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…