God alone is Sovereign

1 Chronicles 29:11

Yours, O LORD, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is yours. Yours is the kingdom, O LORD, and you are exalted as head above all.

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Sunday, January 31, 2010

Anna Grace - January 31

We has a great nnight last night. She ate every three hours & then went right back to sleep after each feeding. What a blessing that was!

I have to say that there is one thing I will really miss about the hospital. Having Anna Grace hooked up to the monitors (now that I have gotten used to the sound of them) has made me sleep easier. What I mean is, when Zachary was a baby when he would sleep soundly, I would wonder if he was OK. So I would queitly go into his rooom and listen to hear his breathing. Sometimes I couldn't hear it so I would lean down and see if I could feel his breath. When I couldn't tell I would gently disturb him and then he would move (so I knew he was OK) and then I would have to soothe him to get him back to sleep. With Anna Grace, I can just curl up on the sofa next to her bed and know that she is breathing fine because if she wasn't then every beeping buzzer and alarm would be soundly loudly and nurses would be running in the room. So, once we get home there will be no monitors and I will probably find myself creeping into her room in the middle of the night to check to see if she is breathing. I know I'm not the only Mom to do this :) So, I will miss the monitors - I never thought I would be saying that!

Life with a new born is quite an adventure. Thank you Lord for my sweet baby girl!

Saturday, January 30, 2010

Anna Grace - Saturday, January 30

Big news today.... the doctors have said that as long as everything progresses through the weekend as it has then they will be discharing Anna Grace on Monday after morning rounds!!!! Praise Jesus for hearing our prayers - for sustaining us and for healing and helping as only He can. We are thankful and we are humbeled. He has truly been merciful to our family.

We got all of our prescriptions filled for our little one yesterday - she has a BAG full of medicine to go home with. Also, her formula - Portagen - is also a prescription and they're going to let me know where I can get it once we get home. So, this weekend my goal is to learn how to "draw" her meds and administer her meds so that I will know how and be comfortable doing this once we get home. I am not a nurse nor do I have a medical background so this is all new for me. I am nervous about doing this - it's all important so I want to get it right.

My Mom is going to go to the store for us on Sunday to get some staple items for our fridge and also diapers & wipes for Anna Grace. Also, I had planned on feeding Anna Grace with Dr Brown's bottles, but she won't eat from them. She will only eat from Avent bottles - so my Mom is going to grab a few more Avent bottles for me since we only have one which the hospital gave us. Persnickety little girl :)

Just to let you know, once we get home we will be in quarantine for a little while most likely until cold & flu season is over - April perhaps??? So, visits from grown ups who are well are welcome, but we'll have to wait on having children over for a while. I know Zachary will have an adjustment to having no friends for a while, but at least we will be home & he will have Mommy & Daddy with him :)

Brian's parents are coming to the townhome on Sunday to help us pack up & CLEAN as we have truly made that townhouse our home over the last 5 - 6 weeks. The family who loaned us the townhome TRULY blessed us in allowing us to stay there. We are so thankful to this sweet, sweet family.

So, now we just go home & try and stay well and enjoy our family for the next few months and then it's back to Charleston for Anna Grace's second open heart surgery in about 5 months.....

Friday, January 29, 2010

Anna Grace - January 29

Last night at 9:30 pm Anna Grace had her NG tube pulled - HOORAY! So, she ate by mouth all night long (11:00 pm, 2:00 am, 5:00 am & 8:00am). Her numbers were OK - not great but OK so the doctor is going to let her keep the NG tube out today. As long as she keeps eating then she doesn't have to have the tube put back in. The hard part about having the tube pulled is that now she has to take all of her medications by mouth - UGH - she is on 6 several times a day and let me say she does not like them! But, she seems to be refluxing less now that the tube is gone so that makes eating easier & better.

She had her echo & her chest x ray this morning. I haven't talked to the doctor yet about the results, but if everything looks OK with both of those & she continues to eat through the weekend then they are talking about sending us home Monday or Tuesday..... The doctors are making rounds right now so I'm sure I'll be hearing shortly.

Please cocntinue to pray for her eating and for wisdom for the doctors to know when she is ready to leave the hospital.

Also, please pray for achary. He has really started acting out recently - I know this has been very difficult for him.

Thursday, January 28, 2010

Anna Grace - January 28 - Updated #3

Just wanted to let you know that at Anna Grace's 5:00 pm feeding she ate 57 ml by mouth. If she keep sit up during the night they'll take the NG tube out tomorrow - hopeful :)

Anna Grace - January 28 - Update #2

So far Anna Grace has been doing OK with the bottle, but not great. 11:00 - 35 ml; 2:00 - 45 ml. We'll see what 5:00 brings.

Got her blood results back and her potassium looks good - Praise God :)

Bath at 4:00 & then another bottle at 5:00. Hopefully the bath will recharge her & get her good & hungry for 5:00.

Brian is coming in from Spartanburg tonight late & he is coming straight to the hospital to let me go to the townhouse tonight. Please be praying for Brian tonight as he adjusts to the "night life" at the hospital with a newborn who has to take a bottle every three hours around the clock. It is nerve wracking work feeding Anna Grace, knowing when to push for more and when to back off so that she doesn't vomit. Every milli-liter counts and wanting her to succeed. Who knew bottle feeding could be such a challenge.

Thank you for being faithful to cover our Anna Grace in prayer :)

Anna Grace - January 28

Quick post thi smorning, but wanted to let you all know that we treid feeding Anna Grace by mouth yesterday four times: 26 ml, 40 ml, 51 ml and 30 ml. Since she did so well today the doctor has said that we won't feed her through the NG tube at all today we will "Demand Feed" her by mouth. So, when she's hungry she eats as much as she wants when she wants. This is in hopes of her starting to "feel" hungry and then desire to eat more by mouth. We re leaving the NG tube in for today in case she doesn't do well by mouth, but it is a step. If she does well eating by mouth today then we can lose the NG tube tomorrow. Please join us in praying for this. I fed her by mouth this morning and she took 35 ml. She really needs to be eating at least 50 ml by mouth per feed, so hoping that our next bottle will be better. I am glad the docotr is letting us try.

Also - she had blood drawn this morning to check her potassium level as elevated potassium is a side effect of her blood pressure medicine. Hoping it will be normal and that she can tolerate this medicine. Her blood pressure has been normal since she has been on the medicine.

Tomorrow she is having a chest x-ray & an echocardiogram just to check thigs out & be sure everything is as it should be.

So, again.... we are just praying for our little girl to eat.

Oh.... I fed her a bottle at 2:00 am last night - it was like having a "newborn" - I was tired, but so excited to be feeding my daughter a bottle in the middle of the night.

Mrs. B is on her way to the hospital with Zachary. I haven't seen him since Sunday so I'm glad to be able to spend even just a few minutes with him this morning.

Thank you all for continuing to pray for Anna Grace - that her tummy would be hungry and that she would have the desire and endurance to drink a bottle.....

If today goes well then we can start talking about going home.... can you imagine??????

Wednesday, January 27, 2010

Anna Grace - January 27

Last night was a better night than the night before. She slept pretty much through the night with the exception of a couple of dirty diapers that needed changing. Now, just to clarify, since she has been getting her food through the NG tube - Mommy has not had to get up every three hours to feed her like most Mommies of newborns have to do. However, I spoke with her doctor this morning who said that starting tomorrow (Thurs) that they think they are going to let me try to bottle feed her for every-other feeding, so that will mean that I will be attempting one middle of the night feed for her along with every other feeds during the day..... then it will start to feel a little more like life with a newborn :)

So, the doctors are still trying to find the right dose of blood pressure medicine for her. They are adjusting the amount again today to try to find the right balance for Anna Grace. She will have blood drawn tomorrow (Thurs) to check a few things.

Also - she will have an echo & a chest x-ray on Friday just to have a look & be sure everything looks OK.

Tuesday, January 26, 2010

Anna Grace - January 26

Anna Grace's doctors today started her on 30 minute compressed feeds - that is considered "fully compressed". So far so good.... we'll see how the rest of the day (and night) go. We have also tried twice today with the bottle - 19 ml by mouth the fisrt time, 22 ml by mouth the second time. We will try again for the third time at her 8:00 pm feeding. Please join us in praying that she take her WHOLE BOTTLE by mouth. The doctors have said that her feeds are the only thing keeping us here, so she just has to learn to eat by mouth. She seems to struggle with eating by mouth - she sucks several times before she swallows so I think she is still struggling with the suck/swallow concept. Also, after about 20 ml she just gets tired so I think it takes a lot of energy & concentration for her to eat. There's not really anything the doctors or I can do to help her learn, just practice & PRAY!

The doctors are still trying to find the right dosage of her blood pressure medicine to help regulate her blood pressue. It will take a few days they think to find the right dose for her & then as she grows her dosage will have to grow with her. They will take blood from her on Thursday just to make sure that everything with this medicine is working OK with her internally.

So, last night my little one was up from 1:30 to 5:30 am - just wanting to be held really. Pat & sway, pat & sway. When I would put her down she would wake up & cry so I would hold her - pat & sway - she would fall asleep in my arms and after she had been asleep about 10 minutes & I was SURE that she was completley asleep I would put her in bed & then I would lay down & as soon as I would lay down she would cry. So... that was our night time dance last night. Really, it was like having a "normal" newborn :) Can't complain about that except I am hoping for some sleep tonight. We'll see.

We also went for a walk this morning. We went outside but it was a little breezy so I brought her back into the hospital to walk the halls, but then I kept hearing people coughing (nervous Mommy) and then she started fussing so we headed back upstairs to our room - but we stayed unhooked for a little while so I was able to walk around the room with her. It was nice to be unhooked for a little while.

Zachary has been at his Mee-mee's lakehouse for the last couple of days, but he is now back in Charleston at the townhouse with my friend from Atlanta, Mrs. B. I called to talk with him this afternoon and Mrs. B asked him if he wanted to talk with Mommy, but he said "No, Maam" - he was at the playground playing. I'm thankful he's not waiting by the phone for my call, but he's clearly handling time away from Mommy better than Mommy is handling time away from Zachary. Today is his birthday - he is three years old today. His Mee-Maw had a party for him this weekend. His Mee-Mee had a party for him on Sunday and Mrs. B is going to have a party for him tonight. I am thankful that there are so many people to love on my son while I am not able to be with him. As hard as it is to be away, God is continuing to take care of us :)

I think I will never again take for granted the simple pleasure of having my family all together under one roof. Sigh.....

Josiah Wilson

This was posted on the Wilson's BLOG today regarding josiah's funeral service - I wanted to share this with you all. Please continue to pray for the Wilson Family.


Josiah Wilson

We will be having a memorial service for our precious baby on Thursday, January 28th at 6:30pm. The service will be held at Edwards Road Baptist Church.

Edwards Road Baptist Church
1050 Edwards Road
Greenville, SC 29615

For those who will be traveling from Charleston be advised that 385 Northbound is closed due to construction and you will have to continue on I-26 until you reach I-85 in Spartanburg. This will add an additional 30 minutes to your drive, however returning home you will be able to take 385 southbound. Please look carefully at a map to plan your trip.

We will be celebrating the life our son, Josiah, through this service and would love to celebrate with all who have been touched by Josiah's life. For those who have asked about and our interested in sending flowers or gifts please respect our wishes and do not send those. We will be setting up a fund in the next 24 hours to honor Josiah through a few organizations that are near to our hearts. Thank you so much.

Monday, January 25, 2010

Anna Grace - January 25 - Update #2

Just wanted to share with you all that today has been a really great day. No vomiting, very little crying. She also tried three times with the bottle today. 20 ml the first time, 26 ml the second time and 24 ml the thrid time - YEAH Anna Grace! It is progress and I am thankful.

Tested my new theory today - bath at 4:00 - worked great - walk at 6:45 pm - worked great. I'll try that again tomorrow & see if we get the same results - if so, then I will be making this a daily routine!

I also had my sweet friend, Mrs. L here today. She basically held and rocked my baby for about 5 hours today. I was able to eat uninterrupted and also take a LONG shower AND blow dry my hair. It was so nice to have the company & have some girl talk and the extra set of hands. She's leaving to go home first thing in the morning - she was truly a blessing today!!!!

Today Anna Grace is 4 weeks old - I can't beleive we have been here for 4 weeks now!!!! Also, tomorrow is Zachary's birthday - he is going to be three years old. I probably won't get to see him tomorrow and I am sad about that, but hoping to see him Thursday & celebrate his special day with him then!!!

Anna Grace - January 25

Anna Grace had a rough night last night. Lots of crying, vomiting & then Mommy begging for Oxycodone to give Anna Grace some relief. She finally fell asleep about 11:30 last night and slept soundly after such an eventful evening.

My bath theory did not work, I thought it would wear her out & help her sleep, but I think it just wound her up more. The doctors said I could take her for a 30 minute walk today, so I think my new theory for the day will be to save the walk for tonight at 7:00 (her fussy time) to see if the walk outside will help calm her down & then hopefully we won't have a repeat of last night. The doctors also said if we need to skip the evening feed to give her some relief we could do that as well. We'll see how she does.

So, we worked with the occupational therapist this mornig with the bottle - she took about 20 ml by mouth & then took the rest through her NG tube. The doctors said we could practice with the bottle three times today. I'm glad - practice makes perfect right???

The feeds are the only thing keeping us in the hospital so it's frusterating - continuing to pray for her to tolerate the Portagen (no crying or vomiting) and for her to learn to drink from a bottle. Still lots of skills for our little one to learn.

I also want to share that a sweet from of mine, Mrs. L, came from Spartanburg yesterday just to hang out with me in the hospital & lend an extra set of hands. It has truly been a blessing having her here to rock Anna Grace and soothe her while she is fussing and I am doing other things (like eating, pumping and blogging). What a blessing she is. She is going home this evening & I will miss her, but the Lord sent her to me at just the right time (as God's timing is always perfect)! Thank you Lord for taking care of me :)

Since Mrs. L was here to be with Anna Grace yesterday evening I was able to go to the PCICU waiting room and see the Wilson family for a few minutes. I prayed over Erin & Milo quietly and then left as their pastor had just arrived. PLEASE continue to pray for the Wilson family as they grieve over the loss of their son, Josiah. Peace, comfort & strength for them in the ooming days, weeks & months as they adjust to their new life without Josiah.

Sunday, January 24, 2010

Anna Grace - January 24 - Update #2

Anna Grace went for her first "walk" outside today. The doctors said that we could "unhook" her for 15 minutes so we loaded her up in a stroller and the whole family went outside into the fresh air. It was her first time outside. She basically crashed out as soon as the stroller started moving. She was asleep by the time we actually got outside. Another tip for Mommy to remember when she starts getting fussy.... load her up in the stroller :)

It was a sweet time even though it was only for a few minutes. As long as the weather permits I'd like to make it part of our daily routine. It was good for me too :)

Her feeds were compressed to 45 minutes today - she seems to be tolerating it OK - no vomiting, but lots of fussing during the feeds. We tried twice with the bottle today. She drank 12 ml by mouth the first time and she drank 25 ml by mouth the second time. It's slow, but it progress. Please continue to pray that she will be able to take ALL her food by mouth - then we won't have to talk permanent feeding tube....

Also, my prayer warriors, I would like to ask you to pray for the Wilson family. They have a little heart baby named Josiah who just turned 8 months old. We have gotten to know the family here at MUSC. They are Christians and their little boy has HLHS. Josiah went to be with Jesus today. My heart breaks for Josiah's parents. Pray for comfort and peace and strength for them in the coming days. You can check out their blog at www.thewilsonheart.blogspot.com - Trusting God......

Anna Grace - January 24

It's still pretty early, only 9:00 am. We had a pretty good night last night. One little spit up at 3:00 am but that was due to the nurses trying to get vitals right after a feed (that's a no-no). She slept pretty good which means Mommy slept pretty good. What a blessing!

The doctors have not made rounds yet today, but I think that the goal today is to work with the bottle twice today & pray for no vomiting. I don't know if they'll compress her feeds to 45 minutes today or if they'll wait until tomorrow to do that. The goal is to get to 30 minute compressed feeds. We'll see.

On a lighter note, I gave Anna Grace a sponge bath for the first time yesterday about 4:00 pm. She creid & she cried during the whole thing but she really did need a bath. Since she has an IV in her foot I couldn't put her in the tub. After the bath she slept solid for about 2 hours. I think tonight I will do bath time around 8:00 pm :) Her hair was all fuzzy & she smelled so good after her bath - even with all the crying it was such a treat.

Brian is heading back to Spartanburg today and Zachary is heading to Columbia to stay with his grandparents for a couple of days. I think a friend from Spartanburg is coming down to Charleston to stay with me for a day or so and keep me company and lend an extra set of hands. What a treat!!!

Praying today for Anna Grace's tummy to tolerate the food and for her to increase the amount of ml's she takes by bottle. Also, for her blood pressure to regulate now that she has started these new meds.

Saturday, January 23, 2010

Anna Grace - January 23

So.... Anna Grace passed her swallow study on Friday. PRAISE THE LORD - it is such a blessing. So, Friday afternoon I worked with the occupational therapist to feed her the very first bottle. She took about 20 ml from the bottle & then finished the rest of her feed through the NG tube. The doctors want her to try twice a day with the bottle - she can drink as much as she can tolerate from the bottle & then finish her feed through the NG tube. Maybe on Monday the docotrs will allow her to start trying three times a day with the bottle???? We'll see. It is thrilling to see her beginning to learn to eat from the bottle, truly, how I took the simple act of feeding Zachary for granted. Now with Anna Grace it is an exciting new adventure!

She also started her blood pressure medication and he blood pressure has been much better. They are going to draw more blood from her on Monday to make sure that everything is OK with the new medication, but so far so good.

She is finished with her antibiotics and although the place on her chest is not healed yet - the doctors feel confident that it is not infected and the as she starts taking in more calories her body will be able to heal that place on its own.

I spent two nights at the townhome & am feel refresed and like a new woman! A friend from Greenville came to Chalreston to keep Zachary for me on Thurs & Fri and I was able to spend a little time with her, I got my eyebrows waxed and bought two new pairs of jeans since I could not keep the other ones up :) It's amazing how much better I feel after having two full nights sleep - although, Brian is now back at the townhome catching up on his rest after being up for the last two nights at the hospital. I am SO, So, SO thankful for my sweet husband - he worked all week & still wanted to give me a rest. He is a blessing and I do not take him for granted.

My parents are also here from Spartanburg to keep up with Zach this weekend so that Brian can rest while I'm up at the hospital. Life is chaotic, but the Lord is sustaining us.

Friday, January 22, 2010

Anna Grace - January 22

Brian came up to the hospital on Thursday afternoon and let me go home for a much needed shower, some Zachary time, a good meal and a full night sleep. It was such a blessing to be able to step away for a little while.

Yesterday Anna Grace was started on 1 hour compressed feeds. She did OK but not great. She had some vomiting and lots of crying during most of yesterday afternoon and evening. The nurses ended up putting her back on 1 ½ hour compressed feeds for a while to give her tummy time to settle before moving her back up to 1 hour compressed feeds. The nurses finally had to give her some Oxycodone to help her settle down. It was a big day for her and I think stressful and trying for Daddy to see her like that. Brian said she fell asleep last night about 11:30 pm and slept quietly through the night. She has been on 1 hour compressed feeds today and seems to be OK. She will be having her swallow study today at 1:00 pm. Please be praying that she PASSES so that we can start working with her on taking a bottle by mouth.

Also, we have been trying for the last two days to get a urine sample from Anna Grace for some labs the doctors need. They have tried twice to cath her with no success. Then they tried taping a bag to her little private area to catch the urine, but the urine keeps leaking out of the bag. This morning Mee-Mee came up with the idea of sitting her in a bucket to catch the urine. So…. As I type Mee-mee is holding Anna Grace in a bucket in hopes of catching urine (with no bowel movement) in the bucket. Interesting……

The doctors will be starting Anna Grace on blood pressure medicine today. She is staying on 1 hour compressed feeds today. Please join us in praying over this for Anna Grace.

Zachary’s birthday is coming up this week – he will be three years old. I am hoping that even in the midst of the chaos that we can still make this a special time for him. I’m going to try to make time today to buy him a birthday present. He is being such a big boy, but it has been hard for him being away from his parents for such an extended period of time.

Wednesday, January 20, 2010

Anna Grace - January 20 - Update #2

It has been yet another eventful day in the life of Anna Grace.

Feeds: Her feeds were compressed to 1 ½ hours today. As I type right now she has not had any spit up or vomiting today. Praise the Lord – it truly has been an answer to prayer. I was told today that they have ordered her swallow study for Thursday. If she “passes” her swallow study then they will let me start trying to feed her with a bottle working towards getting her off the NG tube. She is 3 ½ weeks old now and has never eaten by mouth. I’m told babies who have never eaten by mouth have a hard time learning this skill – we have been and will continue to work with her occupational therapist in helping her learn how to eat by mouth. Currently she has a daily session with the occupational therapist helping her to “use” her mouth so that she is used to having something in her mouth in hopes that when it is time to introduce a bottle that she will not reject it.

Blood Pressure: Anna Grace had a kidney ultrasound today as kidney function and blood pressure apparently are related. Her kidney ultrasound revealed that she has an abnormality with her left kidney. They have taken some blood from Anna Grace and sent it to a lab for some test to see if she has “renal” or “adrenal” problems. They said it could take a few weeks to get those test results back. In the mean time – they are going to start her on blood pressure medicine – probably tomorrow – to help get her blood pressure into an acceptable range. I feel bad that she needs yet another medication, but at the same time, I don’t want any undue stress on her already taxed heart.

High Heart Rate: The last couple of days Anna Grace’s heart rate has become elevated. The doctors are not sure why and have ordered some tests to look at things. We’ll see. Her heart rate is still in an acceptable limit, but on the high side. She also started running a fever today – more tests to try to determine the cause.

Incision Site: The “infection” on her incision site the doctors looked at today & said that it looked about the same still.

Things to pray for: Fever to come down, heart rate to come down, blood pressure to come down, ability to tolerate compressed feeds, “passing” her swallow study tomorrow, rest tonight (for Anna Grace & Mommy), discernment for the doctors.

Praise God that Anna Grace was able to tolerate her 1 ½ hour compressed feeds so far today with no spit up or vomiting. Thank you Lord for compassionate nurses and doctors. Thank you Lord for our family who has been caring for Zachary and who continue to encourage us through this journey, Thank you also Lord for the wonderful friends you have given us and the prayer warriors that they are for our family.

I am weary today. It has been a long week with so many new hurdles – unexpected hurdles. Brian will be here tomorrow to let me go to the townhouse & rest. What a great hubby he is – working, commuting and doing hospital duty. This is a hard journey – as a parent, especially for me who tends to be a bit of a control freak by nature – God is slowly teaching me to LET GO and I keep trying to fight Him on this. Ugh.

Anna Grace - January 20

It's still pretty early on Wednesday so the doctor has not yet made his rounds today - but I was told that we would be starting Anna Grace on 1 1/2 hour compressed feeds today. She didn't do great yesterday on the 2 hour compressed feeds - she threw up twice yesterday, so I am praying that she will be able to tolerate the 1 1/2 hour compression & that we don't stall out here. I am going to start trying to write down everything that is going on during the times she throws up to see if I can find some sort of a pattern - does it happen after diaper changes - does it happen after hiccups, etc..... There may not be a pattern, but I'm going to try to chart it today to see if there is anything to it. We'll see.

We haven't had the kidney ultrasound yet so I still don't know about that.

I have asked the docotrs if we can hold off on starting the blood pressure meds untl we are finished with the antibiotics. We have three more days of antibiotics and I would really like to wait before adding yet ANOTHER medication into my little girl's body. I am hoping they will indulge me if it is safe for Anna Grace to wait a few days.

So... praying today for her kidneys, for no vomiting, for her incision, for the LORD to lower her blood pressure and that no medication will be needed :)

Thank you friends for continuing to be faithful to pray for us. We still desperatley need our prayer warriors!

P.S. - Got about 5 1/2 hours of sleep last night - not consecutive, but still, 5 1/2 hours.

Tuesday, January 19, 2010

Anna Grace - January 19

Today has been a busy & eventful day.

Last night Anna Grace's heart rate started running high. The doctor on call said that we need to "watch it" but that it was still in "normal" range even though it was a bit on the high side. Please be praying about this for Anna Grace - today it seems better.

Today in talking with her cardiologist we realized that her blood pressure has been consistently WAY OVER normal blood pressure limits. So, he spoke with Dr bradley who spoke with me. Dr bradley said that she might be having a problem with her kidneys which could be causing her blood presure to be high. He has ordered an ultrasound of her kidneys. Please be praying there is NOTHING wrong with her kidneys that the ultrasounds shows healthy, normal kindeys. either way... I think that he is going to start Anna Grace on blood pressure medicine. I feel so bad, she is on SO MANY medicaations - I know they are all needed, but I wonder of the long term side effects for her because of it. Please join us in praying over this for Anna Grace.

She started on 2 hour compressed feeds today. It usually takes about 12 hours before problems start to arise, so please join us in praying that she is able to tolerate the 2 hour compressed feeds. That will bring her one step closer to home :)

Dr.. Bradley looked at the incision site on her chest and said that he thought it looked OK. She was switched from IV antibiotics to oral antibiotics today. Four more days of antibiotics as long as things continue to heal as they have been.

Anna Grace also had the pacing wires that were in her chest removed today. One less thing invasive in her body - hooray!

Please continue to pray for Anna Grace - her kidneys, her blood pressure, her heart rate, her feeds, her incision. There is still so much to be in prayer for. Thank you friends.

Monday, January 18, 2010

Anna Grace - January 18 - Update #2

So, Anna Grace was started on compressed feeds (2 1/2 hours) at 11:30 am this morning. Please pray that she will be able to tolerate this with no problems. If she does fine then tomorrow feeds will be compressed to 2 hours.

Right now she is sleeping peacefully. Her nurse gave her a bath today while I was in the playroom with Zachary. Her little hair is all clean & fuzzy from the bath & she smells so sweet. I think the bath wore her out, but I'm glad my little girl is clean.

Zachary & I had so much fun playing together. He of course cried when it was time to go, but my parents will bring him back up again tomorrow morning for a couple hours of "Mommy time" in the playroom.

Oh... the doctors said her incision site looked "about the same" today - so.... we're staying the same course for treatment.

Anna Grace - January 18

As far as nights go, last night was about the best night we've had in the last three weeks (yes, Anna Grace is 3 weeks old today)! Anna Grace slept virtually through the night with the exception of about 3 bowel movements which woke her up, but after she was changed and swaddled she went right back to sleep. I would say we got about 5 1/2 hours of sleep last night!!!!!!! Thank you Lord for giving us rest - thank you for answering this prayer :)

Also, at 11:30 pm last night Anna Grace's feeds were increased to 24 ml per hour. She hasn't had any trouble with the increase - again Lord we PRAISE you. The doctors have no control over how the babies here will do and neither does Anna Grace for that matter - it is ONLY our merciful LORD GOD and HE has indeed been merciful with Anna Grace. May I never take these gifts for granted or forget these blessings. Small as they might seem to some, they are HUGE to me and our family. Thank you Lord.

So, I haven't talked with her doctor yet this morning. They usually make rounds about 10:00 - but I think the plan is going to be to increase her feeds from 24 ml per hour to 25 ml per hour (which is her goal) and then let her stay there for about 4 hours & then to start compressing her feeds starting at 2 1/2 hours. Praying that God will again show mercy with Anna Grace and allow her to tolerate the compressing of her feeds.

Praying also that there is some improvement with the infection on her incision site.

I also would like to PRAISE GOD that Anna Grace's stats have all been steady & right where they want them - her Oxygen saturation levels for a single ventricle baby are good as well as her heart rate & respiratory rate.

Zachay and my parents will be up here this morning at some point and I am looking forward to an hour of playtime with Zachary in the awesome playroom they have here at the MUSC children's hospital. He REALLY loves this playroom! Can't wait to see my little boy :)

Also, since the chest tube was removed yesterday I can now hold Anna Grace. She still has the NG tube, pacing wires, Leads on her chest , an IV in her foot and a monitor on her other foot so it's not just as simple as scooping her up when I want to - but at least I can now hold her and I LOVE IT :) Sweet, sweet, sweet!!!!!!!!!!

Sunday, January 17, 2010

Anna Grace - January 17 - Update #3

So.... the surgeon came by this morning & removed Anna Grace's chest tube. Praise God, thank you Lord! He also looked at Anna Grace's infection site and decided that it did not need to be packed. We are going to continue to treat it with a dressing & IV antibiotics as we have been doing & watch it closley.

Anna Grace has been sleeping all day today - literally, she has only been awake about a hour for the whole day - I wonder what kind of night we'll have??????

We also changed rooms today - we were in a small patient room & there is one large patient room on our floor which opened up today. It is for heart patients who have a long stay at MUSC and they gave that room to us. I'm thankful that we have a larger room, but sad that we need it :(

Anna Grace's feeds were increased to 21 ml today & she has tolerated it fine (hence the sleeping.....) so tonight at 11:30 pm her feeds will be increased to 24 ml per hour. Praying that goes well......

Brian went home today & Zachary is staying in Charleston this week with my parents. I think they are going to bring him to the hospital tomorrow for a couple of hours to let me see him & get some Zachary hugs & kisses :)

So, please continue to pray for Anna Garce to tolerate feeds, that her infection on her incision site heals and that she sleeps through the night tonight (so Mommy can sleep tonight) :)

Praise God for hearing our prayers - He does hear our cries.

Anna Grace - January 17 - Update #2

The doctor this morning (Dr Saul) decided he wanted Dr. Shaw (a surgeon) to look at her infection site on her chest to be sure that "packing" it was all we need to do. Just waiting on him to come by.....

Also, I think he is going to pull her chest tube while he is here - YEAH!

Increased her feeds from 18 ml per hour to 21 ml per hour. Please pray that she is able to tolerate the increase. If she does, then we are scheduled to increase to 24 ml per hour at 11:30 pm tonight. Then tomorrow increase to 25 ml per hour, which is her goal.

Praying that the infection doesn't set us back with feeding. Praying for God's healing hand on her little chest.

Anna Grace - January 17

Well, last night was a pretty good night.She had about 4 hours of uninterrupted sleep (in the bouncy seat) which means that Mommy had 4 hours of uninterrupted sleep. THANK YOU LORD for your mercy and for hearing my cry!

About 4:00 am she spit up so we had to clean her up - then it was time for her IV antibiotics at which time the nurse discovered the IV was no longer any good, then Anna Grace pulled her NG tube out of her nose. So, the nurse suggested I take a walk and they put in a new NG tube and IV ( it is now in her little foot) and changed her diaper. Poor baby, it is so hard to see your little one in pain. My heart truly breaks for her. I found a little chapel at the hospital during this procedure and went there and prayed and CALLED OUT TO GOD for my daughter and wept tears over her. Hard. Trying to focus on the ONE who calms the storms and NOT on the storm.

Then the nurse was changing the dressing on her infection site on her chest & thought that it didn't look good. So the doctor had a look this morning - it has been decided that we need to start "packing the infection site". The nurses said that it would hurt, but that it might help this to heal. There was also so talk about changing her antibiotic, but I think the jury is still out on that. So, please PRAY that this infection can get under control and that her little chest can start to HEAL. Infections can turn serious quickly so PLEASE join us in praying over this for Anna Grace.

They have already taken a chest x-ray this morning & if it shows no fluid build up today then I feel pretty confident that they will take out her chest tube today.

Also, I don't think a decision has been made completley yet, but I think they will increase her feeds a little today & see how she tolerates that. She is still at 18 ml per hour continuous and her goal is 25 ml per hour.

So, yet another big day for Anna Grace.

Thank you Lord for rest last night, thank you Lord for our sweet nurse, thank you Lord that your hear our cries.

Saturday, January 16, 2010

Anna Grace - January 16 - Update #2

Well, Brian arrived at the hospital in perfect time.... I left the hospital around 11:30 to head back to the townhome for food, shower & rest. It was just what I needed. Truly.

Brian said they did another chest x-ray on Anna Grace today and that she might be getting her chest tube out tomorrow?????? I have learned that we take things "day-by-day" here so we'll see what tomorrow will bring. But that was certainly promising news - Lord willing, we will lose a chest tube tomorrow.

Also, the hospital was able to round up a vibrating bouncy seat for Anna Grace. She has been in it all day & I plan to leave her in it tonight. She seems to like it. Zachary hated the bouncy seat & screamed & criend whenever I would put him in it, but Anna Grace sems to enjoy it so HOORAY for the bouncy seat.

Brian said that she spit up twice today & threw up once today. Not great, but not awful either. I think this is just how it's going to be for our little Anna Grace.

Brian left the hospital around 8:00 pm to head back to the townhome for much needed rest. Praying for a good night of rest for us all.

Anna Grace - January 16

Well, last night about 8:00 pm the nurse came in to change the dressing on her chest (because she still has an infection on her incision site) and to give her her 8:00 meds. When she was doing this she suspected that Anna IV's might have become misplaced in her little hand so she had to fiddle and fool with it until she could determine that it was still a good IV. After that it was a dressing change on her chest & then a diaper change. And then as soon as we put the clean diaper on she had another bowel movement so yet another diaper change. The whole while Anna Grace was crying & crying - it took about an hour to do all this & when we finally got her swaddled & settled into bed she threw up all over herself & everything. So we had to change her sheets, her chest dressing & her clothes. This took another 45 minutes. We turned off her feeds for about 2 hours to give her tummy time to rest after vomiting. It was heart wrenching.

I came up with a theory that I wanted to test... I don't think her tummy loves the Portagen, but I don't think it is making her throw up - I think the vomiting is a result of the excessive crying so last night I resolved to do whatever it took to keep her from crying. So, basically I stood by her bed for the night & kept her paci in her mouth. She & I did sleep from 11:00 - 1:45 & then again from 4:45 - 6:00. But, no vomiting last night.

So..... how does one keep a baby from crying???? If she vomits we have to turn her feeds off & that sets us back from moving forward with increasing her ml per hour to her target of 25 ml per hour (right now she is at 18 ml per hour). So... at least for right now my goal is to keep Anna Grace from crying.

Please pray for me as it is exhausting - I know she doesn't feel good - her tummy hurts from this formula, she still has a chest tube in & she has an infection on her incision site. Not to mention she had open heart surgery not even 2 weeks ago so I know her little body must still be so sore from having her chest opened. Please pray for healing and rest for Anna Grace.

I was weeping & crying out to the Lord over her this morning. There is really nothing the doctors can do for her with regards to this - only our Lord who is the GREAT PHYSICIAN can help Anna Grace right now.

Brian will be up here in a few hours to relieve me for a little while. I hope to go back to the townhome & try to take a nap to prepare for another long night tonight. I sure will miss him when he goes back to Spartanburg on Sunday.

Friday, January 15, 2010

Anna Grace - January 15 - Update #3

It's 7:00 pm & Anna Grace is peacefully sleeping right now, so I thought I would take advantage of the time & make a quick post. Brian left the hospital about 30 minutes ago to head back to the townhome for some Zachary time & dinner. I am settled in for the night at the hospital, I have already put my PJ's on!

Brian said that Anna Grace vomited twice while I was gone. The nurse stopped her feeds for a couple of hours to give her tummy time to rest. The nurse also gave her a bath & got her cleaned up & dressed in a clean t-shirt. They restarted her feeds about 5:00 pm. She is still at 18 ml per hour continuous.

I am praying that she will have a restful night and that we can both get some much needed sleep. Overall it was a pretty good day, she had some great nurses today and that really helps.

Thank you Lord for giving us a better day today and for my sweet husband who let me rest today. Also, for my parents who cared for Zachary while Brian & I took care of Anna Grace.

"Pour out your heart like water before the face of the Lord. Lift your hands toward Him for the life of your young children" Lam. 2:19

Anna Grace - January 15 - Update #2

Well I’ve relieved Tina for a few hours. Hopefully she will be able to catch a nap before heading back up here in a few hours. Currently I’m sitting here listening to her chest tube gurgle. The nurse just took a reading and it seems nothing more is coming out so the doctors might be removing it tomorrow.

She is currently up at 18ml per hour feeds. She has not spit up yet which is a praise, but the formula seems to not be setting well on her stomach. She seems to rest for just a few minutes and then starts crying again. I’ve only been here a couple of hours and it’s very trying on the soul. I feel so bad for Tina who has been dealing with this for the last few days.

Tina will I’m sure give a more detailed update later this evening. As for right now I’m trying to rest in God’s word –

Lamentations 3:31-32

“For the Lord will not cast off forever, but, though he cause grief, he will have compassion according to the abundance of his steadfast love…”

Anna Grace - January 15

Just a quick note about last night. At 9:00 pm she was put on 12 ml per hour of Portagen which she appeared to tolerate fine. At 1:00 am they increased her feeds to 20 ml per hour. By 2:00 am she was screaming & crying and inconsalable (but she never threw up). We had an awesome nurse last night (PRAISE GOD) who decided at 2:00 am to turn off the feeds & call the doctor. The doctor said give her tummy a little time to rest & then decrease feed to 16 ml per hour & see how she tolerates it. By about 3:30 am Anna Grace had stopped crying and calmed down. At 4:00 am we turned the feeds back on at 16 ml per hour. She appeared to tolerate that fine. At 6:00 am we increased feeds to 18 ml per hour and I'll be confident by about 8:00 am if she'll be able to tolerate that. Her ultimate goal is 25 ml per hour continuous feeds and THEN to start compressing. I have a feeling our little one will let us know when it is too much. For now, I am thankful for an overall pretty good night. I did manage to get a couple hours sleep tonight. Also, Anna Grace's nurse tonight has been awesome and that has made such a big difference for us. Thank you Lord. Also, thank you friends for praying for us....

Thursday, January 14, 2010

Anna Grace - January 14 - Update #3

The doctors decided to stop the Infaport (YEAH) - they said that she was not able to tolerate it. They stopped the feeds, put her on IV fluids and then decided to try her on Portagen - the only other formula that she will be able to take with her Chylothorax. PLEASE PRAY that she can tolerate it.

She has started on the Portagen about 2 hours ago. The took her down to only 4 ml per hour in continuos feeds. At 9:00 pm they will up her to 12 ml per hour and then at 1:00 am they will up her to 20 ml per hour. PLEASE PRAY for no vomiting and no stomach pain and that she will be able to tolerate the dormula and rest. She has been so sick for the last day. My guess is that is she's going to have problems I'll know about 3:00 am........

Also, as we speak her NG tube got clogged so the nurses are having to change it out - just a very long, long day for Anna Grace today. Anna Grace is crying and gagging as they try to fix this tube.

I am thankful today that my Dad & Step Mom arrived from Texas and that Brian & Zachary got here from Spartanburg. Brian came & relieved me for a few hours so I could go to the townhouse & pack a bag & take a shower. I also got to hold & hug my son today - I am so thankful for that. Also, my MOPS group is praying collectively for us tomorrow morning at 6:00 am - I am thankful for friends who are so faithful to continue to pray for us - holding my arms up because I am too weary to do it myself. Thank you Lord for these blessings. Thank you Lord that we can approach your throne with freedom & confidence.

Anna Grace - January 14 - Update #2

Well, the doctors made their rounds this morning & decided that Anna Grace's problem might not be the formula but that she might not be able to olerate the compressed feeds. So they kept her on the formula and changed her back to continuous feeds. I told them that I didn't think that was the problem, but they said they wanted to try this for 24 hours and see. So, the started her back oon the Infaport on continuous feeds and as soon as they started the formula back she started crying, & crying. Her heart rate got into the 200's - I finally paged her nurse and said to page the doctor. The doctor said to stop the feeds & they would talk and decide what to do. As soon as they turned off the feeds she stopped crying. She is sleeping now. I am truly thankful for that. They have started her back on IV fluids until they can figure out what to do. Since she has been off the breast milk the fluid in her chest has stopped, but she cries constantly and throws up on the Infaport. What to do....... they said it is uncommon for babies to not be able to tolerate the formula..... I think they are surprised by Anna Grace's reaction to the Infaport. It is hard. Praying for God to give discernment, relief for Anna Grace and strength for Mommy. I have been crying all morning. It is hard not to when your little one is hurting and there is nothing you can do.

Anna Grace - January 14

Well, the doctors told me that feeding might be our biggest hurdle of all and that has certainly proven to be the case for Anna Grace so far. The formula they started her on yesterday, infaport has caused her to vomit. She doesn't appear to be able to tolerate it. After the last round of vomiting this morning I begged them to turn it off. They finally did and now the doctors are putting their heads together to figure out what to do next. She can't have regular formula and che can't have breast milk. There is one other formula they can try, it is called Portagen. I'm not sure what they're going to decide to do, but I have just been beside myself all night watching my daughter cry and vomit. It is hard. Please pray for discernment for the doctors of how to handle this new hurdle.

I am sad today, for my daughter who has been sick all night..... for Zachary who I haven't spent any time with in almost three weeks. Lord please help me to see what you are trying to teach me.

Wednesday, January 13, 2010

Anna Grace- January 13

Well, today is another big day for Anna Grace. It seems that everyday is a big day for our little one. We moved from PCICU today to 7C. I was reluctant to go, it's scary leaving the one-on-one care of PCICU to being in your own room with nurses down the hall. The doctors said that Anna Grace was ready (Mommy was the one who was not....) But, we made the trip and are getting settled in. Anna Grace still has a chest tube in so please continue to pray for the fluid in her chest to stop so that we can lose the chest tube for good. Also, Dr bradley suspected yesterday that she might be starting an infection on the incision on her chest so he ordered her to start antibiotics. So we are back on IV antibiotics (which means hello diaper rash). Please be praying that the antibiotics will prevent this from turing into a "big" infection or a big deal. Also, pray for her bottom. I know it sounds insignifant, but it is so uncomfortable for her when her bottom is raw. They have compressed her feeds to 1 1/2 hours now and this has caused her to start spitting up so the doctors have put her on three new medications for refulx: Reglan, Zantac and Prilosec. They said that it is very common for heart babies to suffer from reflux and so since Anna Grace is now getting more food during a compressed period the refulx is rearing it's ugly head. So, please be praying that she can tolerate her feeds without too much spitting up.

It's been a big day today. Now that she is out of PCICU I will start spending the night with her in her new hospital room. There is a little couch for me to sleep on, not the Marriot by any means, but it will be fine and it is right next to my daughter's crib. I think Daddy is too big to sleep on it though so Mommy is probaby going to be doing night duty until we go home.

As for going home..... it all depends on the drainage from her chest tube AND getting her to tolerate fully compressed feeds. The doctors said that every baby is different and they go at their own pace. I have come to learn that there are bumps & hurdles along this road so I am taking it "day by day" :)

Thank you Lord that we are on 7C today!

Tuesday, January 12, 2010

Now That's Cold

To any who are complaining about the cold....

Anna Grace - January 12 - Update #3

Just spoke with Dr Butts as Dr bradley is still in the OR. Dr Butts said that Anna Grace definatley has the condition called Chylothorax. Apparently her Lymphatic system was damaged suring her surgery which has caused her lymphatic system to not be able to process the fat in the breastmilk and that results in fluid accumulation in her chest - hence the chest tube. This is VERY common for babies who have open heart surgery.

So, no more breast milk for Anna Grace. They will be starting her on one of two formulas - either Infaport or Portagen. These formulas contain medium-chain fatty acids which are processed through the liver not the lymphatic system. We are praying that her body will be able to tolerate this new diet and that the fluid accumulation will go away and we can lose the chest tube soon.

Dr. Butts said that many times the lymphatic system can heal and that in 6 weeks we will try the breast milk again and see what happens, but for the next 6 weeks she will be on the Infaport or Portagen. So... I think I will just deep freeze my breast milk in hopes of resuming it again in 6 weeks.

Please join us in praying that her diet change will solve the problem and that she will be able to tolerate this new food well and that her body stops the fluid accumulation in her chest.

"Devote yourselves to pryaer, being watchful and thankful" Colossians 4:2, NIV

Thank you Lord for giving the doctors wisdom and discernment. Thank you Lord that Anna Grace has been able to rest this afternoon. Thank you Lord for giving us friends near and far to pray for us and encourage us. Thank you Lord for your Word and your promises. Thank you Lord that we can have a personal relationship with you through Jesus Christ.

Anna Grace - January 12 - Update #2

Today has been a rough day for Anna Grace. Dr. Bradley put the chest tube back in today to drain the fluid off her right lung. So, as I sit by her bedside the chest tube machine is gurgling & the monitors are beeping their steady rhythm. Anna Grace is sleeping the sleep of a little baby who has had morphine, oxycodone & versaid.

Dr. Bradley thinks that the fluid build up might be "Klye" (sp???) fluid caused from a condition called "Kylothorax" (sp????) which is caused from her not being able to process the fat in breastmilk or formula. They have stopped all her feeds for now & she is on only IV fluids. So, we have had a setback today.

I haven't been able to talk with Dr Bradley about it as he is currently in the OR. Hopefully I'll be able to speak with him this evening and find out his take on the fluid and the game plan from here. If it is "Kylothorax" then she will have to be put on a "fat free" diet and special formula - no more breastmilk.

She also had her swallow study this morning which was inconclusive. They want to repeat it in a week. So, we still don't know if she'll be able to eat from a bottle, we don't know if she'll be able to continue with breatmilk and we don't know what the fluid surrounding her lungs is caused from.

Certainly still a lot to be in prayer about. I'm sad that my little one has had such a rough day and really trying to rest in the Lord's soverignity - if HE is allowing this then HE has a reason and I need to TRUST HIM. Faith.........

Anna Grace - January 12 - Update #1

Well, I just got off the phone with Anna Grace's night time nurse who said she had a good night last night. White blood cell counts & blood gases looked good and residual milk amount were low - hooray! She did however say that she thought Anna Grace was a bit of a Pre-Madonna -"why" I asked. She said that she had several bowel movements last night and each time as soon as her pants were dirty she would squak and cry and cause a big fuss until someone changed her and cleaned her up. She was not content to sit in dirty pants for a moment :) Good girl, keeping the diaper rash at bay.....

Her nurse yesterday told me she had nicknamed Anna Grace "Diva". "Why" I asked, she said that she will only sleep if she is swaddeled a certain way and THEN she also has to have just the slightest amount of her "blankie" touching the side of her face. If she is tired and ready to sleep and things are not "just so" then she will cry until you rectify it to her liking.

I guess she is showing a little bit of her personality already. Seems we might have to work on patience, but for the time being I am happy to indulge her :)

I am off to the hospital now & will post more after we look at her chest this morning. Please continue to pray for Anna Grace's right lung. Specifically for the fluid to be less than yesterday. I am resting in God's soverignty today - knowing that HIS plans are good and that He will give us the strength we need for today. Thank you Lord for your faithfulness!

Monday, January 11, 2010

Anna Grace - January 11

So, today didn't turn out as I had expected it would when I left the townhouse this morning, but I guess that is why Dr. Bradley keeps saying "we're taking it day by day". When I arrived at the hospital this morning they had just completed a chest x-ray and an echocardiogram on Anna Grace and had seen some fluid build up arounf her right lung. They then ordered an ultrasound to get an even better look at the amount of fluid surrounding her lung. Around noon they performed the ulutrasound and did see fluid around her right lung and basically the doctors said that they wanted to "watch it". So, before I left today I spoke with Dr. Bradley who said they would perform another x-ray and ultrasound on her chest in the morning - if the fluid remains the same or is less then they will leave it alone AND remove the RA line going into her chest. If the fluid is MORE then they will have to insert a chest tube & the RA line will remain. So... tomorrow is going to be a big day for Anna Grace - she will either be losing her RA line OR gaining a chest tube. Please be praying with us tonight that the fluid will remain the same or be less so that she doesn't have to have a chest tube inserted.

As for her food..... she remained on full feeds today - 25 ml per hour. Dr. Bradley said that she could start having her feeds "compressed" which means that she will start getting her food more like a "normal" baby. Working towrad getting food through her NG tube all at once and then going 3 hours with no food - just like normal babies do... eating every 3 hours. She had no vomiting or spit-up today which is a blessing and her residual amounts are in an acceptable range. She also had 3 bowel movements today which means that things are moving through her tummy as they should be :) She will probably one day hate that I ever mentioned her bowel movements on the internet...... but Mommy was VERY happy about it today so I thought it was worth mentioning :)

She really looked good today - nice & pink. She was awaake most of the day today and was happy most of the time, just looking around and checking things out. I was able to stroke her little head & sing songs to her. Since she still has the RA line I'm still not able to hold her, but I am hopeful that it will be one day soon.

A Sweet and Bitter Providence

God touched me with this short vid today. Hope you enjoy!

Sunday, January 10, 2010

Anna Grace - January 10

So, again it's another late post about Anna Grace, but she had a really good day today - thank you Lord!

I started the day by calling her nurse who said she had a good night last night which made me comfortable about going to Lighthouse Church to Worship before heading up to the hospital. Lighthouse is the Church that Crossbridge Ministries is based out of. Crossbridge has been ministering to our family in such a big way these last two weeks I was excited about being able to go see some Crossbrisge friends and Worship with them. The Pastor spoke to us from Exodus Chapters 1 & 2 specifically about the Hebrew people being enslaved, then forced to do hard labor and then the Pharoh decreeing that all the boy babies be killed. Things were not looking good for the Hebrew people - God's people - but God had not forsaken them - he was working behind the scenes in preparing Moses. What a sweet message for me that was today and I was so thankful to be in God's house today. What a week we have had, a week full of miracles- thank you Lord!!!!

So, I didn't arrive to the hospital until about noon. When I saw Anna Grace the doctors had removed all of the lines from her tummy!!!! She still has the RA line into her chest and the pacing wires into her heart and the NG tube in her nose that goes into her tummy and an IV in her right hand - we are down to only those four things - wow!!!!! They also had Anna Grace up to "full feeds" which for her is 25 ml per hour through her NG tube. She appears to be tolerating the milk fat well. She has some residual milk in her tummy which means that her little tummy is not digesting all of the milk, but she hasn't thrown up at all today which is a good sign. Please pray with us that her body is going to be able to digest all of the milk and that there is very little residual milk and that she has no vomiting.

The doctors think that they will be able to remove her RA line tomorrow and if they do that then I will be able to HOLD HER!!!!! Please be praying that will happen soon as I am so HUNGRY to hold my baby - how sweet that will be!

As for her swallow study - it looks like that won't be until Wednesday as they want her to be on full feeds for a couple of days before they do it.

It looks like we might be candidates pretty soon to be moved to "7C" that is where heart babies go when they move from PCICU. It is the "step down" floor from PCICU. I don't want to get ahead of myself as we are still taking things "day by day" as Dr Bradley would say, but once she can tolerate "full feeds" for a couple of days that's our ticket out of PCICU!!!

Thank you friends for continuing to pray for Anna Grace - it seems like everyday is a big day for our little one :)

Saturday, January 9, 2010

Anna Grace - January 9

It's nearly 8:30 pm and I am just now getting around to posting. It has been a big day for Anna Grace & the entire Bentley family. Brian & I got to the hospital this morning about 6:30 am. It was such a treat to see our little girl's face. She's had so many tubes & tape on her little face this week - now on her face she only has one small little NG tube going into her nose. We've come a long way! After the doctors made their rounds this morning we got the green light to have one of the tubes (the Arterial line) removed from her tummy - so we dropped a line today - hooray! Since that tube was removed they were able to finally start giving her breast milk through her NG tube. When I left tonight she was up to 9 ml per hour through her NG tube. She still has a long way to go, but she appeared to be tolerating the milk well. The doctors said that she may get to drop another line tomorrow or Monday (the RA line). So perhaps Sunday or Monday we'll be losing that line (in her chest). Please join us in praying that Anna Grace will be able to tolerate the breast milk and not have any problems digesting the milk or tolerating the fat in the milk (which is common for these babies).

Also, today Brian went back to Spartanburg along with my Mom (who has been watching Zachary at the townhome for the last two weeks). Zachary left today too and went to his Mee-Mee & Grandpapa's lake house. So, it's just me & Anna Grace in Charleston until Wednesday when my Dad & Step-Mom come out from Texas. Lots of changes for our family today, but we know that the Lord will sustain us :)

Thank you all for being faithful to continue to cover our family in prayer!

Friday, January 8, 2010

Anna Grace - January 8 - Update #2

Talked with her nurse a few minutes ago. She is off the oxygen and is on "room air" just like the rest of us. What a blessing! The ENT's who did her scope test this afternoon said she looked "great". They haven't started breast milk yet, but will shortly.

Please be praying that she can remain off the vent, that she can tolerate the breast milk and that there wasn't any damage to her vocal cords due to the surgery.

ANNA GRACE - January 8

Due to Tina being very tired she has asked me to update the blog for today. So please forgive me in advance for not being as detailed about all the ins and outs of Anna Graces care and condition.

This morning between 7am and 8:30am little Anna Grace graduated over the 3rd major hurdle which was getting her ventilator removed. She has been doing wonderful since. All the nurses are coming by and complimenting on how well she is doing. Most babies when they have the vent removed are very agitated but Anna Grace has been awake and very quiet. She has been even doing some goooing and ahhhing like she is saying “thank you Lord for getting that big ol pipe out of my throat.” It is common in most cases as well for the babies to have to go back on the ventilator so please keep this in your prayers.

It’s tough not to say to Anna Grace “Good job for being so strong” because that’s what naturally wants to come out. But let’s face it, she did not do anything. The good Lord Jesus Christ did it all. Without Him working towards strengthening my little girl she would not even be here. So I have to be very careful speaking to Anna Grace and making sure she knows it’s the Lord who has given her the strength to rebound so quickly. My heart breaks because there are so many little ones who are struggling. As I’m typing this I have a mom across the room from me who’s little boy just cannot seem to get out of the PCICU. It’s been I think 3 months.

Another big thing today is Anna Grace had her catheter removed so she is back to just diapers. The nurses are still in charge of this so it’s cool. I mean she still has a couple of lines going into her belly and its scares me to think about changing a diaper. Anyway, that’s my story and I’m sticking to it.

They will be checking later her vocal cords to make sure there was no damage when the ventilator went in or came out. It’s something they do on all babies but still be in prayer about there not being any damage.

Also they will be starting her back on breast milk shortly. They will only start with like 2 to 4 cc at a time but will increase as her stomach can tolerate it. It is very common also for heart babies to have issues keeping the milk down. I’m not sure why but Dr. Forbus said it is possible she will have to have some help getting milk into her by having a feeding tube surgically put into her side. Please be in prayer about this as well and that she can feed normally.

Anyway, all in all it’s been a very good day except a little boy named Josiah had to be flown back down here to the PCICU from Greenville yesterday. He has been in the PCICU for I think 6 months - Heart breaking. You can read him and their parent’s journey at www.thewilsonheart.blogspot.com

Hebrews 12:3 says this: “Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted.” Thank you Jesus!

Thursday, January 7, 2010

Anna Grace - January 7

Anna Grace did great last night during her C-PAP Trials. She passed both of them. Dr. Bradley saw her this morning and removed her chest tube. She had to be sedated a little bit for this procedure but they were able to do it in the PCICU. Dr. Bradley closed up the little hole in her chest where the tube was. She still has monitors in her chest to measure her heart pressures, but the chest tube is out so we are THANKFUL for that - thank you Lord! I talked with Dr. Forbus this morning who said that he wants to keep her vent in for a little while longer mainly because she has some fluid surrounding her lungs. He has increased her Laisx - this is a mediciine which helps her to urinate which should help her body release fluid - hopefully around her lungs. He said that depending on her urine output AND how she does on the next two C-PAP Trails will determine if her vent gets removed today or not so PLEASE PRAY that she has the most awesome urine output ever and that she passed her next two C-PAP Trails with flying colors. I prayed over her this morning for these two things specifically, what a miracle it would be for her to have her vent removed today.....

Wednesday, January 6, 2010

Anna Grace - January 6 - Update #2

Spoke with Anna Grace's Cardiologist tonight, Dr Forbus. He said that since Anna Grace is on the lowest ventilator setting that he is going to allow her to do C-PAP Trials tonight. What that means is that they will turn the ventilator on a "standby" mode and allow her to breathe on her own. The vent will remain in & the vent will monitor her levels while she is breathing on her own. If she needs help the vent will automatically kick in & take over for her. Please pray that she "passes" her C-PAP Trials tonight. If she does then Dr Forbus said she can come off the vent tomorrow. That would be truly a miracle for her to come off the vent this quickly - truly, it is not the norm for these babies to come off the vent this quickly.

Also, the cultures taken from her heart yesterday came back NEGATIVE for infection (Praise be to God!!!!!). They will watch the cultures for another 24 hours. If the cultures come back negative again tomorrow then Anna Grace can stop her antibiotics - so please pray for more negative cultures tomorrow. The antibiotics really upset her tummy so being able to stop them will make her that much more comfortable (and her little bottom too).

Dr Forbus also said that they started her IV fluids again today (eletrolytes) and that if things go well they will start her on breast milk through her NG tube tomorrow - not much - just 2 cc's an hour, but introducing food to her is a BIG deal after the Norwood. Also, that much closer to her being able to eat from a bottle.........

So, tonight & tomorrow are going to be BIG hurdles for our little one. Thank you for praying - God is answering and is being so merficul to our little Anna Grace. Thank you Lord, thank you Lord - we are humbeled to be so blessed!

Little Video Clip

In case you don't know... because we are all learning new technology through this BLOG.... if you will look to the right side of our BLOG under Brian's Twitter there is a post that starts with "Stats Strong today" at the end of that it is blue & says TweetReel, if you click on that it is a little video that Brian took of Anna Grace today. Enjoy!

Anna Grace - January 6

We had a good night last night. They were able to reduce her ventilator some last night & she tolerated that well. She is still on the ventilator, it is one of those things they will have to wean her off of slowly, but we are encouraged that they have begun that process and that she tolerated it well. They will reduce the vent a little more this afternoon & then draw blood gases & see how she does. Please continue to pray about this for Anna Grace. They have also cut her dopamine down by 50% - this is a medication which helps regulate blood pressure. It is good that her little body has been able to tolerate this and is starting to regulate her own blood pressure. I was able to spend a little time with her this morning. Her urine output is good, but she still has swelling so we need to continue to pray that her swelling goes down. She also has some swelling around her lungs which is keeping her O2 saturatiojn levels down so please pray that this swelling around her lungs goes away.

As I was in there talking & singing to her she was trying to open her little eyes and she was moving her little hands. I took one of the mittens off her hand and just held her tiny hand in mine while I talked with her. The nurse said she could hear me. I know she is tired and she is still a very sick little girl, but she seemed to respond to me as I talked to her, at least I like to think she knew I was there.

She is amazing and I am so thankful that God gave her to us. Will post again this afternoon.

Tuesday, January 5, 2010

Anna Grace - January 5 - Updated #2

Just spoke with Dr. Bradley and saw Anna Grace. Dr. Bradley closed her chest today at 2:00. It took about 1 1/2 hours. He said it went "OK" and that "we're taking it day by day". I asked him if there was something I should know. he said "no". Hmmmmm....... So then I went to Anna Grace's bedside & talked with her nurse & told her what Dr. Bradley said. She said with a smile that it sounded like something Dr. Bradley would say - apparently he has a reputation for being a great surgeon and a man of few words. The nurse said that things went well during the surgery and that Anna Grace is doing well. Dr. Bradley closed her sternum using wires and closed her muscles using stiches & then her chest is closed using something that looks like butterfly bandaids, then the has a dressing over that. She is havaing some bleeding out of her chest tube but that it is already starting to get more clear - which is good. Her nurse said that her urine output is doing better and they did not have to add any medications during or after surgery. She is still on a strong sedative and they won't start weaning her off that until tomorrow. They took some cultures from her chest while they were in there & have sent it off to the lab to be sure there is no infection. Please pray that those cultures show NO INFECTION. Things are still critical for Anna Grace, but we have jumped another hurdle today. The other heart moms that I talked with today were amazed that Anna Grace was having her chest closed after only one day....

The next hurdle to jump is coming off the ventilator. The nurse said that since Anna Grace was not on the ventilator before her surgery that her chances of coming off are better - that her body already knows how to breathe on its own.

So, please pray that Anna Grace continues to do well and improve each hour and each day. That the Lord will strengthen her little body. That she will be able to come off the ventilator and that her body will remain free of infection. Still very critical, but we give thanks to the Lord for answering our prayers. God is blessing us beyond measure - thank you Lord for your MERCY. I am so grateful, so thankful.

Anna Grace - January 5

It is about 9:30 am and Brian & I were just in to see Anna Grace. She is quite swollen this morning, much more so that yesterday. It is very hard to see your daughter with her chest open, swollen almost beyond recognition and hooked up to more tubes & wires than any infant should ever be. As a Mother my heart breaks for my sweet infant daughter. It is hard, it is hard, it is so hard.

With that being said..... Brian & I talked with her nurse who said that Anna Grace is doing very well (PRAISE BE TO GOD & HIM ALONE)!!! Her chest tube is clear which means no bleeding in her chest. Her urine output is OK, not great but OK. The swelling seems to be mainly in her hands, feet & face & NOT in her chest or abdomen which is good. She also said that if everything with Anna Grace continues like this throughout the day that Dr Bradley is planning on closing her chest this afternoon at 2:00. Her nurse said that in the 5 years she has worked in PCICU that she has only seen a hanful of "Norwood babies" be closed the day after surgery. Thank you Jesus for hearing our cries! Please continue to pray that Anna Grace does well today and can have her chest closed today. It will greatly reduce her risk of infection once her chest is closed.

Her nurse said that they will close her chest in the PCICU, they will not have to take her back to the OR for that. They said it will last a couple of hours. Please be praying for Anna Grace this afternoon at 2:00 as she undergoes yet another surgery. Not as serious as yesterday's surgery, but still another surgery and another hurdle to jump.

Brian has just now left the hospital after being here all day yesterday & throughout the night. Please pray that he can get a few hours of restful sleep as he wants to be back up here when Anna Grace has her surgery this afternoon.

Please also pray for Zachary as he is really beginning to miss his Mommy & Daddy.

Also, I woke up with a sore throat this morning - probably due to all the crying yesterday, but when you have a very sick child you can't take any chances. So I scrubbed up very well this morning and wore a mask as I saw Anna Grace,, but I didn't touch her and I am not going to wait by her bed today just in case I am starting to come down with something. I'll be in the PCICU waiting room. Please pray that I am not sick and that my throat will start to feel better today.

Monday, January 4, 2010

Anna Grace - January 4 - Update #6

We saw our little girl following surgery. It was shocking to see her with her chest open but we are thankful that the morning's surgery went well. The doctor said that we specifically can pray that she is able to urinate the same amount of fluid that she takes in, this should keep the swelling down and enable them to close her chest sooner.

Brian is heading back up to the hospital & I am going to try to get some rest. Thank you for continuing to pray.

Anna Grace - January 4 - Update #5

Just talked with the doctor - Dr. Bradley said that Anna Grace tolerated the surgery well. He said that everything he saw while he was in there was exactly what the echocardiograms showed and that there were no surprises during surgery. She is having some bleeding but that it is normal with this type of surgery. She is being moved right now back to PCICU and we will be able to see her in about an hour. He said that she just came through the first hurdle and that the next 48 hours are critical. Her chest is still open and she is on a ventilator. She is still completley sedated and will be for the next 24 hours.

Right now we need to pray that her swelling goes down quickly and that she doesn't have any complications & that they can close her chest quickly. The next thing we need to pray for is that she will be able to come off the ventilator quickly.

Thank you Lord for bringing our little girl through this major surgery. Thank you for Dr Bradley and for the entire crew who worked on our little girl this morning. Thank you friends & family for continuing to pray for our little girl.

Anna Grace - January 4 - Update #5

Anna grace is out of OR. They are taking her back to PCICU & Dr. Bradley will be out shortly to talk with us.

Anna Grace - January 4 - Update #4

Just got another page from the OR. Anna grace is off heart / lung bypass but is having a problem with bleeding. Please pray for her bleeding to get under control. She is still in the OR. I'm on pins & needles.

Crossbridge Ministries is here with us, Brian's friend from Spartanburg M.S. is with us along with our Moms & I also had another visitor, a heart mom who lives 45 minutes away. She found out about us from her MOPS group in Summerville & then read our BLOG. She came here today to minister to me as a Mom who knows where I am. Thank you Lord for taking such good care of us.

Anna Grace - January 4 - Updated #3

Just got a new page (10:15 am) that said "Still working away, all is going well".

Anna Grace - January 4 - Update #2

Just got a page from the OR (9:15 am). They said that all is going well in the OR. Anna Grace is on the heart/lung bypass machine & they doctor is working away. Anna Grace is stable.

Please continue to pray.

Anna Grace - January 4 - Update #1

It is almost 8:00 right now. Brian & I got up this morning about 3:00 & headed to the hospital. We were able to spend some quality time with Anna Grace this morning before surgery. She was sleeping peacefully when we arrived - all swaddeled up like she likes to be. They had removed the little tube from her nose and we were able to se her little face without any tubes or tape on it. What a beautiful little face she has. Brian & I were also both able to hold her again this morning and that was such a blessing. She slept peacefully throughout it all.

Anesthesia came about 6:30 to get her. It was so hard to let them take her. We prayed over her before they wheeled her away. They are supposed to be starting surgery at 7:30. It is hard just sitting here waiting for news. Lots of prayers & tears. Weeping actually.

The hospital gave us a pager and they will send us pages periodically throughout surgery to update us on how surgery is going & how Anna Grace is doing. I will BLOG throughout the day as I find out more information.

Thank you all who rose ealry this morning specifically to pray for our sweet daughter. We are so blessed to have so many brothers & sisters in Christ who are faithfully lifting our daughter up to our heavenly Father. It is such a comfort - you will never know. We are tursting HIM.

Love in Christ,

Sunday, January 3, 2010

Anna Grace - January 3

There is much to update today for Anna Grace. I was able to spend about 3 hours with Anna Grace yesterday & Brian spent most of the day & night with her. While I was visiting Anna Grace yesterday she needed a diaper change & while changing her diaper I was able to examine her bottom which really has an awful diaper rash. Her nurse & I rigged up the "oxygen tent" around her bottom and tried our best to let her little bottom air out. Because her white blood cell count is now normal they have stopped the antibiotics so hopefully her little tummy wiill settle today & give her little bottom a rest. Anna Grace is also extremely hungry and last night around midnight we think because she is hungry & her bottom hurts she was just not able to rest. She was crying and had worked herself up and her heart rate was extremely high. The nurse finally give her some pain meds to calm her down & help her rest. After she had fallen asleep Brian finally came home from the hospital.

We were up at the hospital about 8:30 this morning and she has ben resting on and off this morning. The nurse gave me some breast milk in a small medicine cup today & I have been able to dip her pacifier in the milk & then put it in her mouth. It's not like nursing or having a bottle, but it seems to pacify her and she has not gotten too worked up today.

This morning Anna Grace also had another echocardiogram which confirmed once again everything that all the other echocardiograms have shown. At around 11:00 today we met with the Anesthesiologist and then at 11:30 today we finally met with Dr. Bradley. Dr. Bradley went over with us what would occur tomorrow during her surgery.

Basically, at 6:00 am tomorrow anesthesia is going to come get Anna Grace & take her to the OR. Once in the OR they are going to give her a sedative through her existing lines to put her to sleep. Once asleep they will put her on a heart/lung bypass machine and also run a couple of IV's in her hands and/or feet. After they have her sedated & on heart/lung bypass the surgery will begin at 7:30 am. Dr. Bradley along with his team will be performing the surgery. There are three things they need to accomplish in tomorrow's surgery: (1) They will apply a patch made of human tissue to her aorta in order to make her aorta larger because right now it is too small to use. (2) They will make a "Y" connection off her pulmonary artery to her aorta in order to supply blood to her body (3) They will put in a shunt off the pulmonary artery made of goretex to supply blood to her lungs. This is called the "Norwood Procedure" and Dr. Bradley has the most experience at MUSC with this procedure. The surgery will last about 6 hours and then it will take them another hour or two to get her settled back in PCICU after the surgery. They will have to leave her chest open after surgery for several reasons and it could be anywhere from 2 days to a week before they are able to close her chest up. Dr. Bradley said that the most critical time for her will be during surgery and for 2 or 3 days following surgery - that is when most prolems will occur for her.

Dr. Bradley told us that she has been able to stay alive this last week because of the Prostaglandin that they have her on but that without this surgery she will die. It's hard to hear. It's hard to process. We don't know what God's plan is for our little girl, but we are thankful for the time that He has given us with her. We were able to share with Dr. Bradley that we are Christians and that Anna Grace was conceived in India while we were there sharing our faith and praying about serving the Lord in full-time missions. We asked Dr. Bradley if we could pray for him and he said yes so the three of us prayed tgether at Anna Grace's bedside.

When she wakes up next today Dr. Bradley said that we could hold her. So, we are waiting patiently for her to wake from her nap and then for the special time that we will have just holding her in our arms. We have not been able to hold her yet. As weary as we both are we are excited for this opportunity.

Thank you all for continuig to be faithful to pray for our little girl. Tomororw she will be 7 days old and going into a very serious opertaion to save her life. We will keep you updated tomorow as we find out information.

Specifically you can pray that: the Lord will heal our little girl completley and that she wil not need surgery, Should the Lord choose not to heal her that Dr. Bradley can rest well tonight and that the Lord will annoint him tomorrow and give him steady hands and to make no mistakes, that Anna Grace will tolerate the medicinces and the heart lung bypass machine, that Anna grace would not have excessive blessing during the surgery tomorrow, that they will be able to wean her from heart/lung bypass to a ventilotor directly after surgery, that the Lord will HOLD HER during surgery while her heart is stopped for 6 hours, that Brian & I will have strength and courage, that the Lord will be glorified tomorrow.

Saturday, January 2, 2010

Anna Grace - December 2

I was able to go to the hospital last night for a few hours and see Anna Grace. She was battling an AWFUL diaper rash due to an upset tummy from all of the medication that she is on. I am happy to report this morning we talked to her nurse who said that they rigged up something to blow straight oxygen onto her little bottom throughout the night and that her diaper rash is doing much better today. Also, since her white blood cell count is now into normal they have stopped the antibiotic she was on so hopefully her tummy might start feeling a little better today.

She is still able to remain off the ventilator - PRAISE GOD and not only that she has still been able to remain off oxygen (well, she used oxygen for her bottom, but she doesn't need it to breathe) - this is another huge PRAISE!

Will BLOG more later today, but just wanted to give you the more recent update. Please continue to pray for our Anna Grace :)

Friday, January 1, 2010

Huge Encouragement

Over the Thanksgiving holiday Matt Chandler the lead pastor over at The Village Church found out he had a brain tumor. Doctors quickly removed it and he is currently undergoing treatments to keep it from coming back. Check out his blog here:

Matt’s strength has been a huge encouragement to me during the last month. Seeing another brother in Christ who is suffering and staying strong in Christ has helped me to push harder into Christ for my all in all. I encourage you to pray with me for Matt’s complete healing.

John Piper recently preached at The Village Church to encourage the congregation during Matt’s and The Village’s trial. It was an amazing sermon and the Holy Spirit touched me deeply while listening to it. I highly recommend it.

Listen to it here!

Anna Grace - January 1

Today I am resting in the bed at the townhouse and Brian is at the hospital with Anna Grace. I talked with Brian and he said that she has been sleeping comfortbly most of the morning. Her nurse said that she is doing well. It is a comfort as a Mommy to know that she is able to rest and appears to not be suffering despite all the tubes coming out of her little body.

Brian stayed with her last night late and didn't get home from the hospital until close to midnight. It is just so hard to leave her each day. We are thankful though that she has such great nurses taking care of her while we are away.

My plans are to try to go to see her for a couple of hours this afternoon. I know I am supposed to rest, but I just have to at least lay eyes on her today. We haven't been able to hold her yet and that is so hard. We are praying that we will be able to hold her for a little while on Monday morning before she goes into surgery.

I am feeling very weary today - physically & emotionally. The Lord tells me:

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. II Corinthians 12:9

I thank you Lord for your Word. I am weak.

Love in Christ,