Tuesday, December 16, 2008

The big day!!!

I had a Dr appointment today for my glucose test and regular check up. All is well and I survived the blood work (barely). I am a huge needle phobic and you would think as many times as I have been stuck or watched Noah get stuck I would be over it by now. Although it has improved dramatically (I can actually go by myself now), today it really got to me. I regained my composure after a short time though! The best part of the appointment is that I got the date for my c-section!! February 17th will be the big day!! I know it seems really early but since it is scheduled they always go two weeks early. That's two months from tomorrow! Yikes!
Zane had a rough weekend with strep throat but we caught it really early and he was started on antibiotics right away. He is now feeling much better and back to his old self. Only 3 more days left until Christmas vacation! I think he might be just a little excited about that....
Noah is doing great! He had an awesome therapy session yesterday and was showing off all of his tricks. He is still letting go of things and doing some free standing but hasn't quite yet tried to take a step. He has been eating great lately! We have been able to get almost 300 calories in him a day and he is still drinking up to 3oz of water/juice on his own. He is still getting 11-12 hours of continuous feeds into the j at night and water boluses of about 7oz during the day. He has started pointing at food that he wants and actually showing signs of hunger.
As long as everyone behaves, there are no Dr appts or therapy until after Christmas so we intend on relaxing and enjoying our families and each other over the next week. We still have lots to do to get ready for everything and I will make a public apology now for not getting Christmas cards out this year. I had every intention of doing so, but then just never got around to it.
Thanks for checking in on us!!

Friday, December 12, 2008

Baby Baker Gets Another Good Report

I traveled back up to U of M yesterday for another fetal ECHO. Since the last one was great, I wasn't as nervous this time, but there is always that shadow of doubt that enters your mind. Once again, we received good new that the baby's heart looks great!
I added a link with some good information on cystic hygromas to the right if you are interested. I have had alot of questions in regards to our early prenatal findings and what we might be in store for. This was the info we were given in the beginning. As I read through it again, I am in awe of our good fortune and blessing at how things have been unfolding. When we were told at our 10 week ultrasound of the increased nuchal fold and then when it developed into a cystic hygroma, the Dr's had painted a very grim picture for us. Truthfully, although we intended on carrying this baby as long as God had intended, we were preparing for the worst. When our chromosome test came back normal we knew our chances were better, but never did we expect the hygroma would resolve and as of now we would have a healthy baby with no other anomalies detected. This was one of the reasons in that we had decided to keep the gender a secret. With Noah we told both the gender and the name which left so much emphasis on his birth defect and the unknown of his future. Keeping this little secret this time around has allowed us to focus on more than the tests, specialists, and fear of the unknown. Yesterday has added even more confirmation that in just 12 short weeks we will be welcoming a new baby into the world with one of the only fears being....how in the heck am I going to keep my sanity with 3 kids!!

Sunday, December 7, 2008

18 months

It's hard to believe that today Noah is officially a year and half old....what an amazing 18 months this has been, and it just gets better and better every day. I will always look back on each and every day with a thankful heart.

He is doing so much better with the g-j tube, it really is like night and day. He is sleeping better and so much happier during the day. He actually had the best dinner last night and ate more in one sitting than I have ever seen him eat. Right now he is getting 12 hours of continuous feeds through the j at night. I am not giving him anything during the day in terms of formula bolus. He may require an occasional water bolus through the g. Knock on wood, he has been doing really well with the sippy cup and drinking quite a bit of water, up to an average of 3oz a day. If he keeps that up we can keep things the way they are, if not we will supplement what he needs during the day.

Just in the past few days he has initiated standing by himself. He will pull to stand at the couch and then let go long enough to clap for himself and then get his grip again. He's so proud! He really seems to be gaining some confidence and I think his orthodics have been a big help!

Zane had his first basketball game yesterday and did great! They played two 40min games back to back full court! He was really tired but played so well! He went out deer hunting with Uncle Jeremy this afternoon for the first time. He was so excited I don't think he slept much this weekend. I will admit that I am a bit nervous about it but at least they are on private property and will be the only ones out there. I am sure he will have some stories when they get back!

Noah and I were home alone last night so I grabbed a little video of him including his awsome dinner! (Sorry that one is a little long) You might have to pause the music player first before you hit play in order to hear the sound on the videos.

View this montage created at One True Media
My Montage 12/7/08

View this montage created at One True Media
My Montage 12/7/08

Wednesday, December 3, 2008

We're Baaaack....

It's been a long two days, but we are back from Ann Arbor!

I will try and give you an overview of each event....

Pulmonary Function Test - Of all the tests Noah has had, this was by far the most bazaar! We had to wake him up (and keep him up) at 4:30am Tuesday morning. In order for the sedation to take good affect he must be sleep deprived on top of that. So we had to be creative, but we managed to keep him up until the test. Once he fell asleep they proceeded to put him into an inflatable vest and load him into a contraption that Brian pointed out strongly resembled something Superman traveled in from the planet Krypton. Once inside the clear plastic box they put a mask on him and began using different techniques to measure his lung volume, function, ect. Afterwards the pulmonologist reviewed the results with us. She said that she was happy his lungs were growing but he was having some issues with obstruction, air trapping, ect. She recommend that we continued the inhaled steroids daily and do another PFT when he is 2. Although the test obviously showed issues with his lungs and that they are not in the best of shape, it's not hugely uncommon for his diagnosis. She is going to call us with the final results of this test in a week or so and review the rest of the findings.
Surgery Clinic Appt - We then took a very drunken Noah down to meet with Dr M in ped surgery. He made quite a spectacle of himself with his head rolling around, eyes flipping back and yelling "Bye Bye" to everyone. We reviewed the plan for the g-j placement and feeding issues and were on our way.
A Visit With The Landrums - Some friends of ours that we met when Noah was born were in the hospital with their son Luke who was recovering from another heart surgery and we were able to stop and visit for awhile. Both the boys have come leaps and bounds since we all saw each other last! It was great to catch up and see Luke doing so well!
Hip X-ray - We were then on to radiology for Noah's hip x-rays to see if they could find the source of his hip cracking. We got those results back today and all is normal! They hope that when he starts walking and standing on his own that this will diminish.
A Date With The Ellingers - Noah was ultra crappy as the day wore on so I was worried about how well he would play with others but he had a great time seeing Mason! It is always great to see them all! We had some good laughs and they boys were equally amused with each other although I have learned that Noah needs to work on his sharing skills!
A Long Night - Noah didn't sleep to well in the hotel last night. I think he gets frustrated that he can see us through his pack-n-play but can't understand why we aren't letting him out. We could see his head pop up over the edge and feel him staring at us angrily. He has never been one to lay still and snuggle with us in bed but this morning he gave in and curled up next to Brian for a little extra shut eye before we left. Zane was my cuddler as a baby, but Noah usually won't hold still so it was super cute and I hated to wake him.
G-J Placement Procedure - We arrived back at the hospital early this morning for the g-j placement, much to Noah's dismay. Brian was able to walk him back to the OR and stayed till he was under anesthesia. The tube was placed successfully and Dr M removed all the excess granulation tissue from the site. He was back in recovery in just over an hour. He has had a little pain from the tissue removal and a sore throat from the breathing tube, but other than that he is doing well. He has been really crabby and uncomfortable most of tonight but I think he is mostly just worn out from the past two days.

We are so glad to be home and have these two days behind us! We are going to try and get a good feeding regimen set up in the next few weeks and try and find what works for Noah to get him eating and gaining weight again! Zane was glad (I think) to have us home, or so he says, but I think he wouldn't have minded hanging out at Grandma's house a few extra days! He had a great time and maybe got a little spoiled? We are officially in "snow delay" season so he has been watching the weather channel all night praying for snow. Can't say I blame him!

Thanks for checking in on us! I have my follow up fetal ECHO next week but Noah gets the whole week off from appointments!

Tuesday, November 25, 2008

These shoes were made for walkin'

Noah is doing really well with his new orthodics and really seems to like them. Right now is to be wearing them at least two hours a day when he is most active. So far, we haven't had a problem keeping them on his feet, although he is quite intrigued with the Velcro straps.

He also had his evaluation with First Steps this week to review his need for services. Once again he passed with flying colors on his fine motor skills but is still showing an obvious delay for large. No surprises there. They did however recommend introducing a speech therapist as he is showing a delay in speech and social skills. I knew this was coming but we are not concerned about it. I tried to tell them that he is quite fluent in some foreign babble that I haven't quite figured out yet. Apparently they are more concerned with his English vocabulary that only consists of just a few words. :) Brian and I both feel that he is behind everywhere else, it only makes sense that he would behind in this area too and don't really feel speech therapy is necessary, but if they think it will benefit him, we won't stand in the way. As long as adding another therapist to the mix doesn't affect his anxiety, we will give it a try.

His physical therapist and I have been noticing that Noah's hips have been "clicking" for awhile now. We were hoping as he began standing and weight bearing more that this would improve but he continues to crack in his joints alot. I spoke to U of M about this and they want to do some hip x-rays while were are in Ann Arbor next week. We will have these done on Tuesday after some of his other appts and it will be read by one of the Ortho Dr's there.

I had a Dr appt for Baby Baker today and all is still well. Blood pressure - good. Heartbeat - good. Dr Bhat said no reason to do an ultrasound at this point. Man is this kid getting boring or what? :) Isn't it great?! I will go back in 3 weeks for my glucose test and then will be seen every two weeks from that point.

Zane is doing great although he was pretty disappointed to hear he would be out of school for a few days for the Holiday:) This is another reason that I love being home, that I can spend that time with him when is out of school. Fortunately for now he is still at the age that he actually likes spending that time with me! He is still so great with Noah but I can tell his patience is starting to wear thin when he starts asking me when Noah's bedtime or nap time is. If Zane is home, Noah has to be where ever he is at all times. He is fitting that "little brother" role quite well!

Tuesday, November 18, 2008

To tube or not to tube....

Noah is still sick but overall, handling it pretty well. He is coughing quite a bit, mostly at night but still has not had a fever. I took him to the Pulmonologist today to see if he was clear for tomorrows procedure. He told us to continue the extra breathing treatments and started him on steroids. He felt confidant that for no more than Noah would be under anesthesia he should do okay with the procedure. So at that point we were planning on heading up for the g-j placement in the morning. When U of M scheduling called they reviewed Noah's symptoms and after talking with anesthesia determined that it would not be a good idea. After Noah's last stunt during the g-tube resite they want to make sure he is the picture of health before putting him under again. Normally they would reschedule out 4 weeks of an illness but based on his intolerance to feeds and weight loss they are going to do it in 2 weeks. This will actually work out a bit better as he already has a pulmonary function test scheduled up there on the 2nd of December. We will now just stay overnight and do the PFT on the 2nd and the g-j on the 3rd.

In the meantime we will just keep doing what we are doing with him. I received a call from his PT that his orthodics are finally in so he will be trying those out this week. Of course they are camouflage so he will be the picture of coolness with his new shoes. More appointments next week also, Noah will have his yearly evaluation with First Steps to evaluate where he is at with everything and if any changes need to be made. I have an ultrasound on Tuesday for the baby. It's been 4 weeks since our last appt so I am anxious to see how things are going. The continued baby acrobatics and the fact that I am getting to be ginormous are good signs to me, but it's always nice to reassured! We are looking forward to the Holiday week! It will be great to see the family, and Brian and I are already fighting over who gets to hold our nephew Liam first!

Once again, another year that we have so much to be thankful for....

Friday, November 14, 2008

Sick and tired of being sick and tired...and another trip to the OR for Noah

It seems like we have all been sick, passing it back and forth for the past few weeks. I'm not sure who started it, but we have all had a cold, sore throat, sinus infection, ect. Some of us have had it twice! This week was Noah's turn and he started Monday with diarrhea and a runny nose. It has now progressed into his chest with a cough and continued cold symptoms. I called his pulmonologist and they have us giving him breathing treatments every 4 hours followed by 15 minutes of chest percussions to break up whatever is settling into his lungs. He has not had a fever which is good and other than the occasional cranky, "hold me hold me" phase, he is in pretty decent mood. His Dr expressed his concern again about Noah being denied Synagis for RSV and reminded us to be ultra cautious and mindful of winter quarantine. Right now it seems like there are more germs circulating INSIDE our house rather than OUTSIDE!

Well after a month of experimenting with the g-tube feeds we have gotten nowhere. We were hoping to start building a hunger cycle and instead Noah's oral feeding has regressed significantly. We tried weaning the continuous at night and he lost weight like crazy. He continues to be uncomfortable at night and retches during many of his boluses. The clinic nurses called this week to check up on him and we had to report no progress and no weight gain. So after talking with the surgeon again it looks like they are going to put the g-j back in. Not sure if you remember, but we had to take it out and put the button back in because the tube stopped working altogether, both the g and the J. We were hoping this would work and we wouldn't have to have another placed, but we all think it is best. He ate so much better when the feeds ran into his intestines and overall, he was a much happier boy. The procedure is planned for next Wednesday. He will have to go to the OR under general anesthesia but should go home after the tube is placed. If he is still having respiratory issues through the weekend we many have to postpone until he is up to par.

Aside from these issues all is going well and I can't believe Noah will be 18 mos old soon! Time really does fly! Zane has been the healthiest out of all of us these past few weeks and doing great. We just finished his new "camo" room and it looks great! I will post a picture once we get his curtains done. He is so busy with basketball and cubscouts but having a great time in both activites. He came home today from school and wanted to go outside and build a trap. Silly me, I asked what he was intending on catching here in the great state of Indiana. "A turkey for Thanksgiving, duh". I should have known. He even had blue prints drawn up. He dressed head to toe in camoflaugh and went outside with some rope, a rock and few other random objects. One to many episodes of Survivor Man for this boy. I will keep you posted on that one!

Sunday, November 2, 2008

Our child, the Drama Queen

So another restless night for Noah last night and finally came to screams about 7am. When I went in to get him, he was soaking wet with formula and not very happy about it. In the dark I could obviously tell that his connection had come loose somewhere and I began searching for it. I finally turned the light on to find his g-button dangling from the end of the extension and Noah was wireless! Not good! I had last checked him at 4am and all was well so somewhere between 4 and 7 his button came out. We were praying that it was sooner rather than later because these sites can close up in a matter of minutes. When we tried to put it back it, it wouldn't budge. We couldn't get anything back in through that hole. So, we cleaned him up, packed him up in the car and headed for the hospital. The ER doc said he would try and work it back in but if he too wasn't able to get it in, it would have to be replaced under sedation or surgically. After a very long couple of minutes for Noah and nothing delicate about it, the Dr successfully got it back in. I am sure it was very unpleasant for Noah, but better than the alternative. We were back in the car shortly after and headed home!

We also found today that Noah has lost all of the good weight he put on in the last few weeks in just a few short days. So this means we are back up to full feeds at night again to compensate. His appetite has been horrible this weekend (despite the Halloween candy!) so the weaning was not having an affect on his hunger cycle anyway. All in Noah's time. We will get there eventually!

Tuesday, October 28, 2008


Life continues to be fairly quiet, which is nice! Zane received his bobcat badge for cub scouts and starts basketball next week. I had parent-teacher conferences last week and was pleased to hear how great he is doing in school! He was even invited into the accelerated spellers club. I mis-spelled "alphabet" in my 2nd grade spelling bee, so I know he didn't receive that gift from me!

Noah is doing well but feeding continues to be our biggest issue and main source of frustration. Since we put the g-button in, he screams at the sight of his bolus at meal time. We have learned to distract him as much as possible, otherwise he will scream and tremble during the feeding. At first we thought it was hurting him, but if his attention is focused elsewhere he seems to be okay. He will retch after some feedings and others be just fine. The night time is about the same expect we have noticed he is restless and wakes up about every 1-2 hours crying. It passes quickly, but he used to sleep very soundly through the night. We have noticed no increase in appetite which is disappointing. The dietitian called today for a status and said we could decrease the nightly feedings even more to see if that makes a difference. I don't know if it will or not, because last night he was shut off at 3am due to a malfunction of his pump. Interestingly enough he slept like a rock until 9am! I was hoping for a big breakfast, but he only ate a few bites of waffle and gave the rest to the dog. I am weighing him often and so far he is still gaining at a good rate. He developed an abscess in his old g-tube site, which I thought was weird. I thought maybe this was his source of discomfort, but he seems completely unaffected when I clean it or mess with it.
I had an appointment with Dr Bhat today, overall pretty uneventful! All is well with baby Baker as of now! The heart rate is consistent at 140 (hmmm is that a hint?). We talked a little bit about delivery and my c-section. Brian and I have decided that it is best that I have a tubal done after my c-section. It makes me sad to think about but based on our history, it needs to happen. Plus we have been blessed with 3 children and that is plenty for us! There is always adoption if somewhere down the line we feel the itch, but I feel pretty confidant after 3 kids, 2 still in diapers that there will be no such itch!! I have always loved being pregnant and I will continue to be thankful for every day. The baby has started doing some serious aerobics and is growing like a weed!
We went to the Great Zoo Halloween this week and I got some good pictures of the boys' costumes. Noah was so good and left his on the whole time!
Have a safe and Happy Halloween!

Tuesday, October 21, 2008

New feeding regimine...the saga continues

So we were excited to start Noah's new feeding routine in which we would start feeding through the stomach both continuous at night and 3 boluses during the day. The bolus feeds went really well. We will let Noah eat first and then when he is done we give him the bolus and he gets that "full" feeling. So far, we have not seen an increase in appetite, but it's still pretty new. The night feeds on the other hand are a whole different story. The first night we started it, we would hear his pump beeping every two hours with the error message "clog in line". For whatever reason the food was not going into his stomach fast enough. Finally the pressure would build up enough that the connection would blow loose and we would find Noah in his "waterbed" again. We have taped the connection, adjusted the tube, ran a million flushes, and everything else we can think of. When we bolus him during the day, I just attach a syringe to his tube and let the formula flow in by gravity. We noticed though that we would have to push it in with the plunger and it would never go in by itself. We called clinic yesterday hoping it was some mechanical issue that we would fix. We played with the balloon, deflating and inflating and still the same results. Then the J portion of the tube starting doing the same thing as the G on continuous feeds. Finally today the clinic nurses decided that the tube is either clogged, defective, or not in the right position and it would have to come out. We were pretty bummed at the thought because the g-j tube has to be replaced in the operating room under general anesthesia. However after discussing it with the surgeon they agreed that as long as he tolerates his feeds into the stomach with no retching or leaking we can put in the g-button! Yay!! So, we put on our Dr hats and removed the g-j tube here at home and replaced it with the g-button. Man o Man have I missed the ease of the button over the tube that we had to tape down to his stomach. So, here is hoping that this works and that we are back on track. If he stops tolerating the g-tube feeds or begins to leak, it's back to the OR we go.

We went to the pediatrician today for Noah's flu shot and got the unfortunate news that he was not approved for Synagis this year. These means no protection against RSV this winter. A simple cold for us can be RSV for him so we are going to try and be extra careful. Zane had his flu shot on Friday as well. We also go the script for outpatient physical therapy so I will start making calls this week and get him going on that.

Thanks for checking in on us and have a great week!

Thursday, October 16, 2008

Lots of info - sorry for the novel!!!

We just got home from our big day in Ann Arbor. We arrived around 9:30 for Noah's CDH multidisiplinary clinic. This new clinic is wonderful and works so smoothly and we saw every specialty involved in Noah's care. I will try and highlight them one at a time..
CARDIOLOGY: Dr G took a good history and a look at Noah and was very happy with where he is. He was please with the ECHO, EKG and saturation test from a few weeks ago. He had no recommendations and does not need to see him again unless there is a problem! Yay!
PHYSICAL THERAPY: We were so excited to see PT Dan again! He worked with Noah in the NICU and used to snuggle him up and rock him when he was upset. Noah took to him right away and surprised us all by doing all of his latest tricks for him. He even let Dan work his legs and muscles. After the assessment Dan told us that Noah is functioning at the level of a 10month old. Although depressing, we aren't surprised. We know he has alot of work yet to do. He agreed that his feet are a mess and orthodics are a must. This will help him tremendously. He is also recommending we start outpatient therapy twice a week. We discussed Noah's anxiety issues and that we had to cut back a bit on in-home therapy because of this. He said being in a new enviroment may help but also wants us to continue with the home therapy as we are doing now. He also pointed out that his abdominal muscles are very weak due to previous surgeries and to try and focus on that as well.
OCCUPATIONAL THERAPY: The therapist was very happy with his fine motor skills and agrees that he does not need any additional therapy in this area. She was quite concerned with his oral feeding habits and hunger cycle and expressed her concerns to the rest of the team for plan that I will elaborate on later.
PULMONARY: Noah had a chest x-ray this week that was looked at today. It was "not one of his better ones" according to them. His left lung was extremely hyperinflated and the right one was not fully expanded. Not hugely uncommon for CDH kiddos but just evidence of his chronic issues. They want Noah to have a PFT (pulmonary function test) in the upcoming months to looks at how his lungs are actually functioning. We will continue his breathing treatments as we have been and they strongly encourage a flu shot which he is getting next week. We are still hoping for for Synagis again this winter but unsure if he will still qualify.
SURGERY: Dr M was not not happy with the ever growing granulation tissue once again on Noah's new site. He is just not sure why Noah heals like this. We were all in agreement that as long as it is not leaking, we are not going to mess with it. It's not worth another trip to the OR to remove it.
DIETARY: I brought a food journal from the last week and we calculated that Noah is only eating about 100cal per day which is only 10% of his daily caloric needs. Therefore he is still getting 90% by tube. We got great tips on how to "beef" up his age appropriate foods with healthy oils and other things to add more protein to his diet.
THE BIG PLAN: So all the specialties got together and had a quick meeting about Noah's eating/feeding routines. Concerns were this: Noah has no hunger cycle and eating for him is not a necessity but more of just something to do. Feeding through the intestines is not natural and can't be relied on long term. We know at some point in order to get him away from tube feeds we will have to start feeding the stomach again to regain the empty and full feeling of normal hunger cycles. Up until now we were dealing with a horrible g-tube site that leaked and his inability to tolerate stomach feeds. Now that we have a working site and not quite sure how long we will have it, as it is looking ugly fast, it's time for some changes. They all agreed that we should start feeding through the g-portion now. We will start backing off on nightly continuous feeds and start giving bolus feeds during the day. We will start each meal by letting him eat what he will take and then when he is done, give him a bolus through the g-tube. Dr M says the minute it starts to leak we will have to stop and go back to the J-portion. They increased his Zantac to ensure the acid levels in his stomach are under control. Noah is finally gaining weight at an acceptable rate and is back up under the 5th percentile. We will have to monitor his weight closely to make sure he is still heading in the right direction. They can't stress enough how important it is for his weight gain to continue. With his other health and development issues, he needs those calories for healing. We are thrilled with the new plan but nervous as well that it won't work. I am so ready to see him move forward though and not be stuck in this rut forever.
We ended the day with our fetal ECHO and ultrasound for Baby Baker. Brian and I both were a nervous wreck for the whole thing. The cardiologist looked at us afterwards and said....(are you ready for this?) "everything looks normal to me". It took us awhile to get our jaws off the floor. We then moved on to the ultrasound and heard the same news. They too said there was no evidence of the hygroma any longer and no other anomalies were detected. The perinatologist was thrilled and said that although it is common for the hygroma to resolve if the chromosomes are normal, it is not so common for there to be nothing else found. Even with a complete resolution of a hygroma there is still only a 50%-80% chance of a good outcome. They want to keep a watchful eye and asked us to come back for another fetal ECHO in 8 weeks and to keep a good watch on the baby's growth in the 3rd trimester, but with the way things look now the don't anticipate a problem. For now, we are celebrating a miracle! This baby has really beat the odds and I can't believe how fortunate we are! When I think about the predicted outcome when this all first began to where we are now, we couldn't have asked for anything better!

Thursday, October 9, 2008

Where's the cap and gown?

Noah graduated from occupational therapy today! Although we are so sad to see Miss Lisa go, we couldn't be more proud of him! Miss Lisa was so excited at the progress he has made in his fine motor skills! It was music to my ears to here someone say, "he is right where he should be in this area!". Noah must have know it was his last visit because he laughed and played the whole hour! She left us with a list of things to be working on and watching for in the next few months but feels he is catching up perfectly! He still has quite a bit of work to do in the large motor skill area with PT, but he seems to be getting stronger every day! We have been putting his cup in front of him any chance we can and usually he will take a sip here and there and shake his head no, but yesterday I measured at the end of the day and he had drank 4oz! That is the most he has ever drank in one day! The more he takes in on his own, the less we have to put in by tube! We are still gearing up for next week. Tuesday Noah will see his pulmonologist here in town and Thursday is the big day in Ann Arbor. Noah will see all of the specialists including a dietitian in the morning and then we have the big fetal ECHO and level II ultrasound in the afternoon. We are optimistic but preparing us for whatever we hear that day.
A little Zanism for you....
The other night Zane and I were talking in the car on the way home and he was asking me all sorts of random questions. I finally asked him, "What's with all the questions?". He replied simply, "I am trying to figure what my gift is that God gave me." That left me pretty well speechless! This led into a big conversation about God and Heaven and he asked me what I thought it would be like. I told him I didn't know other than what the Bible tells us and that was that one day we would all live in perfect harmony, no more pain, fighting or sickness. Zane was quiet for a few minutes and then said, "Well, even if he is God, I don't think he can keep me from fighting with Georgia and don't you think that would be more helpful now then waiting till we get to Heaven?"

Monday, October 6, 2008

Pumpkin Picking!

Yesterday we ventured out to pick pumkins for the kids. Even though it's technically quarentine season we figured we would be mostly outdoors anyways. Noah had a blast and thought all the pumpkins were balls that he could throw. He was finally just content to sit in his stroller and people watch the rest of the time. Quarantine is going to be hard on him this winter, he so loves to be out in public. Zane had a good time too, of course he wanted a pumpkin the size of Wisconsin and everything else sweet inside the farm market store. He knows that I am weak when I am pregnant and anything sweet is generally negotiable. All in all we left with 3 pumpkins and a bag of goodies. I love this time of year, I only wish it lasted longer!

Noah continues to do well! Overall he is eating very well, but still not drinking hardly anything. He is still gaining weight nicely and we have been compressing his tube feeds again. This way he doesn't have to wear his backpack as much. His granulation tissue just keeps growing and growing. We did a silver nitrate treatment at home last night and it still doesn't seem to help him much. Oh well, as long as the site doesn't leak we will just live with it!

Some of you may remember me posting about the Turner family last year. We met them while we were in the hospital after Noah was born. Their son Hudson was born with hypoplastic left heart syndrome and was in need of a heart transplant. Hudson passed away soon after his transplant after an amazing battle. Well this past weekend Brooke and Luke welcomed the newest member of their family into the world! Holden Turner! Congrats to all of you, we are so happy for you! Both Brooke and Holden are doing great!
Have a great week!

Saturday, September 6, 2008


Welcome to our new blog! We can't thank you enough for taking the time to follow our journey and check on our family!