Alexander Dimick Eastman

Alex is back home minus the Tracheostomy tube!

Well, it has been a roller coaster ride for the last week. Ten days ago we were still anxiously awaiting any news about bout the sleep study which was done 5 weeks previously. On Friday, we got a call saying that we could call Monday to schedule the decannulation. On Monday, we were told that it could be Wednesday. On Wednesday, Alex had a bronchoscopy that still showed some occlusion of the upper airway (at which point his parents' hearts sank), but the decision was made to go ahead with decannulation on Thursday. Alex has been trachless since Thursday morning and looks to stay that way. He likes to tell people "trach out".

We got discharged from the hospital on Saturday. Except for an ill timed food alergy, losing the feeding pump AC adapter, and some gurgling snoring, we are doing well.

Thanks for everyone's care and support.

New pictures

First the headline. Great News: Alex to Get Tracheostomy Tube Removed!!!

Now the story. After our last trach/vent clinic, we got the green light to start capping his trach tube. The cap is basically a red plastic thimble that prevents Alex from breathing through the trach tube. On July 12, Alex and Becky spent the night in the hospital for a sleep study. They spent an hour hooking Alex up to bunches of electrodes. Then, in a strange place, wearing his cap and 16 leads at night for the first time, Alex was supposed to have a normal night's sleep.

Then there was the waiting. We had heard nothing until ten days ago, when we got a hold of his nurse specialist who said that the study looked mostly ok to her. She said that we could start capping him as much as he tolerates. Alex is now capped and breathing normally most of the time.

Finally, yesterday we got a call that the pulmonologist had a chance to read the results of the sleep study. It wasn't completely normal, but it was good enough to warrant trying to decannulate. On Monday we are going to schedule the time with the hospital. We will let people know when we have a date.

Now just a little catching up. We haven't sent out a note since last fall. A lot has happened since then. Had a great Thanksgiving in Wisconsin Rapids with Becky's family and a great Christmas in Yellow Springs. This spring we had a really nice vacation in North Carolina, visiting both Becky's sister in Raleigh and meeting Eric's sister and family at a rented house on the outer banks.

Since he as been wearing the cap more and more, Alex's oral speaking has really taken off. Eric's mother, Laurie, is here and was able to recognize when Alex said "two silly monkey boys" which is what he says if you ask the question "Who are Alex and Dad?".

Here are some pictures of our spring and summer.

Alex's sign vocabulary has increased a good deal, and he can communicate quite well using sign. All too well at times. He has a few spoken words but really doesn't use them to communicate. He is getting a lot of sounds past his trach.

Alex still gets his nutrition through his feeding tube. However, he is showing a good deal of interest in food and sucks on a lot of things at mealtime. His current favorite is to lick all of the salt off of pretzels. Alex's favorite sign sentence: "Different pretzel please, Mom/Dad."

It was originally planned for Alex to start having jaw surgery this fall. However, it was discovered that there is no ascending portion to his left jaw. Before we can do any distraction (pulling apart the jaw and encouraging it to grow into the space), we will need to graft some bone and create a joint. This is best done at the age of five or older, so we will be waiting for a few years before we attempt any jaw surgery.

New pictures from Aug. 2003

Alex has made huge progress through the fall and winter. In the span of about six months, he went from not being able to roll over on a cinsistent basis to walking, with a brief crawling stage in between.

He is also really taking off with sign language. Alex knows 50 signs now. Most of them are objects such as car, book, and doggie (three of his favorite things). But he does know some other signs, such as pain, please, and finished. In one picture Alex is signing more to Becky who is drawing pictures for him.

Alex still has his trach and will for the foreseeable future. He eats about 2 tablespoons of food each day and gets the rest of his feeding through his tube.

Alex's reflux issues have been our biggest concern. He had been throwing up anywhere from 2-10 times a day, averaging about 4. This past week, we finally decided that we needed to take more drastic steps than the feeding changes (Alex has been on more than 8 formula combinations) and medications that we had been trying. We decided to get a G-J tube, much like the N-J that he had in the NICU.

This new tube goes into the gastric stoma that Alex already has but is long enough to go into his jejunum (upper part of the small intestine). This requires a 20-hour a day drip feed (which we hope to eventually reduce to 16) because the small intestine cannot hold nearly as much food at once as the stomach can. The disadvantage of this is that Alex either needs to stay in one spot, near the backpack holding his feeding pump, or wear the backpack, which at over 1/10 his weight is heavy for him. The advantage is that the food will not come back into the stomach and get thrown up.

Getting the tube placed was highly unpleasant for Alex. He was more frightened than anything, but it also seemed to hurt a little bit. It took 1/2 hour. At first, it seemed to be a great improvement; we had no throw-ups all afternoon and evening. However, he began to throw up mucus that night and bile the next day. He threw up more than 10 times in 24 hours.

We finally took him in on Friday to check the placement of the tube. He remembered his previous day's experience and got very upset as soon as we entered radiology. However, the radiologist quickly and easily determined that the tube was placed properly and told us that some kids do throw up bile for the first few days. We decided to keep it in and are hoping that things will improve soon.

Otherwise, things are going well for the Dimick Eastman household. Becky is teaching part-time, Eric is working very hard for two clients, and Alex is the center of our world.
See Pictures

Alex has been getting up early to watch World Cup games. He was disappointed with the U.S. loss to Germany, but was glad that we surpassed our best showing to date and had a very respectable game with perenial power Germany. We are also cheering for our Turkish friends. In more sports news, Alex watched history as the first sisters ever to hold the top two rankings sqared off in the French Open final. We've been told that the NBA and NHL finished up their seasons, too. Whatever.

Alex had Bronchoscopy/Endoscopy earlier this month. His esophegus looks good and we might go off Zantac. However, the Bronch turned up some cysts on his vocal cords. These will be removed by laser surgery in July.

Becky's sister, Louise, is living with us for the summer. She has been a real godsend.

Becky's parents drove over from Michagan in their Morgan ( See Pictures ).

Alex is now going to feeding clinic, where he sees a GI doctor and a great SLP (Speech and Language Pathologist). He eats apple sauce twice a day with mixed success, but (keep your fingers crossed) hasn't aspirated any of it. He is really good at grabbing the spoon and spreading it around, but since Dr. A. says that it's a good thing and helps him learn to eat he has significant license.

On the respiratory side, Alex is now using a Passy-Muir valve twice a day. This is basically a one-way valve that lets him breathe in through his trach, but makes him breathe out through his normal airway. With the valve on, Alex can make sounds! He usually doesn't, but occasionally we get a coo or a cry. He tolerates the valve for about 15-20 minutes at a time.

As he gets older, Alex is getting more savvy about his equipment. He doesn't like to wear his artificial nose and will take it off seconds after you get it on him. For a while we could use elastic netting to keep it on him, but now he has figured that out.

Alex rolls easily from tummy to back and very occasionally vice versa. He is getting much better at pushing himself up with his hands.

We have made our first social (non-hospital) trips with Alex. Our first trip was a five-mile jaunt to visit Lisa, Greg, and Alyssa (who is younger, and still slightly smaller, than Alex). This was such a success that we took a trip down to Skokie, IL to (great-great) Aunt Helen and Uncle Herb's house for Easter dinner. Then in May we went down to Richmond, IN and Yellow Springs, OH for Louise's graduation, Becky's 5-year reunion and to visit relatives. The week-long trip was great, but after getting back we need a vacation.

There are many pictures in two sets. We haven't had much chance to edit them, but I think I have rotated them all to vertical (for those squeaky wheels who know who they are).
Louise's graduation and the Ohio trip (still mostly of Alex)     Alex pictures Apr. 25
Check out the new movie: Hello Alex(His parents got an iBook and DV Camera)

Alex is now 11 pounds, 8 ounces. He is receiving most of his food continuously, through a pump, but takes a break for 8 hours and has one bolus (a large feeding) in the middle of that block. He still cannot eat anything orally, but his speech therapist feels that he is improving.

Becky stopped pumping a couple of weeks ago. It just got too difficult to pump and take care of Alex at the same time. We are still using breast milk that we saved and froze over the past seven months, and it should last for a few more weeks.

Alex's development has improved by leaps and bounds. He can hold his head on his own and will lift it during tummy time. We think he will roll over any day now. It may be that the only thing stopping him is that he doesn't like being on his stomach.

A few weeks ago, Alex outgrew his trach size, so now we have several smaller trachs that are of no use to him. As a result, Alex's friend, Baby Bear (made by Grandma Laurie), was able to get the tracheotomy he had been needing. Becky was the surgeon, with Grandma Doreen and others assisting. See pictures of Alex and Baby Bear enjoying nose time together.

Alex has caught a few bugs. He's had an infection in his trach twice and also got a cold. However, he is quite healthy now and has been a good sport throughout.

On March 16, Alex aquired a new friend. Alyssa was born to Becky and Eric's friends Lisa and Greg. Alex is pleased to have a friend who is smaller than him (if only by two 1/2 pounds)and looks forward to showing Alyssa the ropes. He took a short trip to meet her about a week ago. See pictures of Becky holding Alex and Greg holding Alyssa.

There are a lot of pictures with this update. We've had many visitors in the past two months, including Grandma Laurie and Grandma Doreen, Aunts Leila and robin, Uncle Bryan and Grandpa John.

New Picture sets:     Alex pictures Mar. 31     Alex pictures Feb. 18

On the development side, he is batting at and occasionally grasping objects.

Other things are also going well. Alex is smiling even more and is starting to bat at objects hanging above him.

Unfortunately, Alex is not making progress in terms of eating. A swallow study showed that he pools his milk before swallowing and aspirates some of it. Even drops put on his pacifier get breathed in rather than swallowed. Therefore, he is not eating orally until his next swallow study.

Otherwise, all is well in the Dimick Eastman household. See new pictures of a huge Alex.

Alex's new passion is a mirror (Thanks S&S). He can stare contentedly into the mirror for an hour or more. We hope he isn't getting too vain.

Alex has been working quite a bit with his feeding therapist and it turns out he is aspirating (breathing in) some of his food when he eats orally. Since it has been happening every time, he is no longer eating orally. He is getting an upper GI and swallow study. Hopefully, those will help us to determine what direction to go in next. The good news is that Alex likes to eat and seems to know what to do. His therapist feels confident that he will eventually learn to eat orally.

Other than the eating, things have been going really well. Alex is smiling a lot more and has begun a new habit of tryin to cram his hands into his mouth. Yesterday was the first time we noticed him sucking his thumb. He is also waving his arms and kicking his feet more and more.

Our second weight check put Alex at 7 pounds, 8 ounces. We were a bit disapointed in this gain. However, he made up for it by the next weight check. Weighing in at 8 pounds, 3 ounces, Alex had gained 11 ounces in 12 days! We are quite pleased.

The most exciting news is that with 50+ degree weather, we decided that Alex could get his first taste of the outdoors. We took a quick walk to the lake and showed him the backyard (see pictures). Alex seemed to tolerate it just fine physically and enjoyed the new scenery.

We make our first visits to Children's since leaving the NICU soon. We look forward to saying hi to some of Alex's nurses and doctors. It will be nice to go there knowing that all three of us will be coming home at the end of the day.

We had our first visit to the pediatrician two days after Alex came home. He had gained weight and now weighs 7 pounds, 2 ounces. We went back to see the pediatrician on call on Sunday because Becky and Eric thought the G-tube site was getting infected, but it was not.

That afternoon, Alex got to see his first Packer game. He cheered hard (see pictures), but it wasn't enough to pull the Packers through. This weekend, however, we expect to see different results.

Otherwise, we are slowly developing a routine. We have had a nurse for a few days these first couple of weeks and will have one 5 days a week for at least the first month. Alex is sleeping much of the night most of the time and eats orally 3-4 times a day (out of eight feedings). He generally eats about a third of the feeding on his own and the rest goes down his tube. Alex checks his email every day(see pictures, ignore the mess on Becky's desk, feel nostalgic if you are one of her coworkers). He loves to look at the computer screen. Apparently he takes after his dad in this matter.

We will almost certainly have a post-holiday update. Until then, we wish a happy and healthy holiday to all. It will certainly be a joyous one in the Dimick Eastman household.

We got home about 9:45 and spent the next 4 1/2 hours arranging all of Alex's equipment, supplies, nursing and paperwork. Then it was finally time to hang out with Alex.

Last night went really well. We even got some sleep.

Check out the pictures to see the beautiful blanket woven by Aunt Sarah and the incredible solid walnut cradle from Grampa Bruce and Great-Grampa Alan.

Bruce and Doreen are here. More Later . . .

Alex got his G-tube on Tuesday. The surgery went according to plan and Alex was getting food through the tube the next day. The plan is for him to come home on Tuesday, Dec. 11! It has been a long, long wait, but the end is definitely in sight.

Alex celebrated his 4-month birthday mostly with his nurses. Eric was able to visit him in the morning before joining Becky at the hospital, where she underwent surgery to have a cyst removed from her fallopian tube. The surgery went well and Becky is ship-shape.

Now, all that needs to happen is for Alex to gain weight. He has been losing since his surgery, which is normal, since he got a lot of water weight at that time and no food for almost two days. However, he needs to turn things around in order to be released from the hospital.

In other news, Alex has been working on his charm skills. He has been learning to smile and does it more and more often (although not on demand). He also made a small noise this week -- some air made it past his trach and through his voice box!

Other than that, we have been working on the eating some. Alex now gets his drip feeds over 1/2 hour (instead of the hour he had been getting since the trach). He has been spitting up a little less over the past few days but that is just coincidence. He also is allowed to wear his artificial nose for 90 minutes twice a day.

Alex should be ready to come home about a week after his surgery. There is really nothing else that we are waiting for. There is a light at the end of the tunnel.

This weekend, Alex got to hang out with more family -- Eric's mother, along with his sister Robin and brother, Bryan, came to visit. Alex charmed them all. Thanksgiving was a great day. Alex got two visits and somehow we managed a Thanksgiving meal in between.

Alex has had some difficulty in feeding. He spits up a good portion of many of his feedings. There is also a possibility that he is aspirating (breathing in) some milk. A chest x-ray showed that his lungs are fine, but it is still a concern. Oral feedings have been discontinued for the day and will begin again tomorrow with 5 ccs three times daily. The current plan involves a long, slow process of learning to eat. There is some concern that Alex will not learn to eat enough food orally for a very long time. If that turns out to be the case, he will probably go home with a feeding tube of some sort. These new developments have us hoping to get Alex home by Christmas.

There are two pieces of good news.

First, Alex has reached 6 pounds! He jumped 90 grams in one day to make this mark.

Second, Alex's hearing was finally tested. He has good hearing in his right ear! Also, there is some response in his left ear. This means that although the outer ear is in the wrong place, the inner workings exist and work, even if just a little bit.

We spent the weekend at the Ronald McDonald house and were able to spend a good amount of time with Alex.

Alex has spent the last few days showing off his skills for Grandma Doreen, who has been visiting for the past several days. Yesterday, he stayed awake for 2 1/2 hours during her visit!

The n-g tube meant that Alex would get food in his stomach for the first time in over a month. We were nervous that he would have some problems. His first feeding was spaced out over two hours and the rest have been over an hour. Alex has done really well with them, and is already getting hungry when it is time for his next feeding!

The best news is yet to come. Alex worked with the speech and feeding therapist on Tuesday. She says he has a great suck and was able to feed him 10 cc's from a bottle! This is excellent for his first feeding session. Hopefully, we can try going to breast later this week. Since Alex takes 45 cc's per feeding, there is a long way to go, but we are encouraged by this development.

See pictures of a tape-free Alex face and his first feeding session.

Alex now has a large tube that leads to his trach to provide warmed, humidified air. This air was also oxygenated until Sunday. Since air no longer goes through his nose, Alex will need it humidified, even after he comes home. He will slowly graduate toward using an artificial nose (a T-shaped filter about the size of my thumb) for a few hours each day, but will always need humidification for the rest of the time. The air is not blown into the trach but just put near it, so Alex is doing all of the work of breathing and he is doing it well.

It is so nice to spend hours at the hospital and not hear him alarm once. He also appears much more comfortable, except when his trach needs suctioning (vacuuming secretions out of the narrow opening).

This weekend, we enjoyed a visit from Sarah and Scott. Alex was much bigger than his Aunt Sarah had remembered. She and Uncle Scott helped to bathe him and then Alex got to be held by his aunt. That evening, Sarah and Scott made Mom and Dad an out-of-this-world dinner and did a little work around the house. We were very thankful for the extra help.

Alex has been receiving some medication for his high blood pressure, which had disappeared for awhile but has returned. He will also get another ultrasound of his kidneys to see is they might be part of the problem.

Now, Alex needs to learn to eat before coming home. This should take about a month. He has been sucking on his pacifier like a maniac for he past two days so we are hopeful that he will do well.

Alex is still on the ventilator and probably will be for a few more days.

See Alex in his pumpkin costume (Becky finished late last night), including booties compliments of his nurse.

Alex is on the ventilator. He is taking many breaths on his own but lets the vent do the work every once in awhile.

So, Alex has been happily snoozing. He has all of his favorite nurses taking care of him, and while he's mostly out of it, we feel their familiar touch is comforting to him during what must be a confusing time.

After working hard to breathe on the cannula for more than two weeks, Alex has run out of energy and the ability to breathe reliably. He had several bradicardic episodes, some which were very severe. So on Friday, he had another bronchoscopy. The camera down his airway showed why Alex was having so much trouble. It is clear in the video (which the doctors showed Becky) that Alex's entire pharynx collapses frequently. Sometimes he is able to get air though when it is open, but sometimes it closes at the wrong time and this causes the problems. Alex also has laryngeal malasia, a flap of tissue that gets in the way of the air once it gets past the pharynx (when it gets that far).

The only way to fix this problem is time and growth. Doctors predict that Alex will outgrow the problems in one to three years. Unfortunately, between now and then, something else has to happen or he will remain in the NICU and continue to have dangerous bradicardic episodes, not to mention discomfort. So, Becky and Eric agreed with the doctors that Alex should have a tracheotomy. A hole will be cut in his neck and will lead to his trachea. He will breathe through a tube put into the hole until his airway strengthens (one-three years). Assuming that all of Alex's respiratory problems are caused by airway obstruction (and therefore solved by the tracheostomy tube), he will only have to learn to feed before he can come home.

The surgery will happen sometime in the first half of next week. In the meantime, Alex was put back on a special CPAP and finally, the ventilator (the machine he was on for the first five days of life). He has just been too exhausted and obstructed to breathe on his own.

In other news, Alex reached five pounds on Friday and continues to make us very proud. He is more adorable than ever and charms his nurses off of their feet.

See the new pictures and updated weight chart.

Currently, the plan is to let Alex grow for about another month. After that, it will be determined whether he needs some type of surgery to help him overcome his airway problems (which are probably due to the smaller jaw). Surgery will most likely be necessary. After it is completed and Alex has recovered, he will probably be ready to come home. We are hoping that this will happen by Christmas.

The last couple of days, our visits with Alex have been wonderful. We got to give him a bath yesterday. It was his first one in an actual tub (he has had sponge baths up to this point). He seemed to enjoy it quite a bit (see pictures). Today, Alex slept some in Eric's arms and practiced breastfeeding with Becky.

Alex has also made great strides with his weight. He continues to post solid gains each day. We had some concerns with his fluid retention, so he was given extra protein and he is looking much less puffy now. The bottom line is that in the last week he has shot past 2 kilos!!! (Becky can get excited about english measurements if she wants). This also means he has doubled his birth weight.

Today he had his longest periods of alert states ever. We looked at each other and held hands for a total of about 2.5 hours this afternoon. (See pictures)

We have a "Care Conference" scheduled for Friday so hopefully we will have a better sense of the plan then. It was scheduled for Wednesday, but aparently reading a calander is not on the medical board exams (one doc showed up on Monday). A Care Conference gets all the doctors, nurse practitioners, and parents and a couple of his nurses together to confer and agree on a plan.

Sunday morning, Alex moved out of his isolette and into a crib! He had been rambunctious all night and his nurses felt he was getting a little too old for his isolette. His temperature will be carefully monitored, but so far he has done well.

Because he was in a crib, Alex had to wear an outfit that is a bit warmer than his Packer one. And because he is still on the CPAP, he couldn't wear his hat. So his nurse put the hat on Alex's stuffed animal (a lamb). Alex must have cheered hard, because the Packers beat the Ravens soundly.

While all of this excitement was happening at the hospital, the Eastman clan painted the nursery. We want to be sure the room is ready for Alex as soon as he is ready to come home!

See new pictures.

The next morning, we got a call from the hospital. Alex had a very rough early morning. His heart rate dropped frequently, he stopped breathing several times, and he needed a lot of help in getting out of these episodes. As a result, he was put back onto the CPAP and given a blood transfusion. In addition, he will not be fed until tomorrow morning (he is getting IV glucose and fluids). At least one of these measures has helped somewhat; Alex had only his regular number of bradys for the rest of the day.

An x-ray of Alex's lungs showed no problem. A possible problem was found in an x-ray of his intestines, but another x-ray a few hours later discounted this. So, we will wait.

There are some new pictures and a movie with Alex looking a little fat. Also I (Eric) forgot to make the set from Sept. 20 available, so that is new too.

Alex now has an n-j feeding tube. This tube goes into his jejunum, part of his upper small intestine. This should help reduce reflux.

Friday, Alex had an eye exam which tested whether his retinas were detaching. This condition is called ROP (retinopathy of prematurity) and can result in blindness. It was determined that while his eyes are a bit underdeveloped because of his age, Alex's retinas are attached. He will be retested in a month to determine other possible eye problems.

This weekend, Alex started having more apnea and bradycardia. He was started back on caffeine and his blood was tested for bacteria. The test came back positive this evening -- Alex has an infection. This is probably the thing we have been the most afraid of since the first week of Alex's life. He does not seem to be showing any symptoms and we credit the medical staff for finding the infection early on. However, it is still a scary time for us.

Alex wanted to say a quick hi to one of his favorite nurses, P.W.

That evening, Alex weighed in at 1580 grams -- 3 lbs., 7.7 oz. He gained 30 grams in one day! He is still doing well on the cannula but bradys and desats with his feeds.

Sunday evening, Alex decided he had had enough with his CPAP. We explained that he would be rid of it on Monday, but Alex would have none of this. He fought preemie to tube combat and won repeatedly. His nurse finally petitioned the doctor for a respite, pointing out that no baby could rest or gain weight while wiggling, flailing, and pulling at tubes. The doctors relented at 10 pm and we could hardly hide our joy at seeing our son on a cannula.

The first hour was rough and Alex had several episodes that night. We fully expected him to be back on the CPAP when we called at 4 am. However, Alex shaped up and is still on the cannula. He is having episodes with his feedings but not at other times.

Alex weighed 1550 grams (3 lbs, 6+oz.) Sunday evening. He is back to being weighed daily. See the weight chart for detailed progress.

This weekend (hopefully his last one on CPAP), Alex is on a different kind of CPAP, since he has gotten so good a wriggling out of the other two kinds. This one has soft, long prongs that go down his nose. It gets taped to his face. He does very well when on it but has already figured out how to get it off, so we will see if this new incarnation lasts the weekend.

Alex's most recent weight was 1490 grams (on the 26th). He has not been weighed since because the CPAP is coming off Monday regardless of weight.

In other news, Alex is eagerly anticipating the game this weekend in which the Pack will surely prevail against the Carolina Panthers.

As always there are new pictures.

Becky finished making Alex's Green Bay Packer hat today, in time for the game. Alex is the Packers' smallest fan and he and his nurse cheered the Pack on. They had a hard time getting reception on the radio so Becky called with a score update. Alex's cheering clearly helped the Pack, as they dominated the Redskins 37 - 0. See pictures of Alex in his hat.

Prior to the game, Alex was weighed. He held steady at 1460 grams. This is not really a disappointment since he has been gaining so much recently, and his exercise routine with the physical therapist probably burned a few calories (gym class can be tough!).

Today he only had four bradys. This is a fraction of what he was having just a few days ago.

The concern about weight gain caused Alex's medical team to make some changes. He is no longer allowed to breast feed, as this takes too much energy (he is still going to dry breast). And Becky now separates her milk into two parts. A mother's milk gets fattier as time goes on in each breast feeding session. So, Becky saves the first milk that she pumps separately from the rest, and Alex gets the fattier portion.

These strategies seem to have worked. Alex weighed in at 1410 grams this evening! That's 3 lbs, 1oz. We had a three-pound celebration.

See the newly updated weight chart and, as always, new pictures.

Speaking of weight, Alex is now 1315 grams. He gained 5 grams between Monday and Wednesday. This is a very small weight gain but we have been encouraged to look at weekly results as a better indicator. Week-over-week we gained 80g which is low but acceptable. 1315 grams is 2 lbs, 14.4 oz. We are looking forward to the 3 lb mark.

On Tuesday, Becky was allowed to start real breast feeding. She still had to pump a bit beforehand so that Alex wouldn't get too big a mouthful. He is still learning to latch on, which is difficult to do with his tiny mouth. He did get one nutritive suck (in which milk came out) and then got tired and fell asleep. This was to be expected and we had already planned to feed him through his tube afterward.

Last night, Eric came home. We went straight from the airport to the hospital. Alex was glad to see his father and excited to show off his new skills. He did much better with breast feeding. He probably got two or three nutritive sucks and many non-nutritive ones. He did brady a few minutes later.

It has been wonderful to begin breast feeding although for now it actually means more pumping -- Becky has to pump both before and after each session.

Alex continues to show a personality -- he responds well to touch. He also is quick to advertise when he is upset. He loves to flail at the unlucky person who is putting on his CPAP. And sometimes he just wiggles and stretches happily.

See pictures of Becky giving Alex a bath.

Becky gave him a bath and has been giving him "Dry Breast". Becky pumps first and then lets him try to latch on and maybe get a little taste but nothing he needs to swallow.

He will get weighed again tonight. Just because enemy #1 (the CPAP) is gone doesn't mean he is any more cooperative. He is still giving the nurses a hard time. Especially about getting his diaper changed promptly.

I am down in OH at my cousin Ben's wedding, but am thinking about the little guy a lot.

We watched him for awhile and then went to take our infant CPR class. After our return, Becky held Alex for about 1 1/2 hours. Unfortunately, Alex had a few desats and bradys during that time and was fussy. After he returned to his isolette, his nurse let him go without the CPAP or the cannula for about 20 minutes. He didn't have a single desat or brady during this time.

Then, Alex got weighed and was 1235 grams. That is 15 grams more than last time and is 2 lbs., 11.5 oz. We were hoping for more but are pleased that he is continuing to gain weight.

See pictures of Alex charming his parents and, as will be appreciated by Becky's coworkers, wearing red on Wednesday.

In the morning, he had a bath.

Then, he got held by his mom for two hours (see pictures).

Right after that, Alex had his first physical therapy session. He was put into different positions and his reactions were noted. He was able to keep his airway open in every position except on his back with his head not turned. The therapists thought that this was very good. They also put Alex through many exercises, generally in groups of ten. For example, he did ten head turns (with a good deal of help. He can turn his head by himself, but not on demand). It was found that some of the muscles on the left side of his neck are weaker than those on the right, so the therapists will be working with him three times a week to help strengthen them and to continue the exercises.

After a nap, Alex made his dad a birthday present -- footprints and hand prints (see picture). He also, through a liaison, got his dad some chocolates.

Finally, this evening, Alex got weighed. Even with all of that exercise, he weighs 2 lbs, 11 oz.!

Despite the excitement of the day, Alex only had two brady/apnea episodes. This is excellent news. He did desat (have low oxygen levels in his blood) several times, but fixed them all by himself.

Alex's breathing troubles have improved. He is still having apnea and bradycardia, but not as frequently as he previously did. However, he still has on the CPAP and it doesn't seem that he'll lose it any time soon.

Alex has one fewer tube to deal with -- his picc line iv has been removed! We celebrated this along with his one month birthday on Friday.

See pictures of Alex in new clothing and without his iv.

Today he was taken into the operating room for a minor procedure in which a tiny camera was put down his nose to look at his trachea to look for anything that might be blocking his airway and causing his apnea. It was found that his tongue periodically falls back and blocks his airway. This is probably due to his small jaw. We will be discussing solutions Thursday. As with most things, he should outgrow the problem as his entire body gets bigger.

Alex is getting more fiesty -- he has learned to pull his CPAP off of his nose. This CPAP is a new design -- a little triangular mask to cover his nose. It seems to be less abrasive tothe nose. However, he is very good at breaking the seal of the mask and has tried the patience of the nurses and his parents (go Alex!).

Alex is eating 18 cc's of breast milk every three hours. This is full nutrition, so he no longer has nutrients coming in through his iv. The milk will soon be fortified with extra calories. This increase in food has resulted in more reflux, but he is otherwise doing well with eating and hasn't had a feeding held in days.

Spells of apnea (stopping breathing) and bradycardia (low heart rate) began to increase in severity this past week. Thursday night, the spells required a good deal of intervention. This could be due to a number of things: reflux, infection, jaw size (see below) or blood and mucus clots due to the CPAP. So, Alex was taken off the CPAP and put on antibiotics. Friday evening, he received his first blood transfusion. His blood count had been getting low and it was thought that this boost might help with he breathing.

Also on Thursday, an ear, nose, and throat specialist confirmed that Alex has no ear canal in his left ear. His right ear appears normal and will be tested to see if he can hear with it in the near future. The specialist also determined that his lower jaw is proportionally too small. This may be causing his tongue to be getting in the way of his breathing.

From Friday afternoon on, Alex seemed to be much improved. He is off the CPAP earlier than anticipated, but it seems to be working well and his nose is much happier. The antibiotics will require that the picc line iv remain longer than we had hoped, but it could come out as early as tomorrow.

We just got a call from his attending resident. Alex has been spitting up some more and having more apneas and bradycardias (or "A and B"s). They have put him back on the CPAP and IV fluids for tonight and will re-assess in the morning.

We greatly appreciate the support that we have been getting from everyone. Thank you. Don't forget to look at new, cute pictures and movie.

Alex was weighed this evening and weighs 1,040 grams! (2 lbs. 5 oz. for the non-scientists in the audience.) He has now passed his birthweight.

Another milestone reached today was that Alex wore his first clothing, a shirt given to him by his Aunt Sarah. He is particularly adorable in it -- see pictures.

On Saturday evening, Alex reached his original birth weight. Also on Saturday, Alex got a new hat because he outgrew his old one. His feedings have been steadily increased and are currently at 10 cc's every three hours; this should help him continue to gain weight.

Alex is still on the CPAP and will be for awhile. His nose has gotten very sore from it, so he has been getting breaks from the CPAP. When not on it, he has a nasal cannula -- a smaller tube that blows some air into the nose but does not exert nearly the pressure of the CPAP. The cannula cannot yet be used long-term because Alex's cartilage in the rib cage isn't strong enough.

Alex's heart rate is still high but his blood pressure was at normal levels all day.

Alex was very restful today and hardly even cried when he was taken out of his isolette to be held. This worried Becky because he always cries at this time (of course, she worries when he cries, too). He was very calm throughout the Kangaroo care. Becky was reassured that Alex still had his feistiness when the nurse was suctioning his nose. He grabbed the tube and pulled it right out!

Becky got to hold Alex, change a diaper, and take his temperature today. See pictures of Alex resting.

Alex's blood pressure continues to be a concern but he will probably grow out of it. He is being given more medication for it. His heart rate is still high as well.

We are learning more about how to get involved in Alex's care. Becky took his temperature and we changed our first diaper (with some help from the nurse).

After being held by Eric for about an hour, Alex was weighed. He weighs 891 grams. He was 990 at birth and 840 a week ago. So, he has gained back 1/3 of the lost weight. His feedings started to increase in size today and he seems to be doing well with them, so he should be on his way to gaining even more weight.

For once, we made an entire visit without taking any pictures.

If you would like to email Alex, his address is: alexdeastman@yahoo.com We have not yet figured out a way to get a computer into his isolette but Mom and Dad make good secretaries and Alex would love to hear from you.

Alex looked like he was doing very well this weekend. He is still feisty -- he likes to kick and has a new hobby of trying to keep his eyes open as much as possible. However, he seems to be resting better. And, after a short stint, he is back off of the bilirubin lights.

A more thorough look at Alex's ultrasound has shown a problem with his kidneys. One is bigger than the other. This is not necessarily abnormal in preemies and will probably even out with no long-term consequences. However, it may be related to high blood pressure and elevated heart rate. Alex has both and is taking medicine to lower the blood pressure. His first dose of this medicine was on Saturday and seemed to help somewhat.

Alex is feeding about once every three hours but has had to miss at least two feedings a day because he does not always digest the previous one. We have been told that this is normal and that he is actually tolerating his feedings well.

There are, of course, new pictures and a new video. We think he gets cuter every day. See the blanket our friend Elly wove for him. Some of the pictures are without the CPAP (the thing that puts air into his nose). He still needs the CPAP but does not like it so his night nurse had it off of him for a few minutes. No pig jokes, please. They promise us that the upturned nose will go back to normal after he is off of the CPAP for a few days.

Eric and Becky have alternated days of Kangaroo Care. This has been a wonderful experience.

Alex weighed 1 lb 14 oz after a week of life. Some weight loss is normal, since he really is only getting nutrients. However, this loss (5 oz) is toward the high side of the normal range. He is looking thinner. Hopefully, the feedings can be increased in volume soon. This will not happen until he digests more.

Alex has been off the repirator since Tuesday. He is still using a CPAP (Continuous Positive Airway Pressure). Those are the tubes you see in some pictures going to his nose (and pushing it up). It is constantly blowing into his nose and keeping his lungs from colapsing. Unfortunately it also ends up getting air into his tummy. He can breathe without it for short periods but it takes more effort (see movie).

Good picture of CPAP

Thursday evening, Alex was put back under the bilirubin lights. His count is back up. We had been told that this would probably happen.

See new pictures and new movie

Alex received his first breastmilk in the morning. A very small amount (2.5 cc) was pumped into his stomach. Tests showed that he digested it and he was given a second dose a few hours later.

At noon, an ultrasound of Alex's head, kidneys, and heart was done. All were found to be normal. This was a big relief for us because bleeding in the brain is not uncommon for premies. He will be given this ultrasound periodically.

Becky was released from the hospital early that afternoon. She will be on oral antibiotics for over a week but is feeling much better.

Eric and Becky both got to hold Alex for the first time later that afternoon (check out the pictures). We did what they call Kangaroo Care. Alex was placed on our bare chests for skin to skin contact. This allows Alex to hear the heartbeat and to feel more like he is in the womb. It was an incredible experience. The exchange from isolette to Mom/Dad was difficult for him and we heard him cry for the first time. Eric likens the sound to the bleeting of a goat and, admittedly, that is how it sounds. But it's still cute. Anyway, he calmed down and fell asleep soon after being held.

They will be taking Alex off the respirator today. Keep your fingers crossed. They often have to go back on after a while to rest.

Becky is doing well. She has not had a fever for 40 hours so she will probably be coming home tomorrow.

3 more pictures. Kelley is our Nurse Practitioner and is awesome. The whole staff at the hospital has been so great, highly competant and comforting.

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