Libby Today

Well, this morning, I talked to Gracie who was fighting back tears, I could tell. She said that Libby was having a bad morning. She had fever and they thought that it was an infection. She told me that a yeast infection would "not be good" and that could be the culprit because of all of the antibiotics that she is on. My heart ached for her. Really, yesterday was so peaceful, and I could hear the strain in her voice, the fear or the unknown and the wonder of what would happen next. I prayed against infection today and against human error, which is probably huge fear for parents up in CCICU, but especially when you are physicians and you KNOW so much. The rest of us are blessed with ignorance! Praise the Lord for good news. I just learned that:

Blessings in the storm are some of the sweetest and I think we have another one today. Libby got her long term IV placed in the left arm today. As an aside, the one good thing about her being on the breathing machine is that they can give her "anesthesia" and she has no discomfort for the procedures. Anyway, in an xray to check the position of the IV, they incidentally noted some increased whitening in the area of the right upper lung. A very astute physician put things together and hypothesized that Libby's neck IV is extravasating (leaking) into the tissue around the IV/in the area of the right upper lung. This can happen when a IV is positioned for a long time. While we don't like that this happened, it seems to be much better than an infection and once they removed the IV, she seems to be more comfortable. The wound question will be addressed tomorrow morning. Thank you for persevering in your prayer support.

Thank you Lord, for giving us Libby for another day and for giving her strength to fight! Thanks for giving Eric and Gracie some good news tonight that there is NOT the infection that they were dreading. May the Lord be glorified in this.

Ride home and flight

Two stories.

I talked to a sweet couple in the shuttle on the way home. They were going back home fom MD Anderson. The man had a follow up check up to learn that they had gotten all of his cancer and that it had not spread anywhere and he would NOT need chemo or radiation. He was so cute calling "Martha" "Edna" and asking his wife who else he needed to call because the cell phone didn't have much "juice"! I congratulated him on his good news. I also met a girl that was there that had gone to a meeting at Rice University. She does studies about Saturn! I was so proud that I knew those people were called "astrologists" so I said are you an "astrogolist". Her reply was to tell me that she is actually a physicist. Hmmm...missed that one.

At the airport, I was sitting right in front of the counter when a man took a phone call. I couldn't help but notice and then I heard him say "where are you? what kind of gun, a hand gun or a rifle? It should be near the trigger, it will be a switch" "get somewhere, hide, be quiet, don't shoot unless you have to" Well, I was about to come unglued. I, mean, I could pretty much tell what was happening, but I didn't know who was on the other line, was it his wife, his daughter??? Then he lost the call and was saying "hello...hello..." He called another person and I could hear him sayind "someone is in the house right now, and she has a gun and she didn't even know how to get the safety off....she has called the police, but can you go over there?" Then he quickly got off, and took another call he said "he's coming. don't come out until you know it is the police or ____, didn't get the name" Then he took another call and he was saying "you are there, is she okay...." So, I couldn't stand it, I had to ask....he was so gracious and told me the whole story. His co-worker (32 yrs old woman) called him hysterical. She had come home to her "M" streets house in Dallas, opened up her gated driveway and before it closed, someone had quickly pulled in behind her. She ran into the house, locked the door, got a gun and hid. When she was talking to this guy, she had called 911, but the person was breaking in. He could hear glass shattering. She was so scared. She had the gun, but didn't know how to turn the safety off so she called the guy. He called one of their other co-workers who went to the house. The police were there and she was safe. He didn't know if they caught the guy or not. Man, it was just like a movie or something! I told the guy that if I were ever in a sitauation like that, I would want HIM to be the person I was on the phone with. He was so calm!

My Visit with Libby

THESE ABOVE PICTURES ARE FROM TWO WEEKS AGO ABOUT THE TIME THAT LIBBY GOT RELEASED. SHE WAS DOING SO GOOD, SO YOU CAN UNDERSTAND HOW IT IS EVEN MORE DEVASTATING THAT SHE HAS HAD SETBACKS AND IT FIGHTING FOR HER LIFE. CONTINUE TO PRAY FOR THIS AMAZING GIRL!!!
Yesterday, I got up at 4:30 AM and headed to Dallas to catch a 6:30 flight to Houston. I got to Houston by 7:30, caught a Super Shuttle to Texas Children's Hospital and off I went to see Libby, Gracie and Eric. As I was waiting for the shuttle, I met a lady from New Orleans. She was catching my same shuttle to go to MD Anderson. Sh was an older lady with beautiful white hair. She told me that she had been in remission from Stage IV cancer for two years and that she was there for her annual check-up. Those that know me know that I enjoy talking to people, so we visited about cancer and her highs and lows through treatment. She was a real delight to talk to, and she had a THICK Nawlens accent! When I got to the hospital, I text paged Gracie "ready or not, here I come!" I then went to the CCICU waiting room and called Libby's room. Gracie came down a few minutes later. She looked tired and unkempt...not the "normal" Gracie, but her smile got huge as she entered the room and we embraced in one of those BIG hugs that oozes through your body! We went up to see Libby, and there was a doctor in the room, so I scooted out so that Gracie and Eric could speak with him. Soon, Eric came to get me, and he went down to take a shower and I got to got see Lib. She was resting peacefully with an unimaginable amount of tubes and wires coming from her body. Although it was tough to see her back in the hospital all hooked up to medications, breathing machine, pumps and drains, she looked like my sweet Libby with her hair pulled back and a sweet pleasant look on her face. I approached her and Gracie said "Ms. Jeffer" is here. Libby opened her eyes and looked my way and mouthed "Hi" with the ventilator in her mouth! It was a sweet moment. She knew I was there and she responded to me a few more times throughout the day and it just melted my heart. I rubbed her sweet hand, brushed her wispy hair away from her brow and talked to her about my kids, especially Reagan whom she adores! She seemed to be listening. There were several visits from the staff yesterday. Physical therapy came and exercised her body. She did NOT like that! She mouthed "no!!" and "Stop it!!!" several times with a scowl her face! It looked like it hurt. The respiratory therapist came in a few times during the day and suctioned her vent tubing and her mouth. Gracie lovingly called him "The Respiratory Terrorist". I got to hold Libby's hand when she got suctioned a couple of the times. It was hard to watch. She would be peacefully sleeping and they would UNHOOK the ventilator and she would opened her eyes and look a bit panicked and they would stick a tube inside the ventilator tube and suction, which would make her cough. They would vacuum out the "gunk" and they would hook everything back up. She would settle back down and go back to sleep. She is on heavy narcotics, so it is amazing to me that she has those coherent moments at all. She is so sweet and just settles right down during the times of treatment. Tears would stream down the sides of her face as they would work with her. You know that it hurt or atleast was making her uncomfortable. Gracie is a ROCK. She would just talk to Libby about how the nurses and docs were helping her and that they want he better and she would rub her hand and comfort her...I guess you can hold it together and do it when you have to, but I just don't know if I would have the strength. Libby's hands were really dry, so I got to put lotion on them. It felt so good to smell the Baby Magic and feel her soft toddler hands in mine. I told her that I love her and I want her to get better so "Reagie" as she calls her can chase her around the house and pull her long hair! I had the privilege of spending most of the day at her bedside with Eric and Gracie one or both being there. Libby had an awesome nurse who let me (which made 3 in the room) stay even though the "rule" is two. She was so sweet to allow me to be in there and not make me stay downstairs. She kept telling me that it was fine for me to stay.
Oh, it just crushes me to see what they are going through first hand. They got to take her home....and then now she is here, and it is scary. Gracie told me she feels like she is "dodging bullets". It seems like they get hit with something new everyday. Gracie and I did leave for lunch. She treated me to a wonderful lunch at Houstons. We enjoyed our time together. It was a gorgeous day. She doesn't leave the hospital much, so I think that was good for her.

I feel very honored that I got to go yesterday to Houston and spend the day with Libby in person. It is so hard to be here and to feel like I can't help them...well, besides keeping the boys. I just want to make this all easier on them, and I can't. I can't imagine what they are feeling.

I will post next about my ride/flight home.

WE ARE MOVING!!!!

I was making sure that I have told all of the people who would read my blog. Sorry if I missed any of you. We are moving to Georgia!!! John was offered a great job there. We have been looking at jobs here for about a year without much success. There are not a lot of jobs in John's field of technology here in the metroplex, so Georgia, here we come!!!! We will be moving to Cherokee County which is north of Atlanta. John actually leaves on Saturday to be there in time to start work on Monday, so I am about to be a single mom for a while! (whew...not looking forward to that!) We are praying for a quick sell for this house and we plan to move during the Chirstmas Break for the kids. One good thing is that the Georgia schools go back to school a few days later than we would here, so that will give us more time. I have started packing and I have been cleaning out. I am trying to down-size our "stuff" which is a HUGE task. The kids are all excited about going and we think that this will be a fun adventure for our family. We will miss out friends and family here in Texas, but we will plan to be back for visits. Some of our family, we may see more than we do living here with them! Pray for us in this HUGE life transition. We know that God is in control of it all and we trust Him to orchestrate it all. I will try to keep you posted on the move. (this is a cookie cake from John's family that is congratulating us on our move and new home in Georgia)

I don't need surgery...

One thought that keeps ringing in my head regarding Libby goes back to August. I watched all 7 kids (Packwood 3 and Stonecipher 4) while Gracie and Eric had a conference call with the surgeon, Dr. Fraser. He talked to them for like 45 minutes to an hour. I tried to keep the kids pretty quiet and we were all playing. Libby put me to bed several times and tucked me in with her covers and gave me Elmo and Barney and her baby. She would just laugh and laugh. After the phone call, Gracie and I spoke briefly, and she told me a little but not much of what Dr. Fraser said. Soon after, we were being silly with Libby and Gracie was about to start her feeding when Libby said:

By the way, tonight she told me she wasn't going to have "sur-zhur-eee". I said "Oh really? Why?" "I don't NEED sur-zhur-eee". (from her Carepage)

It was one of those chilling moments like when one of my kids has said something like "I am going to go to heaven soon" I freak out thinking "are they about to die and they know it?" I am sure that all kids say things here and there. Libby said this clear as a bell. I was sitting right there! I am sure that Gracie has thought back to that day too.... Before they left for Houston, she told me more than once that she wasn't going, she was going to stay at my house...We miss her around here.

Libby Lastest

Libby is holding her own. She is making baby steps toward recovery. She is sedated and intubated and she has the wound vac on helping to heal her infected incision site. She is still very fragile. The boys got to go in and see her this weekend a couple of times. Libby has a lot of swelling, but I was told that the visit went well and the boys did fine. Gracie left the hospital and spent a lot of time with the boys. I think that was good for everybody. Mason is really having a hard time dealing with all of this. He is only 7 and it is a lot to take in. I plan to go on Tuesday and spend the day at the hospital. My sis-in-law has graciously given me another plane ticket, so I will fly down there, catch a shuttle to the hospital and spend the day, catch a shuttle back to the airport and then fly home. It will be a long day, but I really think that it will benefit Gracie to see someone from "her" world and it will benefit me to be there to check on Libby! I will post after I get back and let you know how it goes...

Libby's Day

The team took Libby back to the OR at about 2:30. We were just told that Dr Fraser is scrubbing in now. They expect it to be a short case, less than 2 hours. It may be longer if Dr Friedman (plastic surgeon) decides to close her skin. We are fairly sure that he will not, but we hold out hope that it might be possible and in her best interest. Otherwise she'll have to go back to the OR to close the skin in about a week.

Love, Gracie

We just spoke to the plastic surgeon and heart surgeon. They were able to close her sternum but chose not to close her soft tissue/skin. They hope to do that next week but we are hopeful that she can start to heal/get off support before they actually close her soft tissue.
We'll get to see her in the next minutes.

We appreciate your ongoing prayers and concern.

Lib has had some ups and downs since surgery. Her blood pressure dipped very low (50/30) and was not responding to the usual measures, so they had to give her epinephrine (adrenaline). This of course happened right as I walked in after shift change. It made her heart rate 208 and blood pressure 150/100. It really scared us. They are still working on stabilizing her blood pressures, but overall, she is doing OK. Dr Fraser prepared us that she would likely be sicker after surgery.

We pray for a quiet night for her. They plan to put the wound vac on tomorrow.

Love, Gracie

I talked to Gracie tonight for about an hour. She is spent...just emotionally and physically drained. Pray for her. Pray for her endurance as I send two energetic boys to be with her tomorrow! She continues to have peace in the storm...

Talked to Gracie

I talked to Gracie tonight. She sounded so much better than she has the past few days. She said that she came to a point yesterday that she was able to be at peace with Libby facing days of recovery or Libby going to Heaven. It was was hard to hear her say that, but there was so much peace in her voice. God is good to His children and gives us strength when we don't feel like we can go on....
Libby is making progress. For that, I am thankful. She is going to have a procedure done tomorrow to close her chest up. Well, maybe partially. She is having it done at 1 PM, so please pray for her and for her Dr. Pray for more continued progress.
I took the kids (all 6) to the indoor waterpark tonight. They had a great time. Araenae met me up there, and after two-and-a-half hours of swimming (with dinner in there somewhere), we showered the kids, dressed them for bed and then came home. The boys talked to Gracie and then they went to bed. Everything has gone so well. Thanks for continuing to pray for us here along with Libby. I can tell that people are praying...

Well, I need to lay out the lunchboxes for tomorrow and get my stuff all layed out. Savannah has handbells at 7:25 and I have a teacher conference at 7:30....Savannah has had TWO tardies this week. (the first of her school career). We just can't seem to get them to school on time. John said that that line has been awful, and they have to be to their classes before the announcements start. Mason and Whitney make it to class, but Savannah is on the hall farthest away from the office. I feel so bad. I also feel bad because Whit and Mason's teachers know that things are out of sorts at our house, but I didn't tell Savannah's teacher....maybe I will tell her in the conference tomorrow. Well, at least she will be ON TIME tomorrow...(Lord Willing!)

Baby Steps for Libby and STEPS for Reagan

Things are improving for Libby as you will read in the following posts. The kids are doing great. They are getting along fine, no fighting or anything...continues to bless me! Reagan is trying to take steps...makes me sad. BUT she is almost 14 months old, so it is time! The babysitter, Araenae, is picking up all of the kids at school and taking them to the park...I could get used to having a fulltime sitter. I wanted to post here, and then back to laundry I go!!!! Thanks for checking in!!! Gracie sounded MUCH better last night than in the days before. Please continue to lift her and Eric up as they wait bedside with Libby...I keep thinking of that chorus "God will make a way, when there seems to be no way, he works in ways we cannot see, He will make a way for me..."

Lib had a good night. Her urine output has picked up significantly, which is a great sign that things are improving. Her temperature normalized after about 1am. Dr Fraser is cleaning out her wound right now. We will hear from him afterwards about the plan. Thanks for checking on us. Love, Gracie Dr Fraser was encouraged by how good Libby's wound looked today. He anticipates taking her to the OR tomorrow or Thursday along with the plastic surgeon to close at least her sternum (breast bone), possibly the skin. More likely though is that the skin closure will occur later after she has had a "wound vac" on the wound for about a week. We have never seen this, but the response we keep getting from medical personnel is that it is near miraculous in improving wound healing. It really is like a vaccum that helps to "shrink" the wound. Eric spoke with the plastic surgeon yesterday who anticipates being able to do a more simple closure than we were originally prepared for. Another piece of good news is that her culture from yesterday is not growing any bacteria. This is really important because continued growth in the would be an indication that they may not be able to clear the infection no matter what they do. So we are thankful for baby steps. We are doing better today also. A fellow heart mom posted on her page about moving from traumatic shock to miserable acceptance and beyond. I think that is so true!! The shock is wearing off, and hopefully we will move from surviving to thriving soon. We feel loved by all of you! Love, Gracie

Sorry for the late post....

I have had 7 kids today, and I don't know how those people do it that have 10, 11, 12 kids...
Seriously, it hasn't been bad, but it is the preparing and thinking ahead that I am not good at. I am not organized enough to have that many kids on a full time basis. Whoever is praying for us with the kids...keep doing it. I can tell that people are praying because this has been too easy! The kids have done awesome. Keep us covered! I will more than likely have the boys all week...maybe longer.

Here is the latest on Lib:

Dr Fraser was able to uneventfully clean out Libby's wound and place a chest tube to drain the fluid that has been collecting around her left lung since last week. He talked with us extensively afterwards and said that he has not given up hope. He feels that she has some good things happening in her body, and he considers her stable. The plastic surgeon was there also and they have come up with a tentative plan for closure of the wound, maybe on Wednesday. The infectious disease team is very involved with directing her antibiotics and are "going after that bug".

It is easier to give you details of her care than to tell you how we are doing. As those of you who have gone through something like this before know, we don't even know how we are doing. One minute we are "OK", then the emotions rush in. Ultimately, we know that God is good. He loves us and He loves Libby, even more than we do. He may take her to heaven soon, or in 90 years. We are scared to face life without her and the pain that comes with that, but we will do it if we have to. We know we will be with her again. The doctors assure us that she is not suffering. We have hope for more precious days of BOOs and roars and "Tell me a bad Jimmy story".

Love, Gracie

Libby has had a fairly stable afternoon, but her temperature has been difficult to control. It has gotten as high as 104.7, nearing the point that is considered "dangerous" for the brain. They have recently put a cooling blanket on her and her temp is slowly coming down. They are working very hard to get her better. We are confident in her care here. Dr Fraser will look at her wound again tomorrow (?morning). Our boys are loving being at the Stoneciphers, who have become dear friends in the last 15 months. I think the biggest highlight has been getting to eat Cap'n Crunch for breakfast. We know many of you are ready and willing to help. If we think of anything, we'll let you know. For now, just prayers. Thank you.

Love, Gracie

Please continue to lift this family up...
Also, I will be posting about our trip to Longview, the fishing and "camping" and all. But right now, I need you praying for Libby...

Thanks...Jennifer Pretend mother of SIX
PS on a side note...Gracie doesn't feed her kids sweetened cereals, so they went nuts this morning getting to have Cap'n Crunch for breakfast! Mason ate two bowls of cereal (Cheerios, then Can'n Crunch once he saw that Camden was having it!) They were saying things like "aw man, this is awesome, it has sugar in it, and it tastes so good". She is gonna kill me; I have ruined her children!!!!

Urgent Prayers

Hello All,

I am asking that you pray for Libby. Here is the latest carepage update:

Libby had a fairly stable night, but her morning isn't going so well. Her blood pressure support is being increased as I type. She is on Dopamine and Vasopressin. Her ventilator support is up a little. Dr Fraser plans to change the packing in her wound and place a chest tube. The truth is that the interventions available can only do so much. Her body has to do it's part. Thank you for your messages and prayers

Then, awhile ago, Gracie called me to touch base with me about the boys and just stuff. I asked about Libby, and she told me that things are not good. Her voice was tired, but she was very articulate. Libby is not doing well at all. Her limbs are cold except for one leg, and no one knows what is causing that. She is having to have a lot of fluid put in to stablilize her blood pressure, but the fluid is causing more fluid to build up. Dr. Fraser was repacking her chest wound and placing in a chest tube. Gracie was mid sentence with me when she said "I have to go...Dr. Fraser is here to talk to us...I have to go, I will call you back"

I haven't heard from her, and I may not, as I know that they are consumed with caring for Libby right now!

My heart is hurting for them.

The boys are doing fine here. They don't know how bad things are with Lib. They know that she is sick and that she is back at the hospital, but other than that, they don't know how serious the situation is. They have been excellent for me and Mason went to school this morning with a smile on his face and joy in his heart.

My sister-in-law called and is bringing dinner over to us tonight, which is so nice as I am finding that I would probably not be a good mother of 7 (I have another boy here today that I am watching for a friend!) Blayne is eating up having time with the guys as he is always surrounded by girls!

Thanks for loving us, and for caring for our friends the Packwoods too!

More when I know something.....

Libby is very critical

Dear Family and Friends,

Libby's condition is very critical. I feel nauseous just thinking of the reality of how sick she really is tonight! I drove from Longview to Centerville (with great directions...thanks Dad!) today to pick up the Packwood boys. Gracie called me this morning and she sounded terrible. She needed me to come get them. The Isenhowers drove them to me, and they are here now sleeping soundly. They were so sweet and innocent in it all. They played and ate dinner, had their baths and got to talk to Gracie on the phone tonight. I heard Mason ask her, "is Libby maybe gonna die?" He and Camden don't know how bad things are, they just know that she is sick and back in the hospital. I know that they are concerned about her, but they are also little boys, and find joy in running in my backyard with flashlights, and putting the leash on my dog and dragging him here and there. I think that they are happy to be here. It is a new set of surroundings, and they love to spend time with my kids. We had an uneventful trip and I am prepared to have them as long as Eric and Gracie need me to. Okay, the following are posts from Gracie today. Please pray for all of them. I talked to Gracie tonight, well, kind of, she was crying and really struggling to speak...it breaks my heart. I want to be there with her, but I know that being here with the boys is where I need to be right now.
We are still in the ER. By the time we got here, Libby looked a little better. Her chest xray looks about the same - no increase in the fluid. They just got blood work, thankfully with just one stick. They are holding off on an IV until the labs are back and it is more clear exactly what needs to happen. She is as usual being a champ. One huge praise - when we got here, there was no one in the waiting room and we got right in. That is HUGE for a Saturday night. Waiting with lots of people with colds, etc could be so dangerous for her. SO - we are thankful for that and her bravery, and your prayers. We'll update when we know more.

Love, Gracie

The nurse came in and told us Libby's white blood cell count is very high (45,000) and they were able to start an IV in ONE stick. Whew! We know she is being admitted, but that is all we know for now. We don't know the source of the infection yet either. All involved don't think the wound redness/swelling is the source. It just isn't angry enough looking. Time will tell. Thanks for checking on us.

Love, Gracie

We got up to our room around 4:30am. Libby is more comfortable with her breathing and some Tylenol with codeine seems to help the pain she is in. The wound seems to have declared itself as the source. When we got to the floor, an area near the bottom is quite swollen and white, seemingly a collection of pus. The surgery team just rounded and plans to take her to the Operating Room ASAP to open that area up and figure out how deep the infection goes. That will determine the course afterwards. We will be in the ICU. We are hopeful that it is a localized skin infection, but the concern is that it is a deeper. I probably don't need to say that this could be life threatening. We will once again trust our Good God for His plans for our precious girl. She is really His anyway - just on loan to us. Please pray. I don't even know what exactly to ask you to pray for. We will update when we know more - likely late morning to early afternoon.

Gracie
The OR team took Libby back about 30 minutes ago. Two precious things that they did for us were let me ride in bed next to her on the way up from the floor to the holding area, and give her great sedation before they took her back to the OR. We got to be with her while she fell asleep. We were just updated and they haven't actually started looking at the wound yet. It takes a while to get all the IVs that she needs. Thank you for praying.

Love, Gracie

Dr Fraser came out to talk to us. Libby's infection is very serious, going under her sternum. He had to leave her chest open so the infection can be treated. Many questions can't be answered right now, but it is at least a big setback. Plastic surgery will have to be involved to close her chest, and she will likely need 4-6 weeks of antibiotics. We need lots of wisdom, courage, and strength for the coming days, probably mostly about our boys who get pushed aside out of necessity. Thank you as always for praying.

We got to see Libby briefly before they put in a central line. She looks OK. They are keeping her paralyzed and sedated and trying to get her blood pressure stabilized. We have hope for brighter days ahead, but are also struggling with the implications of this infection. We will take it one day at a time, maybe one minute at a time. Thanks for loving us.

I wish I had better news to report. Libby is very sick, requiring frequent intervention by the medical team. Unfortunately, the things they have to do to keep her blood pressure up have their negative side effects too. The next hours and days are critical. We are in tremendous pain and feel great sadness and fear right now, yet feel waves of peace and hope. Thank you for the encouraging scriptures you have sent.


PLEASE CONTINUE TO LIFT THEM UP IN PRAYER....

Libby...Please Pray

I got a text page tonight from Gracie. She wanted me to update her carepage. They were headed to the ER. Libby has fever and is having breathing difficulties. Her incision is also very red. This is the kind of thing that happens with FONTAN patients. They are on a roller coaster ride for a while after surgery. I know that they are all bummed, scared and stressed. Please pray for peace for all of them and for healing for Libby. The boys are in Houston with them and the sitter stayed here because she has Broncitis and knew that she shouldn't be around Libby. So, that means friends in Houston are taking care of the boys. So, pray for all of the family as they face this challenge. I will post something when I get an update. Thanks....

LIBBY GOT RELEASED!!!!

Hello from Longview....visiting my parents!
I wanted to let you know that Libby was released to a local friend's home in Houston today!!!! HOORAY! Keep praying. Here is the latest post from Gracie:

We made it to the Isenhowers at about 1:30 this afternoon. When we got here, Libby was breathing REALLY hard. She seemed a little warm too, so I gave her some medicines and a breathing treatment. She begged to go to bed, so I put her down for a nap. She is more comfortable now, but we are appropriately cautious. Libby also is surprisingly disappointed that we are not HOME. I didn't realize that I needed to differentiate things for her. I just thought out of the hospital was good enough!!! Please don't stop praying now!! It wouldn't take much for us to end up back at the hospital. We are praying for a quiet calm weekend with no hospitals and no excitement. BORING is good!!! We'll keep you posted! Love, Gracie

These are the two latest posts from Gracie. They thought that they were getting released today, so they are discouraged!!! But, it is good to be there at the hospital and not at home with her having to go BACK to the hospital!

This hospitalization reminds me somewhat of the Titan rollercoaster at Six Flags, which by the way I almost passed out on last summer!! :o) Last evening the cardiology fellow came by to tell me that Libby's chest x-ray yesterday showed some reaccumulation of fluid around her left lung. They ordered an extra dose of IV Lasix (diuretic) and increased her regular Lasix to 3 times a day. The chest x-ray was just repeated, so I don't know the results yet. Libby's nurse told me a few minutes ago that there is an order for a chest x-ray for tomorrow morning already written. I am hoping it is a mistake, but at the same time, I realize that we need to stay until they are very comfortable that we can stay gone once we leave. We have not seen the doctors yet. I will let you know when I know more - hopefully soon.

Love, Gracie

Not leavin' today. The fluid around her left lung is a little increased, so we will get another xray this afternoon to see if it is worsening. This is what we were warned about - these effusions can be a real problem after Fontans. We'll just have to see what happens. If it gets a lot bigger, they will have to put in a chest tube. Please pray!!

Gracie and a disappointed Libby

Christmas Photos...already?

We are gearing up for our annual Stonecipher Grandkid Christmas photo. This has been a love gift that my sisters-in-law and I do every year for my mother-in-law. It gets more complicated each year as we keep adding to the group! We are up to 9 right now with one on the way in March (Becky is the overachiever that is having babies that are 13 months apart!!!!) Anyway, we will be gathering soon to do the photo shoot and I am sure that there will be a blog. This photo is from last year's photo shoot. We really went out and did pics with all of the the kids and adults!!!! WHEW. It wears me out to just think about it! It is hard to believe that it is already time to be taking Christmas photos!

Libby News

These are the latest notes from Gracie. It sounds like Libby is responding well to treatment, but I know that this is discouraging. I talked to their sitter tonight. She was headed over to spend the night at the house. Eric is leaving at 4AM to head back to Houston to be with Gracie and Libby. Pray for save travels for him and for healing for Libby....thanks.


Libby's white blood cell count is elevated and indicates that she has an infection. Her chest x-ray looks the same (no pneumonia). She has on a bag to collect urine but no luck yet. She has slept all afternoon. They are trying to get the very best people to start an IV (ERGHHHH), but they are out on a transport getting a baby from another hospital. Libby is such an impossible IV start, that they are talking about giving her an antibiotic shot if all else fails. Thank you for your messages and support. This was a step back that we hoped not to make. Please pray that the infection can be located and treated effectively. Thank you.

The IV is in, with miraculously only 1 stick. Ya'll must be praying really hard. I looked at her incision site a little bit ago and there is a new area on it that looks like a collection of pus. A wound infection could be such a setback, so we are praying that that is not the source of infection. She still has not urinated, but no one seems concerned - yet. The cardiovascular ICU fellows and attending have been to see her and think she is doing OK. She is finally awake and watching "Buzz Life-Year", so I am feeling a litle better. Please pray for Eric. He is home with the boys and struggling with whether to come back to Houston or not. It is so hard to be there and want to be here and be worried but not able to look at Libby himself. We also have to consider the boys and their needs. Please pray for discernment, strength, courage, wisdom, and healing and peace for sweet Lib. She continues to be very brave, but is so tired of being here, especially since she thought we were going home today. Thanks as always. You lighten our load.

Love, Gracie

Libby has perked up a bit this evening, and I even just saw a smile and a "BOO!" She asked for a wagon ride which we took for 3 laps. The heart surgery fellow came by to look at her incision site and decided not to do anything with that spot tonight but is concerned that it may be infected. He thinks the more likely culprit is the central line. Even though it was removed yesterday, it could have set up a blood infection that has been brewing since then. Either way, it looks like we will be here for several (up to 10 or even 14) days of IV antibiotics. She will need a better IV than what she has right now, so that will likely be the task tomorrow. Thank you for your encouraging words. Sometimes I feel like we are running a marathon and you are all at the sidelines cheering us on, or sometimes running along side us, or even carrying us when we can't take another step. Please keep praying. This is discouraging, but God is good and has a purpose here, even if we don't understand. I'll keep you posted.

Love, Gracie

Things Can Change So Fast

These are the three posts from Gracie from today....please pray for Libby and I will let you know what is happening when I receive word!
Thanks.
Jennifer (The last post was at 2:07 PM) LIBBY DOESN'T RUN FEVER. THE TWO TIMES SHE HAS, IT WAS A TRIP TO THE ER!!!!


The word is...we are outta' here!! We are getting ready to leave here as soon as all the logistics are worked out. The boys and Eric are heading home, and Libby and I will camp out at the Isenhowers until we are given the ok for heading back to Keller. It will likely be at least the end of the week, but I haven't heard for sure. I'll update when we are really discharged.

Love, Gracie

mmm...not so fast. As soon as I sent send on the last post, Libby got very fussy, started breathing harder, and seemed warm. She does have a temperature of 99.5, but she has been getting Motrin and Tylenol with codeine for pain, so it is hard to know what her temp would be without those. We are hanging out here to see how things go. The biggest worry is that she has a blood infection from the central line that got pulled yesterday. Her oxygen sats are lower than they have been too. Will you please pray for our sweet girl right now? Thank you.

Love, Gracie

Libby's temperature is 101.3, so they are deciding what labs and xrays to do to determine the cause. Eric and they boys have gone. Please pray.

Great News About Libby

Libby has had a great day. Her irritability is much improved, and her central line (big IV) was taken out this afternoon. She is also off the constant monitoring of her heart rate/rhythym (sp?). There is some discussion that she may be able to be discharged tomorrow, but we really don't have our hopes up. They are still adjusting meds and watching her chest x-rays daily for reaccumulation of that fluid. I think Dr Fraser is surprised at how well she is doing. I told him today "See, you are better than you thought you were." He didn't comment. He was really sweet with Libby. He said "Why are you griping at me?" because she was still grumpy when he came by. It was funny.

We'll update tomorrow when we get news about discharge.

Love, Gracie

"Free Drugs"

Our school is having Red Ribbon MONTH this month. Now for those of you that don't know what the Red Ribbon campaign is; it is to promote drug education and to help keep kids off of drugs. It is usually a week for RED RIBBON, but our school is talking about it for a month...there are special groups coming in to talk and entertain, there are pencils, sickers, posters to sign and lots of fun days to dress up (i.e. yesterday was pajama day). Well, I just don't know how good of an education our children are getting because Whitney came home yesterday and said, "Mom, you see my sticker on my shirt? Is says 'Free Drugs', that is what we are learning about in schoo!" (I guess we need to supplement the Red Ribbon week curriculum at home a bit)

Libby Is Doing Well

Things are going well for Libby and unless she has setbacks, she will be released to the Isenhowers on Monday for 5-7 days. Isn't God good?

"I AM LIBBY"

Well, Libby is in a regular room. Gracie should have gotten to sleep in the room with her last night. Hopefully, that all went well. When we went down for surgery, I had shirts made for everyone that said "Team Libby". I had a shirt made for Libby that reads "I AM LIBBY"! I am mailing it today. She will hopefully be able to wear clothes soon, so I think that it will be fun for them to have that. Mason told me that he talked to Libby last night and that she sounded tired. He is excited because she is now on a floor that he and Camden can visit. He also told me that he could eat breakfast lunch and dinner with his family now. I don't think that will be happening, but I wasn't going to tell him that!!! He is on the road right now headed down to Houston with his Grandmother. He comes back on Sunday.

I will post when I hear from Gracie today...

Keep praying for a smooth recovery for Libby!

Jennifer

Libby's Latest

Well, the last news that I received was that Libby would be getting moved to a regular room today. I have not heard from Gracie today, and I am waiting to know more. I DID get to talk to Libby on the phone yesterday. I was talking to Gracie, and she asked to talk to me, just like normal! She does this when Gracie will call from the car or even at their house. She is real funny on the phone and always wants to know what I am doing, and then she will ask me "why"? She always wants to know what Reagie is doing and where is Blaynster? She usually asks where the girls are (Savannah and Whitney) and usually it is at school! She told me that she was watching TV and that she is being a good girl and being brave. It was so great to talk to her and to hear her soft voice. The last time I saw her she was unconscious, ...just got a message from Gracie. They are not in a room yet. They are waiting to have her "pacing wires" and a "chest tube" pulled. I will let you know what I hear next.....

On another note, it has been a crazy day, I had been to the school FOUR times by 11 o'clock this morning. I had to take Savannah to hand bell choir at 7:25, take carpool at 7:45, take Rudy at 8:15 and lunch with Savannah at 10:54....another fine example of what this "stay-at-home" mom does in a day!!!!

Thanks for checking in...

Rudy Goes to School

This week, Savannah is the Star Student. She gets to bring her pet to school. I tried to talk her into taking Reagan instead....that would be much easier on me, and probably more entertaining for the class. BUT, she really wants to take Rudy. Her class did a group writing lesson and used Rudy as their main character, so she wants her friends to meet him...so, I guess tomorrow, I will get to load up for 4 kids, got pick up carpool, take them all to school, come back home load up a dog and two kids and head to school for Savannah to show off Rudy outside with her classmates!!!!

Latest Libby News From Gracie

Just a quick update. We will stay in the ICU for at least another day as Libby's chest tubes are not working as well as they should, potentially creating a situation where the fluid could collect around her lungs which would be very bad. It is bad for anyone, but more so for her because of the way her circulation is now. Other than that, all is well. She is in good spirits, but tired. She sleeps a lot of the time, but has long periods where she is awake and calm. I am fine with staying in the ICU. The last 2 nights we had a room at the Ronald McDonald House that is in the hospital, but that is unlikely tonight since parents of new post-ops get first priority. So the couch in the waiting room may once again be our friend tonight!! At least it is a place to lie flat, and I got some ear plugs when I left the hospital last night to see the boys for awhile. They are en route to Keller with my mom who will hold down the fort this week. Please pray for safe travel for them, the boy's missing us (although I may be doing most of the mising), and continued improvement for Libby and lessened chest tube drainage so we can go home, be a family again, and do Libby's favorite things. She is making a list!!

Love, Gracie

Libby News

Libby is doing well. She is resting well and not having any major setbacks. Yesterday when they were finishing up inserting her chest tube, the nurse told Gracie that Libby started singing "Tomorrow" from the movie Annie. Then, Libby has been playing around and saying "boo" and "I love you the most" (when someone says "I love you") and she even tried to LICK Gracie. This was one of her newest Libby antics. I think that it has been really good for the family to see Libby being Libby! The boys got to go up to see her and actually got to go in the room. I don't know how they got permission for that, but I am glad for all of them that they did. Gracie's mom, the sitter and the boys are headed back today. Gracie and Eric will be there this week with some help from local Houston friends that they know. Eric comes back next Sunday to go back to work. I still may need to go next week during the week to be help to Gracie by taking a "Libby" rotation through the night. Thank you for being interested in what is going on with her. I will let you know when I know more....

THE Pile

Blayne, Savannah and John spent the day removing the mulch pile from our driveway!!! For those of you that have been to our house in the last year, you have seen a magnificent PILE of organic mulch that I had delivered last year. We had our youth group come on a work day and spread some of the mulch, but we still had a HUGE pile. It took John most of the day (with Blayne's help of course) to move the massive pile. It is so funny to me how it is just built in Blayne that when John is working he has this sense of I MUST go help...he grabs his miniature tools and runs to help! (Sweet) I wish the girls would come running to help when I am doing dishes or laundry...I guess that girls don't have that built in sense of "I must go and help"! It is neat to see my boy wanting to be just like his Daddy....good choice for a role model, I must say!

Some New Reagan Highlights

Reagan is really funny....not just taking her diaper off and peeing in the bed kind of funny! Now you can ask for a kiss and she will give you one. When you or she drops something, she says "uh-oh" or at least "uh"! When you say "sweet baby" she lays her head down on your chest really soft! She loves to look at the many framed pictures in our house. She can point out her siblings in pictures and I swear that she pointed at our wedding photo in my room today and said "skinny"....we all laughed! She continues to be a joy and delight!

Libby's Night

Libby had a restful night, and only awakened when the nurses woke her up. Her fluid is worse in that lung, so they will have to do something about that....whatever they do, it will NOT be fun! She is still at risk for so many complications...from infection to a collapsed lung, to pneumonia or heart related problems...it is a delicate situation for sure. Continue to pray for her! Thanks, Jennifer

Update From Gracie RE: Libby

Not too much to report here. The sedation medication is working well and Libby has mostly been resting. When she does wake up, she is groggy but not wild and trying to get out of bed. She hates the nasal cannula that is giving her oxygen. When she is awake, she pulls at it constantly. We've had lots of hurt feelings cries today. She is sooooo thirsty and constantly asking for water. She is very limited in how much she can have, so we ration it out. They are actually backing off on the sedation to try and find the happy medium of more awake but not dangerous. A few things to pray for:
1.her incision site on her chest is oozing the same fluid that is draining from her chest tubes. This increases her chance of infection, poor wound healing, and then there is the question of why it is oozing in the first place. Please pray that this stops and there are no complications
2. the thing that keeps Fontan kids in the hospital is chest tube drainage. They can't take them out (and we can't leave) until the drainage stops. Please pray that Lib's will slow and stop soon.
3. there is some fluid around her left lung. Dr Fraser was unable to put a chest tube on that side because the lung is stuck to the chest wall. If a lot of fluid collects there, they will have to figure out a way to get it out.
4. that we can find a better means of comforting Lib without all these drugs. It would be nice if she could be awake more

Thanks as always for checking on us. Eric and I were discussing yesterday that this is really a process, not an event. In other words, while making it through the surgery was big and very important, the following days are just as important if not more so. There are so many potential complication, both in the immediate period and beyond. Not that we ever thought this surgery would cure her. From the very beginning when I was pregnant with Libby, Dr Fraser called these "palliative" surgeries. That was shocking to us because I think of palliative care as being end of life/keep them comfortable care. His point is that they can never fix Libby's heart, only try to make things better. SO - we continue on this journey, learning so much about ourselves, God, and others. Thanks for walking with us.

Love, Gracie

Libby News

Thanks for praying. Libby had a good night last night. Gracie has not posted on carepages, but I talked with their sitter, Araenae, this morning. The boys are supposed to actually get to SEE Libby this morning. The doctor or someone is going to check them out to see that they are healthy enough to be in there! Pray that the visit goes well. The sitter told me that the Grandfather fainted yesterday while he was in the room with Libby. They think that it was a smell or something that got to him....hmmm, I guess I am around smells all of the time here because I didn't notice any smell! (just that sterile hospital smell!) Anyway, I am sure that was stressful for all. The sitter didn't know if he fell all the way to the floor or anything, you know me, I would have asked for ALL of the details! They did put him on a gurney and hooked him up to monitors to make sure that he was okay. I guess he checked out alright. Araenae has had the boys all week, but the family hosting them took the boys today and they are letting her have the day off. She was relaxing. Those boys are up at 6 AM every morning, so she has been having some long days! She's young, and can handle it.
Libby is resting better. She is less agitated and the nurse told Araenae yesterday that she is reacting like any child who has been sedated with this medication. So good to hear that she is doing what is "normal" for post surgery. The nurse said that after she gets some good rest, she will stop being so agitated. I will post more when I hear more......

Memaw's 81st Birthday

We took my Memaw out for her birthday tonight. She will be 81 tomorrow. We let her pick the place and we almost missed it because she wasn't real sure where it was!!!! Old people are a hoot! It was a delicious meal and they brought out a huge piece of cake and we sang "Happy Birthday" to her. It was a sweet time. (in more ways than one...yum!) We gave her a tile that has The Ten Commandments Cowgirl Style on it with her full name at the bottom...she is a country and western person all the way down to her cowgirl boots...she loved it! Of course, she loved the card from my brother and had to point out that he remembered her birthday AND got her card to her on time....she's a mess....but I love her!

Libby Update

(This is a picture of Gracie and Eric so you can have a visual of them!) Got a message from Gracie tonight. Libby has had a rough day. She is so hard to keep sedated because of all of the drugs they have had to use over her lifetime (three whole years). She is really fighting being in bed. They are having to physically hold her in the bed. They did take out the drain that was directly in her heart (I about threw up when I saw the nurse thumping on that thing to keep the blood from clotting, all I could think about was that thing was IN her heart and that couldn't feel good!!!), and the arterial line was removed today so they can actually hold her now. But, when they hold her, she wants back in bed, and then she wants them to hold her and so on....she has asked for water and they couldn't give her any until this afternoon and her response was "ahhhhhh". She has asked to go swimming, to ride in her stroller and to go home!!!! Poor thing. Gracie and Eric are exhausted. I am sure that this is both physically and emotionally draining on them. They also had to ask that the boys not come up tonight because it was taking both of them to restrain Libby. (The boys can't come and see her on the floor, but Gracie and Eric come down and see them, have a treat or something and just give them lovin', but not tonight. I am sure that was hard on all of them....including the sitter!!!!) Pray for all of the family. Here is a picture of those brothers: Mason and Camden! Libby is doing well, and I am happy that she is fighting mad....that is a GOOD thing!

Libby's Surgery

This is NOT a picture of Libby, it is another little girl that I follow on carepages, but this is what Libby looks like in the CVICU. This is pretty much how she is hooked up (+/-) some tubes and wires, and she is in a bed that has metal rails on the sides and her arms are tied at the wrists to it. And, her breathing tube was in her nose instead of her mouth like this sweet girl in the picture. But, yeah, that looks very similar to what Libby looks like.

Libby did great during her Fontan surgery. The word that her mother used was "seamless"! It was such a stressful day, and it was weird how it effected all of us. Imagine this, we are all driving to the hospital that morning...through Houston in unfamiliar traffic. We get out in the parking garage and walk over to Libby's van where they are unloading. Libby has tears in her eyes and from the redness in her face you can see that she has been crying. She says "Jenfer, whatcha doing?" I reminded her that I had said I would come and she says "oh!". She gets in her stoller and we all look like pack mules heading up to the 17th floor. In the elevator, she is laughing and being silly with her grandmother and me. You can see the strain in her parents' eyes. We head to the waiting room with her and she is excited to see her paternal grandparents there. She gets to greet them and we all drop our stuff into place for the day and she is called back to go to pre-op....what? That fast? So, mom and dad go up with her and we all just tell her goodbye....you can't help but wonder if it might be for the last time. My stomach was churning and my head started hurting. We all take a deep breath. We are all wearing coordination "Team Libby" shirts and we take up our section in the waiting room. More supporters show up. Not too long later Eric and Gracie return and they both look terrible. Teary eyed red faced, Gracie tells us "that didn't go well" she then tells us that Libby wasn't sedating with the drugs that they gave her to relax before she was taken back, so she was screaming (as best she could with a paralyzed vocal chord) she was saying "come on mommy, come on" , "mommmeeeee" and she was motioning for Gracie to come....poor Gracie.

About 20 minutes later, a guy that was sitting at the reception desk, who was from a foreign country and had a THICK accent, comes in and tells Gracie and Eric that the DOCTOR is coming down to see them....what??? DOCTOR??? isn't he supposed to be OPERATING??!!!??? We all got tense...turns out that he was mistaken, it was supposed to be a NURSE coming, and then, oops, actually the doctor hadn't planned to send anyone down just yet...that was just the beginning of a LONG day of waiting. They would come down and update every two hours. There was one other time that the foreign guy mistaking said DOCTOR instead of nurser and caused us all to panic because there was no way that surgery was complete....needless to say to those of you that KNOW me, I couldn't let that go and I later in the day talk to someone "more in charge" and let her know what had happened TWICE and that I think that it is important for these people to know that the terminology is VERY important. Gracie told me later that she thought that they were coming to tell her that Libby was gone, and all she could think about was how she was going to come out and face all of us.....how awful! (you have to imagine this...they are in a small conference room with the door closed and they have to come out each time and share the update with all of us STRESS!!!!)

We were all talking about how we were so stressed that we couldn't read. It was like you couldn't comprehend words on the page...it was weird! I stared blankly at a couple of magazines, and I couldn't remember anything that I had read, so I just gave up. And when they would call Gracie and Eric out for updates, I would feel like I was going to throw up!!! It was a long, hard day. And, you lose concept of time while you are there...weird.

Libby did well, with only a little complication at the end of the procedure where her heart had rhythm issues and it was beating REALLY fast but not "squeezing" appropriately. This medical team was prepared for this since she has done this in the past with her previous surgeries. It was such confirmation that Libby is in the right place being in Houston as opposed to here. They were able to extubate Libby last night ---finally, and she didn't have to stay on the life support system any after surgery. All seems to be going well. It was so neat to see her with pink toes and fingers. She looked really good. It was hard to see her strapped down and all of the tubes and wires, but it was also amazing to see her that way...what a MIRACLE!!!!!