April 30 Post

Hello everyone,

First, his liver seems to be back in gear and he has good color again. The Physical Therapists (PTs) are working with him 2-3 days a week and a speech therapist is working on his mouth function. His oxygen is barely a whiff of about 100 micrograms (instead of 2 or 3 liters) and he is holding his own oxygen levels. There is a lot more to this story that would take a e-mail book to describe but we are where we are.

Secondly, I was able to visit with the cardiologist today and here is where we are at. The holes in Carter's heart are no longer closing and his ventricular septal defect (VSD) is large enough that it won't be able to be closed with a catheter. The VSD is one of the most common heart defects in newborns. The docs are working on having him gain weight, giving him medicine to "strengthen, stabilize and slow" the heart down and increase his diuretic. The diuretic (Lasix) has a side effect that deals with the kidneys so they are giving another medicine to balance the kidney function. Once he gains more weight, gets excess fluids out of his system then we will take the next step.

In about 4-6 weeks from now (early to mid-June?), Carter will have heart surgery to close the two holes (VSD and ASD) and also close the PDA value which has also stopped closing. This procedure will be very similar to Grandma and Grandpa Anderson's heart bypass surgery.

Within two to three years, they will also remove his tonsils and adenoids to give a little more space to his airway.

We continue to work on breathing by taking some stress of the heart and sometime in the next week or so, we'll try feeding again with the NG tube. They will release him to come home with an NG tube but not an NJ tube. I think how he will be fed at home is what is keeping him from coming home at this point. As in can he keep it in his tummy? How is his reflux and aspiration?

Info Site:
http://en.wikipedia.org/wiki/Ventricular_septal_defect

Thank you for all of your love and support. The days seem to be long and run together, the trips long but being able to hold Carter and have the kids see him and hold him is wonderful. Yesterday, Carter was with PT and both Parker and Ashleigh got on the floor mat with Carter and the PT and both played and cooed with him. It was a neat moment. Carter will get TONS of attention when he finally comes home.

Love,
Alan & Kristi

April 28 Post

Hello everyone,

I went up this afternoon and got to speak with one of Carter's doctors for about 35 minutes. They are targeting the heart to resolve his breathing and oxygen needs and then they will deal with feeding.

They took more Xrays and echocardiogram of his heart and his heart is still at 70% of his chest cavity. The doctor took me back to his office and showed me several of Carter's Xrays. His heart actually grew a little bit since he was born which is why they prescribed the diuretic in the NICU. They've placed an IV in the top of his head to give him an IV version of the diuretic which should work more efficiently. His new doctor team believes that his fast respiration is due to his enlarged heart and the excess liquid in his body. It is more complicated that what I can put in an e-mail but it deals with chloride processes in the kidneys, electrolytes, pressure differentials in the pulmonary (lung part of circulation) and systemic (body part of circulation) blood flows, his holes in the heart all leading to excess water in the lungs. The diuretic is to eliminate all this excess liquid. His heart should shrink about 10-15% from the excess water and may help closing the holes. If the holes are closed, his blood circulates more efficiently. If his blood circulates efficiently, his breathing rate should decrease. It's a slightly different direction than the NICU was going, however, he looked really good today and was quite active while I was there.

Needless to say, they are focusing on his heart again. The docs believe his rapid breathing is a symptom of his heart issues.

His doctor team is called the Osborn Team and the team consists of a General Pediatrician, and a pair of 3rd year residents, a pair of 2nd year residents, a pair of 1st year residents, a pediatric cardiologist, a respiratory therapist, a gastroenterologist and a couple of medical interns. The unit provides him a nurse.

Thanks for your prayers, support and love. You've all helped us make it through this month. We figure the hour drive time and two hours at the hospital, we spend about 24 hours a week up there. It's been hard and difficult but the payoff is coming when Carter comes home.

Love,
Alan & Kristi

April 27 Movie #3

Here, Carter is taking a bath and taking a sticker off hi leg. He cries until they leave him alone! He has a soft cry.

love,
Alan & Kristi

P.S. Ashleigh picked this one.

CarterCriesaLittle.MPG

April 27 Movie #2

Here, Carter is curious about all the conversations and commotion around him.

love,
Alan & Kristi

P.S. Parker came up with the name of the movie.

CarterCurious.MPG

April 27 Movie

Here is a movie with Carter wanting to be fed. He's looking for his nurse and opening his mouth. He is very anxious and seems very hungry.

Love,
Alan & Kristi

Carter Hungry.MPG

April 27 Post

Hello everyone,

Just wanted to pass along a good update on Carter for yesterday. (Sat. 4/26) The hospital called in the afternoon and they needed to replace the NJ tube as it didn't get to its intended placement from the day before. They said they would leave the NJ tube in for a week to 10 days and then try the NG tube again and maybe a swallow test. If that fails, they'll likely place a G-tube in his tummy and that is how he'll come home and eat for the time being. We'll see as we get a new neonatologist and discuss his feeding. The docs rotate every three weeks so we'll have a new one for the next three weeks. We'll meet him/her this week.

His bilirubin levels dropped nearly in half and his color looks good so it seems the liver woke up and decided to get to work :) They'll test him again on Saturday morning with a new lab.

The last echocardiogram indicated the holes in his heart seemed to have stopped closing so another one is scheduled for Wednesday and depending on the outcome, they may close the holes through a procedure with a catheter.

They were also able to drop his oxygen down to 2 litres between 21% and 28% and he has held his own. He is breathing a little slower and a little deeper so that is also good. He's still not slow enough but he is slower in respirations. We're still looking at a 2-4 week stay in the hospital from this point in time. He was at 3 litres of oxygen for a couple of weeks so it may take a week or so to see if he can go down on his oxygen.

As mentioned, they won't send him home on more than a litre of oxygen per minute and they won't send him home with an NJ or NG tube. The goal is to see if he can eat orally and that is the goal from the neonatalists, the nurses and us. It just takes time.

A reminder to everyone and the new friends on the e-mail, we have a blog for Carter at http://andersons6175.blogspot.com/ You can also read a history of his progress beginning April 2nd.

Primary Children's Medical Center also provides a website for patients called a CarePage. It is http://www.carepages.com/ServeCarePage?cpn=CarterJAnderson&ipc=pinviteemailtemplate

You'll need to signup with a user ID and password to get in though but it is quick and has a number of pictures. More to be added.

Thank you for your prayers and thoughts. They are noticed and appreciated. Enjoy the picture.

April 23 Post

Hello everyone,

Not much to report. The biggest news is they pulled back his feeding tube back into his stomach and have done a couple of feedings. So far so good with regards to reflux and aspirations. In talking with the nurse tonight, she replaced the tube with a smaller, softer one which hopefully will help. So far, he seems ok with everything. The echocardiogram results seemed like nothing has changed with the holes but it doesn't seem to worry anyone at this point.

More tests results to come and they will see how he responds to feedings over the next 24 hours or so. Then we'll go to plan B or rather plan G most likely. Nothing new to report on his liver other than his color seems better so maybe we're making progress.

Thank you for your love and support. Hopefully RSV season will end soon. Parker and Ashleigh really want to see Carter.

Love,
Alan & Kristi

Carter's CarePage at PCMC: http://www.carepages.com/ServeCarePage?cpn=CarterJAnderson&ipc=pinviteemailtemplate

April 21 Post

Hello everyone,

Today wasn't the best news we received as we've seem to hit a bump in the road. Today, they had intended to insert a new NG tube (Nasal to Gastro...) to send food to his tummy again. Well, he threw up a little before they started. They called it bilious. You don't need to read about it, it's basically bile and its nasty. With that, they chose to cancel the NG tube and basically all other things related to his feeding changes for 48 hours. He still has a NJ tube (nasal to duod..?) to get food past his stomach as this point and they feed him milk and supplement continuously through a syringe.

Instead they gave him some medicine to get the things flowing the correct way and they will monitor it for two days. They will attempt the NG tube on Wednesday/Thursday and try it for two days. If he still has reflux and/or aspiration, they will probably pull his feeding tubes and insert a G-Tube which is a feeding tube through the abdominal wall to the stomach. He'll be fed that way for a while and they can focus on the liver and breathing.

The docs are still performing tests on his liver. His conjugated bilirubin is still increasing but at a small rate. This is the kind of bilirubin that is not treated with light. It measured 6.4 on 4/17 and 6.6 on 4/19. That is high they tell us. By the way, bilirubin levels reflect the balance between production and excretion. Thus, there is no "normal" level of bilirubin. In other words, Carter's production from his liver appears low so they are out of balance thus the bilirubin is high. He is on Actigal which should help this or get the liver in gear.

They are testing for Parvo virus and other tests, some of which test for unknown viruses that could cause hepatitis. Hepatitis means "injury of the liver". Hepatitis is acute when it lasts less than 6 months and chronic when it persists longer and is generally caused by a virus. He did test positive for Epstein-Barr virus antibodies (aka Mono). They say he either created the antibodies on his own or got them from Kristi. These antibodies are one of the few that can cross the placenta and they seem to really want to know where he picked up the antibodies. (These are the antibodies and not the virus.) They are running a couple more tests and if they can't confirm he got them himself, then Kristi will have lab work to see if she has them and passed them to Carter. (Kristi passing them to Carter is a likely scenario.)

Also, he is gaining some weight but if you compared today's weight with his weight 7 days ago, he is up only 20 grams or .04 lbs (whatever that converts to in oz) If compared over the past three days, he is up due to the enhanced feeding as posted in a previous e-mail.

Also, his oxygen remains unchanged at 3 litres per minute at between 21% to 28%. He is not able to get enough oxygen for his body at a 21% rate at this point. 21% is the oxygen content of the atmosphere. They had it at 28% all day today.

Finally, it seems the liver is their priority with the breathing rate a high second. We think that by this weekend he may likely have a G-tube for a while so that can focus on these other issues.

We appreciate your love, concern and support. We couldn't do it without your thoughts and prayers.

Love,
Alan & Kristi

April 19 Post

Hello everyone,

It's a little longer tonight but it has lots of information...Sorry.

Carter had his tests done today that were scheduled for Monday. The new results should start coming in on Monday. The tests are many but they are primarily designed to rule things out rather than to find out what he may have, if anything. To have all the results can take up to 10-days so we should have new information regularly for the next couple of weeks. The things we know of thus far are: Down Syndrome, holes in his heart, difficult breathing pace, high bilirubin output, enlarged heart and liver and a few other organs. We know of the following but not how severe/not severe they may be; reflux, gastro/esophogus things and liver output, and the cause of his still at times rapid breathing. His respirations have come down some (averaged) but his breathing is still too fast. His oxygen needs remain unchanged at 3 litres at 21-28% as needed. He has gone several days not needing more than 28% and he is generally at 21%-22% unless he gets restless and mad. He does enjoy his water baths which soothe him! Kristi also changed his diaper today and each time, he filled it up. She ended up changing his diaper 3 times in about 5-7 minutes! Greg, MeLynn and Brittany came up today and got to hold him. Greg and I had the first shift today and we could not get him to wake up for us but the girls were successful and they girls and Carter got to play!

The doctors are still curious on his liver functionality because of his continued high bilirubin count. Some of the tests are to find out why the bilirubin continues to be high. Also, the echocardiogram will continue on a weekly basis for now each Wednesday to make sure the holes in his heart continue to close up. Apparently, there are now 3, one they didn't see before but they all seem to be doing what they are supposed to and that is closing or at least getting smaller. They have not focused very much on his heart rather they just monitor it so we interpret that as his heart should be ok. At least no pending operations at this point.

I forgot to mention in last night's report that I asked Dr. Kwok, Carter's neonatologist, on Friday if he thought two weeks was a good time frame where Carter might get to come home and he simply said, "No. Weeks". Darn. We can only assume it means three weeks or longer so maybe Mother's Day will be a good time frame (and probably the earliest) that Carter can come home. Our fingers are crossed. RSV season should be ending soon so Parker and Ashleigh should be able to go into his room in the next 10-days or so. It is so hard for them. Both want to see him badly and I think they would hold him too.

I'm going to try to take Ashleigh to a Siblings class that is held each Tuesday from 4:00 to 5:00. Children are given dolls with play IVs and canulas so that when they see the new baby, they won't be shocked or scared by what they see. It's probably good for Parker too but we'll need to check him out early for school to get there in time. The class is taught by one of Carter's nurses from last week. I wish I would remember her name. Today's nurse was Maria, a new nurse for Carter.

We're going to go up there again tomorrow morning and this next week we'll talk to Dr. Kwok some more. He is a wonderful neonatologist and is Carter's attending physician and is very open and accessible for us. We simply ask the nurse for him and he comes to Carter's bedside to visit with us.

Thanks again for all your prayers and support. Our family is being blessed even though it has been hard some days. This week has been one of the hardest (at least for me) since he was born because it seems like new problems developed even though it's all focused around his breathing and reflux and now liver. It's just the learning curve for us though and we're doing well.

Just one example I can share of how prayers are answered and our family blessed. I took Parker grocery shopping tonight and on his own he pushed the cart and he sent me to pick up some items on the list. Once in the cart, he marked the item off the list. At check out, he placed the items on the counter and then bagged the groceries into sacks and was even offered a job by the checker! Once home, he unloaded the car by himself, put away the groceries and cleaned up. It was a very nice evening for what has been a very long 20 days Carter has been with us.

QUICK NOTES: Carter will be three weeks old on Monday. Daily round trip miles from our home to PCMC and back is 45 miles. Assuming one trip a day which is our minimum, we've traveled 900 miles to/from PCMC since he was born. That is the distance from SLC to Onaka, South Dakota.

Love,
Alan & Kristi

April 18 Movie

Here is another movie with Carter having a bath.

Love,
Alan & Kristi

Carter Bath.MPG

April 18 Post

Hello everyone,

We spent several hours up at the hospital today to meet with several people. We ended up meeting with the Neonatologist and the social worker which were the two main people. Still want to meet with the Utah Down Syndrome Foundation person.

We're still working on getting Carter where he needs to be and they are doing a battery of tests on Monday to check liver function and his bilirubin levels. The rest of the tests are to rule out a bunch of things.

They've added formula to his milk to increase his calories to help in weight gain. They've also given him vitamin supplements to make up for liver concerns until the tests come back. They are also going to reinsert the other feeding tube into his stomach and see how he handles it. It also looks like he has a small eye infection that is being treated.

We went back up this evening to hold him and so Kristi could give him a bath. He enjoyed it but mom probably enjoyed it as much if not more :)

They are still looking at the heart weekly with an echocardiogram, checking on the liver (which is enlarged like the heart) and supplementing his diet with additional calories and vitamins. His bilirubin levels still fluctuate so they are looking at that too which is liver related.

Positives: edema (swelling) is down, he is more alert and awake when he is awake, likes baths, no IVs, no ventilators and is in a crib and wears clothes.

Negatives: still on hi-flow canula (3 litres at 22-28%), still has a feeding tube, liver being looked at for a variety of things (size, bilirubin output, infection, etc.) and still watching the heart.

I hope you enjoy this short 18-second movie of Carter just after his bath and getting ready to get dressed in his newly made bed. The nurse tonight is Trisha again. The same nurse when he was admitted on March 31.

Sorry if the email isn't entirely coherent. The writer isn't.

Love,
Alan & Kristi

April 17 Post

Hello again,

Trisha is back as his nurse tonight. She was Carter's first nurse for the first two days. She just adores him and she noticed changes with him since she last saw him on April 2. She has been on vacation since that second night and tonight is her first night back and she got him again. It was nice to hear her say all the changes she has noticed with Carter. (She last saw him on the oscillating ventilator.)

He seems to be breathing better and a tad slower. Oxygen is still at 3 litres at 22%. Kristi said they'd be performing a echocardiogram weekly to make sure the PDA closes. He is taking reflux medicine as well as a diuretic to rid excess water from his body. He still is having a hard time gaining weight because of the diuretic but they are kind of expecting that. He weighed 3.6 kilograms tonight (just shy of 8 lbs) His bilirubin went back up again so it seems to go up, go down and go up like a roller coaster.

We'll send more updated pics tomorrow. We're going up tomorrow to spend time with all the docs, nurses and therapists (oh my) and hopefully be there for "rounds."

Some interesting reads for those interested on stuff we've been hearing about and some of Carter's medical needs.

G-Tube (feeding): http://en.wikipedia.org/wiki/G-Tube
PDA (heart): http://en.wikipedia.org/wiki/Patent_ductus_arteriosus
Edema (swelling): http://en.wikipedia.org/wiki/Edema
Bilirubin (jaundice): http://en.wikipedia.org/wiki/Bilirubin
GERD (reflux): http://en.wikipedia.org/wiki/Gastroesophageal_reflux_disease

Thank you so much for your prayers, love and support.

Love,
Alan & Kristi

April 16 Post

Hello again,

Kristi and Sue went up today to spend time with Carter and I came up about noon and joined them. Kristi was there for "rounds" and they are just weaning off the hydrocortisone which should be done by tomorrow. He has the two holes in his heart we mentioned last night and they will monitor their closure. Nothing life threatening or urgent but they do want these holes to close soon. If they don't close, they can close them with a rather simple catheter procedure. Of course, he slept the whole time I was there.

We called the nurse tonight and Carter has been moved to bed 22. The nurse (Diane) gave him a water bath and she said he just loved it. She asked if we'd bring a bottle of baby lotion so we (and the nurse) can rub it on him so he'll smell good.

They gave him a diuretic this evening to get rid of the some of the excess water (edema) from his little body and Nurse Diane was so excited that he peed 6 oz (I think she said 150cc) in one diaper! This is good news! His weight went down to 7 lbs 14 oz which is ok as he is getting rid of excess water he does not need. She indicated it seems to make him more comfortable and gives him some needed room for his heart and lungs. She was also able to drop his oxygen to 3 liters and 22% so we're closer to our goal as Carter gets stronger. She indicated that if they can get rid of the canula, they may try to move the feeding tube back to his stomach and see how he does with the reflux. This is from the nurse and not the nurse practitioner so we'll see how all this changes over the next day or two.

Still no word on the stomach feeding tube (the G-tube) but we're going to spend (or at least are planning to spend) a good part of the day Friday talking to the social worker, dietitian, geneticist, the president of the Utah Down Syndrome foundation and hopefully talk to a couple of pediatricians on Down Syndrome to see what options exist besides the G-tube.

We really want Carter to have a good quality of life and see of there is something besides the G-tube. We're praying he'll breath better and that his stomach muscle and throat flap will allow him to eat orally.

Nurse Bonnie (from the 1st week) was in Carter's room with another baby (Noah) and asked how Carter was doing and if he was ready to go home yet. Kristi told her not quite but he's getting better gradually. Carter has many friends in the NICU as far as the nurses go and we run into them from time to time and sometimes they stop and visit with us. Nurse Diane (tonights nurse) has been a NICU nurse for 23 years at PCMC and sounded like a grandma, it was so much fun to talk to her and she just loves Carter and put him in clothes that fit and says tonight will be a good night for her. It was a very fun chat with her tonight.

Sorry if this is rambling, we're quite tired and its almost midnight! Thanks for all your love and support and we'll give another report tomorrow. This will make a fun journal someday when we can compile it into something...

Love,
Alan & Kristi

April 14 Post

Hello everyone,

Carter had one of the three tests planned for him today, one was postponed and one was moved to tomorrow...it was a busy day in the NICU.

• They chose to cancel the swallow test for today since it wouldn't be fair to him since he has rapid breathing, 45% oxygen at a 5 liter rate. They don't test other newborns with a swallow test at those levels. They will reassess the swallow test at a later time.

• The echocardiogram will likely be done tomorrow. They are just checking the progress of his heart's PDA valve to make sure it is still closing.
  

• Carter did have the dye test into his upper GI and the results were he was having some reflux issues which was might be causing some of the rapid breathing. They replaced his feeding tube from his stomach to his duodenum (the part after the stomach for us non-doctor people) and prescribed some anti-reflux medicine. This also means he has to have continual feeding so he receives 50cc of milk every 3 hours on a continuous basis (rather than a typical feeding every three hours.)

The goal is to get his breathing rate down to around 60 per minute. He seems calmer and the reflux medicine will take a couple days for it full benefit. They believe this step will help him slow his breathing down. After visiting him today, he seems a little calmer and his breath rate didn't seem to go into the 100s as often as it has in the past so maybe the docs are on to something good.

Kristi went up tonight to give him a sponge bath and she says Carter does NOT like them at all. I've attached a couple pictures from today including open eyes and one where he got a little mad (probably was told the swallow test was being postponed.) :)

Thank you for your continued prayers and thoughts.

Love,
Alan & Kristi

April 13 Post

Hello everyone,

Not much to report tonight. Carter's got several tests scheduled for tomorrow AM including a swallow test with dye, another echocardiogram and a GI X-Ray. He lost a little weight and they are not letting anyone hold him right now (except mom and dad) because he gets agitated and burns up calories which may be related to his slight weight loss.

Also, the test today (or was it yesterday) on his liver showed that it is enlarged too. Many of his organs are enlarged due to the Down Syndrome which doesn't leave much room for deep, long breaths with his lungs. They are also re-examining the heart to see if its function can maintain his current oxygen needs. i.e. Is his heart pumping effectively enough to supply his body's oxygen needs. Currently, his oxygen in the canula is at 5 liters at 45%. The goal is less than a liter at 21% which could be used at home.

The tests tomorrow should help the doctors decide a course of action to get him to slow his breathing down, why his bilirubin is up and why the slight weight loss. I should also clarify that his breathing is generally fast but it is not consistent. He can breathe slow at times but he mainly breathes fast and rapid.

As mentioned, his bilirubin is still elevated but white, red and platelet cells are "normal" at this point. Also, the bilirubin that is elevated is not the same one that causes jaundice.

We're at a point where the only goal at this point, and their focus, is on his breathing. This must get to normal before any other goal or milestone can be set. Alan will be up there tomorrow and see if he can be there when rounds occur with the Neonatologist.

Thank you for all the thoughts and prayers, it means a lot to us.

Love,
Alan & Kristi

P.S. We'll send more pictures tomorrow.

April 11 Post

Hello again,

Carter was awake while we were there tonight and all the hard stuff seems to be winding down. His next hurdle is slowing his breathing rate down so that he can start taking a bottle. This is something he'll have to master over the next few days on his own so keep him in your thoughts and prayers. Once his breathing is less rapid and more consistent, they will start feeding him using a bottle and the feeding tube can come out. It is likely he'll have oxygen for a few weeks when he gets discharged.

Thanks for all your thoughts and prayers for our newest family member, I'm positive he appreciates it.

Love,
Alan & Kristi

P.S. He went down to 7 lbs 7 oz which was his below his birth weight and tonight he is back up to 7 lbs, 15 oz.

April 10 Post

Hello again,

Carter is still on the canula and may not have to go back to the CPAP machine. Also, we received the confirmed diagnosis today that Carter has a condition called Trisomy-21 or what is commonly called Down Syndrome in which there are three chromosome-21s instead of the usual two. We recognized some of the characteristics when he was born but the doctors wanted to confirm it.

He has done well with his feeding so they are removing the umbilical catheter which means he can be HELD!! Yee haw!

More to come later tonight.

Alan & Kristi

April 8 Movie

SURPRISE!

We have a 20-second movie of Carter using infrared and you can see him awake and his little eyes blinking. The room was a little dim so I turned on the infrared capability of my movie camera and he doesn't know I was filming him, the little rascal. He moves and he is awake!

CarterAwake.mpg

Enjoy!

Love,
Alan & Kristi

April 7 Post

Hello everyone,

I started back to work today as much as I can. Kristi went up around lunchtime and spent a couple hours with Carter. He was awake and fidgity. The nurse indicated his bilirubin was elevated and they were working on it. The nurse wasn't sure if it was his liver needing to catch up with the change in feeding or an infection.

The nurse also got Carter to start sucking on a binky today. I went up at 4:00 today and stayed until about 5:30. I helped Carter suck on his binky and talked to him and held his hands for the longest time. He also opened his eyes to look around. The binky thing is a big step because this will help him eat when he comes home.

Carter is up to 20cc of milk and is being tube fed every 3 hours. They hope to wean him from his IV feed into his belly button and rely more on the milk sometime this week. This will cause him to lose some weight and he is expected to go below his birth weight and then come back up again.

He still is using a CPAP to help him breathe but his hands are clear from being pricked.

He also cried a little more than previously which means his lungs are coming along but we still have a ways to go. If he can get off the CPAP machine, they'll put in a canula with a high-flow of oxygen and then a regular canula.

We'll get some fresh pictures tomorrow and send a couple to you. Thank you for all your prayers and support. Carter is doing better because of your prayers and thoughts.

Love,
Alan & Kristi

April 6 Post

Hello everyone,

Another Carter update...

He still struggles a little with breathing but it seems to become a little easier each day or two. He got kind of agitated tonight when a newborn was admitted (they were noisy as they moved the newborn from the stretcher to his NICU crib) so Carter was to be transferred to a quieter room in the NICU. However, in the end it was easier to move others and so Carter is still in room/bed 28. They also had to put him back on a sedative to calm him down as the noise really got to him. (Carter may not like loud noises apparently.) To help his breathing, Carter is still on the CPAP machine for respiration. The good news is that the IV has been removed from his hand (both hands can be held!) and one catheter in his belly button has been removed (1 to go!). He still has an IV in his foot too. He is making great progress.

He has been off his Dopamine (blood pressure med) and they have started feeding him milk through a feeding tube. They are giving him 2 tsp every 3 hours adding 2cc to each feeding. The 2 tsp drains to his tummy in about 30 seconds so his feedings are fast! I should look into this as a great time saver for my meals! However, he still receives the majority of his nourishment and calories from a bag using the remaining IV in his belly button. They will do more tests and measurements and the goal is to slowly wean him from the bagged food and move more and more to the milk. Tonight is also the last night for his antibiotics. More good news is that Carter has added 11oz to his weight (yea!) but they expect him to drop to his birth weight or below as he is weaned over to milk and then Carter should regain it.

We should receive the chromosome test results on Wednesday or so. This test should confirm his Down Syndrome and any other discovery they may find. Later in the week, we should receive a status report of his digestive tract. There is a 12%-15% chance of a defect in his digestive tract. At this point, it appears his heart is free of defects even though it is larger than normal. The heart is the most common defect in a Down Syndrome baby (approx 50%) so we feel blessed that his heart appears to be ok.

Moving to milk feeding with the mouth will have some challenges due to his tongue being larger and his mouth smaller (another characteristics of Down Syndrome) so they are trying several bottle nipple styles, sizes and softness to see which one is most comfortable for him.

Lastly, we truly appreciate all the prayers on behalf of our family. It is amazing and very helpful for our family to have a support group as strong as our immediate and extended family.

We love you all,
Alan & Kristi

April 5 Post

Hello everyone,

We went up last night and they are gradually removing the sedative and he seems to be more mobile. The Respiratory Therapist was able to wake him up and I saw his eyes yesterday afternoon. They are trying to get him to cry more often so he can clean out his lungs and get them to expand more. He is currently on a CPAP machine (similar to what they use for sleep apnea) to make it easier for him to breathe. We told him that the more he cries, the quicker he can come home to us. :)

Carter is holding his blood pressure on his own so they have removed his Dopamine (blood pressure medicine) as of 2pm yesterday. His glucose is good, blood pressure is good, oxygen level and other things stable. He is still being fed by an IV but that is our goal next week...feeding.

Kristi was able to participate in his 8:00 sponge bath last night and we got a couple smiles out of him. His smiles are great! He is 8 lbs and 11 oz but will lose some weight as they wean him off the IV and he attempts eating with his mouth.

Love,
Alan & Kristi

April 3 Post

Hello everyone,

We wanted to give you an update on Carter. Carter was taken off the ventilator today at 11:00 a.m. and breathing on his own but with some oxygen assistance. His heart seems to be good at this point and the "puffyness" of his head and neck from the gestational diabetes are decreasing daily.

Up next some time the week of April 7th is feeding. Slowly with a feeding tube at first and progressing to bottles and nursing. Then some more tests for his abdomen. We'll be up at the hospital daily, including this weekend, but with as yet unknown times. You're welcome to come up and see him if you are interested, just let us know.

NICU visit guidelines:
Grandparents can come anytime WITH or WITHOUT the baby's parents present.**
All others can come between 9:00 a.m. to 9:00 p.m. WITH the baby's parents present.
Only sibling children are allowed in the NICU with the baby's parents.
No visitors in the NICU during shift change which are 6:30-7:30 a.m and p.m.

Love,
Alan & Kristi

April 2 Post

Hello everyone,

We've decided to name the baby Carter Jon Anderson. He can go by Carter or he can go by Jon or maybe even CJ. We'll see what he likes. The name also gives him the option to choose a name that he finds easy to pronounce or spell.... i.e. CJ, Jon or Carter.

We'll probably start out with Carter and see where it goes.

--
Love,
Alan and Kristi Anderson