Finally home

Ok, so we have really been home for a week and a half, but I'm just now getting to write an update. Sorry! Actually, the last weekend we were in Denver Alexis was admitted into the hospital for observation. We took Alexis in for a swallow study to see if her paralyzed vocal cord was affecting her ability to swallow safely. During the study she became very gray and we could all tell something was not quite right with her. She passed her swallow study (yay!) but then we took her to the Heart Clinic to check her sats. When she was hooked up to the monitor she was in the lower end of the range that the doctors are comfortable with her being in. She started to dip into the 60s, though, so they decided to admit her for observation. Long story short, she needs to be on just a tiny bit of oxygen all the time to keep her in a good range. The day after she was discharged we headed for Albuquerque. ***** The day we were going to leave, Alexis had a follow up appointment at the hospital. My mom was going to get the car packed up while we were there then we were going to leave right from the hospital. Yeah, that didn't happen. The battery on my car went bad and we had a hard time finding someone to jump the car. One family wanted to help but they owned their cables to help fund their trip to Denver :-( Eventually we got it figured out and left three hours later than we wanted to. The drive home was relatively uneventful. Lexi did fantastic and only woke up twice on the whole drive. What a trooper! *****Once home, we had to try to find some kind of routine. We are still trying to figure that out. She had a couple of great nights but now we a struggling with lack of sleep. Because she has a feeding tube, we are trying to figure out how to feed her at night so that she feels full but doesn't get too much of her nutrition at night to where she doesn't eat during the day. Balancing all of her requirements is very tricky. She needs four medicines in the morning and two at night. She eats fortified breast milk so, not only do I have to pump enough for her but we have to add formula to it to increase the calories per ounce. This means, to make the math easier, we make a whole day's worth of food at once. Her g-tube dressing has to be changed daily, as does the bag we put her food in. We only have one large oxygen bottle in our house so that has to be lugged to her iron at night and into the living room during the day. We have to monitor her oxygen levels periodically throughout the day. Her oxygen nasal canola has to be changed every couple of days. Then there is all the normal newborn stuff... ****Levi has been another challenge. He absolutely adores his baby sister. He calls her "my Lexi." He is totally jealous, though. He knows exactly what to do or say to get my attention and I'm having a hard time figuring out how to teach him patience while also giving him the attention he needs. I don't want him to grow up too quickly by me constantly expecting too much out of him, but I also want him to learn to be helpful and that this is our new reality. I guess I need to be patient and I'll figure it out eventually. ***** Our prayers now are for her to continue making progress with eating orally. She needs to eat 75ml every three hours. She can eat up to 25ml right now, but it is rare and normally she tires out before that point. We also pray that she settles into a good routine and starts sleeping more at night. And, for her heart to function perfectly until her second surgery, hopefully not until January, and that we won't need to be at the hospital at all until then. Thank you!

The end is near!

Jason and Levi just left for Albuquerque with Jason’s parents and my dad. We are anticipating Lexi’s discharge tomorrow morning, first thing. It is very surreal thinking about taking her out of the hospital. We have been waiting for this day for 4 weeks, and even longer, but now that it’s here I find myself feeling anxious and unsure. There is nothing happening for her in the hospital that I wouldn’t be able to do for her at home, but there is a little bit of fear that something could happen. A good friend told me yesterday, “fear is not of the Lord, so don’t give in to it!” I pray about it all the time, and unfortunately I think it is just natural for parents to worry about their children. Please pray for us, that God would take our fear and anxiety away, and that we would be able to fully trust in Him for her care and safety. ***** There are so many new things that are going to happen once we get her “home.” By home, I really mean the Ronald McDonald House. My mom and I are going to stay there for a week because we have to have a couple of follow-up appointments here before we are cleared to go home. I think it will be a nice transition, though, to be close to the hospital but in our own space with her while we figure her out. I already know how to feed her and bathe her, but I still need to learn how to give her medicine and a couple of other small things. ***** There is not much else new in our world. Jason is going to try to get Levi back into some kind of routine this week, before Alexis gets there. We have been talking to the doctors a lot about how to transition back into a normal life. They said having a stream of visitors is probably not a good idea, and people that do come over have to make sure they are not sick and may or may not get to hold her. This was hard for me to hear because I want to share her with everyone, but they assured me that people will understand, especially because we are getting into cold and flu season. Part of the problem is if she gets sick, she will probably have to get admitted to the hospital, but that means being life-flighted back to Denver rather than staying in Albuquerque. Of course we don’t want her to get sick, but we definitely don’t want to have to come back to Denver before her second surgery (probably at the beginning of the year). ***** Thank you for the continued prayers and I will update as things progress.

9.29.13

Last night was one of the scariest nights we have had since being here. Turns out it was not really something to be scared about, but in the moment it was alarming. Around 5pm Alexis started having some really high heartbeats. Her normal is 150-170 beats per minute. Last night it suddenly jumped to 210 and went up to 220 at one point. The monitor was going off and all of the nurses came in at once. Several more walking by asked if everything was ok. I knew her heart rate was really high, but the nurses were not in a position to tell me why. Alexis was able to get herself out of that episode but I was holding my breath and waiting for it to happen again. ***** 30 minutes later it happened again and they rolled in the EKG machine. It has 8 probes that had to go on her chest, then all of the stickies on her chest have a thing clipped on them. By the time they got it hooked up she was out of it again. They left it on her and said if it happened again she would probably need to get an iv because they want to make sure she is able to get out of it safely. Well, the next episode was a doozy, lasting around 3 minutes rather than 30 seconds like the others. Thankfully they captured it on the EKG and sent the strip down to the cardiologist immediately. She had a hard time recovering from this one and her oxygen sats stayed lower than recommended for quite a while afterward. Her oxygen was bumped up and she started doing better. ***** The cardiologist finally came up to talk to us and explained what she thought was going on. Basically, it looks like the cells that tell the heart to beat are either being overridden by other cells that don’t normally have control, or the cells are not exactly in the right spot in her heart which confuses her heart sometimes. Regardless of what her specific situation is, it can be controlled with medicine. Also, it seems this is not necessarily related to her HLHS. Normal hearts can have this issue, too. ***** The cardiologist also said that as long as she is stable through the irregularities then it is not critical for her to come out of the episodes immediately. That means her blood pressure stays stable, her oxygen sats are still in her safe zone, and her pulses stay strong. So far this has always been the case throughout, except during the recovery period. We can help her recovery quickly with oxygen, though. All of that information helped me feel much better about the new issue. I had noticed that Alexis did not get upset when her heart was racing like that, which was confusing at first. She could have this issue for her entire life, or she could outgrow it. We are grateful that it doesn’t seem like a big deal and we pray she outgrows it soon. ***** Her feeding progress is coming along very slowly. Jason has been able to get her to take 10ml, but she won’t drink any for me. We are praying we can get her into a swallow study before we have to make the g-tube decision. I’m feeling a little like we should just get the g-tube and get home, but I don’t want to rush things because I know she is so safe here. If we were already home we would not know about her new heart rhythm issue, so I’m glad we are still here. Please pray for us as we continue to forge ahead through this feeding situation and that her heart responds well to the new medicine she is on. Thank you!

Day 15

I feel like so much has happened since the last time I wrote, I'm not even sure where to start... I guess I'll start with the move up to the 9th floor. This is the CPCU (Cardio Pulmonary Care Unit, we think) and is the step between CICU and HOME. She was moved because the CPCU can do everything for her that the CICU was doing at that point, which is a good thing. We still get our own, private room up on the 9th floor, which is nice, and we have started taking turns staying the night with her. The idea of this unit is to prepare families for going home, so they encourage us to be very hands-on and taking care of everything we can take care of outside of the medical part. In short, that means we comfort, change diapers, etc. and the nurses take care of her feeds and medicines. It is nice to be part of her care but being in the hospital is still exhausting and we are ready to be home. Of course, we want her to be ready to be home before we take her, though, so we are trying very hard to be patient. It isn't easy. ***** She is off of oxygen at the moment. She has kind of been on and off of it, so we are hoping it is real this time. We have been trying some oral feeds and, while she had some initial success with a lot of support, she has not had much interest since then. She doesn't even seem to like the taste of my breast milk, which is a little bit frustrating. Hopefully she just didn't feel like eating, which is why she didn't want it, but it sure looked like she didn't like it. She can have formula, if we feel like she needs it, but we are still trying the breast milk as much as possible. I'm pumping it for her and the "milk lab" is fortifying it before it goes into her NG tube. I guess we are going to have to learn how to do that. The doctors mentioned putting in a g-tube today, for the first time. We knew it was a possibility, but because her vocal cord is paralyzed, at least temporarily, as a result of the surgery she had, and she is not interested in learning how to eat at the moment, it seems like the best option. We are going to give it until the end of the week before we make a decision to give her enough time to practice her eating skills, but if she hasn't made much progress then we are going to have to do the g-tube. ***** Jason and I have started talking about what happens when we go home. We are pretty sure we are going to keep Levi out of daycare for several weeks to make sure he doesn't bring home those germs. We are going to have to set pretty strict limits on who is around Lexi, especially during flu season. We don't want to be the crazy, germiphobes, but we also know that Lexi getting sick means a whole different thing than Levi getting sick. We also tossed around the idea of Jason going home before me with Levi to try to get Levi into a routine again before Alexis gets there. We will see if that happens or not. ***** Thank you so much for the continued prayers. We thank God that she is doing so well, health-wise. She has had no heart issues and very few other issues. The main concern right now is feeding, and whether or not we are going to have to tube-feed her or we can take her home with just bottles. Only time will tell. Also that she does not have to go home on oxygen. Like I said, right now she isn't on any, but it might change again, as she has been off of oxygen twice before and had to go back on it. Thanks again and I will update when I can.

Two steps forward, one step backward

One week after surgery, we are still in the CICU. Both Jason and I had assumed we would be out and up on “the floor” by now. Considering Lexi’s rapid progress right out of surgery, we thought she would just fly through her recovery. Well, one week later, we are still here. As a recap: Last Wednesday she had her Norwood procedure, which involves going through her breastbone, putting her on a heart/lung bypass machine, reconstruct the aorta, and put in a shunt so blood can get to her lungs to get oxygen. She was taken off of the ventilator on Saturday. I also held her for the first time since her surgery on Saturday. Sunday her pic line (an iv line that starts in her arm and runs all the way to just above her heart) was pulled out (by accident) but they decided it did not require replacing. Monday she had some breathing issues and had to go on the cpap machine to help clear out and open up her lungs. Tuesday the cpap was taken off and replaced with high flow oxygen. She also had her pacemaker wires removed. Tuesday night (last night) she had some irregular heartbeats that the nurses and doctors were not able to diagnose so they couldn’t treat them, either. She pulled herself out of them and never had increased blood pressure or decreased oxygen saturation levels. Hopefully they were just “flukes” from pulling out her pacemaker wires yesterday. Today she seems to be doing very well. Her oxygen flow rate has been stepped down and we are on the verge of the amount of oxygen she needs to be on to start oral feeds again. ***** My little girl has been through a lot! She keeps getting so close to being ready to go then she has a minor thing happen that keeps us here another day or two. She is such a strong, feisty little girl, and she is just going to recover at her own speed. One of the frustrating things, too, is that she keep getting hooked up to different things. So, even when she is disconnected from one thing, something else is still attached and it makes it such a challenge to hold her. I held her for a long time yesterday but I haven’t today because it seems like it will be too much of a hassle. I hate that. I know the nurse will help me position her, but by the time we get settled and comfortable she will have to go back on the bed to get checked out again. Thankfully she was awake when Jason, Levi and Deborah came by so Jason and Levi both held her before we went for lunch. ***** Please continue to pray for her lungs to improve and for her heartbeat to stay regular from here on out. Also, pray that Jason and I can focus on taking one day at a time and not worry so much about getting her out. It’s so hard to remember that this is the best place for her when we want her out so badly. Also, pray for the families here who still can’t hold their babies for one reason or another. We know of at least three families who are waiting on a heart transplant for their babies and I can’t imagine how excruciating that wait must be, even now that we are here and also living with the day to day struggles of CICU life.

One week old!

One week old today! In many ways it feels like she has been here so much longer. My emotions are running wild today. It probably doesn’t help that I was up with Levi in the middle of the night and crying from frustration with him at 3am. But, all that being said, I’ve really had to take a look at how I am coping and what I am feeling through all of this, even if it has only been a week. This post is more about me and being open about how I am coping. Maybe it will help someone else with what they are going through. ***** I love being at the hospital with Alexis, watching her get stronger every day, and being there for those big milestones. I think it’s because that’s all I can do right now. I can’t be her mom yet, which is really hard for me. I’ve only changed one diaper so far (not a huge deal, since I know there will be plenty more to do in the near future) and I haven’t fed her since Tuesday. I can count the number of hours I have held her on my fingers and nothing I do can ease her pain or discomfort. This whole experience has been God teaching me to let go a little bit, and I’m grateful for the lesson in faith, but I can’t help feeling like I am a huge part missing from my little girl’s life. I want to be able to hold her without all the tubes and wires attached to her. I want to be able to hold her whenever I want, not around the nurses who are taking such great care of her. I want to be able to change her diapers and feed her. And I want us to be able to be together as a family, not rotating out who can visit her based on the number of people in the room. ***** There is also Levi. My little boy has been so great through this whole thing and we have been asking a lot of him. He is very much a routine kind of kid. He likes to know what is happening where, and who is participating. While we are here there is basically a revolving door of visitors. Every few days new people come to stay for a while, then they leave again, normally taking someone else with them. While he has done incredibly well with all of these transitions, he is still only two, and we can only expect so much from him. Since he is so out of his comfort zone during the transition times, he is finding other things to control: potty and bedtime. He absolutely refuses to go to the bathroom on the potty now, and bedtime is an hour-long battle of wills. It is that much harder because we are essentially in a hotel and we don’t want him to disturb any of the other families. You should see the circus we go through to get him quietly to sleep. We know it is going to be yet another hard transition when we go back home, but we will face that when we come to it. I want to spend as much time with Levi as I do with Alexis. Unfortunately, having just had a baby a week ago, I’m still lacking in the energy department. He loves spending time with his dad and his Grammie, but I still want to be his mom and I don’t want him to suffer because I am spending so much time with Alexis. ***** Then there is Jason. He is the best, most amazing husband and father any girl could ask for. He has taken such great care of us and tries so hard to make sure all of our needs are met. He takes care of Levi while I recover and spend time with Alexis, and he makes time for Alexis when I have Levi at bedtime. We have not really had a chance to spend much time together, just us, but when we have a chance to talk I realize this is hard in different ways for him. I won’t go into details, but please pray for him and all of these emotions that he has to sort through. ***** The update for today: She started off super and I spent a lot of time holding her. After a little while her color started changing and her breathing was very labored. They decided the best option was to put her on a cpap machine to help inflate her lungs. Since she was extubated she has had a lot of “secretions,” aka mucus in her lungs, and that has caused a bit of a collapse in her left lung. The doctor had mentioned this morning, before all of the breathing issues came up, that we might be moving out of the CICU today or tomorrow. I’m a little discouraged at this setback, but we will continue to pray that God opens up her little lungs and keeps healing her quickly for the next critical steps and beyond. Thank you for the continued prayers and know that they really do mean so much to us.

9.15.13

Yesterday was an awesome day for all of us. Alexis got her vent (breathing tube) taken out, which was a huge milestone. They anticipated she would do well off the vent and so far, so good! We were hanging out around her while she was cooing and being very happy, and the volunteer photographer happened to walk by and ask what was going on. She offed to take Lexi’s picture, for free, and at that moment the nurse asked if I wanted to hold her for the pictures. I couldn’t believe it and I broke down into tears right then and there. We had expected to hold her the day after her vent came out, not the day of. So the photographer was able to get a good set of pictures with me holding her. It was amazing! *****Alexis continues to do very well this morning. Since getting her vent out she has not done a ton of sleeping, not even when being held. I guess she got enough sleep in the last few days that she was just ready to go! We had a little issues this morning with her PIC line getting pulled out, probably while passing her around. They were able to get some other iv’s put into her, which was a good thing. She seems to have a touch of reflux this morning, which could mean she is not tolerating the volume of milk going into her, or she doesn’t like all of the oral medicines that are going into her, or a combination of the two. We will keep an eye on it. ***** I have been pumping breast milk for her, which has gone well since about day 3. The first two days I was in too much pain to really be effective. The nurse just told me that I have enough milk pumped for her to last her until she is three. I doubt it, but I appreciate that he recognizes it is not all that fun or easy to keep a good supply up. Levi thinks pumping is really weird and he doesn’t quite get it, but he gets bored easily enough that he doesn’t stick around too long while I’m doing it. ***** I think all of our visitors had a chance to hold her for a little bit today. Even Levi got a chance! Please pray that she continues to do well, that she tolerates her feeds so we can try a bottle soon, and that her lungs clear out so we can turn her oxygen down some today.