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!

Tender Mercies

Annie was born at 3:45 pm after a mostly uneventful labor. The end was a little intense, but overall, things went very smoothly. She weighed in at 6 pounds 8 ounces and I haven't even thought to find out how long she is. She has a little bit of hair, and if you ask me, she looks like the rest of our clan- very Sabin!

I feel like I have been holding my breath for three months waiting for Annie to take her first breath. My greatest hope for today was that she would be able to breathe on her own- that we would at least hear that first cry before she was passed into the NICU and likely intubated and placed on a ventilator. After what seemed like eternity and was probably actually 30 seconds, she did it!! Just as the doctors were passing her through to the NICU team, she let out a cry- one of the best sounds we have ever heard. At that point, the window was shut and the blinds drawn tight while they assessed and stabilized her. Talk about torture for two worried parents! After 20-30 minutes, we started to receive news about her. Most of it good news as we were expecting a pretty scary scenario. This is where she stands right now: She is breathing on her own- no ventilator so far! They have her on oxygen canulas and with that she has been able to keep her O2 levels where they need to be. Her color is great. She is pink and looks really good. The doctors do not believe she has Down's Syndrome as she is not exhibiting any of the typical characteristics. We will not know about DiGeorge Syndrome for a couple of days, but the fact that she is doing so well gives us great hope that she does not have this either. For now, they have not had to transfer her to the CICU at PCMC and if she remains stable she will be able to stay here in the University NICU and we can hope to bring her home much sooner than we anticipated. The doctors have told us that the next 48 hours are critical and will give her a chance to prove herself. There is still a chance that she will be intubated and transferred, but, so far, so good!

Of course, we know that even best case scenario for Annie will be a long road. But, we feel optimistic and hopeful for her and are filled with gratitude tonight for all of our blessings and our Heavenly Father's watchful care over our family. We both felt so much peace last night and throughout the day and know that your love and prayers combined with our Heavenly Father's tender mercies are sustaining us. Please continue to pray for Annie- it means everything to us! We will keep you posted as we learn more and follow her progress on this journey. Please know of our love and sincere gratitude for your part in all of this.

Almost Here!

I figure it is time for another update. We went to our last echocardiogram on Friday (March 5th). Walking into the hospital, it hit me that the next time we come to PCMC it will be to be with Annie as a patient. It was hard for me not to get emotional thinking ahead to what the next few weeks will bring. After the procedure, we met with Dr. Pinto. We did not have near as many questions as last time. The most important thing that I wanted to know was whether we have a good chance of bringing her home with us in a week or so, or if they really believe that she is going to require surgery in the beginning and therfore, a much longer hospital stay. Dr. Pinto said that they have seen so few of these cases that it is very hard to predict what the outcome will be. She said that the couple she knew of had turned out well- as far as she knows they have not been back for surgery since their repair was done. Both of these patients were able to wait several months before they had surgery. She then told us that Annie's arteries are indeed very large- bigger than what they have seen in babies previously. She said that while Annie might do fine in the beginning, if she were to make her best guess she thinks that Annie will likely need to go on a ventilator when she is born. This means that early surgery is a very real and even probable possibility. Not what we were hoping to hear, but something that I suspected after talking to my perinatologist a couple of weeks ago. After reading the report from PCMC, he told me to prepare myself for a ventilator and what that would mean for our baby.

Today I met with Dr. Froerer to set an induction date. We have heard so many opinions about what the best course of action is that it is very hard to know what we should do. Annie has measured small the entire pregnancy, so some of the doctors are worried that my due date is a week later than we think it is. For this reason, they want to wait a little longer before inducing labor. Other doctors have stressed how important it is for us to be at the U. and that an induction would be ideal, because they would be fully staffed and ready for her when she is born. The problem is that I have always gone early on my own, so I don't know if I will make it to a later induction date. Today, we tentatively picked March 30th- one week before what I know my due date is and two weeks before the ultrasound due date. I hope she stays put till then- Hadley came 18 days early on her own! No matter what we choose, the wait will be over soon.

As scary as it is, I think I am ready to get her here and deal with the obstacles ahead. I just hope she is a fighter and ready for whatever lies in store. I know that no matter what happens, she will be a great blessing to our family and we will never be the same after knowing and loving her.