Thursday, February 28, 2008

New pictures!

Good news!

Wednesday February 27, AnnaSophia had her two month well check with her pediatrician. Steve and I knew that she was gaining weight, but we had no idea quite how well she was doing. She gained over 1 and 1/2 pounds in two weeks! She now weighs 8lbs. 14 oz. She has amazed us all. Her lungs were clear and she has no trace of her cough from the RSV. Developmentally, she seems to be right on track, which is a huge blessing. We will continue to watch her develpment closely, but I feel like she is doing better than anyone expected. God certainly has His hand on our little girl.

On Tuesday, February 26, the respiratory therapist came to our house and checked AnnaSophia's oxygen levels. She did very well, and we were able to reduce her oxygen to 1/32 of a liter. Last night, we had her on a pulse ox monitor all night to see how she did on room air. Steve and I are tired today, as we did not get much sleep with the alarms. After we took the monitor off, she concerned us a bit. She had fallen asleep for her morning nap and her hands and feet turned very purple. We put her back on 1/16 of a liter, and she pinked right up. As much as we would love to have her off of the oxygen, we want what is best for her.

Tomorrow, we visit the caridiologist's office for another 24-hour holter monitor. We are praying that her rhythm is still good and that the reduction of her Sotalol is being tolerated well. Ideally, we would love to have her off of the medication altogether so that those long Q T intervals will disappear.

Even though it seems as though my weeks are full of appointments for her, Steve and I are so thankful that we are home. We do not take this for granted at all, because sometimes that can change very quickly.

My dental hygienist, Rhonda, shared this quote with me, and it is so inspiring.

God is a God of promise. He keeps His word, even when that seems impossible; even when the circumstances seem to point to the opposite. --Colin Urquhart

God bless all of you who have been praying for us. We truly appreciate it more than you can know.

Mary

Saturday, February 23, 2008

Our precious gift

Lately, I have been in awe of our little AnnaSophia. She is gaining weight well. I don't know exactly her weight today, as we have not had her weighed recently, but she is finally outgrowing her newborn diapers. Her little legs are starting to get chunky, and Steve and I can tell she is growing. Praise God! As I lay in bed with her at night, I have been overwhelmed. God has blessed us greatly with the time we have with her. Every day is a gift. I think back to that fateful Wednesday, Jan. 9th. One more day and she would not have been here with us. I would not have her nuzzling next to me each night.

Yesterday, in the Chiropractor's office, I met two women. One woman knew a family that just recently lost their baby after open heart surgery for a VSD repair. The other woman had a sister who underwent open heart surgery at birth thirty years ago. Her sister lived till age five. I left with a heavy heart for those who lost their loved ones due to Congenital Heart Disease.

At 1:30am this morning, as I was up with AnnaSophia, I was overwhelmed again. I felt a little fearful for her future, but I am reminded that God is sovereign. He has our days numbered. He knows us more than we know ourselves. He has the hairs on our head numbered. I find comfort in that knowledge, and I have realized how precious life is. I value every moment with Ethan, Emily and AnnaSophia, our precious gifts from the Lord. As a parent, you expect that you will outlive your children and see them accomplish all sorts of wonderful things. Sometimes that may not happen, but I thank God for every precious moment with my wonderful children.

Steve and I have not received any clear statistics for AnnaSophia's survival rate. Maybe the doctors don't know. I posted a link from this website that explores survival rates for infants with an Interrupted Aortic Arch. AnnaSophia has the rarest kind of IAA. I don't know if this makes her odds better or worse. One thing I do know is that she has defied all odds so far. God has declared her VICTORIOUS in her battles thus far. She has healed faster and been more stable than doctors predicted. I prayed while I was pregnant that she would do great things for the Lord. So far she is the littlest missionary with the biggest testimony that I have met.

You are great and you do miracles.
Only you are God.

Lord, my God, I will praise you with all my heart,
and I will honor your name forever.
You have great love for me.
You have saved me from death.

Psalm 86:10, 12-13 NCV

Friday, February 22, 2008

AnnaSophia has found her voice!

AnnaSophia has been recovering remarkably well from the RSV. She has no more cough, and her voice is now clear and strong for the first time since her surgery. God is so good! We were not sure if her voice would be normal following her surgery, since there could have been permanent damage to the nerve that goes to one of her vocal cords. She sounds wonderful, and she is cooing all of the time. Now when she cries, it's no longer a pathetic little whisper. She is still on oxygen, but the resp. therapist was able to turn her down a little bit.

Her appointment with the cardiologist went well. The results of her 24 hour holter monitor showed that she no longer had JET (Junctional Ectopic Tachycardia). Praise God!!!! The doctor cut her Sotalol dose in half, and we are going to repeat another 24 holter next week to see how she is tolerating it. We were advised to get a stethoscope so that we can monitor her heart rate daily at home. If her rate happens to rise to the 200's, then we need to contact the doctor immediately.

I received some clarification on her possible future procedures. When the surgeons repaired her Ventricular Septal Defect, part of the septum was partially blocking the aortic valve. The surgeons tried to pull that part of the septum over to the left to make more room. Upon viewing her echocardiogram, it was evident that there is still some septum in the way. We are hoping that as she grows, this will move over. If not, she will require another open heart surgery to repair this. We will know whether she will require this within the next year or two.

Other results of her echo showed that her bicuspid aortic valve is quite narrow. The valve is supposed to have three leaflets (tricuspid). Because the flow of blood through this valve is rather high pressure, the bicuspic valve is having a difficult time handling this flow. The result is that the valve becomes narrow and rigid. We are praying for another one of God's miracles with this valve. Otherwise, she will require another open heart surgery for this issue.

The doctor said the repair of her aorta looks good, and we pray that it will grow well with her and not narrow. If there are some issues, maybe it can be stretched via a heart catheterization.

Overall, these are a lot of what ifs. We continue to remain positive and hopeful. If there is one thing we are sure of, it's that God is in control, and we are thankful for every moment He gives us with our precious little angel.

Mary

Thursday, February 14, 2008

Thursday's update

Happy Valentine's Day!

We actually have some good news to share! Despite the RSV and recent hospital stay, AnnaSophia actually gained weight! She now weighs 7 pounds, 8 ounces -- this latest news courtesy of yesterday's doctor appointment. That is amazing when you think about what she's been through.

AnnaSophia will remain on oxygen for a while longer, likely another couple of weeks, due to the RSV. Also, her oxygen concentration was increased as a safeguard. Overall, it's hard to say where she is on her recovery from RSV. She seems to be doing a bit better as each day goes by, but we try not to get too confident about things, because conditions change quickly.

AnnaSophia has another appointment with the cardiologist tomorrow and will likely go on another 24-hour heart monitor this weekend to see how her rhythm issues are progressing. At the last appointment, the doctor was pleased that the rhythm problems seemed to be subsiding.

As you can see, the Lord continues to do amazing things in AnnaSophia. To top things off, I received an awesome Valentine's Day letter from my wife, and the new trailer for the next Indiana Jones movie was released today. You can't get any better than that.

Steve

Monday, February 11, 2008

Home again! Now, let's stay here.

Praise! AnnaSophia came home today! Woohoo. The doctors were pleased that she reached the 5th day of RSV and her condition didn't worsen. Normally, the 5th day is the most difficult. Sounds strange, huh?

AnnaSophia did go home on oxygen because she was desatting when sleeping. We're not sure how long she'll be on the oxygen...that greatly depends on how her lungs heal. She also still has a nasty cough. I keep telling myself that she's home and that's all that matters, but it can be stressful if we have no way to know for sure if she's O.K. Anyway, it is awesome that Mary is home and can sleep in a familiar bed and comfortable setting.

God is great and we're so thankful for the continued prayers.

Steve

Saturday, February 9, 2008

Update -- now 7 day hospital stay

Well, things were looking pretty good this morning, but AnnaSophia is hitting a rough spot tonight with the RSV. The nurses have said, "that's RSV, one minute they're O.K., the next they're not." AnnaSophia lungs are retracting, a sign of some repiratory distress. She is also on oxygen and the concentration may be increased tonight.

All of this is why AnnaSophia and Mary will likely be at the hospital through Wednesday. While we're getting tired of hospitals (and the bills), we much prefer that AnnaSophia is under the constant supervision of the doctors and nurses right now.

I'll continue to stay with the kids, before trying to go back to work on Monday. At that point, my parents will likely serve as "daycare" for Ethan and Emily until AnnaSophia is discharged. Both of the kids are stressed right now because Mom isn't around again, and I'm trying to do my best to help them through their struggles.

Continued prayers for healing and strength are appreciated. Pray that Mary's needs are met as well while she cares for AnnaSophia. Mary has been a rock of strength, but I remain concerned about her health and need for rest.

Steve

Friday, February 8, 2008

Prognosis = 5 days in hospital, but heart is O.K.

The latest prognosis is that AnnaSophia and Mary will be in the hospital for, at least, 3-4 more days due to the RSV and AnnaSophia's lungs. AnnaSophia is dropping her O2 saturation levels at times due to the RSV. The good news is that AnnaSophia's heart is handling the virus well so far.

The duration of AnnaSophia's stay in the hospital has me concerned for a number of reasons, namely Mary's health. The hospital is so busy right now, that I'm worried that they will not be attentive to my wife's needs as a nursing mom of a cardiac baby and the food allergy issue. So far, this concern has merit, so I'm praying that the situation improves. The staff has pretty much quarantined my wife due to the RSV, so she can barely leave the room. I've become rather opinionated about hospitals and nurses during the past several weeks!

I'm also concerned about my job. I had just returned from FMLA on Wednesday of this week, and now we're facing a new round of challenges that may impact my ability to get into work early next week.

Steve

AnnaSophia back in the hospital with RSV, collapsed lung

AnnaSophia is currently being transported from Memorial North to Memorial Central Hospital with RSV and a collapsed lung. Mary and my mom took her to the ER early this morning after AnnaSophia was suffering from congestion, a cough and a low-grade fever. I am home with Ethan and Emily who are both still sick. It's a good thing we didn't wait much longer. She is stable at the moment, including her heart.

Please pray for healing for AnnaSophia, strength for us (especially Mary), and guidance for the doctors who will be caring for her.

Steve

Wednesday, February 6, 2008

Rest for the weary

Praise God, everyone slept well last night! We remain concerned about Ethan and Emily because they are still running fevers -- in fact, in Ethan's case, he's going on six days with a fever. Somehow, we've got to get them to the doctor tomorrow.
Yesterday, I developed a fever and body aches. I called AnnaSophia's cardiologist and he felt quite certain that she would also get sick. I have been praying desperately that she will be ok. Even though we are glad to be home, times have seemed pretty tough.

Steve went back to work yesterday. I think this is a very good thing, as it will help him to not dwell on AnnaSophia's ongoing medical issues and the kids' illness.

Despite the challenges, God reminds us daily of how blessed we are. With just a flash of a smile or one of those gentle baby sounds, AnnaSophia gives us all -- Ethan and Emily included -- renewed hope and strength.

Steve & Mary

Monday, February 4, 2008

Monday's update

This is my third attempt at writing our new post. I inadvertantly erased the other two. I apologize for not posting an update sooner, but we have had our hands full with Ethan and Emily being sick. Ethan has had a fever for four days now. Over the weekend he spiked a fever of 104.6. Sunday, Emily started with symptoms of this illness (fever, cough, etc.). After talking with their pediatrician, she seems to think (even though they were vaccinated) they might have influenza. We are trying our best to protect AnnaSophia, because this could be awful for her if she gets sick.

We have had some concerns about her oxygen saturation levels this weekend. At times she has appeared dusky or her feet have been purple. Saturday night, while Steve was holding her upright, her face turned blue. As soon as we realized this, Steve moved her and she recovered. The pediatrician is looking into having her levels checked here at home, and she could require some oxygen while she sleeps.

AnnaSophia had her appointment with her cardiologist, Dr. Runciman on Friday. He is a wonderful doctor who was very instrumental in saving her life. He was the doctor who diagnosed her VSD and interrupted aortic arch, and he made all of the arrangements for her to go to Children's Hospital. He is also an electrophysiologist (specializes in heart rhythm issues), which is a benefit since AnnaSophia has problems in this area. She was put on a drug called Sotalol in the hospital to control something called junctional ectopic tachycardia. We posted a link explaining this in detail. Since her surgery, her heart rate has been much too fast (200-300 bpm). The Sotalol slows this down. Today, we took her in, and they put on a 24 hour holter monitor. This should give the doctor a good picture as to what her rhythm is doing on a daily basis. We should have the results in about a week. In the mean time, he has taken her off of her reflux medication. Her Lasix, for swelling, will be the next drug we cut out. And finally, the doctor would like to try to wean her off of the Sotalol in the next couple of months.

We also talked about her prognosis. The next 1 to 2 years will be critical in watching her. She could possibly require another open heart surgery in this time period. The doctor will also be watching for a narrowing of the aorta where her arch was repaired. Her arch could grow with her, or she may require either a heart cath to stretch it, or another open heart surgery. Also, she has a bicuspid valve rather than a tricuspid valve. We will watch this for a narrowing or rigidness which could also require surgery. The bottom line is that we don't know what the future holds for our little angel. We do know that she is in God's hands, and we pray for strength and peace for the future. I cling to her verse, "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11. Even though the last several days have been hard for our family, I know that God is for us, and I desperatley cling to Him. He is my rock.

Thank you everyone for your prayers and support.

Mary

Friday, February 1, 2008

God is so Good

Even though we have been contending with illness, God is seeing us through. He answered our prayers and after one night of fever, I felt fine. No symptoms of illness. I wish I could say the same for Steve. He is still very sick, and now Ethan has a juicy cough. "Germ-boy" and "Germ-man" have to wear masks continuously, wash their hands constantly and limit contact with the rest of us. Poor Steve has been sleeping on the sofa since Monday, but the good news in all of this is that AnnaSophia is well. Our insurance was wonderful and pushed through approval for home health care to administer her first synagis injection. This injection has a 95% success rate of protecting her from RSV. She will need these through April, and we need to be vigilant in protecting her from all illnesses.

Unfortunately, I feel a bit like a hermit. The upside to this is that we are homeschooling like crazy. We have a lot of work to get caught up on, and hopefully we can make up for lost time.

Today, we have an appointment with Dr. Runciman, AnnaSophia's cardiologist. We are so thankful for both him and Dr. Danahey. These two doctors saved her life. Hopefully, we will have some more answers regarding her rhythm issues. Unfortunately, Steve cannot come, because he is too sick to be in the office with all of the other cardiac kids. We are praying for wisdom for the doctor to know how best to treat AnnaSophia. Also, last night she looked very dusky and purple around her eyes and nose while she was sleeping. There is a possibility that she might be desatting while she is sleeping, possibly requiring oxygen.

Honestly, I am very weary, but I am trying to keep some semblance of normality at home for the children. I am completely relying on the Lord for strength. The Lord is my rock, my fortress and my deliverer: my God is my rock, in whom I take refuge. Psalm 18: 2 Thank you to all of you wonderful cooks who have blessed us with meals. We have really appreciated the food, and it has helped to make our transition home a little easier. I feel very blessed to know so many wonderful people.

Mary