've graduated...

Yes... we moved from CVICU down to the 15th Cardiology floor. Yeah!! Abigail is doing good. She seems very depressed and sad. My heart hurts for hers. She has been through so much in such a short 5 month period. She has had 100's of sticks, 4 PICC lines, 2 heart surgeries (1 was open heart and she was on bypass), 3 chest tubes, probably 10 echos, 20 xrays, about 250 shots in legs and arms from Lovenox shots, NG tubes........and so on. She has spent 110 days in hospital, and only 49 at home. Most of us will never experience this much in our entire lives!
I am enjoying being back on 15, one step forward to home. We have our own room, I have my own bed and bathroom.... unlike in CVICU there is only a chair, not a recliner or anything with cushions, just a chair. I am enjoying being able to hold her again. She seems to be resting peacefully in my arms right now. I hope that we will both sleep well tonight.
We are looking forward to the arrival of great Aunt Patsy from Washington state tomorrow. She is coming to visit and help us out for about 11 days

Day 4 after surgery...

Abigail is doing great! She is much more alert and awake today, although she does seem sad.... I'm sure she is just uncomfortable, or maybe she just misses dressing up with cute clothes and big bows, or just upset all her hair is falling out (IDK why). They say that they suspect after the Glenn surgery that the babies suffer headaches for first couple of days due to change in blood flow. They are now giving her scheduled Toradol for pain, and Morphine as needed. Everything has gone well with extubation/ and breathing on her own. They have removed most of her tubes/lines/catheters. They plan to remove her LA line going into her heart sometime later today. Once that line is out she will only be left with one IV going into her right femoral area and we will finally get to hold her again! I can't wait and I'm sure she could use a little more luvin' on. We also expect to be moved back to the Cardiology floor (15) once that line is out. Her incision looks good, her vitals are stable. We are right on track now! Yeah!!!.... finally. What a strong little girl!

The ENT doc came by yesterday afternoon. They looked at vocal cords. Said that the right vocal cord moving well, and the left vocal cord is moving slightly. She doesn't expect any permanent damage. Will heal with time. And she gave her the OK to start trying to feed by mouth. Still not much sound coming out when she tries to cry, but she will get there.

Our family thanks everyone for all the prayers and love for Abigail!!

Making Progress....

So happy to have some positives to write about. Woo Hoo!
So they took both of her chest tubes out today which is good. Her AM chest xray was good after removing them. Removed her pacing wires from chest. And they just extubated (removed breathing tube) her about 10:10 am. She seems to be resting comfortably, shows no signs of distress or difficulty breathing at this time. She does have a little nasal cannula delivering supplemental O2 through her nose. Her oxygen saturations at at 89% right now. They plan to remove the central line in her neck today. Her urine output is good (getting lasix 3x day). Blood pressures a little high (getting Enalapril 2x day and PRN Hydralazine). They plan to have ENT doc evaluate her today or tomorrow re: vocal cord damage. I suspect there will be damage. They say "ususally" it is temporary. Lets hope for that!!

Well, I am just glad to be reporting some good news and we are taking steps forward towards recovery! Keep praying for my sweet Angel!!

2nd day Post-OP

.... Well after 12 hours yesterday of deep retractions, labored/ difficulty breathing, attempt at CPAP, many respiratory treatments, chest percussion therapy, steriods... and so on... They finally decided to reintubate her. (Put the breathing tube back in to breathe for her). Poor Abigail, I watched her work very hard all day at breathing. They "think" difficulty is due to swelling from intubation. So plan now is to keep her intubated, probably till tomorrow AM, give steroids to reduce swelling, and keep her sedated. They have been giving her BP meds, pain meds, antibiotics, steroids, sedatives, diuretics... and probably some more that I haven't listed. There is 9 IV infusion pumps going right now... some are keeping the many lines into her open.... but 9, OMG!
Abigail woke up yesterday evening for about 5 min. She was looking around, responding to voices, grasping my finger... the highlight of my day...until they gave her more drugs to sedate her.
One of my big concerns is her vocal cords/ nerves...possible damage cause from surgery. She has not cried, moaned, made any noises since surgery. The docs say this is always a possibility, usually damage is temporary. They will have an evaluation done by an ENT. They look at vocal cords and swallowing abilities. Oh, what I would do to hear her cry right now.
I guess that sums it up for now.... keep her in your prayers!

AM update- post surgery

So Abigail had a good night. I had a friend, Angela (mother of another HRHS kid), offer to stay night with her so we could get a good nights rest at home. We thank her so much for doing this, she is a great supporter and very knowledgeable of whats going on. She sat at her bedside throughout the night. Abigail was extubated (breathing tube removed) this AM, so now breathing on her own with a little O2 going into her nose. She is having some labored (difficulty) breathing (retractions). Her chest xray was good, suspect that just some swelling from breathing tube. She has been given breathing treatments and steriods to decrease any swelling. They are medicating her well with morphine and versed to keep her comfortable, she has had her eyes closed most of the AM. She does move her arms and legs a little, seems a little restless. Her platelets have increased (in the 200s).Her face is a little puffy, which is expected. They have now decided to try her on CPAP to assist her with breathing, to try to decrease the work she is having to do on her own. CPAP (Continuous Positive Airway Pressure) just "assists" her, forces extra O2 into her lungs.

Abigail's 2nd Surgery completed!

We are in CVICU now with Abigail. The surgery was done about 4pm. She is stable, but still very sedated. Dr. Heinle did Abigail's surgery today. They were able to place her new shunt (Glenn Shunt), remove her old shunt (BT shunt), and open her PFO
(patent foramen ovale)-allowing blood to flow from the right atrium to the left atrium (before there was restricted blood flow between the two, allowing too much blood to back up into body). No complications during surgery. She has many tubes hooked up to her right now.... I will give a quick rundown (best I can)
1. NG tube (feeding tube)
2. ET tube (endotracheal tube) down her nose for breathing
3. Central Line (right side of neck)- measuring pulmonary arterial pressure
4. 2 chest tubes
5. pacing wires (if needed)
6. L wrist arterial line (measure blood pressure)
7. L atrial line coming from incision site area (left atrial pressure)
8. IV in left foot
9. foley cath
10. pulse oximeter
11. Right femoral central line
12. Temperature probes (rectal/ and on skin)

Meds: Nitroglycerin, Albumin, Morphine, Ancef, Milrinone.
Her PLT (platelets) are a little low =76... about to infuse some Platelets.
They plan for her to be in CVICU for 2-5 days. Hope for her to be extubated in next 1-2 days.

Thats about it for now, I guess. Thank you all for your thoughts and prayers, but please keep them coming.

Today, Surgery....

Well they took her back at 0830. They anticipated 1st hour to be just getting all the appropriate lines (IV's, etc) and anesthesia started. They came with the 1st report around 1030. They said all the line access needed had been established, and things well with anesth. That the incision down her chest had just been made. They anticipate that the actually surgery from incision point will be 5-7 hours. They will intend to do the Glenn Shunt and remove the old BT shunt. These 2 things I know for sure. There will be many other decisions/ possible procedures made once they are inside and are able to evaluate the heart up close.
The 2nd update was around 1245. They stated she was on bypass machine, things going smoothly. That the doctor was doing a muscle resection of the right ventricle (" due to overgrowth").... don't ask what that means.... cause I really don't know what that is all about.
Basically the "charge nurse" must go from room to room trying to get and idea of what is going on. She is the one who comes to us with a report. Really not knowing much more than the basics. So not a great resource person for any questions.

thats about it for now. Lots of family here for support and I know there are many of you out there praying for our girl. Thanks .... will keep you updated

Surgery on for Tomorrow!

Surgery is set for tomorrow, September 11th. Once again they kind of sprung this on us today, last minute kind of thing. Surgery is expected to last 6 hours long. They usually give us hourly updates so if anyone out there is reading I will try to update. Please say a prayer that everything will go smoothly, no complications, and she will come out stronger!!

No surgery today

Well as we thought might happen, the surgery is off for today. The kid that was originally scheduled today went on with his/her surgery. We are still scheduled for Monday the 14th. Once again, if a pot becomes available before then she could go sooner. There is always a chance she will get bumped for whatever reason on Monday. We will keep you all posted

Eve of the Glenn or Worry for Nothing

Tonight we anxiously await what tomorrow morning may bring. The child who is scheduled for the first surgery tomorrow morning has been ill, so if he is not in shape for surgery, Abigail will have her Glenn procedure. The Glenn, as you may or may not remember, is the second in a series of three opereations to get blood to Abigail's lungs. If the other kid is well, we will have spent all night preparing for nothing. So it goes with all of this. Hurry up and wait. Please keep Abigail in your thoughts and prayers tomorrow. It maybe a very big day for her. Thanks for all your support.

Surgery scheduled for 9/17

Picture of HRHS (Hypoplastic Right Heart) with Pulmonary Atresia

(Abigail's heart condition)

Picture of the Glenn Shunt Procedure

Well we received the news yesterday that they would rather do her next surgery (the Glenn Shunt) sooner than later. So the BIG day is planned for Sept 17th. As they have told us many times before, nothing is set in stone.... if for some reason it becomes more urgent they will do it sooner. Or if something more urgent comes up for someone else she could get bumped. They have also talked about enlarging some valve (not sure which one, cause they really haven't said) with the next surgery also. They think too much blood is accumulating in the right atrium and it is kind of backing up, too much blood flow to the liver and bowel. They think that this affecting her appetite which= her poor eating habits and difficulty gaining weight. They placed a NG (nasogastric/ feeding tube) down her nose last night. Anything she doesnt eat by the bottle will go down that. Hoping to "bulk" her up before surgery. I guess that means for 3 wks... and she has already pulled it out once. But doing well in hospital. Gained weight today, yeah!

Just a copy and paste of the Glenn Shunt Proceure (which is done open heart) and description of HRHS....ope this helps explain stuff.

Glenn shunt: A surgical operation for children born with cyanotic heart disease ("blue babies"), in which a large vein (the superior vena cava) is anastomosed (connected) to the right pulmonary artery so that blood bypasses the malformed right chambers of the heart and is shunted directly into the lungs to be oxygenated.

What is hypoplastic right heart syndrome (HRHS)?

Hypoplastic Right Heart Syndrome (HRHS) is a condition that is even more rare than Hypoplastic Left Heart Syndrome (HLHS). HRHS refers to the underdevelopment of the right side structures of the heart, which means that the chambers, valves and related blood vessels on the right side of the heart are malformed. This malformation involves the pulmonary valve atresia which has not formed, a very small right ventricle, a small tricuspid valve and a small hypoplastic pulmonary artery. As the ventricle has failed to grow and develop the ventricles muscle structure is poor, so additional problems are encountered as the heart attempts to pump blood to the pulmonary valve for transfer to the lungs. The proper amount of blood pumped from the right atrium is not sufficient and this causes the blood to be not pumped efficiently to the lungs.

Main Problem:
Pulmonary valve atresia which is absent is a valve that normally opens and closes to let blood flow to the pulmonary artery.

Secondary Problems
A very small (hypoplastic) right ventricle is the lower chamber which normally pumps blood to the lungs,
A small tricuspid valve which is the valve that allows blood to flow into the right ventricle
A small (hypoplastic) pulmonary artery.
The blood flow into the coronary arteries may be abnormal causing damage to the heart muscle

Post Cardiac Cath/ Hospitalization

Just thought I would update you all on Abigail's status.
So, Abigails cardiac catherization went great. Dr. Matthew Crystal was her interventional cardiologist. He became our hero. In the previous cath they had seen that her Right coronary arterty was closed off, not making the connection needed to supply blood flow to her heart muscle. Increasing her risk of sudden complications. During the cath on Thursday, August 20th, Dr. Crystal said that her right coronary artery is open and the connection is made to her heart. That is WONDERFUL news!! It was unexpected news, but we were excited to get it. Otherwise they did not report that there were any other new changes or problems with the heart. We did have to stay over night, but was discharged home on Friday AM.

Abigail remained very sleepy throughout the day on Friday from the anesthesia. Saturday she became extra fussy and was not eating well. I called Cardiology to report this, they requested us to go to the ER at TCH. So we spent about 5 hours for Abigail to poop, eat, and get an EKG before we were discharged home.

The next couple of days she continued to be a poor eater, she was losing weight, and continued being fussy. We were sent back to the ER on Tuesday afternoon to be re-admitted back to the cardiology floor, where we are at this time.

So, the update since arrival....
Had a cardiac echocardiogram on Wed...- they say no significant changes noted, which is a good thing.
All the lab work they have done has been fine.
After talking to the docs today in rounds, they are concerned with her poor feeding and weight loss, really having no explanation to why. They said they will give her through the weekend to improve before trying more extraordinary methods . They did mention nasogastric tube (NG tube through nose) for feeds possibly if she doesn't get better. Trust me, that I will fight against that one. But the goal in mind.... gain weight, be a chunky little girl for her next surgery, to which they seem to think the bigger, the better, the healthier= better recovery. I anticipate the next surery in the next month, maybe two.

I do think she is eating better since admission and is less fussy, overall very happy. She has lost weight in the last week.

Abigail did have an ultrasound of her blood clot last week. I met with the hematologists today. After 4 months of twice a day Lovenox shots.... there is no change or decrease in the clot. So the plan with that.... stop the Lovenox. I'm so glad Abigail will no longer have to go thru the shots everyday. She will just probably always have the clot. They will continue to follow her care.

So thats about it for now. I will try to keep you all updated since we are stuck back in this prison.

Cardiac Cath Tomorrow

Things are going good for us at home right now... been home for 3 weeks now! Yeah!! Abigail is eating better, gaining weight (11 lbs 6 oz).

Today she had a follow up ultrasound for her blood clot, no news on that yet. Have appt next week for results, along with the FEARED lovenox level. I expect the blood clot to still be there. There is a chance it will never go away.

TOMORROW... another BIG day for Abigail. She is having her 2nd Cardiac Cath done. This is required before the 2nd surgery. I think they measure the pressures in the heart and just look at the anatomy of the heart to be well prepared for surgery #2. Still no plans for that at this point, don't really know what will be the deciding factor. The bigger she is the better, so a few more months at home would be great!!

Thanks again to all of the Abigail supporters out there. Glad to have you in our lives!!

DISCHARGE PLANNED FOR TUES JULY 28TH

We are on track to be going home on Tuesday,YEAH!! We are on day 40 of 43.

Abigail will be 110 days old on Tuesday... she will have spent 87 of those 110 days in the hospital and only 23 at home.

Sorry to not update the blog more frequently, but not too much to say. Things are going well. Abigail weighs 10 lb 5 oz as of this AM. She is still having difficulties eating well. One day is good, the next not so great. We gain weight, then we lose. WE get in trouble frequently for that. But I sure do try hard everyday to make her eat.

Health update: So this week... Abigail had a cardiac echo: results were fine. She had another doppler/ ultrasound of her blood clot. 3 months of lovenox shots twice a day and the blood clot is still there, no bigger, no smaller. So they plan to continue the Lovenox for another month and then re-evaluate. They say that sometimes the clots never go away.

We plan to go home on the Lovenox twice a day, Enalapril (blood pressure med) twice a day, Asprin once a day, Vitamin once a day, and Corn Oil ( yeah, gross like veggie oil, for extra calories) once a day.

Plan for next surgery: No specific day planned, they " think" it will be sometime around 5 or 6 months old. It just depends on her. We hope to get a little time at home.

Family report: I have gone back to work as much as I can, hard to juggle sitters, taking and picking up Jack, Nathan's work (Financial Advisor: for any of you people that NEED "life insurance, college savings plans or your kids, help with investments... he is only one phone call away!!)

Jackson is doing great. He has spent many nights and days with me at the hospital. He has done very well with our stay here. He thinks the hospital is the coolest place. He sure does love his baby sister. He is very caring. He is currently working on his potty training skills.

Thanks: I have to say thank you to everyone who has helped us so much! The people that have given their time to help with Jack, sit with Abigail, bring me food/ snacks/ dinner, provide me company at hospital, help around my house, gave donations, sent flowers, or just offered their help in whatever way we need. You know who you are, and I'll never forget these acts of kindness. I owe so many of you! Wouldn't be were we are now (especially with a smile on my face) if it wasn't for all of you AWESOME friends and family!! Thanks a million!!

June 29th

We are at week 2 of our 6 wk stay.... I can't imagine 4 more weeks in this joint. The days are long and lonely. Visitors are welcome anytime (hint, hint). They are the highlights of my day. Abigail is doing good. Unfortunate that we are here only to receive antibiotics. She really isn't sick. They just want to make sure the "infection" is really gone this time. Not much really to say.... Jack spent the day with me and Abigail last friday. We played in the toy room, painted , rode cars, etc. We had a great day together. Me and Nathan attended a conference held by Its My Heart on congenital heart defects on Saturday. I'm just happy to say there i not much to report at this time.

Please pray for Abbey, Ben and their family. They lost their precious little girl, Emma, on Saturday June 27th.

6 week stay!

Well, just got the news today that they intend on keeping her in the hospital for 6 weeks. They do not think she has endocarditis, but the treatment course will be the same. The 1st two cultures came back positive for enterococcus faecalis (same bacteria from previous hospital stay). They last 2 blood cultures are remaining negative at this point. They suspect that the infection has been hanging out either in her shunt (which is a foriegn object to body) or her blood clot. Both places would have difficulty getting rid of infection. They intend to keep her on IV antibiotics for 6 weeks, and long term oral antibiotics to keep it suppressed.
My heart sunk when I heard this news. Hate living life out of a suitcase and trying to manage time with both kids and husband. And most of all, them just messing with her all the time. They plan to place a PICC line on Monday.
Overall she is doing great, eating well, gaining weight, and looking cute!!

Not going to be a short, quick stay!

As you can see, baby Abigail doesn't look sick at all.

Today during rounds with the doctors:
*2nd blood culture came back positive again (some sort of infection in blood)
* no change in the blood clot

Impression: possible infection (endocarditis) of the heart or infection in her blood clot or just in blood in general

Plan: antibiotics for 10-14 days. If they come to the conclusion that the infection is in heart or clot they will do six weeks of antibiotics. Repeat blood cultures everyday until negative.

Summary for the day:
She got a successful IV( for antibiotics) today started in interventional radiology on the first try!! Woo Hoo!! Hopefully it lasts. Once blood cultures negative, possibly place another PICC line.
She had an echocardiogram of the heart to look for signs of endocarditis. They did not see any signs, but they say it doesn't always show up. Not sure how they will be able to come up with a definte diagnosis. They finally got the Lovenox level they have been trying to get for weeks now. The level was low (non-therapeutic) . So now they will increase her dose. They are pleased that there is no growth of clot. Will remain a 3 month treatment. ( Her poor legs and arms are already bruised, with knots). She is on three high dose antibiotics, lovenox, baby asprin, and enalapril). She continues to eat well, and you would ever know that there are germs setting up house in her little body.

Well, that is it for now..... start your prayers back up!! We enjoyed being at home much better.
Brother Jackson is sick too... tested positive for strep throat. Possible source of her infection

Back to TCH!

Well, not excited to writing about our new stay at Texas Children's Hospital!!Yesterday we went to our regular pediatrician appt for hr 2 month shots. Abigail weighs 9 lbs. 2 oz. and 21 in. long. They took her temperature on forehead- 100.6. Bad mother that I am, I hadn't noticed. So not shots for us yesterday. The pedi notified the cardiologist. We were instructed to go to TCH- ER. All because of a low grade temp.

While we spent 8 hours in the ER, we had blood cultures drawn, CBC, chem 7, chest x-ray, EKG, flu test, and to top things off a spinal tap! Her white blood cell count was elevated (23, a sign of infection). Flu test negative, spinal tap negative for meningitis. About 12am last night we were transferred to the cardiology floor to hopefully just stay overnight.

So update from today.... 24 hours has turned into 72 or more hours!! Lucky us!! No fever since she was admitted. Blood cultures initially have come back positive which equals need for IV and antibiotics. They say the sample could possibly be contaminated, so they drew another sample today. We had 5 different tries today for an IV by " the best", " the experts", " the people who never miss".... NONE were successful, surprise!!! So after many discussions, they have decided to give her antibiotic orally. She went for another ultrasound of her blood clot... still waiting to hear any results. So for now thats it. Just hard to be the one to watch her go through this torture all over again. Lets hope this stay is much shorter than the last.

Brother Jackson at home today also with a fever. So maybe we are just dealing with a little virus. Need my kids to be healthy!!

I am planning my return to work on July 5th!! Exciting huh?!?! Any takers on babysitters, need a little baby love, got the baby fever and your husband not willing?? Just going to be working once during the week and one day on the weekend.

I will keep you all updated!!

Doing GREAT at home!

Abigail is weighing in at 8 lbs. 10 oz. now!! Eating and growing well. We have had no problems since we have been home. Thank the Lord! We have had many doctors appts in last two weeks. Cardiology last Friday. They did an echo cardiogram of heart (GOOD), EKG (GOOD), chest x-ray (GOOD), blood pressures (GOOD). Her oxygen saturation's have been within the normal range for her.We return for another visit on Friday. We had Hematology appt on Friday also, with the intent of drawing blood for a Lovenox level. Not surprising that they only tortured her not to get their sample. (Remember, they had difficult time while in the hospital drawing blood). We returned today for them to try again. Tried twice, unsuccessful. Plan to try again on Friday. It makes me so angry to watch them hurt her over and over. We went to Audiologist today to re-check her hearing test. She had failed the test in the left ear previously. Today we passed in both ears, YEAH!! These doc appts keeping me busy!

Abigail is a good sleeper during the night. She is letting me sleep 4-6 hours at a time. This is great because in the hospital they made us wake her up every 3 hours regardless to feed.

Big Brother, Jackson, is doing awesome!! Has had no problems with the new addition to our home. He is actually great with her, very caring, and very helpful. He talks about how her heart was fixed, asks if she's okay. Randomly goes up to her and talks to her, pats her head, tells her he loves her, gives her her pacifier. It's so sweet!

So overall, things are great in the Rorick household. Sorry its been so long since an update.... but, not too much to say lately since she doing so well. Her next surgery date is still undetermined. They say typically between age 3 mon- 6mon, but sometimes up to 9 mon. Just depends on how she does in the weeks and months coming up.

WE ARE HOME!!

Just wanted you all to know that we actually came home yesterday, Thursday May 21 st, in the afternoon. We had all of our family over for a celebration. We were in hospital for 42 days, Abigail was 6 wks old yesterday. What a beginning for her!
Everything is going well so far at home. Thanks for all your support and prayers, that's what got us home!! We still have a long road ahead, but we will do whatever it takes. Lots of doctors appts in the next week (Audiology, Hematology, Cardiology, and Pediatrician). I will keep you all up to date. Hopefully I will have a little more time on my hands and I will be able to update with some new pictures soon!

GOING HOME !

NO TUBES, NO WIRES, NO IV'S, NO MONITORS

DAY 41:

Weight 7 lbs. 13 oz.
Whoopie!! The docs came in today and said we could go home. YEAH! Only problem is they have poked around with setting up discharge stuff (CPR class, nutrition consult, medications). So we are all here hoping all the right things happen today and we will be headed home. We were hoping for friday, so a BIG surprise when they said today.

Won't Jackson be surprised when he gets home today!

As for Abigail.... no signs of infection and blood clot has remained the same size (will continue Lovenox at home for 4-6 wks and be followed by Hematologist). Mommy got to take out the NG tube on Monday. What a difference that made with her feedings. She has been eating 66-90's of milk with every feed!! Her PICC line was taken out today. All of her leads and wires are gone... I can walk around with her without restrictions. She is FREE!!!

Well, I will keep you all posted. Keep your fingers crossed!!

Weekend Update!!

Having a great weekend! Abigail ate 66 ml out of 66 ml at 3 AM today, 100%. On average she is eating in the 50's... We are so excited to report this news to you all. The doctors are very proud of her, they are actually talking about taking out her NG tube and possibly going home this week. I hate to get TOO excited, but we are very hopeful to have our WHOLE family together at home very soon.

5 wks old!

Abigail is 5 wks old... we are at day 36! Things are going well. We have reached a new record with feeding. She ate 57 ml of 66 ml today! Woo hoo! Making GREAT progress. Hoping to go home without any tubes. She will finish her course of antibiotics tomorrow and have a repeat ultrasound of blood clot on Monday. Hopefully they will take out her PICC line and NG tube on Monday if things continue to go well throughout the weekend. Today she weighs 8 lbs. 0 oz.


Sorry about the "Emergency Room" entry that was never quite explained. I tried a couple of times to write about it and then the computer battery would die, or the entry would not save.
So too add to the drama.... On Wednesday, I had a sudden onset of constant, severe pain in my sternum area radiating around my back. The pain reminded me of a previous gallbladder attack I had in '07. After suffering for 20 min or so, the nurses wheeled me to the ER at St. Lukes. They gave me Toradol and Morphine for pain after starting an IV and drawing labs. The morphine helped quite a bit. They sent me for a cat scan. In the end, couldn't find anything wrong with me. No explanation???? Well, after 4 hours, they discharged me. I was just glad to get back to Abigail. I just wish I had an explanation for the pain.

We have new visitors in today... Aunt Peggy and Uncle Dempsey have driven 850 miles from Missouri to come visit!

Hope you all have a GREAT weekend.

Hey everyone...Happy Monday, day 32 of our hospital stay. I am sitting in a waiting room while they try to get #3 PICC line in Abigail. Poor girl was probably stuck 20 times or more over the weekend for attempts at IV's or trying to draw a blood sample. Out of all those sticks, they had NO success, not even once!! She is bruised up everywhere, from head to toe! Let's hope that this PICC attempt is successful and that it doesn't cause another infection. They need the PICC to finish her 10 day course of antibiotics. She has started to eat better last couple of days.... remember goal is 60 ml, she drinking anywhere from 24-48 ml..
Well, I guess that's it for now. Have a great week! Yeah they got the PICC in!!

Happy Mothers Day

Happy Mothers Day

to you all!!!

I feel so lucky to have two beautiful children to love on every day...

I will really be able to celebrate Mothers Day when I have them both home together. I pray that this day will come soon!

Poem
I am a Heart Mother

One day my world came crashing down, I'll never be the same... They told me that my child was sick.. I thought, am I to blame? I don't think I can handle this...I'm really not that strong.. It seemed my heart was breaking..As, I'd loved her for so long. I will not give up on this child.. despite your best "advice".. I will give my child a chance.. No matter what the price.. And I will learn all that I need.. to help my child to thrive... I'll even use that feeding tube.. My child will survive! And she'll needs lots of therapy? And she just can't gain weight? Alright God I can do this.. I will not curse our fate. The feeding pump beeps,( at 3:00 a.m.) It serves as my reminder.. How many parents would welcome that sound? Tomorrow Lord, I will be kinder. Another angel earns their wings.. and I run to my sleeping child's bed.. I watch her then, for quite awhile.. (I bend down and kiss her head) Then I cry for the parent's whose lives have been broken.. And I look to You wondering why? Oh Lord, I just can't know your ways.. No matter how I try. And yet, I trust You hold her life..(and guide us through each day) My mind says savor each moment she's here...But my heart whispers,"Please let her stay". From... pacing the surgical waiting room... to sitting by her hospital bed... From... wishing for a good nights sleep.. to learning every med.. From... wondering will she be alright? to watching her reach out her hands.. with every smile, my heart just melts..(despite life's harsh demands) For all who see that faded line.. I look to them and smile.. You see my child is loved so much..I would face any trial... That same scar I trace with my finger.. (It's the door to her beautiful heart) You must have known how much I'd love her.. (Just as You loved her right from the start) A heart mom is always a heart mom.. (wise beyond all of her years) And for those who have angels in heaven.. Our hearts share in all of your tears.. On Mother's Day I will remember.. You chose me for her(and no other) And I will embrace that beautiful day.. When I became a "heart mother".

~Author Unknown~

One Month Old!

4 weeks today!!

So we have hit our 4 weeks mark today. Woo Hoo! We weigh 7lbs 11oz. Gaining weight... at least were doing something right! Abigail is doing pretty good overall. Sorry I haven't updated you all recently. I stay busy... our days revolve around eating.... which she is still having her eating issues. She is supposed to be eating 60cc every three hours and has only been eating 15- 25 cc. She starts off feeding orally by a bottle then whatever she doesn't eat they give her through the NG tube. The doctors said that if she doesn't start eating more, then they will discuss putting in a more permanent feeding tube (G tube, through abdomen into the stomach). Also, earlier this week she started spiking a temperature. Through blood cultures they determined the source of infection is enterococcus. They started her on high dose antibiotics for up to 2 weeks. The doctors say she is doing well so far with treatment. Her blood clot was re-evaluated on Wednesday by ultrasound, they said it has gotten bigger. They have increased her Lovenox dose, still getting shots twice a day. That about sums it up for our health concerns at this time. I guess we still have no plan on when we'll finally go home. I'll try to update yall more frequently with info and pictures.

Clothes!

Doing great today! Mommy is staying the night tonight... yeah, Girls night! They removed one of her PICC lines today and have stopped all IV fluids. Think she is only getting lasix now through the PICC once a day. This is great cause we can now play dress up. I bathed her today and dressed her twice! They stopped her heparin and started Lovenox, which is another blood thinner they give as a shot twice a day. Not too happy about that. She doesn't like it at all. Her legs are already bruised and knotted up. Poor girl... She'll be a tough one when this is all over. Watch out Jack! Yesterday her weight was 7# 4oz. Still struggling to eat all of her food by mouth, but think they are just overwhelming her with too much food too frequently.

What craziness going on here at TCH. "Swine Flu" chaos! Everyone talking about it. The entry way into building is also the waiting room for the ER. Everyone wearing masks. Let's just hope everyone is overreacting.

Thank you to all of her visitors: Meme & PawPaw, LeLe, Aunt Peggy, Aunt Patsy, Grandma & Grandpa Mike, Ackey & Uncle Frog, Aunt Lesli and Michael, G-Pa, Stacy, Michele, Becky, Theresa, Libra, Dr. Swaim, and whomever I might have left out.... We enjoy our visitors!

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!