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!