White's Blog

One Year

cleanwhite — Sun, 29 Aug 2010 03:18:50 +0000

Our girls are now over a year old. While one minute it doesn’t seem like a year, I can still say this has been the longest year of my life. However it has been a year full of great strides forward and even though there have been difficult parts, it has defintitely worked out for the best. I have attached a link to a video that Andrea has put together that chronicles the long journey we have been through.

http://www.youtube.com/watch?v=DS04Qh8wViw

Looking at those early photos, it really shows how far we have come. Last week at their birthday party, they both dove in for some cake, with Lenay obviously being the messier of the two.

Lenay

Lenay is doing very well. Still close to walking but not quite there yet. She weighed in at just over 16 lbs for her 1 year checkup. Lenay has a huge amount of attitude and never gets cheated from letting anyone know what she wants. She is going to be fun to watch as she grows up but also probably a huge headache for dad. Her hair has just recently taken off and she has almost a full head that lays down. Unfortunately she has some very fine, wispy hair that leads to some very interesting mornings. Lenay’s cardiologist appointment also showed that she continues to grow and the doctor will see her again in 4 months. We have just started to move Lenay off formula and onto whole milk. So far so good in the transition but with more to come.

Campbell

Campbell has also made huge strides. She weighed in at just over 15 lbs and has shown great improvement in her acid reflux. The gastroenterologist would like to move her to Pediasure in order to make sure she is getting a few extra calories. Both doctors would like to see her weigh a little more. Campbell has recently started taking solid foods and has pretty much taken to anything we give her. She is particulary fond of yogurt, either the baby or adult kind. We had our early intervention meeting and she was referred to early intervention for physical therapy and feeding therapy. Our goals were for her to sit on her own and show some enjoyment in eating solid foods. Well we have had exactly zero therapy sessions and she has accomplished both goals. She sits alone but does sit forward a little bit and could use some strengthening and we may be able to get a little help with her eating still. Cardiologist for Campbell was also good and they adjusted her medicine to 3 times a day from 4, with the hope of moving off in two months or so.

For Andrea and I this was also a big month. We recently celebrated our 10 year anniversay. While this was the hardest year in our lives, I would say this was one of the best in our marriage. At some point over the past 10 years, we have become a pretty good team and we needed every bit of that teamwork over the last year. This week, we were able to be at the Childrens Hospital of Illinois as they moved from the old NICU to the new NICU in the newly constructed building. The new unit is absolutelty awesome and while it would be great if no one ever had to use it, we know there will be a need and this NICU will be so much better for future families. It was harder than we thought though as we were able to see Room 1 empty, the place where both girls started and then we helped to walk the last family out of 1218, the last place Campbell stayed before she came home. I don’t know what will happen to those parts of the building as they get consumed by other parts of the hospital, but those areas will always have very special meaning to us. It felt a lot like when you buy a new home and move. While you are extremely excited to upgrade to the new home and enjoy all the amenities it has to offer, seeing that old home for all the memories that you have of that place.

We couldn’t be more happy that the girls are progressing and we are continuing to make strides. We would like to thank everyone who has taken part or helped with our girls in the past year. From taking me to dinner when Andrea was hospitalized on bed rest, to making us meals after the girls were born and we were back and forth to the hospital, to visiting our girls in the NICU, other hospital stays and at home during our winter hibernation and helping us get back out this summer. However, we could never thank our own families enough for everything they did for us, particularly our moms and my grandma. Without them, I don’t know what this last year would have been like. Whether it be helping along to the doctor, or staying with one while the other goes to the doctor or just helping with Noah while the girls needed something, they were always there for us. We could never repay you for what you have done. We look forward to more great years and the first “fun” winter of their lives.

Long Time No Post

cleanwhite — Tue, 13 Jul 2010 03:45:48 +0000

First post for almost two months, I should have never let it get this far away. Overall things have been going very well. The girls look so different from one another and they have such different personalities, that I think I will update each one here separately. Both girls have scary moments, but for the most part those turned out fine. So lets see if I can remember everything.

Lenay

Lenay continues to be the leader of the two and is by far the most outspoken. Lenay overall has done great. A followup appointment to the pediatric cardiologist in May showed that her heart hadn’t grown enough at that point and the pressure over the device they inserted in her heart was almost worse than the day after her surgery. This concerned her doctor. He wanted to see her back in a month and if the pressure was worse, we would have to go through a more serious heart surgery where they would go into her heart, remove the device and then due a ligation, which is basically the surgery she could have had as a tiny preemie. The removal of the device though was the concerning part. This problem occurs in less than 5% of patients who get the device implanted into a PDA. Three weeks of worrying and a followup appointment showed that the pressure had lessened, actually more than the doctor expected. The key was that it hadn’t gotten worse so surgery was not necessary and he will see him again in August. The expectaton is that the pressure gradient will continue to lessen as she grows and the surgery scare will seem like a minor blip on the radar. Other than that Lenay is cruising. She has cereal in the morning and baby foods two other times during the day. Lenay followed up her rolling over with scooting around and then quickly crawling. She now is able to move around the house with ease. She can go from sitting to crawling and back again. She has recently started to pull up on to the furniture and we are looking for her to start walking prior to her first birthday. She still is just 15.5 pounds, so once she starts walking, she will look like a peanut. Lenay is also starting to vocalize some with a lot of dada and babas. Lenay is pretty much fearless and likes to keep on the move. During the day, she does everything she can to stay awake and usually ends up crashing at night. She will go like that for a couple of days and then she spends a day sleeping a lot in order to catch up. We had Lenay screened for early intervention and they thought it was unnecessary and that she probably is actually close to if not caught up with her actual age.

Campbell

Campbell continues to follow her sister, making progress at a little slower pace. Campbell continues to struggle with her acid reflux. While the spitting up has gotten a little less frequent as time goes by, the reflux still causes her to have troubles eating. We attempted to move her to solid foods along with Lenay, but she would fight and cry. After a while, she realized that the fighting and crying allowed us to sneak in some bites and so she learned to just keep her mouth shut and refuse it. So her pediatrician referred her to a pediatric gastroenterologist. That doctor has put her through a barrage of tests in order to see what we could find out. We started with an upper GI, like she had once in the hospital. That test was normal. A multiple impedance test, to test her reflux showed that she was refluxing but was well within normal limits for reflux. The next test was a gastric emptying scan that tested how fast the food moved through. This was also normal. A cookie swallow test followed which showed that she was not aspirating but actions showed the speech therapist regarding how much she fights during her feeds. Finally, just last week she had a upper endoscopy which used a camera to look down her esophagus, in her stomach and the upper part of her small intestine. Stomach and small intestine were normal, esophagus showed what appeared to be some inflammation, but we should find out this week how bad. An increase in her medicine is likely to deal with this problem as well as some speech therapy as some of her problem is likely a learned behavior from the pain she had previously. Campbell weighs about 14.5 pounds so she does at least continue to stay about a pound away from her sister. During the middle of her tests for feeding problems, the pediatric gastroenterologist mentioned a concern about the size of her head. Andrea followed up on this with a question to the pediatrician and his investigation showed that her head had grown significantly while her body really hadn’t. He felt that she could be starting a growth spurt or she could be showing the early signs of hydrocephalus. We could take a wait and see approach or schedule a head CT to completely rule it out. We moved forward with the head CT. This test occurred the week after Lenay’s heart surgery scare, so it was a rough couple of weeks. Head CT showed no hydrocephalus and she is just likely showing off her genetics and just trying to catch up with the head size of her father and brother. In the mean time, we had concern that Campbell was also falling behind in some of her phyiscal milestones which were highlighted by the fact that her sister was doing so well. A developmental screen on her showed that she was lagging some although not as bad a we feared. We have had followups with a physical therapist as well as developmental therapist. She showed good fine motor skills, but needs help with her gross motor skills. The physical therapist also felt she has low tone. They both felt that she is borderline for needing some sort of early intervention services. We have a meeting next week where a decision will be made. Funny thing is, after we had her intial test, Campbell went through a phase where she all of the sudden started doing new things. We have joked that all of the radiation she was getting from her CT and other tests jump started her. She quickly learned to roll over and followed up by being able to hold herself up on her hands. She is now showing signs of crawling. Campbell also has stayed close with her sistser as far as her “talking”. We have continued to work with the Division of Specialized Care for Children in our quest to continue getting the girls all caught up. They were able to secure us full and complete medical records of the girls from their first days in the NICU. They are an extremely valuable resource. They also have provide us with a lot of information that have helped us ask the right questions and keep moving forward with Campbell’s screenings. I think that next week we will end up with some physical therapy and likely some speech therapy for her feeding issues. I don’t know if she will get anything else from the developmental therapist but that would be ok because we don’t feel she needs that stuff as much as the other two. At the end of the day though, all of Campbell’s problems are correctable, which is awesome. We couldn’t ask for more than that and we are happy that we have access to all of these services. I think it is sad that some people don’t take advantage of the services for reasons of pride or whatever. Some day I think Campbell will be all caught up and no one will ever know she had problems as a baby and that will be because we weren’t too afraid to say she needed help. Campbell is still the most laid back member of this family but she definitely knows what she likes and doesn’t like. She has a very sweet personality now and continues to be a huge daddy’s girl. Campbell has really showed no problems or indications of her chronic lung disease this summer even though every time we get her pulse ox tested, Andrea holds her breath. Those tests usually come back at 98% or above, but we can’t quite shake feeling from the old monitor and oxygen days

Overall, the girls have been very healthy this summer. They both sleep well through the night and they are good travelers. We take them out where ever we go, whether it be dinner, baseball games (they have been to a Chiefs game and a Cardinal game) or overnight hotel stays. The Cardinal game included three nights in a hotel which they did great on. 3 different fireworks shows have also been ok with them. Swimming at this point doesn’t appear to be their thing as neither one of them really appears to like it to well right now but thats ok.

For all the rest of us, we are also doing well. We got a chance to be on the Childrens Miracle Network Telethon and present a check from last years Small Wonders walk. Andrea and I have signed up to be parent mentors in the NICU at the childrens hospital and we look forward to starting that soon. We toured the new Childrens Hospital building yesterday and it was fantastic. Our NICU advisory board had previously gotten a chance to tour the NICU unit, but the entire hospital tour was great too. It will be a totally different experience for parents than the old area. They really have thought of everything in the new building. While we never want to go back, it will be nice for those parents who have to be there. We missed it by just a year as the new NICU opens on August 25, 1 year and 1 week after the girls started there. I plan to post again late next week after we get information back on Campbell’s screening meeting. I don’t want to let two months get away from me this time.

Fun in the Sun

cleanwhite — Mon, 03 May 2010 01:59:08 +0000

Long time since my last post. Things have been going quite well here. We are out and about and taking the girls along for the ride. We have been shopping, out to eat, to play at numerous parks. The girls have actually adjusted very easily to their new schedule. I thought it would have been more of a shock to their system since they had been so few places, but actually gone great with both of them. Campbell had her visit with the neos two weeks ago and that turned out to be her last. They were happy with her weight gain. They said that she no longer needed the oxygen so discontinued the oxygen and the monitor and we haven’t looked back since. They thought her lungs sounded very good and that she was moving a lot of air. They also completely discharged us from the clinic, so we no longer have to see them anymore. That was kind of a surprise but an excellent surprise. Campbell continues to fight the acid reflux but we are hoping to see some improvement soon. Campbell has had some troubles with allergies and she did pick up a cold since we started gettting out, but she handled the whole thing quite well and we are back healthy again. We have moved both girls onto baby foods so they have been through all vegetables and most fruits. Lenay has done excellent and Campbell ok with the food. Lenay is rolling all over the floor and does holds herself up very well when on her stomach. She won’t be long and she will be crawling. She also enjoys her exersaucer where she can stand and play. Campbell is close to rolling over and probably could if she just tried a little harder. She is just so laid back, she will do things in her own time. She is also starting to enjoy her exersaucer as she can hold herself up pretty good now. Both girls continue to do very well in their own beds. Other than that, we can’t be happier for warmer weather and how far the girls have come. They are still little peanuts only weighing about 13 lbs (Campbell) and 14lbs (Lenay). They are going to look kind of funny when they start walking I think because they are so little. I hope to get updates up here a little closer together, but May is a busy month for all of us. I have put off travel for a few months now and so it has caught up and I will be on the move here in the next couple of months. We have a vacation planned and all of us will be spending a few days down in St Louis. This will include the girls first Cardinal game, a trip to the zoo and maybe a couple other fun things we can squeeze in. Looking forward to a fun summer. It sound funny to say this about 8 month old babies, but over the last month, they have felt more like normal, healthy babies as many of our problems appear to be behind us now.

Rolling, Eating and Allergies

cleanwhite — Mon, 12 Apr 2010 03:36:37 +0000

Another couple weeks down and things still going well here. We have been getting the girls out more and make a point of getting them out every weekend for something. They have done really well shopping and going for walks. We have even taken them to eat out and they have done fairly well. We just need to keep getting them used to going places. Campbell usually has no problem, Lenay can be a little bit scared in a place that she doesn’t know. All else is going well. Campbell appeared to be doing better with her spitting up but this week has either brought on a cold or what we think is seasonal allergies. Our doctor told us to give her Claritin and that appears to be helping. However, the coughing that she does makes her spit up more. Hopefully a couple of days on the medicine will clear this up. Both girls go back to the pediatrician on Tuesday. We haven’t had a weight in a month, so it will be nice to see where they are now. Campbell has a neo appointment on Tuesday also, where we expect them to discontinue the monitor. She really has only been wearing it at night and other than right after she falls asleep, it rarely goes off. We think the beeping right after she goes to sleep is somehow more connected with her heart rate and respiration rate slowing after she goes to sleep more than it really does her oxygen level. Once we get passed that first little bit, she is quiet most of the rest of the night. The girls moved to their cribs in their bedroom last week. Lenay has learned how to roll over which made it necessary to move her out of the bassinette and into her bed. I felt it was unfair to put her in their alone, so Campbell went too. I actually had a hard time moving them to their room the first night, but they have done so well, I’m glad we moved them. I think they are starting to sleep better in there by themselves. Lenay is really catching up and is pretty close to doing the correct things for her actual age as compared to her adjusted. She will be crawling here sooner than we think. She is able to get around pretty good now by rolling. Campbell is still lagging behind. She rolls onto both sides but she hasn’t really tried to roll over. If you put her on her belly, she isn’t really interested in holding herself up and gets mad within a minute or so. With Campbell, she is very laid back, which is good for a lot of things but not for this. It would be nice if we could motivate her some how, but thats not going to happen. She was watching Lenay roll over and do her stuff today, so hopefully that will get her motivated. There is probably going to be some distance between the two of them for a while, which is fine, but we really want Campbell to get going too. Finally, the girls were able to start eating baby food this week. Three days in a row of each vegetable and then we will move on to fruits. Yellow vegetables first. Lenay is doing great with hers and seems to really like it. Campbell eats it fine if you can actually get her to open her mouth, which can sometimes be a chore. Eating is really not Campbells favorite thing but with all of the feeding issues she has had, you can’t really blame her. Looking forward to getting rid of the monitor this week and for Campbell to get whatever is ailing her cleared up.

March Going Out Like a Lamb

cleanwhite — Sun, 28 Mar 2010 03:40:59 +0000

It has been two weeks since my last post and really not too much has gone on in that time. The girls are doing very well. Campbell has been off her oxygen for almost two weeks and is doing great. We have been able to get her off her diuretic as she had her last dose on Friday. As long as this continues, when she goes back to the neo in a little over two weeks, we get rid of the monitor. We have been letting her be free of it for a while almost everyday which I think she likes. The girls had their first day out last week at a birthday party and they did quite well. They also were able to go on their first shopping trip and dinner out today which also was quite uneventful. Other than that, things have been fairly quiet, which is unheard of. This weeks big thing was that Andrea had a touch of the flu and Noah has been fighting off a cold. Noah is off school for Spring Break and everyone is hoping to take advantage of the warmer weather. I am off on Friday for Good Friday, so that may be a good golf day. Happy Easter to everyone.

I Love It When A Plan Comes Together

cleanwhite — Mon, 15 Mar 2010 03:17:15 +0000

This week brought a couple of doctor appointments for the girls. A pediatrician visit showed that Campbell is up to 11 lbs and Lenay up to 12 lbs which is good gain for both girls. Both girls are also 23 inches long. They got a couple more vaccinations as we try to catch up. Overall they both got good reports and don’t have to go back to the doctor for a month. Campbell followed that up with a neo appointment and things went well there also. They were happy with her height and weight and while she is still below the 50th percentile for height and weight on the preemie chart, she is staying consistently in the same percentile which just shows that she is probably going to be a small girl for a while. Listening to her lungs, the doctor said that they are changing and that she is getting more of a lung sound rather than just a tube sound that she had when smaller. That shows lung growth and means she should be growing out of some of her chronic lung problems. We have seen that too as she is consistently off her oxygen everday. We were told we could go off a night too, but she beeps a little more than and so we have kept her on it. The goal is to get her off her oxygen and off her medications by our April appointment. If we are off all of that, then we get rid of the monitor. We were hoping to go off this time, but at least we now have a plan. That sounds good to us. Other than that, a pretty slow week. We begain trying to feed the girls cereal in the evening with the goal of feeding them just 4 bottles a day and getting them and us to be a little earlier. The cereal is going ok as it really isn’t that different for Campbell who already gets it in a couple of bottles. The 4 bottles a day is working out well and they are still sleeping fine through the night. This gets everyone to bed a little earlier too, so as long as they are getting enough to eat, we are good to go. This week should be pretty quiet, no appointments. The girls will be making their public debut this weekend as we are going to take them to a friends birthday party which will be their first trip out that isn’t to Grandma’s or the doctor. That should be fun. We are close to April which is kind of what we marked as the timeframe when we loosen up a little. They need to get out and into the world a little bit as it will be good for them. The beginning of warmer weather is making us all feel a lot better.

Tired of Monitoring

cleanwhite — Mon, 08 Mar 2010 04:05:13 +0000

Two weeks since my last post and things are going well here. Lenay has gained some weight since her surgery and was over 11 pounds at her first cardiologist followup. Campbell was also over 10 lbs at her weight check with our pediatrician. Those weights are over a week old and they will get rechecked again on Tuesday this week when they get more immunizations, so we will see how that goes. Campbell has eaten more quite consistently over the past two weeks so we expect to see a definite increase for her. Lenay also looks so much bigger now, that I am sure she has gained also. Other than those two followups, the girls have had a pretty quiet two weeks. They received their last RSV shots for this season on March 1st, which I am sure they are happy about. They still may have to go through that again next year depending on what our pediatrician thinks. I could see it go either way for Lenay, but I have a feeling that with Campbell’s lung problem history, she will have them again next year. This week brings a checkup and immunizations, as I mentioned earlier, for both girls on Tuesday. Tuesday also brings a neo followup for Campbell, which will be her first one in two months. February’s was cancelled due to weather and they don’t have time in the schedule to make it up. We are hoping that they will start to ween her off her diuretic and sodium. I think those can pretty much go without much problem. We have not adjusted the dose since Thanksgiving, so it can’t be doing too much for her now. We also are going to talk about this pulse ox monitor. Campbell is basically off her oxygen during the day and just on it at night. She stays high 90′s if she is awake and rarely drops down. If she is asleep, she drops a little lower and her machine will give some random beeps during that time. The pulse ox numbers jumps around though, so while I think she drops a little, I doubt she is dropping much. I think the combination of her relaxed self plus the arrythmia medicine she is on slows her heart rate to the point where it somehow hampers the ability for the machine to read the blood flow for the pulse ox. These then get recorded as a bunch of desats, which looks bad when the doctor reviews the report but aren’t by any means what they look like. We know her so well at this time, that we trust ourselves much more than the pulse ox, which is spotty at best. If we relied just on the pulse ox, I have absolutely no idea how long she would actually stay on the oxygen and this monitor. She needs to be removed. Hopefully that will happen on Tuesday. If so, then the girls can move into their own room, which is long overdue. They are starting to fill their bassinettes quite nicely at this point and I think they would sleep better in their own bed. I know we will sleep better once they are out. I think Noah spent about two weeks in his bassinette and the girls have been in for over 6 months. Other than that, we took our first walk in the stroller down the street yesterday when it was warm. The response was mixed from both girls as Lenay cried at first, then fell asleep and Campbell seemed to like it at first, but only for a while, then she got tired of being in her seat. We will keep trying. After being out for the first time with the stroller, I now can see why twins attact so much attention from people. It is like driving a bus. The only thing missing from it being a full spectacle is lights and sirens. That should be fun for a while as we get used to this. Updates next weekend on their weights and the outcome of the neo visit.

Birthday and Half Birthday

cleanwhite — Sun, 21 Feb 2010 14:38:19 +0000

This was a pretty big week as the girls turned 6 months old on Thursday. Hard to believe half a year has gone by already. Andrea put together this nice slideshow of the girls to celebrate and we then realized that that particular file type is not supported on the blog. So Andrea has posted it to her Facebook and so you can check it out there if you are interested. An expected uneventful week finally went as planned. No doctor appointments, no problems. Lenay continues to do well after surgery, she is eating more and appears to be growing faster just in a week. Campbell has been eating better this week as we finally decided to go back to thickening her bottles to help with the reflux. This has seemed to help tremendously and she has even increased her average intake by about an ounce. That coupled with the extra calories she gets from the cereal in some of the bottles should help with her overall calorie intake. We did put Campbell back on the oxygen this week as she was still running a little low on her pulse ox numbers. That has helped tremendously and has significantly reduced the number of alarms she has. She is making definite progress and we are getting close. A little warm up would probably help her out also, so hopefully that will follow. This week is a visit to the doctor for a weight check for Campbell. Lenay goes to the cardiologist for her first post-op followup. Both should be quick and uneventful. Getting closer to spring. I know on this blog I have kept saying if we can only get to March and we are just one week away. That still holds true as things are starting to get a little easier around here. It would be nice to get the weather to cooperate a little bit. I would be happy with normal temperatures and no snow at this point. At least it can’t last too much longer. Other than that, today is my birthday. Most years, I can say that my birthday comes and goes with little indication that I am a year older. This year however, I feel it a little more. This year has definitely aged me and probably added a few years on in the process. Hopefully we won’t have a repeat of that in the coming year and maybe time will allow for a little exercise time this year so that I can take a few of those years back off.

A Broken Heart Mended for Valentines Day

cleanwhite — Mon, 15 Feb 2010 01:48:04 +0000

While I had hoped to post from the hospital, the family computer needed a password that no one seemed to know, so I did not get an update on Friday. Lenay’s surgery was a complete success. Our day started on Friday at 3:30 am since Lenay could eat up until 4 am and we wanted to make sure she had eaten something. She went back to surgery right on time and surgery started around 8 am. They called us from the back with updates every 40 minutes or so and the surgery took the full three hours. They allowed just one of us back there in recovery, so I went ahead to her room as they did want to observe her overnight. The surgery was not too bad. We had some visitors from our church who came and sat with us during the wait which helped to pass the time. The device was implanted into her PDA. Two xrays and an echo later, we know that it stayed in place and that it was successfully stopping the flow through the PDA. Lenay spent most of Friday sleeping, but she did wake up enough to eat three times, which was good. The only real side effects she showed were being pretty swollen on Friday, mainly from the extra fluids they pumped her full of for the surgery. Most of that was gone by the next morning and she has shown no effects since. She never even needed any type of tylenol or anything for pain as she never really cried at all on Friday, just mainly slept. The worst thing that happened to her is that the Bradley Social Work Dept, at the hospital handing out Valentine cards to the kids, gave her a Valentine for a boy. Her incision area is so small you can’t even tell where it was. Other than not being able to take a bath for 5 days, she really has no other restrictions. Our only real instructions were to monitor and just let them know if she seems to be doing worse than she was before the surgery. At this point, she is basically the same, no real change at all. I at least expected her to be more sleepy for a day or two but she hasn’t been. So that is a huge thing to have out of the way. She will follow up in two weeks and then then probably just a couple of appointments over the next year at which point they will set her free, as long as all goes well. She is on a 1/4 of a low does aspirin tablet once a day for 6 months to help reduce the small risk of a blood clot. By 6 months, her heart wall should have grown around the device and other than on an xray would never be noticeable, even during a surgery. Campbell has had a nice, laid back weekend after spending the day with her Grandma’s on Friday. Still working on her eating as her reflux still causes her problems with spitting up and crying. Most of the time, reflux on babies ends between 5-10 months, so we hope that she will outgrow this soon. We are told that it often seems to happen overnight, so we will look forward to that. So for this week, absolutely no doctor appointments for anyone, which is rare. Quiet and uneventful is what we like.

If Its Not One, Its The Other

cleanwhite — Mon, 08 Feb 2010 02:52:23 +0000

This was supposed to be the easy week. Campbell staying home and an uneventful doctor appointment from Lenay. Well Campbell for once kept her end of the bargain but her sister did not. Lenay’s trip to the pediatric cardiologist this week showed that one of the chambers of her heart is slightly enlarged. This is due to her heart overcompensating due to the PDA. We knew this was a possibility but thought that after it didn’t happen early on, she probably had avoided that. Unfortunately not and now we have to do something about it. So, Lenay is scheduled on Friday for a catheter prodedure to put a coil or hat like object into her PDA to close it. This is done very much like an angioplasty and is supposed to be a fairly low risk, not too invasive surgery. From what I have read, it should take between 2-3 hours. We will know more on Wednesday when we have our pre-surgery consult with the cardiologist. If all goes well, she will (which means me also) spend the night in the hospital on Friday and then get to come home on Saturday. In bigger kids, this usually doesn’t result in an overnight stay but since it is a baby, it will. Her previous hernia surgery seemed long enough and it didn’t hardly take a half hour. We do feel a little better knowing that she has had anesthesia before without incident, so that is one less thing to be worried about. Other than that, Lenay continues to do well. Not showing any symptoms of having trouble. She continues to gain weight and is looking a lot longer. Both girls have a regular followup appointment with the pediatrician this week so we will see what happens with their length and weight. Campbell has had a very good week. She continues to eat better and so we think she likely has gained weight. We have also been able to take her off her oxygen during the day. Even though we do put it back on her at night, she removes it most of the time and doesn’t set her alarm off, so we don’t notice until she either cries or wakes up in the morning. We would love to think that we could be getting close to losing the monitor. That would be fantastic as we are absolutely sick of that thing. Campbell is so much more portable now without the oxygen, I can’t even imagine what it will be like when she has nothing. Campbell has a followup with the neo’s this week too and I don’t know how many more of those she will have. I am sure probably at least another one in March but I could see that drawing to a close also. So this week, we obviously ask for prayers to for Lenay to make it through her surgery without complications as well for Andrea and I so that we can make it through the waiting. I plan to update this blog sometime on Friday to let anyone intersted know how she did with the surgery. One nice piece of news for the week. We have been asked to be one of two ambassador families for the Small Wonders Walk in October. What all that entails, we don’t know yet. Probably will mean a couple of tv or radio spots to just talk a little about our story and maybe a little bit of talking the morning of the walk. While I know our NICU and total experience thus far has been quite a ride and we are honored to represent this walk in such a special way, we are still so very lucky that our girls are doing well and so far have no long term problems.