tag:blogger.com,1999:blog-72134602031759391422024-03-13T09:17:37.276-05:00Jonah and Evan UpdatesOur son Jonah Hauser Carlson (a.k.a. "Little Dude") was diagnosed with PUV (Posterior Urethral Valve), which is a bladder outlet obstruction. He was born on March 20th, 2009 and passed away gracefully and peacefully a few hours later. This is the story of how we found out, and how we (and he) fought the good fight. Along the way, we will also sprinkle in updates on our wonderful -- and thankfully very healthy -- three year old son Evan.John Carlsonhttp://www.blogger.com/profile/01894650653258847039noreply@blogger.comBlogger33125tag:blogger.com,1999:blog-7213460203175939142.post-4707000593643744672009-07-20T19:22:00.001-05:002009-07-20T19:24:19.362-05:00Four Months<p>I recently read an excerpt from Elizabeth Edwards’ book about resilience, a subject she knows a thing or two about after battling breast cancer, surviving the death of her 16-year-old son, and enduring her husband’s infidelity. This was her comment about the loss of her son. </p><p>“Right after Wade died, I said to a friend, ‘At least I had him for 16 years.’ And immediately I thought, What a stupid thing to say. It will never be enough, not for him, not for me. But the truth is, I had him for 16 years. And the day I [can’t see] the value in having 16 years with that boy is the day I cut off the edges of my life and narrow it down to a non-feeling middle. And I don’t want to live there.”</p><p>I understand. I felt the same way during one of my endless “What if?” conversations with myself. I was thinking about what would have happened if I had gotten pregnant in June or August, not July when I conceived Jonah. I immediately felt a strong sense of regret because if I <span id="SPELLING_ERROR_0" class="blsp-spelling-error">hadn</span>’t gotten pregnant in July, I <span id="SPELLING_ERROR_1" class="blsp-spelling-error">wouldn</span>’t have Jonah. We had only 37 weeks and 1 day with him but if the options are to experience his life AND death or never know him at all, I would take the joy and the pain any day. I recently read that most bereaved parents say that they would do it all again, even knowing the outcome and that’s the catch-22 of losing a child: you feel a grief that is beyond measure but it’s a price you’re willing to endure for the privilege of knowing your child. </p><p>That’s where I find myself four months after Jonah’s birth. If someone had said, “Well, at least you had 37 weeks with him,” in the days after Jonah died, I would have wanted to punch the person. But as the grief becomes less intense, it becomes easier to embrace the “rightness” of Jonah’s birth on the first day of spring. He is the perfect balance of light and darkness, of joy and pain. </p><p>Happy four-month birthday, little dude!</p><p><br />Kelly</p>Anonymousnoreply@blogger.com3tag:blogger.com,1999:blog-7213460203175939142.post-67518308923827032402009-06-04T21:43:00.001-05:002009-06-04T21:44:40.268-05:00Tackling THAT QuestionThat Question is the one that every bereaved parent dreads: How many children do you have? This question often requires a split-second decision. Do you answer honestly and create a potentially awkward moment or do you provide an easy answer and move on?<br /><br />I was feeling anxious about The Question because I had my twice-yearly dental appointment this morning. My last appointment was in December and I had declined x-rays because I was pregnant with Jonah. I wondered if they had noted the pregnancy in my file and I was anticipating/dreading the inquiry about how the baby was doing.<br /><br />The appointment started with the hygienist asking me if I’ve had any medical changes in the past six months. What do I say? But then she added, “Allergies, medications and so on.” Nope, no changes there.<br /><br />The dentist came in later, checked my teeth, and gave me a clean bill of dental health. The hygienist and I proceeded to the polishing and I thought I was home-free. But, as she was removing the bib, The Question came: How many children do you have? I considered my options and gave her the easy answer: just one. She then asked if I stayed home with Evan and we talked about the benefits of staying home. I was feeling guilty about not acknowledging Jonah so I buckled and said, “Well, our situation is complicated.” I went on to share with her, through tears, that we had lost a child this spring and it has made my relationship with Evan feel even more precious. As I told Jonah’s story, she put a hand on my shoulder and communicated without saying a word that she understood. She then shared that she had lost a child when she was almost five months pregnant and it was devastating, but she got pregnant soon after. She pointed at the photo of her son and said, “If I hadn’t suffered that loss, I wouldn’t have him.” So, what started out as an average appointment became an experience in which two bereaved parents connected for a few minutes and shared memories of their children. This conversation with her made my day.<br /><br />I’m realizing that by providing the easy answer I might avoid making someone feel uncomfortable, but I’m also missing an opportunity to acknowledge Jonah and I may miss out on connecting with another human. The easy answer just doesn’t seem worth it.<br /><br />-KellyAnonymousnoreply@blogger.com3tag:blogger.com,1999:blog-7213460203175939142.post-22790171521672338502009-05-20T22:21:00.002-05:002009-05-20T22:28:02.249-05:00Evan’s Little Brother<a href="http://3.bp.blogspot.com/_2ON5cGHpN0g/ShTJvXMbZWI/AAAAAAAAAB4/XQkgQerk8_U/s1600-h/May+2009+077.JPG"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 400px; FLOAT: left; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5338113273858057570" border="0" alt="" src="http://3.bp.blogspot.com/_2ON5cGHpN0g/ShTJvXMbZWI/AAAAAAAAAB4/XQkgQerk8_U/s400/May+2009+077.JPG" /></a><br />Today would have been Jonah’s two-month birthday. Things have been going okay but this morning was a struggle. Today was also Evan’s last day of preschool for the school year and after I dropped him off, I started thinking about how our lives have changed since September when school started. I was eight weeks pregnant so, by this time, I imagined that John and I would be adjusting to life with a newborn and Evan would be discovering the joys and hassles of a sibling. I never imagined that this school year would have been filled with anxiety, numerous ultrasounds, hospital stays, and the pain that no parent wants to experience.<br /><br />I feel that we have worked through the intense grief that immediately followed Jonah’s death and life is feeling more okay. Not great or good, but okay. I’ve been trying so hard to look for the goodness in this situation and I’ve found some but I just can’t make peace with the fact that Evan has lost his sibling. When we first told Evan that he was going to have a little brother, he said, “I’m going to teach him EVERYTHING!” He was so excited and it’s just so hard for me to accept that their relationship will not be the one I envisioned. With Jonah’s death, someone lost a child, a grandchild, a nephew, or a future friend but it’s Evan’s loss that hits me the hardest. Perhaps it’s because I’m an only child and I wanted something different for him.<br /><br />Some of John’s coworkers gave us a gift certificate for a greenhouse and we picked out a tree that was planted in our front yard two weeks ago. The tree has been a real comfort to us. We give it water each day and we’ll be able to watch it grow. I now understand why trees and gardening are so popular with the bereaved. Some of the women from my book group also donated a tree that will be planted in a park in our neighborhood. The tree will be located near the playground where Evan and Jonah would have spent time together.<br /><br />From time to time, Evan will bring up the subject of Jonah by saying something like “can I go to the hospital and visit baby Jonah?” or “baby Jonah will never come home.” Our hearts break to hear him talk about his brother that way but we are still glad to have included him in Jonah’s life. Maybe he will be able to retain some memories, and maybe he won’t, but we will are all better people for having Jonah in our lives.Anonymousnoreply@blogger.com2tag:blogger.com,1999:blog-7213460203175939142.post-32951619535702089342009-04-20T22:02:00.001-05:002009-04-20T22:04:29.077-05:00A Mom’s Random Thoughts<p>Today was a tough day because it was the one-month anniversary of Jonah’s birth and death. I spent the day thinking about how he would look. If he was like his brother, I imagine that he would be starting to fill out from the constant nursing and that he would be close to smiling. Evan smiled for the first time when he was five-weeks-old. </p><br /><p>I feel conflicted about being around babies and “baby stuff.” I went to a department store today and as I walked past the infant section, I made a point of looking in the other direction. I just couldn’t stand to see all the cute little clothes that we don’t need. But as I was leaving the store, I walked past a woman carrying a bucket car seat with a blue blanket draped over it. I couldn’t stop myself from turning around to look at the baby. I had to know if he looked like a one-month-old, but I couldn’t tell because he was covered up… </p><br /><p>We visited John’s brother and his family this weekend. At one point, I was talking to John’s brother about the contacts in his cell phone and he said he would list Evan as “favorite nephew.” I jokingly said “That’s because he’s your only nephew!” and as soon as I said it, I felt so guilty for denying Jonah’s existence. I realize that the simple question “How many children do you have?” is no longer easy to answer. </p><br /><p>Last week, John and I attended a support group for bereaved parents who lost a child under the age of one. About ten families attended the meeting and everyone had an opportunity to tell their child’s story. As the first woman talked about her loss, I fought the urge to cross the room and hug her. But as the evening went on and more stories were shared, I realized that no amount of hugging could erase the sadness in that room. When it was our turn to speak, I offered to share our story. I started by saying, “We have a three-year-old son named Evan but the reason we’re here . . . “ and I completely lost it. Thank goodness John was by my side (how many times have I said that!) to take over and finish telling Jonah’s story. While the evening was emotionally grueling, I’m glad we attended the meeting. While Jonah is no longer with us physically, we keep him alive by talking about him and telling his story. </p><br /><p><br />Happy one-month birthday, little dude! </p>Anonymousnoreply@blogger.com4tag:blogger.com,1999:blog-7213460203175939142.post-30711733526711208712009-04-12T21:29:00.017-05:002009-04-14T09:46:39.605-05:00Life on a Yo-Yo<span style="color: rgb(0, 0, 0);font-size:12;" ><span style="font-family: georgia;font-size:100%;" >The most frequent question I have been asked recently is "How are you doing?" It's a tough one to answer, mostly because I usually have many different emotions going through me at the same time. As a result, I have a difficult time nailing down how I am feeling at any point and the answer is usually no more definitive than "OK," “hanging in there,” or "as best as I can." I did want to post this, however, to try to let you know how we are doing and what our life has been like lately.</span><div style="font-family: georgia;" class="im"><span style="font-size:100%;"><br />Kelly is recovering from the surgery quite nicely, and is able to do more each day. It appears, thankfully, that she is on her way to a smooth recover from the c-section. The emotional part is obviously more complicated, but I will try to capture some of it here...<br /><br /></span></div><span style="font-family: georgia;font-size:100%;" > The last few weeks have been up and down but the three of us are doing OK overall. I like to relate how I feel throughout an average day to a yo-yo, moving up and down through emotions quickly instead of gradually ascending and descending like a roller coaster. Unfortunately it is one of those cheap yo-</span><span style="font-family: georgia;font-size:100%;" class="blsp-spelling-error" id="SPELLING_ERROR_0" >yos's</span><span style="font-family: georgia;font-size:100%;" > that doesn't come all the way back up to your hand. It just goes from all the way down to the bottom of the string to about half-way back up to your hand and then back down again. In other words, we move between feeling sad and okay but we don’t get to the top and feel good or great.</span><span style="font-family: georgia;font-size:100%;" ><br /><br />Before Jonah was born, Kelly and I experienced a lot of anxiety so long stretches of sleep were hard to come by. Now, getting through each day feels like we’</span><span style="font-family: georgia;font-size:100%;" class="blsp-spelling-error" id="SPELLING_ERROR_1" >ve</span><span style="font-family: georgia;font-size:100%;" > run the mental equivalent of a marathon. The only benefit of this is that we are now sleeping better at night, which always helps, and we take naps whenever the need arises. Evan has actually been sleeping a little better than normal and not waking up too often to got to the bathroom. He does bring up "baby Jonah" often and when he does, we take some time to talk to him about Jonah and show him pictures. I am a little surprised that he has retained this for as long as he has, but I am also hopeful that he can retain some memories of his little brother. Evan is a sweet kid with a big heart, and whenever we are sad, he gives us a big hug so that we will feel better. I am immensely grateful to have him around to distract and entertain us.<br /><br />Also, I went back to work this week, going back half-time this week and then back full-time next week. The transition is a little strange, but I guess this is what one of the counselors meant when she said that we are now getting used to the "new normal," which is what our life is now without Jonah. Maybe we need to meet that yo-yo halfway in order to finally catch it.<br /><br />Anyway, the blog still lives and we will continue to post when the mood strikes. Evan will surely be more prominent especially as he has become quite the little "Energizer Bunny" lately. It looks like spring is finally here in Wisconsin. Hopefully it will be a good one with lots of time outside.<br /><br />-John and Kelly</span><br /></span>Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7213460203175939142.post-7318079222897790892009-03-29T12:48:00.019-05:002009-03-30T14:18:09.185-05:00RememberanceAs I mentioned in a previous post, we are going to have a memorial gathering for Jonah this Saturday, April 4th. We will not be having a "service," we simply want to have some time set aside so that we could share our memories of Jonah with you and honor his life. Here is a link to his obituary: <a href="http://www.cressfuneralservice.com/a-life-remembered/1112/">http://www.cressfuneralservice.com/a-life-remembered/1112/</a> which has all the details of the service. If you happened to have seen it in the Sunday newspaper, his name was incorrectly printed; it should have been listed as "Carlson, Jonah Hauser."<br /><br />With that in mind, Kelly and I wanted to share the whole experience of his day, as well as write it all down so we don't forget it. Here is my version of his big day, which we will be happy to share with you next Saturday. I know it is long, but we wanted to share the whole experience of his big day.<br /><br /><br /><strong>Jonah's Big Day:</strong><br /><br />The day started as I did not want it to, with Evan waking up at 4:45 for a guided trip to the bathroom. After taking care of business, I went with him back to his room and tried to convince him to go back to sleep. After about 45 minutes he seemingly nodded off and I let him be, hoping to catch a little more sleep before starting the day. Kelly was awake by this point and writing in her journal, so we talked for about 20 minutes until Evan woke up again. That was official start of Jonah's birth day, as it was clear none of us were getting back to sleep!<br /><br />The rest of the morning went according to plan: we dropped off Evan at my parent's condo around 8:45, chatted a little, and then headed off to the hospital. We got there around 9:40 and got Kelly registered and checked into her room. She got the usual pre-surgery treatment of an IV, a check of her vitals and we were paid visits by nurses and doctors that would take part in the surgery. Around 10:45 I ran down to the cafeteria to scarf down a sandwich and a cookie, making sure I had enough energy to last for the next few hours.<br /><br />I got back to the room about 11:10, and then family started to show up at the hospital. We got them settled in the waiting area and I went back up to Kelly's room to sit and stare at the clock. The surgery was scheduled for 12:00, and everything was still on schedule, as we were told. Around 12:15 we got the call, and we headed down to the 4th floor where the surgery would take place. We were led to the recovery room, where she would go after the c-section, and we talked to the doctor and a few nurses about what was going to happen. Kelly was then taken into the operating room to get prepped for surgery. I stayed in the recovery room, putting on my hairnet, mask and show covers.<br /><br />In the 15 minutes or so that I waited in the recovery area for the surgery to start, the Neonatologist stopped by and we talked about options for breathing support after Jonah was born. We agreed that if he was stillborn, or passed away quickly, that we did not want him resuscitated. That seemed like a unfavorable option given the fact that we knew his lungs were small and that his kidneys would most likely never function. We also agreed that if the initial evaluation indicated that he was in bad shape, we only wanted breathing support in place long enough so that we could spend a few hours with him in the recovery area to take pictures and say our goodbyes. The final option we talked about was to take him to the NICU if it looked like he might make it for a while and then we could sort of go from there and let him guide us down the right care path.<br /><br />After what seemed like an eternity, I was led into the operating room and taken back to sit by Kelly. She was hooked up to an IV and she had been given the spinal block in preparation for the surgery. There was also a blue curtain just past her neck to prevent us from seeing the action. As the time passed, we made nervous small talk with the anesthesiologist, asking him silly questions about all of the equipment. He was a very nice person, and was very sympathetic to what was going on. As I did during the wait for Evan's birth, I bowed my head and recited the Lord's Prayer to myself. I don't know why, but at both births it just came to me and it felt right.<br /><br />After about 10 or 15 minutes, I could see that Kelly was being shifted around a little, so I knew that the time was near and Jonah was about to see the world for the first time. The time was now 12:50. After a few more seconds, I heard a nurse say "Hi, Jonah," and then the unexpected happened. We first heard a couple soft cough-cries and then he really went at it. This kid did not come into the world with a whimper, it was a loud cry almost as if he was saying "Do you worst, world, I am here to fight!" Kelly and I were both a little shocked, given our expectations, but it brought joy and pride to our hearts to hear him. I had the same feeling of joy I had when Evan was born, and we both cried the tears of hopeful parents. This was the first time in a long time that I entertained the thought that he might actually make it for a while.<br /><br />After about a minute, I asked if I could see him and one of the nurses said "yes," so I went back to the warmer where he was being evaluated. It is interesting to look at a picture of my initial reaction because I am holding my hand over my surgical mask as if I was trying to cover my mouth. I was shocked at what I was looking at, and how it was making me feel. He was perfect in every way, so beautiful and so much hair! The picture shows that love at first sight really does happen.<br /><br />The other thing that I noticed was that his whole body had a blue hue to it, telling me that he was not doing very well at the moment. The doctors and nurses were huddled around him, working very intently to give him breathing support, so I decided to go back to Kelly to give her an update.<br /><br />I talked to Kelly for a little bit, telling her how beautiful he is, and we were both nervously excited because of how hard he cried and from the updates we were hearing from the other side of the room. Then the Neonatologist came back and gave us the news that we had hoped so long to hear. Her words were "I thing he's got some lungs!" That put both of us in a happy place, and we cheerfully agreed to have him brought to the NICU for further evaluation and monitoring.<br /><br />Things got a little crazy after that and I was starting to feel very excited. I went back to look at him again and he was starting to look more pink and he was fighting the mask a little bit as they were trying to put it over his face. That made me smile a little bit; I was happy to see the fight in him.<br /><br />I went back to talk to Kelly again and we agreed that I should go with him to the NICU instead of staying in the operating room with her. So I left, being advised that I could not come back to the operating room, with a little hop in my step thinking that my little boy was going to possibly make it for several hours to a day or two. On my way out, the nurse handed me my camera to take with me.<br /><br />My next stop was the recovery room where I grabbed the personal items we had left there in case our time with him was short. It was the bag we brought with the video camera and the teddy bear along with Kelly's robe, in case the only time we had with him was in the recovery area. I waited for a few minutes with the nurse, and then Jonah came out with his entourage of doctors and nurses, and we headed to the elevator.<br /><br />The next couple hours are a blur to me. I remember when I first got to the NICU that there were several doctors and nurses around, and the room seemed awfully full. For a little while I stood back and watched them working on Jonah, trying to decipher what was being said. They were working on him quite intently, but he looked like he had turned more pink than blue by that point. They were also going to give him an IV and order a chest x-ray to see how well his lungs had inflated. The neonatologist also said that if things go well with his breathing and the x-ray, that we should also check his kidney function just to see what he is up against.<br /><br />The doctor also told me that he may be with us for a couple days.<br /><br />I decided at some point to go down to my room and change out of my scrubs, so I headed downstairs to Kelly's hospital room. When I got there, I saw a piece of paper with a butterfly on it had been taped to the door. The hospital does this to indicate that the family has lost a child. I asked the nurse with me to take it down, saying "this isn't over yet," and she took it off the door. I also sent a text to Twitter at 1:11 PM to let people know what was going on: that Jonah was a fighter and he may be with us for a while.<br /><br />Right after I changed, one of the nurses and I made a decision that I will always be grateful for. The photographer from "Now I Lay Me Down to Sleep" had arrived, and we had a discussion about whether we wanted to take pictures that day or wait for Saturday when things had calmed down a little. By every indication, it seemed like we had more time and it may be easier to take the pictures the next day. For whatever reason, we decided to take the pictures that day. That is what Evan would call a "good choice."<br /><br />So I got changed and headed back up to the NICU. By that point, they had decided to try a CPAP machine (similar to the one that people with sleep apnea use) to give him some more breathing support. I watched him for a little while, noting that he was still fairly pink. They were about to put the IV in, which I did not want to watch, so I went down the the recovery room to talk to Kelly and give her the good news. It was probably around 1:30 by this point, and things were still going well so I went to the waiting room to talk to my family. I gave them the news, and invited them up to the NICU, but I was reminded by the nurse that they were still working on him so we decided the better option was to have them hang out in Kelly's room since it was closer to the NICU and they would have some privacy there.<br /><br />Once we got everyone settled, I went back up to the NICU to see how things were going. The CPAP machine did not work because, as they found out, there was a blockage on one side of his nose. The option they wanted to use at that point was to "intubate" him, which basically means that they wanted to put a tube in his throat to put the air closer to his lungs. This was something that I had hoped would not be necessary in the days and weeks leading up to his birth, but seemed like a good choice at the time to get him stabilized. The doctors and nurses were in high gear at this point, and I really did not want to watch, so I went down to talk to Kelly and let her know what was going on. I could not find my camera at this point (got misplaced in all the excitement), so after I was done talking to Kelly I went back to her hosital room where it was quickly found.<br /><br />It was now around 1:45 and I headed back up to the NICU where I saw the nurse and photographer in the waiting area. I talked to them for a minute, letting them know it would not be long before the photographer could come in. Then I went in with the nurse to get an update on Jonah. When I got to his room, the neonatolgist started talking to me in a slightly different tone from before , and said that she wanted to show me something. She pointed out that Jonah's chest and abdomen were flexing quite a bit while he was breathing, which she told me meant "small lungs." She also pointed out on the monitor that his oxygen saturation level was around 40, and they like to see it be around 80.<br /><br />She then took me into the central part of the NICU to look at his chest X-ray. You know things are not going well when a doctor tells you "let's look at a normal X-ray first." So she showed me a picture of a normal child's lungs and then Jonah's. It was a big difference, and I could see how small his chest was compared to his abdomen. She also showed me that it looked like the top two lobes of his lungs were not inflated. She was not sure at that point if it would help to "back out" the tube a little bit to help inflate them, but she also told me that it was possible that those lobes just never developed. She said she would send them over to a pediatric cardiologist to get his or her opinion.<br /><br />I will never forget what happened next. We went back to Jonah's room to spend a little time with him and take some pictures. At some point the nurse asked the neonatologist if they should push to get Kelly out of the recovery room a little sooner than normal so she could spend a little more time with Jonah. The neonatolgist said something to the effect of "I think it would be a good idea to bring her up sooner." It broke my heart to hear that, because I knew that he would not make it very long. It also hurt me to no end that Kelly would hear this news as well, and her heart would be broken. It was probably a little after 2:00 by this point.<br /><br />I decided that this may be my only chance to be alone with Jonah, so I took some pictures of him and had the photographer take a few pictures of us together. I took a few close-up pictures, realizing that I was unable to get a close-up shot in which he was not grimacing. It was clear that his situation was grim and he was now really struggling. So, I spent some time just looking at him, analyzing his features and trying to force myself to remember every little bit of him.<br /><br />After a little while, my family started to come in, starting with my parents and Evan. Evan was reluctant (shy) to see Jonah, but he is also easy to bribe at his age so I reminded him that we brought a teddy bear. He got over his hesitancy and went into the room. He immediately went over to the window to play around with the things we had brought and whatever else was available for him to play with.<br /><br />Kelly was brought into the room shortly after my parents arrived and I could see in her face that she was sad. I asked everyone to leave the room so I could spend a little time with the two of them, and get Kelly up to speed on what I knew. By that point the excitement had passed, and we were now focused only on spending as much quality time with him as we could. It was around 2:15 by this point.<br /><br />The next hour and a half were spent with family and Jonah, with everyone getting a chance to hold him, love him, and say goodbye. There were a lot of tears in the room, but I was feeling something different than sadness at that point. I was sitting on the couch by the window with Evan and one of the nurses asked me how I was doing. My response was that "I am so proud of him." In retrospect, I had gotten what I had hoped for. I loved him unconditionally without fearing what was to come.<br /><br />Around 3:20, we had one of the hospital chaplains give a blessing with all of us in the room. Thanks to a tip from a friend who had been through this earlier in the month, I had the presence of mind to ask the photographer to video tape it. Another "good choice."<br /><br />There was no point in denying his future at that point. They had backed off the setting on his breathing tube (to increase his comfort) and he was starting to get that blue hue again. As the neonatologist told us would happen, something clicked in my mind and I knew it was time. I asked everyone for some privacy again and I went over to talk to Kelly. Her words were "I think it's time." We both knew at the same time that he had fought hard, but the world was a little too big for him. Kelly's nurse was also chomping at the bit to get her back to her room to they could monitor her a little better.<br /><br />We asked the doctor to remove the breathing support.<br /><br />After a short time, we left to go down to Kelly's room with Jonah. The doctor and nurse kept him on oxygen on the way down to make sure that he did not pass away in the elevator, even though they thought that it was not likely to happen. I am glad they did.<br /><br />We got back to Kelly's room around 3:50, ready to spend whatever time we had left with him - just the three of us. We did not get much of a chance because he passed away about 30 minutes later - snuggling with his mom. We kept him in the room with us for the evening, wanting to have him with us so we could say our goodbyes before he took the next step in his journey.<br /><br />Sometimes babies are born with serious heart valve conditions that can be surgically corrected, either through donations from another child or by using mechanical valves. The issue with the mechanical valves is that they do not grow with the child, so future surgeries are pretty much guaranteed. If a donated valve is used, however, it can grow with the child, reducing the risk of future surgeries and the associated complications. The need for these valves is immediate, as the incidence of heart issues in babies is quite high.<br /><br />After we received the prognosis that it was unlikely that Jonah would survive, Kelly and I decided that we would like to donate whatever organs would give another child a chance at a better life. We found out, after contacted the organ donation group, that heart valves were the only option given his condition and his age.<br /><br />What came next would turn out to be the hardest thing I have ever done. Before we left, I held him and told him three things. I told him that I loved him. I promised him that I would be the best daddy to Evan that I could be. Lastly I told him that I would never forget the fight he put up. As the nurse came in, I gave him a kiss on the cheek and started the walk that I will never forget. The procedure was going to be on the same floor, in the room where circumcisions are done, and I wanted to carry him there.<br /><br />We got to the room, which was locked, but I could hear some talking and commotion behind the door. The nurse knocked, and someone dressed in dark blue scrubs opened the door. He shifted a cart behind him and stretched out his arms to take Jonah from me. As I gently put him in his arms, I took one last look at his face and started to cry, as I thought this may be the last time I would ever see him. The man said to me -- "I am so sorry. God Bless you." As I turned around, I felt physical grief for the first time. As I walked back to the room, I was crying so hard that my neck and shoulders were shaking, and I remember reminding myself to breath. It was not easy, feeling as if I had been punched in the chest.<br /><br />Jonah was gone.<br /><br /><br /><br /><strong>Epilogue:</strong><br /><br />It has felt like one long day since he came into our lives, but we are doing OK having felt joy and sadness in ways we could have never imagined. We miss him terribly, but we are both immensly proud of our little boy. He went through a lot in his life, even before he was born. He came into the world fighting, and passed on gracefully and peacefully knowing nothing but love and comfort from his family.<br /><br />We should all be so lucky.Anonymousnoreply@blogger.com6tag:blogger.com,1999:blog-7213460203175939142.post-48530630091206774382009-03-25T11:46:00.007-05:002009-03-26T23:01:48.810-05:00Memorial Gathering for JonahWe would love to have you join us for a memorial gathering to celebrate the life of Jonah <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Hauser</span> Carlson on Saturday, April 4<span class="blsp-spelling-error" id="SPELLING_ERROR_1">th</span> from 1 - 4 PM at:<br /><br />Cress Funeral Home<br />3325 E. Washington Ave.<br />Madison, WI 53704<br /><br /><a href="http://maps.google.com/maps?f=q&hl=en&geocode=&time=&date=&ttype=&q=3325+E.+Washington+Avenue++Madison,+Wisconsin&ie=UTF8&z=16&iwloc=r1">Google Map to Funeral Home</a><br /><br /><br /><br />In lieu of flowers, we ask that you consider a donation to either:<br /><br /><br /><span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">Cincinnati</span> Children's Hospital - <a href="http://www.cincinnatichildrens.org/">http://www.cincinnatichildrens.org/</a><br /><br />or<br /><br />Now I Lay Me Down to Sleep (non-profit Infant Bereavement Photography) - <a href="http://www.nowilaymedowntosleep.org/">http://www.nowilaymedowntosleep.org/</a>Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7213460203175939142.post-9414403871021047492009-03-20T20:19:00.003-05:002009-03-21T10:25:00.087-05:00Goodbye Sweet JonahThis will be brief; it is too hard to do much of anything right now.<br /><br />Jonah was born around 12:50 this afternoon, kicking and screaming. His cry was so robust that the doctors thought it was just like that of a normal baby. At the initial assessment, the neonatologist thought that he was in the "gray area" and he may make it a few days. With that in mind, they brought him up to the NICU and tried several methods to get him enough breathing support. We even noticed a little pee, which was a huge surprise considering his condition.<br /><br />It was not to be, however, as his oxygen levels kept dropping. We got to spend some quality time with him and our family, and the wonderful staff here at the hospital. As they told is would happen, we reached a point where we both knew it was time to let go and we had them withdraw the breathing support. He survived for a short time after that, going peacefully on to Heaven.<br /><br />Although our hearts are filled with sadness, we are also proud of our son for being the fighter that he was. We really thought we would have had more time, considering that beautiful fight he put up, but the world was just a little too big for him.<br /><br />I will post more later this week, and add pictures of our sweet Jonah.<br /><br />John and Kelly<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_2ON5cGHpN0g/ScUGPg_Y-SI/AAAAAAAAABw/vIMzMbQjcYE/s1600-h/Sweet+Baby+Jonah+044.JPG"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_2ON5cGHpN0g/ScUGPg_Y-SI/AAAAAAAAABw/vIMzMbQjcYE/s320/Sweet+Baby+Jonah+044.JPG" alt="" id="BLOGGER_PHOTO_ID_5315661798804355362" border="0" /></a>Anonymousnoreply@blogger.com15tag:blogger.com,1999:blog-7213460203175939142.post-15997302193177365902009-03-19T13:15:00.003-05:002009-03-19T14:24:51.945-05:00Jonah's Birth DayA lot of people have commented throughout this long journey that they can not imagine what we are going through. I can understand the feeling. I have been on the other end of situations like this and it is a very painful experience that leaves you unable to find the right words to express such deep, and profoundly sad feelings. I can see it in the eyes of people that I barely know, and in people I have known for a long time. This whole situation stinks and we are all sharing the pain. <br /><br />As the day approaches, I also find myself at a a loss to imagine what tomorrow is going to be like. I have spent, what seems like, an infinite amount of mental energy thinking about Jonah and what his life has been and what it will be after he is born. We have both reached a point in the process of both acceptance and denial. We accept the reality of who Jonah is, and what has happened up to this point. At the same time, we are both unable (or in my case, somewhat unwilling) to think about how we are going to feel after he is born. I hope my joy of being with him is not tainted with fear of what will come. I hope we can keep him comfortable for as long as he is with us. I hope he can feel how much we love him.<br /><br />Today has been a low-key day for all of us; I am off work today and we spent the morning doing some final errands, laundry, and other tasks to get ourselves ready and keep our mind occupied. We have also spent some time trying to prepare Evan for tomorrow as well. It's definitely hit-or-miss with a 3 year old; sometimes the words stick and sometimes they bounce right off. Like any other kid his age, he is resilient and will probably be back to his old self quickly but it breaks our heart to see him sad. Hopefully he can retain some memories of his little brother, and we are going to have a professional photographer from Now I Lay Me Down to Sleep with us tomorrow, along with some keepsakes like the stuffed bear we made together at Build-A-Bear. Both of our children are a blessing, and we hope that whatever time they get together is joyous.<br /><br />The plan for tomorrow is pretty simple. We are going to drop Evan off at my parents house in the morning and head to the hospital. The c-section is scheduled for 12:00 CDT so we need to be there by 9:45 to register and check in on the maternity floor. Then we get situated, Kelly gets prepped for surgery and we wait for the call. What comes next is out of our hands but we will be focused on comfort and love. If the unexpected happens, will go with it.<br /><br />I can not make any promises about when I can update the blog over the next couple days, which I am sure you understand. Through the miracle of modern technology, I can send a text to Twitter (http://twitter.com/johnbcarlson) which will update my Facebook status (http://www.facebook.com/profile.php?id=1076616604). If you are member of either, you can follow me there as I have made my updates public. I will try to get something out tomorrow but Saturday is probably the most likely.<br /><br />John and KellyAnonymousnoreply@blogger.com5tag:blogger.com,1999:blog-7213460203175939142.post-26429455987985793142009-03-12T19:35:00.004-05:002009-03-12T20:48:49.710-05:00Now We WaitWe had a couple of appointments today; one at Kelly's primary care clinic, and the other at the Perinatal Center at Meriter Hospital. Neither appointment revealed any new information, but we did make some slight changes to the birth plan and we got to meet the neonatologist that will be present when Jonah is born.<br /><br />The first appointment was for the final ultrasound which was easily the shortest we have had and it did not reveal anything new. The purpose was to give us one more chance to look at him prior to the birth. Like the other ultrasounds, it was an emotional experience, but we are grateful to get whatever chance we have to get a look at him. The profile view of his head always gets me choked up because I see Evan's facial features when I look him... <br /><br />The appointment was also a pre-op visit with a nurse and the doctor who will do the c-section. That was routine, going over procedures and signing a release form. Nothing of note came out of the visit, other than we picked up a grape sucker for Evan. At least someone got some enjoyment out of it!<br /><br />The appointment at the hospital was more interesting because we got to meet again with a nurse that serves as one of the infant loss coordinators, and we got to meet with the neonatologist. She was quite a comforting presence to us, and she went over a variety of possible scenarios and what options we may have when he is born. We are both glad that she will be there for Jonah, and for us.<br /><br />I have to start out with what we have known for some time -- Jonah will not be with us for very long. How long? It depends on his lungs and how much they expand after he is born, and their ability to release carbon dioxide. The last time we had his chest cavity examined on an ultrasound, the images showed a large heart in a small chest cavity. That means small lungs, which is not a good sign. As a result, they don't know how long his lungs can support him after he is born. It may be an hour, it may be longer. We won't know until he is here, but the unique circumstances of his development and pre-natal care may put him into a "gray area," as she put it, that would allow him to survive a little while longer.<br /><br />The "gray area" was not new information, but it was re-enforced by the neonatologist today, which caused the slight change to the birth plan. Instead of just focusing on comfort care, we are going to let Jonah guide us down the best path. If he is struggling significantly at birth, he will be given enough breathing support so that we can spend some time with him as a family. If he is doing better and can get by on his own (or with just oxygen), we will go with it and be flexible with our care plan for him.<br /><br />So now we wait. We are still on schedule for noon on March 20th if Kelly does not go into labor before then. Unfortunately, I can not make any promises about when I can update the blog after he is born. I know that this may be your only source of information and I will do my best to update it when I can. Jonah will decide that too.<br /><br />John and KellyAnonymousnoreply@blogger.com9tag:blogger.com,1999:blog-7213460203175939142.post-14388958099814696972009-02-25T20:33:00.003-06:002009-02-25T21:01:53.740-06:00Jonah and The Vernal EquinoxKelly had a "routine" OB visit on Monday and discussed options for delivery with her doctor as well as dates for the birth. She and I discussed those options on Tuesday and the plan was set today for the date and time for Jonah to be born.<br /><br /><br />Friday, March 20th. Noon.<br /><br /><br />The plan, as is stands, is that if she goes into labor before the 20th, she will attempt a natural birth. If that does not happen, we will go with the scheduled date and time for the C-section.<br /><br />We also received the written birth plan that we discussed with the infant loss coordinator at the hospital as well as the doctors that will be attending the birth. Nothing new to report there, we are still planning on providing him as much comfort as we can for as long as he is with us. We will take that birth plan to the hospital to make sure that everyone knows our wishes prior to the birth.<br /><br />Kelly has one more appointment scheduled for March 12th which will be the last in the long line of ultrasounds as well as a "pre-op" visit to discuss what will happen on the 20th. I can't imagine any blog updates before then, and the post after that appointment will probably be the last before he is born.<br /><br />John & KellyAnonymousnoreply@blogger.com2tag:blogger.com,1999:blog-7213460203175939142.post-7503091183669155562009-02-18T12:37:00.003-06:002009-02-18T13:15:07.645-06:00A More Complete PlanWe met with the doctors this morning after the ultrasound and we have what one could refer to as a "best-case" birth plan for Jonah. The doctors we spoke with advised, based on all available factors, that Kelly deliver the baby at the 38 week mark. So mark Thursday, March 26<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span> on your calendar. The exact specifics of the plan are tentative at this point, but the date is essentially set unless Kelly goes into early labor. They would not stop labor after 34 weeks so it is possible that he is born earlier than that, especially since pregnancies with low or no fluid can tend to go early.<br /><br />It may seem counter-intuitive that we would actually feel better knowing that we have five weeks left, but it is good to be able to form a plan and be able to make preparations for whatever time we will have with Jonah. The running guess is somewhere between one hour and a few days; it will all depend on the lungs and how much oxygen they can deliver.<br /><br />We also received what I would consider the final verdict on the kidneys, which is that they are not in complete failure yet, but also that delivering now would not help them in any way. That really means that they will fail, quite possibly before he is born. We did not get any new information on the lungs, just a repeat of the fact that they can not determine how well they will function until he is born. We also discussed options for what care is available after birth with the focus on making him as comfortable as possible.<br /><br />There is a couple small pieces of positive news from the ultrasound. The tech mentioned that it does not look like he has "clubbed feet" which can occur when babies get compressed from the lack of amniotic fluid. This is the name of the condition when the feet get turned upward and inward from the pressure. He was also doing what they call "practice breathing" which is a good sign because babies in distress do not do this; they are typically quite still as they are in "survival only" mode and conserving their energy. So, at least it looks like he is not worse for the situation and is not under duress.<br /><br />During the ultrasound we also recorded ten seconds of his heartbeat on a device we bought from "Build-a-Bear." We are going to pick out a bear later with Evan and put the recording inside the bear so that when you squeeze him, you hear the heartbeat. After much consideration, we have decided to include Evan in on the whole process so that he gets some time with his little brother and we can all share in the memories when he is older.<br /><br />I am not sure at this point what the schedule is going forward for appointments or where they will take place but I will update the blog when that picture is more clear.<br /><br />John & KellyAnonymousnoreply@blogger.com1tag:blogger.com,1999:blog-7213460203175939142.post-39781917669220292002009-02-11T17:37:00.006-06:002009-02-11T18:48:36.567-06:0032 Week UpdateKelly had an ultrasound today and for all practical purposes everything is the same as last Monday. The baby is no better or worse, which is probably the most we can hope for at this point considering that there is no amniotic fluid. The prognosis has not changed either, it has just given us another week to wait and prepare.<br /><br />Prior to the ultrasound, we visited with one of the nurses at the Perinatal Center where we learned that she changed the time for Kelly's next ultrasound to Wednesday morning at 7:45. She also set up a meeting immediately after the ultrasound for us to meet with the doctor who will perform the delivery, the high risk OB doctor who has been treating Kelly, and with a <span class="blsp-spelling-error" id="SPELLING_ERROR_0">neonatologist</span>. This is the meeting we have wanted and it has been set up so we can talk about birth plans and what options we have to provide comfort care for Jonah after he is born. The ultimate goal of the birth plan is to keep the risk low to Kelly and provide the safest path for Jonah to enter the world.<br /><br />We also met with a social worker after the ultrasound who gave us some more information about how to talk to Evan about what is going to happen, as well as to whom we should be speaking to regarding post-birth plans. There is no exact science to tell how long we will have with him after he is born; we won't know until doctors can check his lung function. All that means is we need to be prepared for whatever we can in case he out lives our expectations.<br /><br />That is all for this week; not <span class="blsp-spelling-error" id="SPELLING_ERROR_1">a lot</span> of action but it has also been nice to have a slow week to help deal with the emotional fallout from last week. I don't think there will be any news to share before next Wednesday, but I will update the blog if there is.Anonymousnoreply@blogger.com3tag:blogger.com,1999:blog-7213460203175939142.post-54548736078554176012009-02-03T11:34:00.003-06:002009-02-03T11:45:55.823-06:00Home from the HospitalThe whole family is home now; Kelly was discharged from the hospital this morning with orders to lay low and, fortunately, a prescription for sleeping pills.<br /><br />We now have a better sense of the plan going forward. The decision not to deliver now is quite simply because it will make the little time he has with us easier and it will be a "term" birth. So Kelly will have weekly ultrasounds with the preliminary intent to deliver between 34 - 36 weeks. The actual date will depend on his progression and the determination of when he gets to a point in development that has maximized his ability to be comforted and loved for as long as possible. This is week 31, so we are three to five weeks away.<br /><br />The doctors told us this morning that, considering the level of hypoplasia, he will be with us for about a couple hours. The ultrasounds will help determine what to expect, but that is the most likely scenario.<br /><br />Believe it or not, this plan has given us some peace. The last 11 weeks have been an up and down experience I will neither forget nor wish on anyone. At least now we can plan on how to plan for, and enjoy the little time we will have with Jonah. If nothing else, he will know nothing but love.<br /><br />I will update the blog if anything comes up between now and then, and I will post when we now the delivery date if I can.<br /><br />Peace and Love,<br /><br />John & KellyAnonymousnoreply@blogger.com8tag:blogger.com,1999:blog-7213460203175939142.post-57298415158659594382009-02-02T15:49:00.005-06:002009-02-02T16:15:27.677-06:00We Love you JonahWords can not express how I feel. Nor can I truly express my appreciation for the love and support we have received from our family and friends as well as the doctors, nurses and staff both here in Madison and in Cincinnati. It has been a long journey but at no time have we felt like we have been walking it alone. It gives me no comfort to share this, knowing the feelings it will invoke in whomever reads it. I could see it in the reactions of the people in the Perinatal center that we have gotten to know, and in the tone and behavior of the nurses. Jonah is now facing the gestational <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">equivalent</span> of climbing Mt. Everest without oxygen. <br /><br />The news we got today was extremely difficult to take even though it was obvious on the ultrasound what was going on. It would appear, from the images, that Jonah is in end-stage renal failure and what little fluid was being generated has dwindled to either no fluid or close to it. Dialysis can not reliable be effective until an infant is eight - nine pounds. Right now he is about four pounds. Even at 41 weeks, Evan barely topped seven.<br /><br />Secondly, and more importantly, he has a significant case of pulmonary <span class="blsp-spelling-error" id="SPELLING_ERROR_1">hypoplasia</span>. That means that the heart is taking up a significant portion of the chest cavity. That can only really only mean one thing; the lungs are not developing like they should. When we asked the high risk OB what the prospects of this reversing were, he clasped his hands together and paused to form the sentence "the outlook is these cases in poor." It will all come down to what they can not measure, which is lung function. It also means that they can not do anything now to help him; we will have to wait until he is born to find the truth in what all of this means. It also means the chances of him surviving are not good.<br /><br />We were supposed to meet with the <span class="blsp-spelling-error" id="SPELLING_ERROR_2">neonatogist</span> and the pediatric urologist <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">tomorrow</span> but we requested that it happen tonight, and we are supposed to meet with them around 7:30. We should get some more answers about his chances but I would not expect that they are any different that what we heard today. Just filling in the blanks and making sure that we can make a good decision about when to give birth and what comfort is given to him.<br /><br />As you may expect, we need a little time on our own right now to deal with this. We will find out more tonight about how long Kelly will stay in the hospital and what fetal monitoring should take place. I will keep everyone updated here, but we will need some space to process what happened today and we will let everyone know our plans for our little boy.<br /><br />With Love,<br /><br />John and KellyAnonymousnoreply@blogger.com6tag:blogger.com,1999:blog-7213460203175939142.post-41826227334308963932009-02-01T17:19:00.003-06:002009-02-01T17:45:49.957-06:00Pot Roast, Ice Cream, and the Waiting GameWell today was not very exciting, but at least we got some good food and good company! Kelly had the usual monitoring today; the heart rate "belt" and they also use a machine on every shift to check the "tone" of the heart. All is normal with the heart for now, which is always a good thing. <br /><br />She also got another steroid shot and met with another high risk maternal fetal medicine doctor who gave her essentially the same information we got yesterday. He also said that we may not have a definitive answer or a plan after tomorrow but we will have more information. However, we will finally get to talk to the pediatric urologist tommorow who will be able to shed more light on the situation with the kidneys as well as answer some questions. The ultrasound will happen somewhere in the 11 - 1 timeframe, we won't know for sure until the perinatal center opens.<br /><br />On a happier note, we got a lot of quality time with good friends today and my family came over for dinner with Kelly's favorite meal - pot roast and mashed potatoes! Yum! My parents have some magic ability to make that dish sing in your mouth; it is always a treat and we all got to eat together in the cafeteria. It was a nice distraction, and it is always good to spend time with them. Oh yeah, there was ice cream too! Mmmmmm....<br /><br />So we should at least get a good view of the baby tomorrow and I will post again after the ultrasound. Thank you again for all of the thoughts, prayers and positive vibes. Kelly has greatly appreciated the attention she has gotten over the past couple days.Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7213460203175939142.post-63594210241167406412009-01-31T19:31:00.003-06:002009-01-31T20:09:59.249-06:00A Tough DayKelly checked into the hospital this morning and is resting comfortably. She is in no pain whatsoever, and we are assured that there is no risk to her greater than that of a normal pregnancy. She is also not on bed rest and is even able to wear her civilian clothes as opposed to the hospital issued gowns. She is free to move about the floor and the hospital as well; they just want to keep her close for observation since the amniotic fluid is gone. Low fluid can cause umbilical cord compression which can seen through a drop in the heart rate. The good thing he has going for him now is that is heart "looks great," as the doctors said.<br /><br />We saw the high-risk OB - MFM (Maternal Fetal Medicine) doctor this morning, as well as one of the doctors from her primary practice. No hiding it, they are not optimistic like they were before. We had several discussions about end-stage renal failure, as well as dialysis. It was a shock to us, but not completely unexpected given the results of the last ultrasound. The doctor from her practice is typically light-hearted and tries to give hope when he can. I didn't see that side of him today. I saw a person who was obviously concerned for the baby as well as how we were dealing with it.<br /><br />The plan for tomorrow is to have a discussion with the pediatric urologist that we saw before our first visit to Cincinnati, as well as a neo-natologist to discuss the matters of our greatest concern. <br /><br />The first, and foremost, concern is lung development. We believe there was fluid up to, or at least very close to, 24 weeks which is of the up most importance. The period of gestational time prior to 24 weeks is a stage in development where lung development will simply never happen if there is no fluid. We may have cut it awfully close on that one, but we may have dodged that bullet. The fluid levels have been up and down since then but there has been fluid and she also received a sequence of steroid injections at 26 weeks. The purpose of those injections is to push the lungs along in the absence of fluid or the presence of low fluid. She also got another steroid shot today and will get one the next two days.<br /><br />The second concern is the kidneys. Both kidneys are being force fed fluid by the bladder because the ureters are dilated from the pressure. If this were to happen to you or me, meningitis would be a typical result because of the infection. He is being protected by Kelly right now but, if this condition continues, his kidneys will certainly begin failing. <br /><br />The third concern, which is what we had on our hands already is the bladder. It has been dilated for extended periods of time, causing the walls to thicken and become more muscular. That is not a good thing because intead of decompressing evenly like a ballon, it is decompressing like a crumpling piece of paper; unevenly in both size and pressure. It's possible that its new found strength was enough to force through the valves in the ureters, causing the fluid to go back to the kidneys. This is not that big of a deal compared to the lungs and the kidneys. As long as they can clear the obstruction after birth, the fluid will get out.<br /><br />So, how do we get to there from here? We find out on Monday. We are going to have the mother of all ultrasounds that will be used to measure his chest cavity in relationship to the size of the heart (to check for lung development) as well as a detailed look at the kidneys. Once the doctors get the data from that, we are going to get everyone in a room and talk about delivery dates. Yes, the lungs have to be properly developed but they may not be able to do much for him if he comes out too early and the kidneys have failed. The options they can offer us to help the kidneys only come into play after he has reached a certain gestational age and weight. What that is, I do not know but I am sure I will find out soon.<br /><br />I sent out an e-mail this morning with Kelly's contact information at the hospital. Obviously I can not share that here, but if you did not get it, shoot me an e-mail at <a href="mailto:john.carlson06@gmail.com">john.carlson06@gmail.com</a> and I can let you know how to get a hold of her.<br /><br />Despite what we found out today, we are still hopeful and determined. We've been on this roller coaster for ten weeks now but we are not giving up. We will do what ever it takes to get the best shot at life, as long as we are still here to do it.Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7213460203175939142.post-34021249258624636632009-01-30T15:06:00.003-06:002009-01-30T18:01:50.369-06:00Unexpected Turn of EventsThe situation with Kelly and "Little Dude" has unfortunately gotten worse. At the ultrasound today the doctors noticed that the shunt is out and that the ureters between the kidneys and bladder are dilated to the point where they are allowing the bladder to force fluid back toward the kidneys. So the fluid is backed up like before, but now it is now spread across the bladder and kidneys instead of just the bladder. They also noticed that the kidneys are brighter and dilated (echogenic is the medical term used), causing concern for their long term future.<br /><br />They consulted with the doctors in <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">Cincinnati</span> who do not feel like another shunt will be effective due to the situation with the bladder and kidneys, so another trip south is not in the plans.<br /><br />With that in mind, and the fact that there is no amniotic fluid left, the doctors here have advised that Kelly be admitted to the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">hospital</span> for the duration of her pregnancy (another four to six weeks). She hit 30 weeks yesterday, but they are concerned that he would not fare well if he were born now. She will check into <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Meriter</span> tomorrow morning.<br /><br />So, the baby is going to get some super special care the next few weeks and we will be consulting with doctors across more specialties than I can keep straight in my head. Hopefully we can come up with a good solution; it's unfortunately come down to a race against time.<br /><br />I will update people individually with her contact information at the hospital; if you want to get a hold of her there, please e-mail after tommorow morning and I will let you know how to get in contact with her.<br /><br />I will also update the blog daily, if possible, to keep everyone up to speed. Stay tuned; it is definitely going to get more interesting.Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7213460203175939142.post-82788747291912137852009-01-26T10:40:00.004-06:002009-01-26T10:54:41.427-06:00Keep up the good work, Little Dude!Today's amniotic fluid check was pretty close to the last one. The total volume is 1.9 cm, which is slightly higher but essentially the same as Friday (which was 1.7). The slight difference today is that they noticed one decent pocket and two small pockets of fluid, as opposed to just one on Friday. Hey, we will take whatever we can get!<br /><br />We also talked to the doctor about delivery dates, and the plan is to try to get as close to 36 weeks as possible. If the fluid stays the same, or gets better, that is what we will shoot for. If it goes away completely, then we get into the <span class="blsp-spelling-error" id="SPELLING_ERROR_0">pre</span>-term delivery discussion. The goal is to get him as well-developed as possible to reduce the number of issues he has when he is born. We would all prefer to just deal with the bladder/kidney issues than other <span class="blsp-spelling-error" id="SPELLING_ERROR_1">pre</span>-natal problems that could arise if the baby was born too early. So the plan for now is to hold on and try to get as far along as possible. If you are curious, 36 weeks is Thursday, March 12<span class="blsp-spelling-error" id="SPELLING_ERROR_2">th</span>.<br /><br />The next appointment is Friday, at <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Meriter</span> Hospital, where we will "tour" the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">NICU</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_5">Neo</span>-natal <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">Intensive</span> Care Unit) and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">visit</span> with a <span class="blsp-spelling-error" id="SPELLING_ERROR_8">neonatlogist</span>. That same day we will also get another fluid check and the pediatric cardiologist will take a quick look at the heart as a follow up from the last visit.<br /><br />So for now, we are grateful for another week and we wait to see what comes out of the visit on Friday.Anonymousnoreply@blogger.com2tag:blogger.com,1999:blog-7213460203175939142.post-25723255341375086112009-01-23T13:20:00.014-06:002009-01-24T15:09:51.404-06:00Amniotic Fluid Update<a href="http://1.bp.blogspot.com/_2ON5cGHpN0g/SXuB4x08plI/AAAAAAAAAA8/7N_E8KV9NNo/s1600-h/January+2009+054.JPG"></a>Kelly had another amniotic fluid check this morning, and it is lower than the last visit; it is now at 1.7, compared to 2.6 on Tuesday. It is a small drop (.9 cm) and may not seem like a lot, but it is still going the wrong way and there is only one "pocket" of fluid left. What does it mean? We don't know right now, other than we are heading in a direction that may indicate <span class="blsp-spelling-error" id="SPELLING_ERROR_0"><span class="blsp-spelling-error" id="SPELLING_ERROR_0"><span class="blsp-spelling-error" id="SPELLING_ERROR_0">pre</span></span></span>-term delivery sooner rather than later. Yesterday was the 29 week mark which is not bad but, combined with the periods of low fluid, there is obviously some concern about respiratory development.<br /><br /><br />The bright spot to the appointment, according to first-hand reports, was that Evan was very well behaved and even helpful. He assisted the ultrasound tech in prepping the table for Kelly, and he helped check her blood pressure! Kudos to Kelly for bravery, and to Evan for being a good listener and a good helper!<br /><br /><br />Kelly's next appointment is at 8:45 Monday morning with the doctor that has been one of the "champions" of her cause to this point. We will know more then, and hopefully have a plan on moving forward. Ideally we can keep him there for a few more weeks but obviously we need to balance time with the increased risk of lower fluid.<br /><br /><br />Stay tuned...<br /><br /><br /><br /><br /><br /><img id="BLOGGER_PHOTO_ID_5294970177029964850" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="http://4.bp.blogspot.com/_2ON5cGHpN0g/SXuDUnIohDI/AAAAAAAAABE/TdaWPdCVevs/s320/January+2009+054.JPG" border="0" />Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7213460203175939142.post-36884923359225675042009-01-20T15:45:00.004-06:002009-01-20T15:58:00.300-06:00Mise à jour d'ultrason sur la croissance et le fluideThat title is a little shout-out to my french speaking relatives. :-)<br /><br />Kelly had a two part ultrasound at her doctor’s office today to check the baby’s growth and the amniotic fluid level. On a positive note, he is growing normally and weighing in at an estimated two pounds, 11 ounces. That is not a surprise; he has been pretty normal and boring other than the bladder obstruction.<br /><br />The amniotic fluid level is still low, but at least it is holding steady around 3 (normal is between 8 and 18). The plan for now is to keep him where he is unless the fluid goes away, and then we would start talking about a pre-term delivery which we would all like to avoid. However, if the fluid level holds or increases, he will stay put until we get at least to full term (37 weeks). That would be ideal, as the chances of respiratory issues are the same at 37 weeks as they are at 40 weeks.<br /><br />The ultrasound tech also noted that the baby has swallowed some fluid which makes sense because Kelly noticed the other evening that he had the hiccups!<br /><br />Kelly has another appointment on Friday the 23rd as part of her twice-a-week fluid check schedule. I will post another update then, hopefully with a number a little higher than 3.<br /><br />Today is 28 weeks + five days. Go little dude go!Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7213460203175939142.post-60392463676050981592009-01-16T12:27:00.005-06:002009-01-19T21:33:30.534-06:00Cardiologist VisitKelly and I saw the pediatric cardiologist today and although the baby's heart appears to have been under some amount of strain due to the kidney/bladder issues, it does not appear to be an area of major concern right now. The doctor did say that it appears the heart is a little bigger than it should be, but that the overall size was on the outer edge of normal. Additionally, the muscle walls are slightly thickened due to the hypertension that was a result of the kidney and bladder stress. She was not overly concerned about either condition at this point, and she did mention that as long as the kidneys continue to progress that the heart should recover. The minor thickening of the muscle walls can also be treated with medication after birth. She scheduled a follow-up visit for January 30th so we should get a better sense of how the heart is progressing then.<br /><br />Kelly did not have the amniotic fluid check at that appointment, due to some concern about overstepping on her primary doctor's care (a.k.a. politics), so Kelly then went to her doctor's office for the fluid check. The measured it to be around 2 or 3, which for all practical purposes leaves us where we were on Tuesday. They continue to be encouraged that there is still fluid in the bladder and that it remains much smaller. This was the first ultrasound I have been at where I have seen the little dude with the smaller bladder and I would have to say it was very comforting to see. I am used to using it as a frame of reference; now I have to actually look at him closely again!<br /><br />Her next appointment is Tuesday the 20th for another fluid check. As we progress, we will have more conversations across the medical specialties to determine when the best time to bring him into the world will be. The decision will center around the fluid level, but the baby's ability to handle the world and the post-birth medical procedures will have to be considered as well. We hit 28 weeks yesterday and are happy to continue on for at least another week!Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-7213460203175939142.post-70614907922567515732009-01-13T12:17:00.003-06:002009-01-14T21:02:18.098-06:00Ultrasound XVIII UpdateKelly had an ultrasound today and the AFI (Amniotic Fluid Index) is now at 4.9 (rounded up to 5). That is low, which we found out is not necessarily good or bad at this point. Her doctor called the doctor we saw in Cincinnati and he is encouraged by this, believe it or not. He was encouraged to see that the bladder is still small (relatively) and the kidneys are not dilated. He is of the opinion that the kidneys may need some time to ramp up to normal fluid production after they had been under duress for the last several weeks. The plan is still to have ultrasounds once a week to monitor the baby's progress with the hope that the fluid will increase, or at least not go down any further.<br /><br />We have the ultrasound on Friday with the pediatric cardiologist so he can look at the heart and lungs again. An AFI check is included in this ultrasound, so we will be able to see if anything changes over the next few days.<br /><br />FYI: Today is 27 weeks + 5 days; the weeks flip over on Thursdays...Anonymousnoreply@blogger.com1tag:blogger.com,1999:blog-7213460203175939142.post-40287530707589302132009-01-09T20:17:00.005-06:002009-01-09T21:32:05.032-06:00"Functional shunt" is my new favorite phrase!Kelly had a follow up ultrasound this morning and the results are encouraging! The amniotic fluid is still "normal" and the bladder looks to be about 1/3rd the size is has been in the past. Also, the shunt is still in the bladder so they refer to it in medical terms as a "functional shunt," which is our new favorite phrase. The other contenders were "good prognosis," "favorable outlook," and "cautiously optimistic." All things we have liked to hear over the last couple weeks!<br /><br />The next ultrasound is next Friday (Jan 16th), and this will include another amniotic fluid check and a follow up visit with the pediatric cardiologist. The first visit with him went very well and he found nothing unusual, but he wanted to follow up in six weeks to make sure the little dude is developing normally. We may post more before then, but that is the next time we will get more information on the condition of the baby...Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7213460203175939142.post-63963450328182508192009-01-07T17:53:00.001-06:002009-01-07T17:55:10.300-06:00Together Again!Kelly and the "Little Dude" are back home again, much to the delight of Evan. She is doing well, just tired from the procedure and the trip. The next ultrasound is Friday morning to check the bladder and amniotic fluid level.Anonymousnoreply@blogger.com0