Thursday, October 24, 2013
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!
Sunday, October 6, 2013
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.
Sunday, September 29, 2013
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!
Tuesday, September 24, 2013
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.
Wednesday, September 18, 2013
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.
Monday, September 16, 2013
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.
Sunday, September 15, 2013
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.
Thursday, September 12, 2013
Alexis made it out of surgery and is now in recovery. Overall she did well in the surgery and they had no major complications. When she was first out of surgery her heart rhythm was irregular so she was on the pacemaker wires. She got her rhythm back and the surgeon said her heart is functioning well. She still has the pacemaker leads in her chest, just in case her rhythm goes too low. She currently has several IV lines, a breathing tube, an NG tube to make sure she doesn't throw up, several drain lines in her chest to take out the fluid around her heart and lungs, and many leads to monitor her heart rate, oxygen saturation levels (O2 sats), blood pressure, and some other things. The doctors have been very encouraged by her progress and they all think her numbers look really good. The surgeon was able to close her incision, which I didn't expect, and they only do that if they are pretty sure they won't need to get back in there for any reason, and that she won't have too much swelling. The physician that cared for her overnight told me he was surprised at how little pain meds she had needed up to that point. She has been a little finicky this morning, but nothing out of the ordinary. I heard one nurse say, "She's finally acting more like a Norwood. Up until now she hasn't been acting like a Norwood." Not that I want her to deviate much from the usual course, but I'm glad she did so well overnight. ***** I typed up a little blurb about what all her surgery would entail. I tried to make it user-friendly and in terms that are easy to understand. Sorry if it is hard to follow at all: The Norwood consists of three main modifications to the heart. First, they need to open the wall between the left atrium and right atrium (the top, receiving parts of the heart) so that the blood can mix. Unlike us, where the blood stays separate in the heart, it is important for her blood to mix as much as possible because only one side (the right side) of her heart is functional. After that, the doctor uses the pulmonary artery, opens it up and attaches it to the aorta. Her aorta (the tube that takes blood away from the left side of the heart and to the rest of her body) is very small, so using the pulmonary artery helps make it an adequate size. The pulmonary artery normally takes blood from the right side of the heart to the lungs, but since it is now being used to take blood to the body, the doctor has to put in a shunt. That is the third part, called the Sano Shunt. This shunt (tube) takes blood from the heart to the lungs to get oxygen. ***** This little girl has been through so much in her three days of life. Below are some pictures of before and after the surgery. The one after the surgery is hard to look at, I know, but just remember that all of the things attached to her are making her better a little bit at a time. Thank you for your continued prayers. Today could be touch and go, but so far we are seeing God's work and feeling his peace wash over us.
Wednesday, September 11, 2013
As Alexis heads back to surgery, I have a chance to let everyone know how the hospital stay has been since she was born. After getting settled into the CICU the doctors decided to put a PIC line in (basically an IV line that runs from her upper arm, through a vein, to where it almost meets the heart. It doesn't go directly in the heart, but it stops just a bit before it.). The PIC line is for giving medicine as well as drawing blood (it's two tiny lines in one tube, basically). They asked us to step out for that procedure because, while it is relatively minor, there is a bit of blood sometimes and they babies don't like being held down. After that was put in we got to hold her and snuggle her all we wanted. I tried feeding her but she was too sleepy. The way she differs from a normal baby now is her respiration rate is higher and her oxygen saturation is lower, meaning her blood doesn't get as much oxygen as yours or mine. Other than that, she looks great! They had her on a medicine called prostaglandin that kept her heart functioning before the surgery. ***** Levi came to meet her and was not exactly sure about what was going on. He made the connection that the "Lexi" we had been taking about while I was still pregnant was now the "Lexi" he was looking at, and he just didn't exactly know what to think. He didn't want to hold her yet and he didn't really know what to think about me in a hospital bed/gown either. Thankfully he was surrounded by people he loves so he wasn't upset, just unsure. He started asking questions about her, though, and I knew he would warm up to her right away. After he went to the Ronald McDonald House for the evening with Jason and Deborah (Jason's mom), my parents brought me back up to my room and then they went to sleep in their RV parked at the hospital. ***** Yesterday morning we got up and went to see Lexi pretty early. She had a good night and even ate some from a bottle. We just had a snuggle day yesterday and only two people came to scan/test her. We all, including Levi, spent a lot of time with her. The hard part is only 4 people are allowed in her room at once, and there have been 5+ people here, but we are getting it figured out. She tried nursing about 4 times yesterday, which was extremely exciting! We also had some skin-to-skin time and just relaxed. I'm having major cramping when I feed her and pump for her, which is really frustrating because I haven't had the pain-tolerance to pump much. The hospital staff has been PHENOMENAL, though, and extra super supportive. Last night she ate several times from a bottle and did great. ***** I woke up early this morning and went to see her at about 6:30. The nurses do shift-change from 6:45-7:45 so nobody is allowed in or out of the CICU during that time. We just snuggled today knowing that her surgery would happen around lunch time. My mom got to her room around 8:30. Jason, Levi, Deborah and Valerie (Deb's friend) came by around 9am. Levi really wanted to hold Alexis again, which is adorable, so while he did that I went to my room to get ready for the day. Everyone just spent a lot of snuggle time with her and we prayed around her. The surgery team came to talk to us and give us the rundown of what her surgery will be like. I had some emotional moments and we all cried a little, but praying helped so much. ***** They took her back at 12:30pm and now we just wait until she is done. We have had our first update and all of her IVs went in fine. They were about to hook her up to the heart-lung bypass machine and we'll get another update soon. We are so grateful for the continued prayers and I will let everyone know once she is in recovery. I'll also try to get some pictures posted once I get some off of my phone.
I know not everyone is interested in the birth story, so that is why I made it a separate post from the general update. So, I checked in to the hospital at 8pm on Sunday, September 8. The nurses were waiting for me and told me that I was their only patient for the night! I got all settled in my room, met with the anesthesiologist, the OB and my nurses. Throughout the evening I also met some of the NICU staff and some of the CICU staff. The OB checked me and said I was 3-4 cm dilated already, and because of that she didn't want to start any Pitocin or anything until in the morning, since I had explained how quick my labor with Levi was. So, Jason and I went to sleep knowing that the plan was to get up at 4:45am to get things going. I think I slept for 3 hours total, between being hugely pregnant and drinking a half gallon of water so we could avoid needing a bunch of IV fluids. ***** At 4:45am we were woken up and things started happening. My Pitocin was started and we were good to go. The OB came back at 6am and broke my water, at which point she said I was a solid 4cm and 75% effaced (the cervix has to thin out before it can dilate, so it was 75% of the way to completely thinned out). After she broke my water I started feeling the contractions. By 7:30am I was in a huge amount of pain so I decided to get an epidural. I can see why people love them! It instantly made the pain go away and, although it made my whole body a little bit tingly, I was able to rest and relax. ***** At 9am I was 6cm dilated. At 9:15 I was 7-8cm and by 9:35 I was feeling a TON of pressure. I called for the nurse, she checked me and, sure enough, it was time to push! She had me do a practice push and thought it looked adequate, so she called in the rest of the team. There were about 15 medical professionals in the room with me when I started pushing, as well as Jason and both of our moms. The epidural was set to such a level that I could feel the contractions as pressure but not pain, which is good because pushing in and of itself was painful enough! I pushed for about 15 minutes then saw my beautiful baby girl open her eyes as Jason cut the cord. She started crying right away and everyone made comments about how big she was and how great her lungs sounded. Alexis Dayne Schneider was born at 9:58am, weighing 7 lbs 2 oz, 20 in long. ***** While they were working on her, the OB delivered the placenta and then I was able to hold her for just a moment. They then took Alexis to the stabilization room where they attempted to put in some umbilical catheters to get her medicine going. While they did that the OB stitched me up. Apparently Alexis came out with her hand on her face, palm out, and ripped me pretty good when her elbow popped through. The NICU team was not able to place all the lines they needed to in her umbilical stump, so they brought her back to me for just a few minutes then had to take her to get the IV put in somewhere else. She looked completely normal, except her nail beds were a little blue. It was so surreal that she was actually here! ***** They took her down to the Cardiac ICU (CICU) to place the lines, and I sent Jason with her. I was able to get up a little while later and go down to see her, too. She was all bundled up and had a ton of lines on her, both medicines and monitors. It hit me right then and there that she was, indeed, sick. There is nothing we can do to make her better except pray and have her go through surgery. So, that is the plan!
Friday, September 6, 2013
Holy cow, am I miserable. My body is screaming that this baby needs to come out, but so far she is staying put (thankfully, since Jason isn’t here yet). My hips hurt, my hands hurt (weird, I know), my belly constantly aches, my feet are swollen to twice their normal size, and I’m no longer sleeping. It is not pleasant to be me right now. I know it is all for the benefit of Alexis, and getting her as big as possible before she gets here, but I’m REALLY ready for her to vacate the premises. Not to mention, Levi has been exceptionally clingy and grumpy recently. I think he is getting his next set of molars, and he is completely outside of his normal since we have been here and his daddy is gone. Hopefully he goes back to his normal self when Jason gets here tomorrow because I’ve basically had it with the whining and complaining and grumpiness. ***** Thankfully, I got a phone call today that informed me my induction will be moved to Sunday night instead of Monday night. Woohoo! Apparently two of the ladies that were supposed to be induced that night (and why I got bumped to Monday) have had their babies already, and the lady who is kind of like my case manager called me to ask if I wanted to move it. Yes please! I can’t believe that by Monday evening I will have a daughter. Crazy. Also, if she comes on Monday like she should, she will share a birthday with Bowen (bowensheart.com) and another heart kid that I don't know yet. Amazing how God does simple things like that for us, and gives us connections to people we haven't even met! ***** I had a fetal echocardiogram done on Wednesday that showed everything still looked about the same. Dr. Y (cardiologist) said he was slightly concerned that her atrial septal defect (the hole that most infants have in their heart to allow the blood to mix until they begin breathing oxygen) was a little on the small side, but she was being such a stinker during the appointment that he wasn’t able to get a second measurement. He thinks she will be OK and won’t need an intermediate surgery, between birth and before her Norwood procedure, to make the hole bigger. The will check her immediately after birth to make sure, but he didn’t see any of the secondary signs of it being too small. Please pray that it is ok and that she won’t need a surgery before her Norwood procedure. ***** I had a second NST today where they just measure the baby’s heartbeat and my contractions and she passed with flying colors. Prayers that she stays put until Sunday would be greatly appreciated since we will know for sure the Levi-care arrangements, Jason will be here, and she will be born at the Children’s Hospital where they can check her out right away, instead of having to transport her from the University Hospital (500 yards away, but still). Thank you all for your prayers! Baby to come in no more than three days!
Tuesday, September 3, 2013
I know I just posted about our trip so far, but I feel like I left out some important parts, like how we are all feeling through this. Jason went home yesterday so he could work one more week before our family expands, and my mom came out to help me with Levi this week. Levi is napping right now and my mom is doing laundry, so I’ve been sitting in the room doing a lot of thinking. Most of my thoughts revolve around how faithful God is. First of all, He made sure that we found out about Alexis’s heart well in advance. We have been able to process everything and plan for it. He allowed for us to make provisions for her and plan her medical care down to the day she will be born (unless she decides to come early, of course!). He put a peace in our hearts about Children’s Hospital Colorado and about the doctors that will be taking care of Lexi in those first few precious weeks of her life. He just continues to take care of us, and for that I am so grateful! ***** Most people don’t know this, but it took us several month to get pregnant this time around. I was hoping for another May baby so I could have the summer off and possibly go back to work the following school year. Well, obviously that didn’t happen. Once we found out we were due in September, we had to make the decision as to whether I would start the school year and then take off for a few weeks, take the whole first semester off and return in January, or take the whole year off. Since my Premier Designs jewelry business was doing well, we decided I could just take the whole year off. Fast forward to May. On May 3 (Levi’s birthday!) we had our 20 week ultrasound. This is supposed to be the only on we have, but because the baby wasn’t in the right spot to get all of the required pictures, we had to go back in 4 weeks. At the 20 week scan the technician told us we were having a girl! May 20- my best friend has a baby girl of her own! I was so excited and it was such fun time getting to see her become a mommy again. May 22- the last day of school. This is supposed to be an incredible day full of fun, laughter, and good memories. Unfortunately, that day will always be tainted by the loss of a very close friend and colleague. She passed away in her sleep and I think about her every single day. She was so excited that I was going to have a little girl and was always doing sweet things for me and the baby. We (all of our colleagues) were devastated by the news and I can’t imagine being at work this year but not having her across the all from me. (Secret blessing: that I decided to take the year off before knowing of her passing.) May 31- Memorial service held for my friend and our 24 week ultrasound right after that. They were actually running ahead of schedule so Jason wasn’t quite there yet when I was called back. (Read “Alexis’s Heart” for the full story) They told us we needed to come back Monday for another scan, specifically related to the heart. We thought about it all weekend (during a baby shower for two family members) and convinced ourselves it was probably nothing. We found out on Monday that it was, indeed, a VERY big deal. (Secret blessing: we were not weighed down by knowing the seriousness of the problem while celebrating my friend’s life or the new babies that would soon be born.) June 3- We learn the diagnosis is HLHS. The cardiologist we see the same week walks us through what he anticipates our journey to be. We realize now that it is a very good thing that I will not be returning to work at all (remember how frustrated I was with my September due date?) because not only will Alexis need surgery in a few days, but again in 6ish months. All of a sudden God’s plan is becoming very obvious, and it is clear He wants the best for us. *****Yes, what is happening to Alexis is very scary, and we don’t know why this condition has been given to OUR daughter, but we already know that God is helping us through it. He has orchestrated all of these events to be laid out in such a way that we are able to cope with them more easily and at a better time for us than when they “should” have happened. We “should” have never even found out about her HLHS because it wasn’t detected on what is normally the one and only ultrasound. We “should” have found out the day of the second ultrasound but because it was a Friday afternoon, we had to wait until Monday and were able to assume it wasn’t a huge deal during the baby shower. I “should” have gotten pregnant the first month we tried, like we did with Levi, so I could have a May baby and go back to work in the fall. See what I mean? God protected us from so many things, mainly our human emotions and decision-making skills, and proved to us that He CLEARLY knows our needs better than we do. Because of all of these things, we know that He has an enormous plan for Alexis, and will use her to do mighty things. She is already proving to be strong and feisty, and we will see in one week exactly how strong and feisty she is. ***** I had my first round of appointments today, including an OB appointment and a non-stress test (they just check her heartbeat and make sure it goes up and down like it is supposed to). Levi loves having his Nana around! He has not adjusted quite as well as we had hoped he would, but I know that kids are resilient and as long as we keep things as normal as possible for him he will do fine. I will continue the updates when I have more information or if things start happening. I’ve realized that blogging is kind of therapeutic, so forgive me if they get a little introspective at times.
Sunday, September 1, 2013
*****Sorry for the delay in posting, I know many are wondering how our trip has been so far. We left for Denver on Friday afternoon, around 3:30pm knowing there was not a room for us at the Ronald McDonald House. We made reservations at a hotel and just went for it. Levi did fair on the drive. He was ready to get out by the time we got to Santa Fe, though, which is only an hour and a half or so from our house. We stopped for dinner there then hit the road again. We stopped several more times along the way to let Levi get out and for me to go to the bathroom, of course. Jason was brilliant and came up with several games to keep Levi entertained for short bursts, and I sat in the back with Levi for a lot of the trip. When we had about 2 hours left to go, Levi had a meltdown because I wouldn’t let him sit in my lap (while the car was moving) and he did not understand why I wouldn’t get him out. It doesn’t help that he is teething… *****We made it to the hotel at about 12:30am and went right to our room. Levi had slept for about an hour and a half in the car, so we had no idea how getting him to sleep would go. Turns out it was pretty challenging. Jason wasn’t feeling well so I took on the task of getting him to sleep. It took 45 minutes! Needless to say, I was exhausted by 1:15am when I finally made it to bed. *****The next morning, we got up around 7:30, got dressed, and went to eat breakfast. After breakfast, Jason took Levi swimming for a while so I could get showered and ready to go. We learned about an open room at the Ronald McDonald House so after lunch we headed over there. We checked in, got the tour, then tried to get Levi down for a nap. It took him an hour to fall asleep… I’m not liking this trend! He slept for 2.5 hours, though, so it wasn’t all bad. After he woke up and we got unpacked, we headed to Target to stock up on groceries. In the Ronald McDonald House we get a small pantry (that locks) and space in a refrigerator for our food. We just have to label everything that we don’t want to share. There are many meals provided by outside organizations, usually about a meal a day, but the Saturday and Sunday groups came down with illnesses, so we haven’t been able to take advantage of those kinds of meals yet. Tomorrow McDonald’s is providing breakfast, but I will be taking Jason to the airport and picking my mom up at the airport at the same time, so we will miss that, too. Eventually we will be able to eat with the rest of the house! When it was time to go to bed last night, Levi took another hour to fall asleep… not cool. *****This morning we got up around 6:30, after a rough night. You know how it goes in a new place, a new bed, different “hotel” sounds, including people having loud, tearful phone conversations… Anyway, after we ate and got ready, we went to the Denver Zoo. Unfortunately Levi was a grumpy pants, so that was a challenge, but the zoo is really nice and we will definitely be going there often (partly because it is free to people staying at the RMH!). After lunch we came back and Levi napped, but this time only for an hour and 20 min. We played here for quite a while then went to the store to get dinner food. After dinner with another family staying here (5 year old boy going through radiation), we played for a while longer (there are FANTASTIC play areas here for kids Levi’s age) and now it’s bedtime. *****Thank you all for the incredibly generous gifts you have given and the constant prayers. We have had a very generous person pay for our entire stay here already, not to mention the incredible gift cards that have already bought us every meal so far and all of our groceries. The gifts for Levi have been a huge hit and he is enjoying every single one of them. The prayers are sustaining us and giving us the comfort that only comes from the Lord. We know now, for sure, that this journey is not going to be easy, and we can already feel pressures from many sides, but the support, prayers, and love coming from everyone at home has really helped ease some of that tension. We have a mailing address now, for those who are interested, so please comment or get ahold of me if you would like it. Our regular address is still fine, too, since we will constantly have people over there and rotating with people up here. Thanks again, for everything! More to come in the coming days…
Tuesday, August 27, 2013
As we get ready to head off on this adventure, I'd like to lay out our specific prayer requests. Unfortunately, because of the formatting issues I'm having with the blog, it might be a challenge to read. But, hopefully you will get the idea. Thanks in advance! ***** That we have a safe, smooth trip with Levi and an 8.5 month pregnant lady. ***** That there is a room available for us at the Ronald McDonald House when we get there. ***** That Alexis holds off until my induction date: September 9 at 8pm. ***** That Alexis is much stronger than the scans have shown so far, and that her heart is functioning better than anyone thought. ***** That the doctors know the right timing for when to treat her with the different medicines. ***** That we know how to balance our time between Alexis and Levi, and for peace of mind when not with one child or the other. ***** That everyone would have safe travels to and from Denver while we are there. ***** That the doctors would know when exactly the right time to do Alexis's surgery will be, and that God uses them to heal her little body. ***** Once the surgery is over, we pray she would heal quickly. ***** That everything with our insurance gets figured out before it becomes a big hassle. We thought it was already figured out but we got a phone call today saying we need to talk to our insurance company ASAP. ***** That Jason and my relationship withstands this enormous test and we come out of it even close to each other and closer to God after everything is all said and done. ***** That God uses Alexis to make a huge impact in this world for Him, and that she rises to that calling. She is going to have an amazing story to tell and we pray that she doesn't shy away from it. ***** That Levi and Alexis can bond, even through the difficult circumstances. ***** There are many more, but I will save them for another day. These are the biggies and we so appreciate all of the prayers. We know prayer works, and we are excited to see it work yet again.
Friday, August 23, 2013
I simply can't believe that in one week I will be uprooting my life to relocate to Denver for an unknown amount of time, but a minimum of 6 weeks. Jason will not be with me the whole time, but Levi will. One week and 3 days into the relocation a new family member will be added. That is the scariest part. I've had a hard time with my emotions because I'm so tired of being pregnant, but at the same time I know that having Alexis and finally meeting her is just the beginning of the pain and struggles we will go through as a family through this journey. I so badly want to meet her and hold her, but I know she is safe inside of me and for that reason I just want her to stay put as long as possible. I know I can't delay time indefinitely, and that September 9th will be here before we know it, but it has felt so far away for so long and now it feels like it is right here. I keep telling myself, "my baby girl is going to need open heart surgery" but that doesn't make sense in my human mind. How can something that is supposed to be so perfect, something that I feel squirming around inside of me at this very moment, be so so sick? So sick that she will die if we don't do the dreaded surgery. Then I tell myself that God has a magnificent plan for her life, and He is going to use her for amazing things in the future. I so badly wish I could go through the surgery for her, or that she didn't need surgery at all, but maybe that is required so she can tell a specific story and impact the most people through it. ***** Jason and I have started to talk about our plan for while we were there. Things like who is going to spend time at the hospital and who is going to stay with Levi? When is Levi going to come visit Alexis? Should I stay at the hospital the first couple of nights, until her surgery, so she can breastfeed as often as she needs to? Or should I go to our place to sleep because I will sleep better? What kinds of things can we do that are close to the hospital, just in case we need to get back there quickly, but still spend time together as a family while she is recovering? We don't know the answers to any of these questions yet, and for those of you who know how much of a planner I am, you know that is causing even more stress. My mom thinks we are fighting an uphill battle trying to plan anything, but I explained to her that trying to plan is keeping me sane. Even if nothing goes the way we think it will, at least we are not sitting idly by while the date just gets closer and closer. ***** One week, that's it. Our prayers at the moment are for an easy travel day when we leave, a quick and uneventful delivery, and that Alexis is even stronger than the doctors are anticipating when she is born. We are also praying that our relationship just gets stronger through this massive trial. Jason and I will do whatever it takes for our family, and we know that the strain is going to be tremendous, so we just pray that we continue to seek the Lord through every decision, every day, and that we can trust Him every moment of every day. We also pray that Levi is as resilient as we think he will be, and that we can continue to be the best parents possible to him through this as well.
Tuesday, August 13, 2013
I got a phone call today that my induction date has been moved back a day. Apparently there is a scheduling issue that has come up in the hospital so they needed to move my induction to the evening of September 9, rather than September 8. Nothing major, but I just want to keep everyone in the loop that is interested. I have all of my Non-stress Tests scheduled for when I'm in Denver before Alexis is born, as well as an OB appointment and a fetal echocardiogram. I will have a baby girl in 4 weeks! Aah!! ***** I had another baby shower this weekend thrown by some fantastic friends. I feel so spoiled! Many of them went in together on a pretty big gift (a genuine Coach diaper bag... Hot Pink!), and I know how expensive it was so I am scared to use it! But, as another friend pointed out, I better use it or why have it? Ok, ok, I guess I'll just use it and not feel guilty about it. ***** I've been working on getting Lexi's room ready for her to come home to and it is finally starting to come together. I just got the last of Levi's things moved into his room (while he napped). All that is left in Alexis's room is to finish painting (I'm thinking one more day and I'll be done!), move the furniture back to it's original spot, and dust/clean everything. Then we will be ready to bring her home! I even have hot pink letters that spell out her name to go on her wall above her crib. These are the activities that make it seem so real that we are about to have a daughter. I also have two ultrasounds each week where I get to see her cute little baby body and face, and although the ultrasounds seem a little unnecessary, I am not complaining one bit about the drive into Albuquerque, the small expense (thank the Lord for insurance!) and sometimes there is a bit of inconvenience, because every time I see her I get an overwhelming sense of pride that I am going to have a baby girl! God has already blessed us with her and I can't wait to hold her in my arms. ***** As I've been cleaning I keep running across things specifically for children in the NICU that have been given to me (clothes, blankets, a care package from an HLHS support group, etc.) that make it hit me each and every time that our journey is not going to be so easy in the beginning with Alexis. She is going to have a rough time, which means we are going to have to figure out how to be the best parents for her while we are not the only care providers in her life. Not only that, but we have to be the best parents for Levi, too. That has been giving me more anxiety than anything else because the last thing I want is for Levi to suffer because of all of the care and attention Alexis is getting. I know kids are very resilient, and he is only 2 years old, but he is my child, just like Alexis is my child, and I want him to know constant love just like we have been up until now. I guess that is my current prayer request, that we would find the appropriate balance between caring for and giving attention to both of our children while Alexis is in the hospital and things are not "normal." ***** Thanks, as always, for the prayers and support. I will post as things change or more details become available!
Wednesday, August 7, 2013
This weekend my parents celebrated their 30th wedding anniversary by renewing their vows in front of their closest friends and family. It was a tremendous success and it was so great to see all of these people that I have grown up knowing. Part of me felt a little bad, though, because I felt like I was taking the spotlight off of them because of everything going on with Alexis. I told the same story countless times to everyone I said "hi" to at the party and all I really wanted to do was celebrate my parents. However, looking back a few days, I realize what a blessing it is to have all of these people we know and love praying for Alexis and sharing her story. They are also learning some things so hopefully more people will know about HLHS and we can all be aware of it. There were even a few doctors at the party and it was interesting hearing the questions they asked compared to everyone else. The police chief and the chief of the fire department also happen to be very close friends of our family, and they said that they will be keeping an eye on our house for however long we are gone. They will make it their personal job to make sure nothing happens to our belongings while we are gone. Another blessing! ***** I could not have been born into a better family or married into a better family. My own mother has offered to come to Denver with me and stay as long as I need her to, especially before the induction (and before Jason joins Levi and I up there). What a blessing she is! My in-laws have done countless things for us, including watching Levi during all of my appointments, making us dinners, and helped relieve a few financial burdens. We had a "Celebrate Baby Party" for Alexis this weekend (where, I might add, I asked that people NOT bring presents... I just wanted to celebrate with them!) and we were given a ridiculous amount of money in gift card form. We are set for meals in Denver, I think! I really believe people want to help in whatever way they can, and so far we have been the recipients of some amazing amounts of generosity. My mother-in-law also made Alexis a BEAUTIFUL Very Hungry Caterpillar quilt that every family member signed for her. It is absolutely gorgeous and I can't wait to get her room painted so I can hang it up on the wall. ***** People keep asking what they can do for us and for now my only answer is PRAY! The more prayer we have, the better, and we are firm believers that God answers prayer. We pray that Alexis is healed, either by miracle or through the doctors and surgeons. God is the Great Physician and He holds all of the healing power in His hands. She is going to have an amazing story to share, and we pray daily that her story brings people closer to Him who made her.
Sunday, July 28, 2013
********** Will show a new paragraph this way. I don't know why this formatting can't handle paragraphs, but I'm still trying to figure it out. Until then, that will have to do. ********** As many of you know, I went to Denver this past Friday and Saturday to check out the hospital in Aurora that we will be having Alexis at and where she will be having her first surgery done. I'm so grateful that my mom, my aunt Laura (doctor) and my aunt Leslie (lives in Boulder) were able to come with me. They were able to look at things from a little different perspective and support me in my appointments. Laura also brought the medical perspective to the situation, which gave me more confidence. It was a long, tiring day on Friday, centered around Alexis, and I'm finally glad to have some more concrete answers. ********** The first appointment was the fetal echo and a meeting with the cardiologist. The ultrasound tech was wonderful during the echo and the cardiologist was fantastic. He explained how a normal heart works and how a HLHS heart works. He said the defect was most likely there at 8 weeks gestation, and the defect made it very hard for the left side of her heart to grow because it wasn't getting adequate blood flow. He made it very clear that I didn't do anything to cause this abnormality, and it was most likely not genetic, either. I think it is just simply God's plan for Alexis to give her an incredible story to share about God's love and healing power. ********** The cardiologist explained the different treatment options to us (palliative, meaning just doing the best you can with what you have, and transplant) and the risks and benefits associated with each option. They have a 90% survival rate for the 1st surgery, although the period between the first and second surgery is still very critical. The second surgery has 95% success and the third has 97%. He explained that they used to do many more transplants than surgery, but have decided the 3 stage treatment has better long-term success (50% of babies who get a transplant either die or need yet another heart). There is not a ton of long-term data for the palliative surgery, because they have just started tracking these kids within the last few years, but the short-term data seems pretty encouraging. He also said they are all hoping that in 20 or so years, some new generation doctor is going to develop a phenomenal was to treat these kids through something they haven't even thought of yet. ********** He spent some time talking to me about how hard this is going to be on our family. He said it brings out whatever is already strong in our marriage, good or bad. He said he has seen this situation tear families completely apart and pull other families even closer together. He also said that parents are encouraged to be part of the medical team, including being part of the daily rounds discussion about their child, and that the doctors and nurses trust that we know our child better than anyone else. There are no limits to visiting hours and anyone can come visit. He encouraged me to breastfeed before her surgery and to pump after. 1/3 of babies go home with a g-tube, so we will have to mentally prepare for that as well.********** Next was our appointment with the chief cardiac surgeon at the hospital. He talked us through many similar things. He explained that there are two options for part of the surgery that will take place and told us which one he thought would be best for Alexis, considering her anatomy. The surgery will take 4-5 hours, if everything goes well, and will happen at 3-4 days old. She will be cooled down so her body slows down a bit, then will be put on a heart and lung bypass machine. Of course, this is one of our fears but we trust the surgeon and his team to do their very best work on her. ********** After that, my contact at the hospital, Carey, took us on a tour of all the relevant places. We went to the CICU (Cardiac Intensive Care Unit), the NICU, labor and delivery, and walked passed the operating room. It was very hard seeing all of the sick kids, but it was kind of a reality check. ********** Finally, I had an OB appointment with a complete anatomy ultrasound. They said she looks great, other than the obvious heart problem. She is still measuring a week ahead and I'm scheduled for my induction for the evening of September 8 (Sunday). They are hoping she is born the morning of September 9. It's very weird knowing she won't be born any later than that date! If I go into labor before that, I will have her at the University Hospital across the street from the Children's hospital, then they will immediately transfer her over there. I'm praying that doesn't happen because I want to be with her as much as possible! ********** All the ladies who came with me were very impressed with the hospital and all the staff we met. Everyone was very straight forward with us and they didn't try to hide anything from us. They were all very personable, too! Apparently that is very rare in a big hospital like that, according to my aunt. I'm so glad I took the time to go visit because I got a lot of great information. ********** Once we were done at the hospital we went to check out the Ronald McDonald House. We got a tour, saw the rooms, and got all the information relevant to the house and to our situation. It felt a lot like a hotel but there was a bunch of common space and places for kids to play. They ask for a donation of $20 per night, but nobody is turned away for financial reasons. There is no limit on how long we can stay either. That was good news because we should expect to be in Denver for at least 4-6 weeks for Alexis to recover, then another week with her discharged to make sure she does well outside of the hospital. It is awesome to have that housing option available for us. We also drove by a couple of RV parks where we can possibly park my parents' RV so that our visitors have somewhere free they can stay.********** I came home yesterday and it has taken a while to formulate all of my thoughts about what I saw and learned. It did NOT feel like a hospital, which is good, and everyone was so welcoming. I can't say that I am looking forward to having to go back for Alexis's birth, surgery, and recovery, but I am glad that we have the option to go to this particular hospital. Continued prayers would be much appreciated and I am very anxious to see how God uses all of this for His glory!
Thursday, July 18, 2013
As many of you know, I will be headed to Denver in about a week and a half to check out the Children's Hospital out there. I'm looking forward to it because I finally got the schedule from the coordinator out there who has been setting up the tours and appointments for me. It looks like I will have a fetal echo (heart scan), meet the surgeon face-to-face and chat with him for a while, then have an appointment with a high risk OB to talk about the plan for induction/delivery. I'm very thankful that I will get to meet all of these people and have a much better idea of what will happen in August/September when all of these things actually take place. It is going to be very strange knowing Alexis's birthday though, and possibly having a say in when it is going to be. We also have to decide how to make a plan for Jason joining me in Denver. We haven't decided if he is going to come up when I have to be there (at 37 weeks), or if he will stay here and keep working for another couple of weeks until there is actually something going on. I will take Levi with me regardless, which means we will need another person there, like a grandparent or an aunt or someone, who can watch him while I have appointments and on the off chance I go into labor before the induction. Quick update on Levi: My little boy is growing up so fast! He is showing more and more personality every day and we are absolutely positive he is going to be the class clown once he gets into school. He loves performing to the crowd (once he gets warmed up) and he is very funny. He recently discovered that he loves playing in the water, be it the shower, bath, swimming pool, or sprinklers. He has also recently developed an interest in watching cartoons. It is nice to be able to sit him in front of the TV for a few minutes so I can make breakfast or get him to come inside when I need to take a short break, but his attention span is still not long enough to make it through a whole show. To be honest, I'm totally fine with that because I don't want him to watch as much TV as I did growing up. Both of my parents worked so I was very into the TV while they were at work. Hopefully, with me being home, I can keep him very busy! He is the least picky toddler I have ever met, which I am also very thankful for. He will try EVERY food put in front of him, and even if he doesn't like something he won't throw a fit, he will just leave that little ingredient on his plate (The other night it was celery in the stew. He ate around it and was left with a little bowl full of celery haha). He is always talking about "baby sister Lexi" and is starting to make some connections that the things in our house aren't all his anymore. It will be interesting when we make the transition into his big boy room, whenever we get our act together to get him in there. Hopefully that transition is relatively smooth. He is going to be a great big brother and I am excited to see how he and Alexis interact!
Monday, July 15, 2013
Ok, this post is, admittedly, a little different than most of the ones I have done recently. There are some applicable things, though... I am currently at the Premier Designs national rally in Ft. Worth, TX. Since this is now my full time job, at least for a year, I made it a priority to be here, even though I knew traveling this late in pregnancy would not be easy and I don't like being away from Jason and Levi. Little did I know I would be getting so much more than tips about selling jewelry while I was here. Jason and I came last year, so I knew a little of what to expect, but I also knew there would be new things. First of all, I met several people who are praying for me and Alexis. One of these people is with premier specifically for the purpose of praying for jewelers who ask for it. Mike is from Albuquerque and is part of the Premier prayer ministry at the home office. What an amazing company to value prayer so much that they have a dedicated team specifically to pray for their employees and jewelers! Anyway, I planned on meeting Mike but didn't exactly know how to do that. The Lord knew, however, because we just happened to run into Mike in our first 30 minutes here! What a blessing to meet him and to give him the last bit of information in person. I'm back in NM now!! We made it back safe and sound from Dallas and it feels so good to be home. It was very refreshing to be with all of those lovely ladies but it's very nice here. Not to mention it was pretty hard on my body to be sitting so much for the past few days. I have a mover and a shaker on my hands and she didn't enjoy sitting still very much! I'm very glad that she enjoys being so active, but it gets exhausting after a while. Next appointment is tomorrow and I'm sure she'll pass her test with flying colors!
Saturday, July 6, 2013
I had a quick ultrasound on Wednesday of last week that was very reassuring. Alexis underwent some large and small movement tests and passed them all with flying colors. She even surprised the ultrasound technician with how well she was practice-breathing, which is a skill she is going to need to be proficient at when she is born. The technician also checked the fluid level around her heart and said it had lowered since the last ultrasound. She wouldn't comment too much about it because she's not a doctor, but she said it looked just fine to her. We also discovered that this little girl is a contortionist because we got a picture with her feet up by her face. No wonder I've been feeling such weird movements! She was also sitting directly on my bladder, which also explained a lot. She has moved quite a bit since then, so she is keeping me on my toes. We are pretty confident we have decided on a hospital. We are thinking the one in Denver is going to meet our needs the best. Not only are they a fantastic hospital for HLHS, but they are the closest to family and there is a labor and delivery unit in the children's hospital, which is pretty rare. That means I will get to recover in the same hospital she is in, which normally would not happen. That was a big plus to me. The only negative with that is I will have to be induced, which is not exactly my preference, but I will do whatever it takes to be as close to her as possible. Now on to preparations for relocating in a few weeks. We aren't sure what exactly that is going to entail, but hopefully once we are in touch with the hospital there they will tell us what all we will need to do. Those are the updates for now. Thanks again for the continued prayers and support. We know the prayers a working because she is doing so well and the fluid level around her heart has gone down. I have already run into complete strangers who are praying for us and it is so encouraging how the prayer warriors rally around each other in times of need. We serve a mighty God and I can't wait to see how He continues to use Alexis to show His plan and His glory.
Friday, June 28, 2013
This afternoon we had another doctor's appointment. We assumed we were just going in to meet with another perinatologist but it turned out we had another ultrasound first. I'm not complaining about that at all because I love getting to see Alexis as much as possible. However, when the doctor came in after the ultrasound she said they could see some fluid around her heart. It wasn't a ton, and it didn't make them super concerned, but it was enough that we have to go back every week for the next month to have it monitored. If it gets worse, they will deliver her early, which would not be a good thing. The doctor kept saying that we want her to be as big and strong (her exact words were "rough and tumble") as possible before she is born. We will see how the next few weeks go, but prayers for that to be resolved would be fantastic! We also get monthly anatomy scans, so we will see her at least 2 more times in her entirety before she is born. The technician was able to get some 3D pictures of her and she is looking pretty cute! We had no idea going into the appointment today what the next couple of months would bring, but apparently it is a whole lot more appointments with the perinatologist (high risk pregnancy doctor), the ultrasound technician, and the cardiologist. We are thrilled to have the chance to receive such great care, and we feel very fortunate about our situation in that respect, but it is hard thinking about what is coming up so very soon, and why all of these visits are necessary. Another prayer request that we have is for guidance in picking a hospital. We are leaning towards Denver, but only because that is really the only one the doctors talk about. We are still planning to go look at Dallas and Houston, because we want to be sure and pick the best one for our situation, and we pray that God makes it very clear where we should go. We want to make sure we follow His plan through every step of this. Thank you so much for your continued prayers and support. We will keep you updated as much as possible.
Saturday, June 22, 2013
We had another appointment yesterday to remeasure and take more pictures of Alexis's heart. (She was not cooperating this time and it took the U/S tech a little while to get all the pictures he needed because she was making it very difficult. Our feisty little girl always kicks and punches wherever the ultrasound wand is placed on my belly and it is very weird seeing her move onthe screen and feeling it at the same time.) The doctor saw the same thing and said, in regards to HLHS, she has a less severe case. We are very pleased to hear that. We talked a lot about how to pick a hospital when the time comes and he gave us his 2 cents. WE talked about Children's Hospital Colorado (Denver), Texas Memorial Children's Hospital (Houston), Mott (Ann Arbor, MI), and Texas Children's (Dallas). He said they are all very good hospitals and should not have a problem handling Alexis because of the severity of her condition. We were hoping he would really have an opinion about one or another because we are having a hard time choosing. He said they already sent their initial report to Denver, because that is the hospital they use most often, but he would be happy to send our report to any other hospital we want him to. He also offered to call any hospital we wanted to investigate and talk to the staff there about the specific statistics for HLHS as the hospital. He was encouraging in that he said the survival rate is up to about 85% through the first two surgeries, and reiterated that we should go to a hospital that does a whole lot of these surgeries all the time. We are still very confused about where to go, because we know that God will do His will in her life, but we also want the very best care for Alexis possible. We want to make sure we pick the hospital that will give her the best care so we don't second guess our decision if something goes wrong. We want to be close to our family, too, so we have their support and they are able to be there for us as much as they want. We don't want that to be the only factor we consider though. Sigh. Not sure how we are going to make this decision other than pray that God paves the way for us! Thanks for the continued prayers.
Wednesday, June 19, 2013
So many people have asked us how we are feeling now that we know exactly what condition Alexis will be born with. My standard answer is, "Okay." Of course, we are not excited about having a medically fragile infant who may not even survive her first surgery, but we have decided to put all of our faith and trust in God, rather than medical technology. Of course, we know that God could use the medical technology to save her, but ultimately it is His will that will be done in her life, and we are so grateful that He already loves her enough to keep her and us right by His side through all of this. We still have not made many of the major decisions regarding her care (which hospital to go to, etc.) but we have decided we will basically do whatever it takes to be able to bring her home with us. I am so thankful that we have hope outside of our own understanding, and I know that her life will have a purpose and a meaning, no matter how long she is with us. Right now, both Jason and I feel like she is going to be with us for a long time, and we have a tremendous peace about that, but we know it is going to be a tough road through her birth and her first months of life. There has been such an outpouring of support for us and so many people have offered to help us in any way they can. What I ask for at this moment is just prayer: that she would be born healthy and that she would be healed, either through a miracle or through the doctors and surgeries. We know God is in control, but we also know that He listens to and grants the desires of our heart, as long as they are in accordance with His will. We are praying that He would heal Alexis and use her for GREAT things to further His Kingdom. She is already impacting lives and I can't wait to see how that continues once she is born. Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight. Proverbs 3:5-6 Delight yourself in the Lord, and he will give you the desires of your heart. Psalm 37:4
Monday, June 10, 2013
Last week was a whirlwind like I have never experienced before. Actually, it started last Friday. Last Friday, May 31, Jason and I went to the doctor to have the second ultrasound done on baby girl (Alexis). We had to go back because the ultrasound technician was unable to get a good picture of her spine the first time around. They were running ahead of schedule so I was called back before Jason was even there. A different technician than the time before (but who I have seen several times during my two pregnancies) started the ultrasound and was telling me what we were looking at as we went along. She said Alexis's head was the right size, she was still a girl, etc. But then, she started taking a lot of pictures of her heart. I couldn't remember what was normal, but she got very quiet while doing it. All of a sudden she flips the lights in and says, "I need to take this picture to the doctor, then I am going to take you to MFM." I was very confused and asked what MFM was. She said, "It is just over there. I will be right back." And off she went. Jason walked in the room while she was still talking to the doctor so I quickly updated him on what little information I had. She came back in the room and said, "Are you ready to walk across the hall to MFM?" So I wiped all the ultrasound gel off my belly and off we went. Apparently MFM stands for Maternal Fetal Monitoring... She walked us into an office and told the woman at the desk, "This patient needs an appointment first thing Monday morning for a heart anatomy scan." and she walked out of the room. The receptionist set us up with an appointment for 8am on Monday and said, "see you then!" Both Jason and I were so confused about what was going on because nobody had told us anything! We then asked the receptionist what was going on. She was surprised that the tech hadn't told us anything but said, "If nobody told you anything then it is probably not a big deal. If it was a big deal I think she would have mentioned something. It is probably just a small thing she found that she wants us to take a closer look at. I wouldn't worry about it." Then she sent us on our way. We were in complete shock as we walked back to our cars and we didn't even know what to think! Not only that, but we had the whole weekend to speculate and try to figure out what might possibly be wrong. I refused to do any research because I didn't want to freak myself out unnecessarily, but Jason decided to look up a few things. Monday morning, after a tough weekend, we were back at MFM for the ultrasound. After about 40 minutes, 10 of those focused on the heart alone, the ultrasound technician said she was going to take the pictures to the doctor and he would be in to talk to us in a few minutes. When Dr. Rayburn came in, he introduced himself and asked the technician to show us the picture that had her the most concerned. What she pulled up was a picture of Baby Alexis' heart, showing the 4 chambers. Dr. Rayburn explained that the left side of her heart, the side that pumps blood to the body, was underdeveloped. He didn't give us a name for the condition although he said he would be willing to speculate if we wanted him to. He then said he wanted us to go see a cardiologist because they have better machines and can take better pictures of the baby's heart. He also mentioned that there was a possibility we would need to deliver her out of state, but that was not necessarily a requirement. He kept reiterating that the next step was to see the cardiologist. Jason said, "Can you please give us a real-deal assessment of this? It is a big deal, isn't it? Since it is the side of the heart that pumps blood to the body..." and Dr. Rayburn said, "Yes, this is very serious. It is not the most underdeveloped I have ever seen, but it is still significant." So, the technician took us to the receptionist and has us schedule an appointment with another of the doctors at MFM, an appointment with a genetic counselor, and then to another person to schedule an appointment with the cardiologist at a different hospital. That appointment wasn't able to be made at that moment, but she said she would call me once she had something set up. Jason and I walked out of there in complete shock. We didn't know what to say or to do, other than to cry and pray while hugging in the parking lot. We eventually had to go our separate ways, Jason to work and me to pick up Levi. We both made a lot of tearful phone calls while still in the parking lot and were basically devastated. I didn't even know what the condition might be called or if there were surgeries that could be done to help fix it. I just knew that my little girl was very sick and would require either a miracle or immediate help once she was born. Over the next few days we cried, prayed, and talked to all of our family members. We also started to research. Unfortunately (or fortunately?) the only condition that ever came up when we typed in "underdeveloped left side of the heart" was Hypoplastic Left Heart Syndrome. We started to look into HLHS much more and realized it was a VERY SERIOUS condition that will kill the baby if not addressed immediately after birth. We could not be 100% sure that this was her diagnosis until we went back to the cardiologist on Thursday, but we were becoming more and more convinced that had to be it. We were hoping for another diagnosis but wanted to be prepared if that was, in fact, her diagnosis. Thursday morning came and after an echocardiogram that took about 45 minutes, the doctor confirmed she has HLHS. He then took us to a conference room on the other side of where we were, and told us to get comfortable while he went and made a few copies for us. He explained to us the surgical procedures Alexis would go through and how things would progress once she was born. He said HLHS is not treated in any hospitals in New Mexico, so normally patients are sent to Denver. He said we could basically choose where we wanted to go, if we had any family in other big cities. We told him we would look into it and see what we thought. He told us as soon as she is born she will have to go on a medication to keep a valve open that normally closes once babies are born (within a few hours or days it is completely closed). This valve allows the oxygenated blood and the deoxygenated blood to mix in the heart, sending a diluted mixture to the body and to the lungs. Once the valve closes, the left side would be responsible for sending the oxygenated blood to the body and her's would not be strong enough to perform that function. A few days after she is born, she will have to have surgery that allowed the blood to continue mixing in her heart, and the right side of her heart would send the blood to her lungs and the rest of her body. This is an open heart surgery and she will have to be hospitalized for at least two weeks, probably more, provided God doesn't heal her before then. Between 2-6 months of age, she will have to have another surgery that allows the blood from her upper body to go straight to her lungs, rather than mixing in her heart first. At 2-3 years old, she will have the third surgery that does the same thing for the blood from her lower body. They basically have to rewire the heart so the right side pumps all of the oxygenated blood to the body, and the deoxygenated blood bypasses the heart completely to go straight to the lungs to get oxygen. Once we knew here diagnosis, we were devastated, because we knew that this was one of the very worst congenital heart defects a child could be born with. There is only a 75% chance she will live until her second surgery, and even then she is not out of the woods. We are also encouraged because we know God already has His hand on her, and He is going to do great things with her life. He allowed us to detect her defect before she was born (if she had cooperated with the first ultrasound, we never would have found it because the first technician didn't notice anything wrong) and he has given us a ton of people who are praying for us and supporting us. We are praying for healing. We believe God will work a miracle in this situation, either through healing her before she is even born, or through the doctors and surgeons after she is born. We have a lot of hard decisions to make now, but I will leave that for another time. I plan to write regularly to make sure everyone stays updated on her condition. I don't know what the next step is, specifically, but I will just keep praying that God shows us what to do and where to go from here. I am confident He will do that for us! Thank you for the prayers. Until next time...
Friday, March 22, 2013
Yep, that's right, Levi is going to be a big brother! He should have a little sibling in the middle of September, or so. At first I was a little frustrated about the timing, but then I realized it was the perfect excuse to take a year off from teaching to focus on my family and my Premier Designs business. I knew when I started Premier that I wanted to eventually try it out as my only income, and I am confident that I will be able to replace my teaching income with it once I do a few more home shows per month! Also, I can take a little time off with that and not have to worry about clearing it with anyone or having a schedule for coming back to work, I just decide when I want to start having shows again and work from home in the meantime. We are really looking forward to our newest little addition and can't wait to find out if Levi will have a little brother or a little sister. I'm thinking sister at this point because I have been so much sicker and had so many more symptoms than when I was pregnant with Levi, but I know every pregnancy is different, regardless of the sex of the baby. We would be happy with either a boy or a girl!
So, we have taken the GIANT leap into potty training. Here's how that happened... A colleague of mine has a little boy exactly 1 week younger than Levi. She said she was going to attempt the 3-day potty training method based on a book her friend had emailed her. I asked to see the book and really liked what it said. Until I tried it. Holy guacamole it was difficult! The woman claims that 22 months old is the perfect age for potty training because they are old enough to communicate need but not old enough to have developed any bad habits. So, we went for it over spring break. I gave myself 5 days because I was skeptical. Yeah, it didn't work. Then, on top of it, we are still going to try to potty train him but daycare doesn't seem to be taking it very seriously. The first day I picked him up he was in a pull-up. The second day he was in a diaper! How am I supposed to instill that he needs to tell us when he has to go if he is wearing a diaper that soaks up everything that might indicate to him that he has to go?!?! So, Jason had a serious talk with daycare today about how we really want to see how he does at daycare for a few days to decide whether he is truly not ready or if he just needs a ton of consistency. We will see how it went when I pick him up today!! He is hilarious because he definitely prefers standing to sitting (such a boy!) and he does NOT want to stop playing to do something silly like go to the bathroom. Sigh. In other news, we have purchased a 5th wheel camper! We got a truck a few months ago in the hopes that we would eventually be able to get a camper. I told Jason that I didn't forsee going to the lake with a toddler while sleeping in a tent. It just wasn't going to happen. So, we scoured Craigslist and found one we just couldn't pass up. It should be delivered to our house tomorrow if all goes according to plan! Yay! Ok, that is most of the news for now. I will write another post here shortly with some more exciting news, but I didn't want to cram everything into one post. Until then!
Tuesday, February 26, 2013
So much for me getting better at posting, huh? Things have been crazy at work since it is time for report cards and parent/teacher conferences. Also, my Premier business is starting to pick up again, which doesn't leave much time for other things. We have managed to have some family time the last few weekends, but that might be a circumstance that is hard to come by in the next few weeks because of my crazy hectic schedule. Let's just say that I'm really looking forward to spring break! But let's be fair, what teacher isn't? Levi has been sick recently, too, on top of everything else. He had croup last weekend and then got a cold, which he is finally getting over. His sleep patterns seem to be back to normal, which is nice, too. Other than that we have just been plugging along! I have taken a more active role in leadership with Premier in our area, which has been fun but tiring. I have qualified for the leadership trip that will take place this summer at Disney World, but we haven't decided if we are going to go or not. Levi is still so young that he probably won't remember anything or really enjoy it, for that matter. But on the other hand why would we turn down a ridiculously discounted vacation to Disney World no matter how old Levi is? Like I said, we haven't decided yet. Jason is training to become a member of the volunteer fire department in the little town we live in. My dad is already trained and my brother is becoming trained in the same class Jason is in. Small towns are fun! I'm not exactly looking forward to the calls that will start coming in the middle of the night, but I suppose I will have to get used to it! I know he is anxious to actually get started, so I'm excited for him. Ok, I just got home from training and I'm exhausted, so time to go to bed. I wish you a wonderful night and a blessed day tomorrow.
Monday, January 14, 2013
So, it's been quite a while now since I have done this. I got out of the habit because school consumed my life for a while. But, hopefully I can get back at it because it is semi-therapeutic to write thoughts down. So, here goes: Work is stressful. Nobody tells you about this part of being a teacher when you are in college. Many parents expect you to "fix" their child's behavior while you are with him/her during the 6.5 hours they are at school, regardless of what their lives are like the other 17.5 hours of the day. The world revolves around you when you are in second grade, too, by the way, especially when you are an only child. 12 of my 19 students are only children, or have siblings so much older or so much younger that they might as well be only children. Talk about an interesting dynamic! I'm not sure that I could do this for much longer if I didn't know that the end was coming. Starting in May, I will be taking some time off from working as a teacher to stay home with Levi and just be mommy for a while. I simply cannot believe that my child is 20 months old. He amazes me. He can count to 10 and sings many songs. His vocabulary is astounding and he learns new words every day. He is bossy, funny, and loving. I enjoy every day I get to spend with him, although he can sometimes be clingy, grumpy, and fussy. Most days, only mom will do. I love those days and loathe those days. He is the light of my life, but it is exhausting not being able to get anything done. I guess I should get used to it, though, since I'll be a full-time mom starting in May! My Premier Jewelry business is going so well that I am going to get to take some time off of teaching to just be mom for a while, at least a few months. Thankfully I have an amazing family who all are supportive of this decision and know that we will make it work. (Plus, my mom is my best customer and she would be heart-broken if I didn't sell Premier anymore!) I love getting to build relationships and serve women, eat goodies and play in jewelry, and make a full-time income just working part-time hours! Thank you, God, for bringing Premier into my life! Not only for the income, but for the awesome friends I have made through it and will continue to make. So I know that wasn't anything super exciting or mind-blowing, but I am trying to ease my way back into this. Wish me luck!