Happy Easter

We had a great Easter.

Good Day

Rebekah's personality is really starting to show. She hates being put down and demands her pacifier continuously. Niya has enjoyed getting to be a regular big sister and follows Rebekah's every demand by trying to pacify her whenever I am unable to be in the room (using the bathroom is necessary). Rebekah had a wonderful day and has passed out for what I hope will be several hours.

Home at last

Rebekah came home pretty much uneventfully. We had to stop once because she was crying and needed a diaper change, but Niya was a super big helper and sat next to her and held her paci for her. As soon as she got home, she went straight to sleep.

Yay!

Rebekah should be going home Thursday!

:)

She is still doing well and tolerating the increase to g tube feeds from TP feeds. She seems to like being held and nothing else. :) Looking at going home either later this week or early next week.

Doing great!

Rebekah is doing so great! She is almost completely weened of her air flow (she's been on room air all day). She is sleeping most of the time. She will probably get to come home soon!

IMC

She is doing great in the intermediate side! She was fussy earlier but I picked her up and she went to sleep and has been snoozing ever since.

Yay!

So, Rebekah was successfully extubated yesterday and is on a medium flow with only 25% oxygen from her cannula. She is eating through a TP tube so there is no chance of reflux and she has been doing just fabulous. Hopefully, she is moving to intermediate in the morning - we will see!

Shaping Up

Today, Rebekah's heart surgeon released her from his care because her heart is now the size that it is supposed to be and within normal limits for her size and age. She has lost almost 10 oz since her surgery, but some weight loss was expected, especially with the amount of diuretics she's been getting through the iv. She is doing so well that they may extubate her again tomorrow. I pray that this time is successful and that it is safely done. Since her lungs are now almost clear of any fluid, it should be. I have felt very alone throughout this entire process. Niya has been with me the past 2 weeks because I took her out of public school and began homeschooling her, which has helped me because I could see my healthy child and help her process what has been going on with her sister. Matthew has been in Boone this whole time with the exception of his spring break when he spent Rebekah's surgery date at the hospital and then visited the short times in the two days following her surgery. It has been helpful to know that so many people are praying for Rebekah and our family and to know that people are there if I need to talk. Today I tapped into the resources available at the hospital and began to talk out some of my feelings while Niya spent time with my mom. That was nice as well. I hope and pray that the doctors will make the right decisions for Rebekah tomorrow.

They couldn't get the PIC line in but they got the TP line in maybe. The X-ray is inconclusive

2 forward 3 back

Last night, around 2 am, Rebekah's stars dropped dramatically (heart rate in 60s-70s and oxygen saturation in the 50s-70s and barely breathing). They could not get them to come back up so they kicked me out of the room while they took an hour to intubate her again. They had difficulty intubating her, so anesthesia came and did it- it took a total of 4 tries to be successful. They ha to use a paralytic so that she would be still and rest. They gave her medicine to increase her heart rate and gave her tons of oxygen to bring up her saturation. They are currently placing a PIC line and a temporary TP line so that she can have a long term iv and receive nutrition without the risk of aspiration. She is still very grey-looking and they are keeping her heavily sedated. It was very scary - I thought I almost lost her. At this point, I am begging God to let me keep my little girl because she just seems so frail and the doctors seem to think she will continue to be in the hospital for a long time when just yesterday they were setting things up to send her hope later this week. Life is so unpredictable. I hope that everyone who has a child in their life appreciates how much they are worth an how how quickly they can leave. This life we live is so precarious and it can be taken away in an instant. Make sure you hug your child today and that they know how much you care.

Rebekah had to be reintubated

Finally Extubated

She finally got her tube out late this morning. She was fighting it so much that they decided they had to take it out. She has been doing great. She is coughing and clearing a lot of stuff out of her lungs. They are hopeful that he will take a step down to intermediate tomorrow

Post-op day 4

Rebekah's white blood cell count is elevated and we think she may have a UTI. Her lungs are back worse again. I am praying harder than ever. I don't know what else to do.

Hmmmmm

Everyone is waiting to see what she will do. She is on day 3 of post-op and is not doing quite as well as the doctors would have hoped but she is not so bad that they want to jump to doing anything else either. Her heart rate keeps having intermittent decreases which is kind of scary. They think it is her reaction to one of the sleep medicines. She's still not out o the woods.

Stable

Rebekah has stabilized as the day has progressed. She continues to have a drop in stats every time she wakes up because she is ticked off about being tied down (they tied her arms to her legs because she kept trying to pull out her vent tube and arterial line). They did a heart echo and found that her PDA is still tied off, which is good. However, her left side is even smaller now and her ASD is larger and has a significant left to right shunt. She still has a long way to go before we will even think about taking her home.

Downward

Rebekah's lungs are more "wet" today and she is retaining fluid. They were hoping to extubate her today but the extra fluid causes swelling in her throat so they can't now. She had a fairly scary moment this morning where they have her sedation medication and her heart rate plummeted and several doctors, residents, nurses, respiratory therapists and heart specialists rushed in. They had to go back up in her breathing support. They also gave her some more meds. Then they did another heart echo and are saying she has left heart failure. They are giving meds for that now too. She's getting steroids to open her airway. She is on so many meds I can't remember them all. My older daughter is with me because she started being homeschooled this week. I am feeling a bit more stressed now, probably from lack of sleep so my mom is coming to see me.

Goodness

Rebekah kicked out her foot iv last night because she does not like things touching her feet. She did really well last night. Her left lung is almost back to her normal so it is recovering from collapse. They took out the drain that was in the incision site and the urine catheter so that's two tubes gone! Yay!

Alright

She came through the surgery successfully. She was moved to PICU around 2pm and settled around 3. She is fighting the sleep meds and is close to breathing on her own. They are having a bit of difficulty rein flaring the lung they had to collapse to do the surgery. She only had a PDA ligation because she has some aortic stenosis but to fix that would require major surgery that she couldn't handle yet. We do not know yet what the next step will be because she is still recovering and will be for the next week or so.

Heart surgery

She has been in for about an hour. Matthew, my mom, Matthew's mom, and I are getting some food while they are busy putting her under.

Surgery soon

Surgery is scheduled for 8am. Please pray that all goes well. I will post as soon as she is out of surgery.

Good day

Today Rebekah has been very happy and has shared her precious smile tons. The surgery is still scheduled for Wednesday.

Output

Rebekah doesn't seem to be doing so well with the oral Lasix. Her urine output has decreased dramatically. The doctor said she is only barely putting out the minimum of what is required of her to not go back on the iv Lasix. Other than that, she screamed for 4 hours in a row, nonstop today and then finally went to sleep and has been sleeping ever since. The surgery cannot come soon enough. I want my baby to feel better.

Less and More

Today, Rebekah had no reflux. I take full credit for this because I made the hospital personnel take her feeds back to straight breast milk and then work her back up to the calorie amount they wanted at the pace I told them to do it at. It worked. She also slept a ton more, especially after they got her another gel pillow. 

Surgery Date

The date for her surgery is Wednesday, March 13. It will be a closed heart procedure because the cardio team does not feel like her body is strong enough to withstand open heart surgery. They will go in through her left side and temporarily close  her PDA and watch what her heart does. They will also be able to see her aortic arch and see if it needs repair because they are still not certain that it does. If it needs to be repaired, then they will repair it at that time. If her heart still functions well enough to keep her alive with the PDA closed, then they will permanently close it. We are praying that she stays healthy and possibly gains some weight before the surgery.
Please also pray for Matthew. He is still sick. We would like him to be able to see Rebekah before the surgery. 

News Tomorrow

Today Rebekah has continued to recover from her cath lab procedure. She has been fussy and cranky when awake and slept only for short amounts of time. She has also been refluxing again. Because she had a fever yesterday, the doctors would not even consider open heart surgery for 6 weeks, I am told, so it will probably just be closed heart surgery which involves closing the PDA and fixing the coarctation. The cardio board will review and discuss her case in the morning so then we will know for sure exactly what will happen. Meanwhile, Niya is going to have her last day of public school tomorrow so that she can begin home school on Monday. Matthew has spring break next week, so hopefully he will be able to spend more time at the hospital with Rebekah and I. Hopefully, tomorrow will bring answers.

Waiting again

Rebekah has had a fairly lazy day of sleeping and recuperating from yesterday's procedure. She ran a fever of 103.5 for about an hour but they have her Tylenol and it has not returned so they are saying it was jut a reaction to the catheter because nothing has shown up on the cultures they drew. The cardiologists are arguing about how much of a surgery they should do right now but the consensus is that she has to have something.

Cath lab

The cath lab procedure went really well. Thankfully, my mom and Rebekah's paternal grandmother were able to be there, which was awesome. They found out that her heart and lungs are crapy and that she needs at least one surgery as soon as possible in order to continue living. She is currently still sedated and intubated.

Cath Lab Scheduled

Rebekah is doing well today, considering she is in the hospital and on tons of medications to help keep her that way. I spoke to the doctor doing the cath lab and the anesthesiologist resident that will be present tomorrow. She is scheduled to go down to the holding bay at 7AM and they should start the actual procedure around 8:30 and conclude around 10:30. While the risks involved are considered low and highly unlikely, there are a number of risks involved.

Visits and weight gain

 :) Rebekah is gaining weight again, which is awesome! Whenever she has an episode of needing to be suctioned, in combination with a Brady, she gets all riled up and then conks out. She's done fairly good today.

Room Air

Well, Rebekah is doing great compared to where she was this time last week. She is on room oxygen and her oxygen saturation is in the high 80s which is great for her. She is only getting 2L of flow (the amount of volume being pushed into her lungs through the nasal cannula. She has had to be suctioned every 2-3 hours, but she is tolerating her feedings of breastmilk fortified with soy concentrate very well. The ferrell bag, which allows her  tummy to vent air and pressure whenever she needs it to, has been marvelous! She hasn't had a productive reflux (meaning some stomach contents actually came up and out of her mouth or nose) since it was hung. It is just an extension and accessory to her feeding tube and I love it and think she does too. She is not a fan of her nasal cannula, but I understand that most babies aren't. She has been sleeping tons since the ferrell bag was hung which means we finally figured out a way to make  her feel her best which makes me happy. She has been able to enjoy some tummy time, though not too much, in her bed. She has been grunting less and has an overall lower respiration rate. All of these things indicate that she is being medically supported as much as she needs to be which makes me and my family very happy. Please continue to pray for her and for my family as we rapidly approach the cath lab on Tuesday.

Still waiting

Rebekah continues to have multiple bradys at night, but they never go critically low. They lost her iv sight in her neck and placed a new one in her left foot. The night nurse came in and is going to get her a ferrell bag to see if that will help release some of the pressure in her stomach. Hopefully, this will decrease her reflux as well. She has slept most of the day, only waking up to throw up with the reflux. She has been running a slightly high temperature which is concerning. She has somehow managed to get 1:1 nursing care which is unheard of, even in intensive care and she's in intermediate. She has had some very awesome nurses. She started on a soy fortifier for breast milk this morning, so maybe she will start gaining weight soon. Matthew and Niya are snowed into home, but hopefully they will be able to come down either Saturday or Sunday. Her symptoms make her diagnosis classified as heart failure. This is very worrisome. Please pray for her and for the doctors who are going to be working on her in the near future.

Brady

So, apparently her hear rate dipping down is not concerning unless it goes below 50 bpm. In the wee hours of the morning, she had tons of Brady episodes in which her other stats did not decrease. She also had to be suctioned several times, though those times did not coincide with the Bradys.
The intermediate side is completely empty now except for Rebekah. This means that there are less critically ill children! Praise The Lord for healing children. For Rebekah, this means that she will have to move because the hospital cannot afford to have 2 nurses to just the one her.
She still refluxes. It is worse than at home because it aggravates her sinuses and makes her produce more mucus. This is why she has to be suctioned so often. They cannot give a baby a decongestant, so they are going to try to give her Prevacid again. They also mentioned the possibility of a gj tube (it bypasses the stomach so there is nothing to reflux).