Waiting

Today was a long day filled with waiting, waiting and more waiting. We arrived at the hospital this morning and were able to spend a couple of hours with Annie before her surgery. We actually were able to hold her even though she was on the ventilator (sometimes they can bend the rules)- what a blessing to have that time with her to have her close and tell her how much we loved her before she went into surgery. All three of us received blessings that again brought comfort and peace for the long day ahead. A little before noon, Dr. Pribble, the anesthesiologist, came to take her to the O.R. We walked most of the way with him, wiping away tears and dreading kissing her goodbye. The time came for us to part ways and we whispered our love and goodbyes to this sweet daughter of ours. A kiss on her forehead and it was time for her to go. I thought it was hard to let my other kids go in to surgery to have tonsils removed or tubes put in their ears, but heart surgery is a whole different level of "hard to say goodbye." Thankfully, I knew how many prayers were going with her into that operating room and felt that all of heavens blessings would be with her and the surgeon.

It took almost an hour for the anesthesiologist to place the lines and for the team to prep her for surgery. At that point Dr. Burch's assistant, Annie (this could get confusing with 2 Annies) came out and let us know that he had made the initial incision and that the surgery was underway. After that she came out every hour to tell us how things were progressing. As the hours passed she let us know as Dr. Burch closed the hole between the ventricles, moved the pulmonary artery in front of the aorta (in order to relieve some of the pressure on her airways) and placed the conduit with a valve in it. By about 5 PM, he had finished these procedures, Annie (ours) was off of the bypass machine, and they were doing an echocardiogram to ensure that everything was functioning properly. Annie (his) let us know that the echo looked good, but they were working to stop some bleeding and that Dr. Burch would come talk to us when he finished. A little after 7, a very tired Dr. Burch met us in the empty waiting room. By this time all the other families and even the desk clerks had gone home. He reviewed how things went and informed us of some things that might be cause for concern. First, and most importantly in the near future: while moving her pulmonary artery in front of the aorta should help to relieve the pressure on her airways, it is now putting some pressure on her superior vena cava that sits in front of the aorta. The most urgent concern is that because there is a catheter in that vein, the extra blood pressure could increase her chance of having a blood clot go to her brain. They will take the catheter out as soon as possible, probably in the next 24-48 hours. Less urgent, but important still: if the pressure in the superior vena cava doesn't decrease to a tolerable level as the fluid and pressure in her chest cavity decreases, they will have to go back in to try to remedy this problem. He is hopeful that this will not be necessary, and even tonight the pressure in this vein was improving. Next he talked to us about some abnormalities in her anatomy that he found when he opened her up. The sac around the heart is called the pericardium. This sac separates the heart from the other organs and tissues in the body. He said that she does not have any pericardium on the left side, something he has never seen before. He was not sure of all the implications of this, but felt that it would likely be tolerable as many patients have pieces of the pericardium removed as part of various heart surgeries. Because this sac is missing, her left lung is pressing right up against the heart and the heart is somewhat misshapen. Because of this, when he went to replace the valve, he found that the artery there was laying nearly horizontal, whereas it would normally be almost vertical. This required him to be somewhat creative in placing the new valve and he even changed the entry point into the heart a little bit in an effort to straighten it some. He felt that everything there would still function fine but might raise some eyebrows when she needs to have the valve replaced. Also, because the sac is missing on the left side, he was unable to see a nerve that he usually locates and avoids. This nerve feeds the diaphragm. He said that just because he couldn't see it, doesn't mean it is not there, and he didn't want to risk damaging it by hunting for it. We will know when she comes off the ventilator if this is an issue and deal with it then if it is. The last unexpected thing that he found was another hole in her heart. This one was between the left and right atrium. He stitched it up, leaving just a very small hole, meant to relieve some of the workload of the left atrium for now and likely to close in time.

Even with all the waiting we did today, there will be lots of waiting still to come. We are so grateful that she came through the surgery today, but know that she has many milestones to reach before we can take her home or even hold her again. We were told that for the first 5-7 days following surgery, we will feel like we are holding our breath. Dr. Burch said that the major benchmarks are: 1. 48 hours post surgery; 2. closing her chest (they had to leave it open to allow the swelling to go down so that there is not too much pressure on her heart when they do close it). 3. taking her off the ventilator- this one is extra big for her because of all of her airway issues; and 4. moving to a room outside of the CICU. All of these goals have to be reached before we can bring her home again. We were told to plan on her being in the hospital for another month or so. And so, we wait and pray- for her to recover from all the trauma that her little body has endured today; for her to reach all of these benchmarks; for her to no longer have to work for every breath she takes; and to bring her home and let her grow big and strong after all.

Before I finish this post, I just feel a real need to express my gratitude to all of you. To our family, our friends, our ward members and neighbors, to people that we have never even met that hear our story and include us in their prayers: I just want to say thank you for helping us lift a burden that is way too heavy for one person or one family to carry on their own. I have always considered myself to be a very independent person, able to deal with whatever life throws at me. This is one of those times where I have been unable to do it all and really needed help. I can't say enough how much it means to me and my family that you have all stepped right up and filled in the gaps where we just can't: driving carpools; tending my kids; making meals, doing my laundry (even my whites!); bringing in groceries; going to the temple with us in mind; calling or emailing to say you care; bringing treats or sending a card; weeding my yard with its' way too many flower beds; helping us finish 2 bedrooms in the basement; cleaning my house; flying into town to watch my kids; dropping everything to help when we have needed it; showing up at the hospital to visit; and mostly, just showering us with love and offering so many prayers in our behalf. Without all of you, I know I would be a complete wreck (and so would my house). Thank you.

Surgery Scheduled

This morning, I called to check on Annie as I was driving to the hospital. The nurse let me know that the doctors had come out of their conference and had told her that Annie was scheduled to have an MRI tomorrow and that she would have surgery on Friday. This is sooner than I had anticipated (like I said in my previous post: Never Make Plans!) and means that after tomorrow I will not be able to hold her for quite some time. I arranged for my kids to sleep-over with friends and family so that I could stay late and soak up every last minute of snuggle time with her. I took my ipod and listened to my favorite peaceful music while I held and rocked her all day and evening. I appreciated and tried to memorize everything about her- the weight of her head on my shoulder, the rise and fall of her chest against mine, the little dimple in the middle of her top lip, the funny faces she makes when she is sleeping, and her bright little eyes when she is awake. It was a really sweet day- just what I needed as I know the next several are going to be very stressful.

Our family will be fasting on Friday for Annie and the doctors that will be performing her surgery. We ask for your prayers that day and would welcome anyone that wants to join us in our fast.

Home and Back Again

Well, I would have to say that one lesson that I am learning on this heart journey with Annie is: Never Make Plans! This is so hard for me, because I am a planner by nature, always wanting to look ahead and organize the details of what is coming. This is not an option right now as every day seems to bring new information that changes what we thought the day before. After Annie was transferred to the CICU last Tuesday, they monitored her very carefully there for a few days. She had an occasional episode where her O2 levels would drop, but overall seemed fairly stable. On Friday, they decided to move her to a room on the pediatric surgical floor where she would still be monitored, but not as closely as in the CICU. I was able to room in with her and care for most of her needs for two days. She did really well and by Sunday, they took the feeding tube out and told us to take her home and fatten her up. Of course, everyone was concerned about her taking a turn for the worse, but we felt like we could handle things if they remained as they were. We brought her home on Sunday afternoon and were so happy to have our whole family together for the first time since Annie was born. Managing the three little girls was definitely a challenge, but we were determined to do whatever it took to make things work. Monday morning, around 6 a.m., Annie woke up to eat and started to have a hard time breathing. Her O2 levels fell sharply and it seemed as though she could not get any air in or out. We turned the oxygen up, placed her on her tummy and tucked her knees to her chest as we were told to do. The incident lasted about 5 minutes and it took about an hour for her to fully recover. We were very scared, but hoped this was an isolated episode, not a new trend for her. The rest of the day was fairly uneventful and last night she did great all through the night. However, this morning, at 8 am, she repeated what she did yesterday morning, only this one lasted longer- 8 and a half minutes. Once she seemed to be easing up some, we called her cardiologist and they told us we could call 911, drive her to the nearest ER, or bring her back to PCMC. She was still struggling to keep her O2 levels up, but we really wanted her at PCMC so we jumped in the car and drove there. When we arrived at the cardiology lab, they could see that she was still working very hard to breathe and told us that she would need to be readmitted to the CICU. Again, the doctors converged on her and began ordering tests and discussing what needed to be done. The consesus seems to be that Annie is letting us know that she needs the surgery soon. They will meet as a team in the morning and discuss her case again, just as they did last Wednesday. They will likely pick a date for her surgery and schedule an MRI to take place a day or two before then. It sounds like they are leaning towards scheduling all of this to take place sometime early next week.

We really didn't want this for Annie. We were so hoping that she could wait until she was bigger to have her first surgery. Somehow, it is easier to accept that this is what she needs because we did bring her home and tried to help her wait. I would be lying if I didn't say that I am scared for what is coming. I don't really know how to prepare myself for what lies ahead- handing her over to the surgeons is going to be extremely difficult. I just keep reminding myself that her life is in our Heavenly Father's hands and as much as we worry and fret about this and that, His will for her will ultimately be done. Annie's nurse today has worked in the PICU/CICU at Primary Children's for more than twenty years. She told me that she loves to work with these heart babies because they have such incredible spirits. She also said that she is positive that there are angels all over the CICU tending to and watching over these little ones. She said that any nurse that works there would say the same thing (regardless of their religion). I too, feel as she does, and know that Annie is being loved and cared for from both sides of the veil.

Change of Plans

What a roller coaster the last few days have been. Throughout the past week, the NICU team had been preparing Annie to go home. By Friday, she was on the right oxygen assistance, and was taking all of her meals without needing to be fed through the tube, making what everyone felt was amazing progress. Last Thursday, she started having moments during the day where her O2 levels would dip pretty low and, at times, she also seemed to be working harder than ever to breathe. Cameron and I were concerned about these episodes, but the doctors didn't seem worried about it, so we figured this must be "normal" for Annie. Sunday morning, I called to check on her and the nurse told me that while she was feeding Annie, her oxygen had dropped again and her color was blue for a moment or two. The nurse said that it made her nervous, but that Annie was fine now. We talked about taking out her feeding tube that day and taking her home on Tuesday. I went to church for an hour and then went up to the hospital and, by the time I arrived, everything had changed. During rounds, the doctors decided that she was working too hard to breathe and ordered a chest x-ray. They informed me that on the x-ray, her lungs looked "wet" and they felt she was experiencing congestive heart failure. This is not uncommon in children with her specific condition because there is too much blood and not enough air going to the lungs. They informed me that they were going to give her a diuretic and see if that seemed to help her. They assured me that this could be treated while we waited for surgery and was not likely to keep her in the hospital long term (probably another week or so). I left Sunday night feeling that, although this new development was not ideal, it was certainly something we could manage. Monday morning, I was there when the doctors rounded, and again, we all discussed how the fluid in her lungs would be treated, and what the plan was for her going forward.

Monday afternoon, a cardiologist from PCMC came to examine her. He was a more senior cardiologist than the others we have seen and told me that he had had several patients with TOF and Absent Valve. I was so glad to finally talk to a doctor that had some experience with this specific heart defect. He asked how she was doing and I described for him what had happened over the last several days- her symptoms, the diagnosis of CHF, and what the plan was to treat it. He observed her and told me that she was indeed working too hard to breathe. However, he disagreed that she had fluid in her lungs. He felt the x-rays showed that she was trapping air. He then told me that he felt she needed surgery soon- that we were risking too much to wait. He told me that he didn't know if she would survive, that many of these kids do not. He said he felt that she should be transferred to the CICU at PCMC and have an MRI done. This procedure alone would probably necessitate her going on a ventilator and with her airways already being so compromised, there was a very real possibility that she would not be able to come off the ventilator before surgery. I was so heartbroken to hear this. I felt like we had been told such good news for the last two weeks and now all that was being taken away. Here we thought that she was beating all the odds and doing so amazing and this doctor was telling me otherwise. Cameron was in court and could not be reached, so the doctor agreed to come back that night and discuss this with both of us. I cried the rest of the day- so afraid of what this news would mean for Annie. I felt more prepared to hear this on the day she was born than I did now.

He came back that evening and after we discussed things again, Cameron and I agreed that she should be moved to PCMC for further evaluation by the doctors there. We left the hospital with very heavy hearts that night. The next morning was busy- she was transferred and an entire team of doctors began observing and evaluating her. We talked about the risks of doing the MRI and the doctors there agreed that doing the MRI was risky and might give them no choice but surgery if she could not come off the ventilator. Much to my relief, they felt that we should hold off on that procedure until they had more time to assess her in other, less invasive ways. They did a thorough echocardiogram and were able to get pictures of most of her heart and pulmonary anatomy. They did an EKG and ran several blood tests on her. They also prepared all of her information to be presented to an entire cardiac/surgical team at a conference they have every Wednesday morning to discuss cases. This would allow many opinions to be heard and discussed and a unified decision to be reached. Cameron and I both felt very good about this as we have heard so many differing opinions and really liked the idea of many doctors and surgeons coming together to figure out what the best way to move forward would be.

Today Dr. Su let me know what was discussed in the meeting and how they think we should move forward. He said that they really would like to see her go home and put on some weight before surgery. Even if she could get up to ten pounds, they would feel a lot better about doing the surgery and their chances of reaching a good long term outcome. They are not sure that she will grow as she is expending so many calories to simply breathe. If she does not gain weight, then they will do the surgery, as there would be no advantage to waiting. They are also concerned that if they send her home, we might find ourselves in an emergency situation if she has a cardiac or respiratory crisis. Either choice has risks and the trick is picking the better of the two choices- do the surgery or bring her home. Before they make a final decision, they want to observe her in the hospital for several days. They will keep her in the CICU until tomorrow and then, if she is still relatively stable, they will move her to a bed outside of the ICU where she can continue to be monitored.

We are certainly worried and praying with all of our hearts that these doctors can help us do what is best for Annie. Monday was one of the hardest days of my life- I was filled with fear and anxiety for this sweet baby girl that we love so much already. I was literally aching for peace and assurance from Heavenly Father that things would be ok. Tuesday morning was not any better, but by Tuesday afternoon, that peace that I so desperately needed was returned and has stayed with me since then. Annie might be looking at surgery next week- something that I have hoped and prayed wouldn't happen and yet, somehow, I am at peace. How grateful I am for prayers offered in our behalf, priesthood blessings given and received in faith, and temple prayer rolls with ours and Annie's names on them. I know that these are the reasons for the peace that is with me now. These things, along with the many other acts of service being done for our family right now are so appreciated. Thank you for your love.

Test Results

Annie is making really good progress and the doctors have been saying all week that she is close to coming home. At the beginning of the week, I assumed we would be home by now, but now my best guess is that she will come home Sunday or Monday. I have learned that they don't like to define what they mean when they say "close," so I could be wrong again. She has been switched to the oxygen assistance that she will come home on and transitioned without any problems. She is doing much better with her bottles and with breastfeeding- taking almost all of her meals without needing to be fed or supplemented through the tube. She needs to go 48 hours without using the tube before she can come home. She also needs to gain weight (she has lost a little bit on two of the last three days).

I'm not sure what it is about Fridays that makes me cry, but today the tears came again. On the way to the hospital, I was feeling sadness for Annie and all that she is facing. Every day, every breath, every swallow feels like a fight that she has to win. She has to work so hard to do all the things that came so easily to my other kids. I am sad that she is facing such serious and intense surgery in just a few short months. Of course, as I am feeling these things, I am thinking about how much worse it could be, how much worse we thought it would be and then I feel guilty for not focusing on all the blessings that I know we have received. If there is one word to describe how I have felt since the day she was born it is gratitude; gratitude for all that has and all that has not happened in the last ten days. Most days, I really do just feel grateful, but sometimes I still feel sad and today was one of those days. After spending several hours with Annie, I said goodbye and left to come home. When I got to my car, I checked my phone and realized that I had missed three calls from a number I did not recognize. I called the number and the nurse practitioner that is taking care of Annie answered the phone. Of course, my first thought was that something must be wrong or she wouldn't be calling me three times in a row when I just left the floor so recently. She was calling with news, but this was really good news. Annie's chromosome testing came back today and everything looks fine- she does not have DiGeorge Syndrome! Once again, the tears came, this time out of relief and happiness. In my heart, I really thought the test would come back negative, but the worry was always there under the surface. So now I cried all the way home, this time feeling nothing but thankful for how blessed we are (and thankful that my car has tinted windows).

Little Bumps In The Road

The last few days have had a few bumps in the road, but have mostly gone well. Friday was an emotional day for me to begin with. I think I have been running on adrenaline since Annie was born and by Friday was feeling spent, both physically and emotionally. We had asked about her bloodwork for DiGeorge on Thursday and no one in the NICU knew anything about it. They assured me that they would try to track it down, but on Friday said they had been unable to locate it and we would have to draw the blood again. I was frustrated by this, knowing that a lot of blood is needed for chromosome testing, but just wanted to get it over and done with. The nurses began trying to collect the blood and things went downhill from there. After three vein punches (I think that is what they called them), and a half an hour of listening to Annie cry, the lab informed them that because it was taking so long, the blood was already clotting and was no longer good. At that point I started to cry right along with Annie, so frustrated that even though we had taken measures to ensure we wouldn't have to do this, we were doing it anyway and our efforts so far were all for naught. They decided to take a break and give Annie (and Mom) a rest. Later, after I had left and Cameron was there, they did it again (this time in her arm, where the blood comes much more rapidly) and were able to get the blood they needed. The results will be back in 7-10 days, not in 48 hours like I had originally thought. I am relieved that this procedure is over and done with.

Annie seems to be working harder to breathe and on Saturday, the doctors ordered x-rays of her lungs because they were worried that she is trapping air. This means that she is able to get the air in, but not able to get it all out as she breathes. They said that if this was the case, and she was trapping a significant amount of air, they would not be able to send her home before surgery. The x-rays came back and looked good. She is not trapping air AND they said that her thymus is very large- a good sign that she does not have DiGeorge, as these kids usually have a very small thymus and sometimes no thymus at all.

Because she is working harder to breathe, the flow of her oxygen was increased yesterday. The nurse said that she seems a little congested and this is probably causing her to struggle. This gives me an idea of how miserable and scary it will be if she gets a full blown cold when we come home. We are going to have to be so careful about germs! They need to switch the type of oxygen assistance she is on in order for her to come home (right now they can adjust the percentage of oxygen and the flow can vary greatly, but the unit she comes home on will remain at 100 percent oxygen and allow me to make minor adjustments to her flow only). They don't want to switch her until her breathing is not so labored, so we are hoping this improves soon.

Her glucose has stabilized since they switched some of her feedings to a high calorie formula that is usually used for preemies. The only other issue we are working on is eating. She tires so quickly that it is difficult to get her to take an entire bottle. However, she is making progress (she was finally able to breastfeed yesterday) and we are grateful for every step in the right direction.

I still think we will be bringing her home sometime later this week if things continue as they are and she can jump these last few hurdles. What a happy day that will be!

Annie's Progress

Cameron and I came home from the hospital last night as I am no longer a patient there. It was hard to leave Annie, but we know that she is in good hands and will be well taken care of in our absence.

Overall, Annie is doing very well and we could not be happier with how things are going. She is still on the oxygen canulas (Yea!) and has been weaned to a very low level of assistance. They monitor her very closely and constantly adjust the oxygen to help her be in her precise target range for oxygen saturation. A couple of times, they have been able to take her off the oxygen completely and she has maintained her levels for a while. She does best on her tummy because in this position her large arteries are not lying on top of her airways and much of the pressure is alleviated. However, they won't allow her to sleep on her tummy when she comes home, so they are more interested in how she does when on her back. As you can surely guess, we are thrilled with this progress.

She is having some problem keeping her glucose levels up and so far, they have not been able to figure out what is causing this. They are working to find the cause and remedy this problem. She has started to drink from a bottle but usually tires very quickly so we end up feeding her through a tube. They want her to be eating without a tube when we bring her home, but while her glucose is low, they are more focused on making sure she gets the nutrition she needs. So, once the glucose levels are stabilized, we will work on getting her to eat better.

Yesterday, she was ready for a diaper change and I happily volunteered. You have to know that diapering and dressing a baby is an entirely different experience when they have several cords and lines coming off of their body. I still felt confident that I could handle it as I have had many chances to change a baby in my life. Let's just say that after she had soaked her onesie, her outfit and both blankets in her crib while I was fumbling with the diaper and we spent the next twenty minutes changing all of her clothes and linens, I was humbled and grateful for a very patient nurse.

Right now the plan seems to be that once we figure out the few issues she is having we will bring her home and let her grow stronger for a few months (hopefully 6) until she is ready for the surgery. When she is close to being released, I will go and spend a night or two in a room across the hall from the NICU with her and take care of all of her needs on my own. This is a way to make sure I understand all that she needs and have any questions answered before we are on our own with her. Keep the prayers coming as they are working miracles so far!