Raffle Time

On November 15th, a drawing was held to win a quilt handmade by Aidyn's grandmother, Eileen Stephany, and her good friend. Alyssa got to pick the winning ticket. A lucky resident of Sierra Vista, Arizona won the quilt.

We are very grateful for the fundraising quilt raffle held for Aidyn's medical benefit. Thanks to the exposure in the Sierra Vista Herald, many, many people purchased tickets in multiple quantities, making the raffle a great success. It raised just over $5000, which will help to pay out-of-network costs for Children's Hospital Boston. We are still waiting for the results of the appeal to the insurance company over Aidyn's medical care costs in Boston. If it doesn't go through and all efforts are exhausted, we will need more fundraisers to help with the costs.

Posing with the quilt.

Enjoying Grandma.

A Quick Boston Trip

It’s been awhile since we've updated, but that’s because we've been busy just living life with our family. Aidyn, at 7 months old now, continues to make great progress.
On November 10th, at his monthly G.I. visit in Phoenix, Aidyn weighed 13.8 lbs and 24.5 inches long. He is 97% in proportion with his weight and height, almost perfect. The nutritionist and G.I. doctor are both very pleased with how quickly Aidyn is making his improvements. Despite not increasing the PN volume when the nutritionist wanted, Aidyn continued to grow at a good rate (he went from 7 – 8 diaper changes a day to 3 – 4, a few weeks after the re-connection surgery.) There was some confusion as to which doctors would place the PN orders. After talking with the G.I. doctor in Boston, the AZ doctor now has control over PN changes with the home health pharmacy while Boston will be in charge of the Omegaven. Anyway, the conclusion is Aidyn must be absorbing his formula feeds and adapting. Aidyn is at 40cc’s for his six feedings. It will increase by 5cc’s each week as he tolerates them. Also, since Aidyn has progressed with great strides, he has been given the go ahead to start solids!

The G.I. doctor said since our goal is to have Aidyn come off TPN, baby food will not cut it. He is sampling Nutra Neocate, which is an amino acid based food. It has the calories and nutrients Aidyn will need in addition to the formula. It comes in powder form and is mixed with water to the desired consistency. After a week, Aidyn is doing a great job. He’s eager for each bite. We will slowly go from 1 feeding to 3 feedings a day. When we return to the doctor in a month, the doctor will talk about adding baby foods for flavor and tolerance. But, the Boston team has a slightly different idea.

We just had our CAIR appointment yesterday in Boston and are flying back to Arizona as I type. Joseph stayed behind this time because we can’t afford for him to take too many days off work. Dr. Puder wasn’t in clinic but his nurses were. They are very happy with Aidyn’s growth, as is the rest of the team. Everyone made the comment of what a big boy Aidyn has become. And, of course, Aidyn brought along his charm. Aidyn weighed 14 lbs 4 oz. At his corrected age of 5 ½ months, Aidyn is now on the 10% percentile for both weight and height. His head circumference is at the 50%. He continues to take oral iron, ursodiol (for bile production) and Lovenox (blood thinner, maintenance dose). His copper and ceruloplasmin levels were low according to last month’s labs, so the trace minerals may be adjusted depending on his labs drawn yesterday. As mentioned before, Aidyn has started solids. The Boston dietician feels Aidyn should start with rice cereal for a couple weeks, then onto fruit and veggie baby food, 2 – 3 teaspoons a day. She said it was fine to have Aidyn on the Nutra Neocate, but only to supplement. He needs to hold his own without formula as his main source of food, and we agree. The best part of the appointment was talk of cycling down the TPN more. The plan is to go from 21 hours to 18 hours a day of TPN and also drop to 6 days a week (with saline on the 7th day). It was very exciting news. The nurse will talk with the AZ doctor today about changing the PN order. Hopefully there will not be any resistance. If all goes well, Aidyn will start his new regimen next Thursday. Right now, Aidyn comes of TPN early evening, but we will switch to mornings so we can utilize his off time more constructively. It won’t be long before Aidyn is only on TPN for 12 hours a day. Yay!

Early Intervention services finally start next Tuesday, as will physical therapy. Those services will help Aidyn on track with his physical developments. He is getting better with tummy time and sitting up with his arms. We are waiting to hear back from Arizona Long Term Care to see if Aidyn qualifies for state financial aid. It will greatly help with the costs. We are appealing the insurance a second time since they have denied all CAIR team visits and the initial hospital stay in Boston. The insurance says since the Omegaven treatment is investigational, they won’t pay. Oddly, they have paid for his central line replacement and reconnection surgeries in Boston. It is obvious Aidyn has a medical need for the short bowel visits in Boston and we will go to the next level if the appeal doesn’t work again. There are over $19,000 due for the hospital stay and thousands more for the CAIR visits and labs. We are hoping this appeal sticks.

We did have a scare last Thursday. During a routine dressing change with the home health nurse, Aidyn’s central line was cut. I had been doing the actual dressing changes for the last few weeks while the nurse kept Aidyn still and assisted in handing me things. This time, I was having a hard time getting the tape off of the dressing where the line comes out from underneath. The nurse suggested her scissors. I asked her to do the cutting since she’s the experienced one in that area. Well, she proceeded to cut off the tape, the line moved (because Aidyn moved) and “snip.” I hear, “I can’t believe I just did that, I am so sorry.” With fear and disbelief, I ran for the clamp. Blood was coming through the line when I got back to Aidyn. After clamping the remaining line, I cleaned the site, put on a new dressing (I didn’t wait for it to dry) and got Aidyn ready for the ER. Alyssa was home from school that day because of the sniffles, so she came, too. I made her wear a mask the whole time. Her immune system is a bit compromised with gluten sensitivity, and with all the flu going around, that was the last thing we needed. Joseph was an hour away at work and feeling anxious and perplexed since he couldn’t be of immediate help. But he was helpful to me because I needed to hear his voice over the phone through my anxiety. We waited over two hours at the nearest ER (Banner Desert, the same hospital Aidyn was born) before the surgeon finally came to repair Aidyn’s line. Luckily, the line did not clot off. We were able to flush it and hook him back up to his TPN. It was ridiculous how long we waited and they didn’t even want to put a clean dressing on despite the moisture that was still underneath. Next time we will drive the 25 minutes to Phoenix Children’s Hospital to go to the ER. So now, Joseph and I decided we will do all Aidyn’s dressing changes. As a matter of fact, the Sunday prior to the mishap, we both changed Aidyn’s dressing ourselves because we were finally confident we could do it on our own. It’s too bad we didn’t just stop the nurse visits. I still thought I should continue to do the dressing changes with the nurse until she was comfortable with Joseph and me doing it on our own. Oh well. While changing the dressing last Sunday, Joseph and I found it a challenge to position the line under the dressing because it has a permanent sheath over the repaired area. But, between the two of us, we will figure it out.

We are looking forward to Aidyn’s food intake and hope he continues to tolerate his feeds as well as he is. Here are some pictures to enjoy!

At Alyssa's Birthday party at the park.

He loves to laugh.

With Grandpa and his wife.

Waiting in the car.

Sibling love.

Doing well at home

Seeing as Aidyn had been tolerating his feeds well and having no problem with bowel movements, he was discharged from Children’s Hospital Boston on September 26th. Upon discharge, Aidyn weighed in at 11.3 lbs (we tend to go by the pediatrician scale at home). His labs indicated his bilirubin levels were normal: total was 1.0 and direct was .3!

To celebrate, we had dinner at Applebee’s down the street from the host family’s home. Joey’s good friend flew out from Indiana a few days prior for support and to meet Aidyn for the first time. He joined us along with my brother, Bert, who lives in Boston. We had a nice time and Aidyn enjoyed looking at all the people and decorations.

Taking in the scenery.

The following day, we flew home to Arizona. Aidyn was a perfect baby in flight. He slept most of the 5 hour and 45 minute trip. Thank goodness for non-stop flights. We have since settled back in to the swing of things at home. Alyssa was a thoughtful sister and bought Aidyn a pooh-bear, a book and interactive nursery rhyme book with a gift card she received. She’s transformed into a happy big sister instead of a worried and resentful one. It helps that she has wonderful grandparents that come and stay with her while we go to Boston. She has been through a lot emotionally and has handled herself better than we expected.

Last Tuesday I increased Aidyn’s feeds back up to 20cc’s per feeding and it seems his bowels are slowing down a bit, a good sign. To my surprise, Dr. Puder gave us a call this morning to check on Aidyn’s progress. This man is always thinking of his patients and never sleeps! He’s amazing!
Yesterday we had our first visit from the new home health agency. I am pleased with the nurse’s professionalism and her nursing skill. I don’t normally do the central line dressing changes myself, but I did yesterday with the nurse’s guidance. She likes to be sure the parents can do them and was happy with how well I did. I told her I wouldn’t mind if she did them most of the time since I was happy with how diligent she was using sterile techniques. Aidyn weighed 11 lbs 8 ounces and his vitals were all good. The nurse was pleased with Aidyn’s surgical incision. She commented that he’ll have very little scarring…thanks to Dr. Puder.

Early Intervention will be starting services next week to help Aidyn catch up to the developmental level of his corrected age. They feel he should receive services because he has been through so much but he should catch up with no problem. We’ll work on tummy time and other therapies to increase his upper body tone. This will help him achieve better tracking, the ability to sit using his arms and adaptive development.

Since being back home, we’ve noticed how much more comfortable Aidyn is along with better, quality sleep. I hadn’t realized how bothersome the ostomy was for him. It’s so nice to hold Aidyn without limitations. Cuddles are much more fun now. Aidyn seems happier, too.

Waiting to be discharged

We are on day 4 in the at Children’s Hospital Boston. We hope Aidyn will be discharged tomorrow so we can all fly home together on Sunday. Aidyn’s recovery from surgery is amazing. He was on morphine for less than 24 hours and had 3 doses of Tylenol afterward. Yesterday he was starting to be his old self. Not very many smiles, but very curious and awake.

He also started feeds yesterday. He started off with 6 cc’s of unflavored Pedialyte every three hours. Aidyn wasn’t thrilled about the taste. So, at his second feeding , he had grape flavor. Much better. At the fourth feeding, it was changed to Elecare formula. Aidyn sucked it down quick. After a couple Elecare feedings, the amount was increased to 9cc’s. He slept well during the night, despite waking him up to feed. By morning, the doctors agreed to increase the amount, again, to 12 cc’s. This time, he would have 12 cc’s 6 times a day, in order to build up to the 20 cc’s he was having before the surgery. He may not get to 20 cc’s a feeding before discharge, so I will continue to do that at home, as long as he tolerates it the way as he has been doing. Once Aidyn gets up to 20cc’s, we will increase the feeds by 5cc’s weekly and keep in touch with the dietician each week.

Aidyn did have a couple bouts of crying yesterday evening, probably due to cramping or gas. Dr. Puder said it’s like having a bowel movement through a straw. The colon needs to stretch out. Since then, Aidyn’s cries seem to only be related to diaper rash. We are putting a thick barrier on his bottom until his skin gets used to it. He’s doing very well with his bowel movements.

Dr. Puder wasn’t in today, but has been calling in to see how Aidyn’s doing. We are proud of Aidyn. The nurses enjoy having Aidyn as their patient and the doctors are happy with Aidyn’s progress.

We're back in Boston

It’s follow up time already with Dr. Puder and the CAIR clinic. We flew in to Boston Wednesday, September 16th.

Aidyn's always a good baby while flying.

The CAIR appointment was on Thursday. The team was very pleased and excited to see how well Aidyn looked and had grown. He weighed in at 11 pounds 6 ounces. His corrected age put him on the growth chart between 3% - 5% babies his age! And his head put him at 50%. Labs were done with normal results. His dressing to his central line was changed due to some seeping from the skin. It appears he had some sort of allergy to the dressing or the skin disinfectant used when he was in Phoenix Children’s hospital.

Friday was pre-op day. We finalized signatures for anesthesia, finance and had vitals done. This was all for Aidyn’s upcoming surgery he had today.

Waiting for the train to the hospital.

The end of a long day, and still happy.

I changed Aidyn’s ostomy bag one last time yesterday evening. At least I tried. I had to change it again right after I did it. I kept thinking, "Just one more day."

Today, Aidyn did well during surgery to reconnect his small and large intestines. Dr. Puder found the end of colon and took down the stoma. Dr. Puder had to remove a small bit of colon because it was closed and blocked. Since Aidyn’s small intestine is short, he will have watery stools. Dr. Puder checked Aidyn's liver while he had the chance. It was still dark, but soft. A good sign there's no scarring. In time, it should return to a pink color. We have a good feeling Aidyn will recover from surgery nicely. His pain is being managed by morphine or Tylenol and he's resting well for the most part.

In recovery, trying to suck his fingers.

What a big milestone for Aidyn. We hope this reconnection will help his small bowel to adapt better.

Back at Home

Aidyn is 4 1/2 months old already?! That’s right. Aidyn is going to be 5 months old mid September.

After coming home from Boston August 2nd, we’ve been busy with appointments, insurance phone calls, bills and daily life. I would never have thought I’d be away from my family for so long. Alyssa has been getting used to having both me and Aidyn back at home. She wasn’t sure how to act around Aidyn at first, but now, she’s right there giving him his pacifier when he cries.He loves Alyssa. You can tell by the way he looks at her and babbles to her. He's right at home. His development is getting better. Socially, he's probably ahead of most babies, very friendly. He's finally grabbing things and putting them in his mouth. His neck control is very good and has alwasys been since he was a couple months old. He can't roll over yet or push himself up due to lack of tummy time. Once the ostomy is gone (Sept. 21st) I think he will catch up quickly. We are still going to use Early Intervention Services. His first appoitnment is this Thursday.

Aidyn has finally had his follow up doctor appointments since his birth in Arizona. He’s seen the pediatrician three times. His initial appointment with Dr. Wallace he weighed 9.4 lbs, the second 9.10 lbs and the third he was 10.6 lbs., and that was a week ago yesterday. Almost 3 weeks ago, Aidyn had his first appointment with the Pediatric GI, recommended by the doctors at Children’s Hospital Boston. Dr. Ursea has had one patient treated with Omegaven and is familiar with the protocol Boston has with Omegaven. For now, the Boston CAIR (Center for Advanced Intestinal Rehabilitation) team will be the main manager of Aidyn’s care, but in working with Dr. Ursea. We followed up with Hematology, also. Dr. Shaw feels Aidyn may not need to be on Lovenox anymore, but will discuss it with his colleagues. For now, he continues the low dose of Lovenox injections twice a day. We will follow up with the Cardiologist on the 12th and hopefully we’ll learn that Aidyn’s hole in his heart is closed. On August 18th, we had labs drawn and learned Aidyn’s direct bilirubin is at 1.1. Aidyn continues to do so well. This past Friday, Aidyn had a consultation with Dr, Notrica, a surgeon recommended by Boston as well. He actually knows Dr. Jaksic, one of the Boston surgeons. We liked him a lot. He is impressed with the positive results children have been getting with the Omegaven treatment. He agreed to take Aidyn on if we are in need of a surgeon in Arizona.

Well, that last appointment brought us to where we are now, Phoenix Children’s Hospital. While having vitals taken before the appointment with Dr. Notrica, his temperature read 99.4. That normally is not a fever for concern, but while on Omegaven it is. After calling Danielle in Boston, we were told to get labs done and head to the ER if Aidyn’s fever climbed or there were abnormal lab results. After the appointment, we strolled over to the GI office to get labs ordered and had them done in the office through Sonora Labs. Poor Aidyn had been stuck a few times before the IV team technician ended up dripping the blood into vials. (I want to add, while waiting for the order, the GI nurse retook Aidyn’s temperature, and it was normal.) Sonora said we wouldn’t hear back until probably Monday, unless results were abnormal. In that case the GI doctor would be called. Well, we heard nothing during the weekend and Aidyn behaved and looked healthy as normal, with no fevers. We got a surprise call from Alexis in Boston. She was double checking to see if we were in the hospital getting antibiotics started. What!? She happened to go in the office on the weekend and saw the fax. It read GRAM POSITIVE COCCI IN CLUSTERS. How did we not get a phone call? Thank God for Boston. Turns out the lab never called the doctor here.

It was madness getting packed for the hospital, diaper bag, TPN supplies, Omegaven, phone numbers…we came to Phoenix Children’s Hospital Sunday evening and by 9:30 p.m. we had a room. Antibiotics were started after getting another blood drawn from the central line. Luckily, we had no problems using Omegaven in the hospital. As a matter of fact, the staff was curious about it and Aidyn’s story. Aidyn is doing his work around here wowing doctors and nurses of his good health. I credit Omegaven. Hopefully someone around here will want to learn more about it and get it here. The good news, we will be going home this evening after receiving the last dose of antibiotics. The culture here at the hospital was negative and the culture from Friday has been identified as a negative staph bacterium, most likely a contaminant from Aidyn’s skin. Finishing the dose of antibiotic is for safe measure even though Aidyn has been great the entire two days here. I’m looking forward to going home. Hope we never come back here.

New Central Line

Aidyn now has a new central line. I always thought if he got a new central line it would be because of a line infection... not because of the line creeping out. We'll never know how it happened, but it sure makes me more paranoid about handling it.

Aidyn did very well in surgery. He was an add on so we had to wait more than a day in the hospital. Poor Aidyn was hungry and I was tired. Thursday afternoon Aidyn was in surgery. The surgeon spent 45 minutes just accessing a branch off of larger vein in order to avoid using a large vein. It would have been much faster and easier, but it meant a large vein wouldn't be compromised. I waited for 2 hours, but luckily I had company. Aidyn's Early Intervention therapist came for support, and she even missed dinner at home to stay with Aidyn post recovery so I could grab dinner. She was so nice. I am very proud of how well Aidyn has recovered. He wasn't even given pain medication afterward. We went home Friday early afternoon.

The dietian has given Aidyn the go ahead to increase feeds a little. He now gets 20 cc's twice a day and 15 cc's four times a day. Hopefully his output won't increase too much. Oh, and Aidyn weighed 3.9 kg, or 8.58 lbs. He's growing well. His PN volume has now gone up, too. Way to go Aidyn!

Good News, Bad News

Ok, I'll start with the bad first. Instead of just coming to the hospital for our weekly clinic visit today, Aidyn ended up being admitted into the hospital. This morning, I noticed his central line site under the dressing was leaking a little Omegaven. I phoned the nurse for a heads up so that when we got to our appointment, whoever needed to see it would be notified. Well, the PN nurse suspected Aidyn's line was leaking from a break in the line somewhere under his chest, and a Fellow surgeon thought it could also be a clot stuck in there. If it's just a clot, a solution could be flushed in to clear it and we'd go home. If it's a break, the line would have to be replaced and Aidyn would spend the night in the hospital. Well, he got admitted and had an x-ray done, Turns out the line had moved. The tip of the line should be near the heart, but it was in his neck. So, that means surgery. An IV was started to get fluids in him, but not before a failed attempts. We have the surgery sometime tomorrow, he'll be squeezed in.

For the good news. Aidyn's direct bilirubin went down to 2.3! Dr. Puder said we can go home!! Joey already bought his ticket for the end of the month, so we'll stay here until Aug. 2nd. It'll give us time to get Home Health set up in Arizona among other things. Yay!

Captured Smile

Aidyn does not seem to be behind in his developments despite being born early and spending 5 weeks in the NICU. He smiles, makes deliberate conversation, reaches out for things, can keep his head up, likes tummy time (his favorite way to sleep), makes eye contact with pretty much anyone who talks to him, and more I can't think of. It could be because he gets most of my attention since I'm not resposible for anyone but him and myself right now. By the time we head back home, it looks like he'll be where he needs to be, but we'll still utilize Early Intervention to be safe. Here are some pictures taken yesterday.

As you can see, he loves books. He is usually vocal as I read to him.

He worked on his aim a couple days ago.

Aidyn will have his next appointment tomorrow with Danielle and Alexis. We're hoping his bilirubin levels make another nice jump. Pray that Aidyn won't have to be stuck more than once for his blood draw. He has inherited thin veins from me, ugh. Oh, I am so happy to say that Joey will be coming for a visit the end of the month! It will be two months since we have seen each other in person (we have Skyped, which helps a lot). Aidyn recognizes Joey's voice over the phone and the internet, so I know he will be happy to see his Daddy. Stay tuned for tomorrow's update.

Latest appointments

Aidyn turned 3 months old (or 13 weeks, 7 weeks corrected) on Tuesday. Aidyn is continuing to progress well. Last week he had his CAIR clinic appointment. He weighed in at 7.7 pounds. Several things took place during the appointment. Aidyn was observed being cycled off the TPN for two hours. Initially he was to be observed for one hour, but it turned into two when he needed both a dressing change and ostomy bag change. His blood sugar was tested a half hour after being off TPN and again at an hour off. He did well, so he now cycles off for two hours a day. Aidyn also got his vaccines updated in clinic, four of them. He was exhausted after this appointment. His labs from this appointment showed steady progression. His total was 6.9 and his direct was 4.5. His liver enzymes are still on the high side, but it will come down as the bilirubin comes down. Dr. Puder suggested we wait until Aidyn comes back for his first two month follow up to be reconnected. It will give his liver time to completely normalize and he'll have a smoother recovery. We were a little disappointed to learn we have to wait a few months, but we understand.

He's found his thumb. 7-10-09

Yesterday, Aidyn had his clinic appointment at Dr. Puder's office. He weighed 7.9 pounds. Danielle, the nurse, is very impressed with how good Aidyn is looking. She said Aidyn's gaining weight nicely and is doing very well overall. We decided we would skip the CAIR clinic next week since it is very full and do a regular visit at Dr. Puder's office. We'll have his CAIR clinic appointment the last Thursday of July, when Joey will be here. Well, I saved the best for last. Aidyn's labs came back very well this week. The total bilirubin is 5.3 and the direct is 3.2! A nice jump! We're keeping our fingers crossed that Aidyn and I will get to go home by the end of the month.

Supposed to be napping. 7-11-09

A little improvement

This week's appointment was with Dr. Puder's clinic. Aidyn gained a little weight and length. He's at 7.63 lbs and 20 1/4 inches. We're stll going to keep his oral feeds the same. We will address the weaning of TPN next week with the CAIR team, so he will still get the PN over 24 hours a day. Dr. Puder would like to get Aidyn's vaccines upto date now that his bilirubin levels are going down. He received the Rotovirus vaccine in the office. It is an oral vaccine and Aidyn drank it like a pro. He'll recieve more vaccines next week. Finally the lab results. The levels went down, but not by much. The total bilirubin is now at 7.6, while the direct is at 4.7. We were slightly disappointed it wasn't less than that, but are grateful that it is still going down.

Aidyn's color and eyes continue to improve. Dr. Puder and the nurses are impressed with Aidyn's activity level.

Good News

I forgot to mention Aidyn's lab results. His total bilirubin is 7.9 and the direct is 4.9! Just 2.9 more points down to go for the direct bilirubin! Aidyn's red blood count is up, meaning he's making new red blood cells. He's absorbing his iron supplement well, so his iron level is great. All other areas are also good. We tested his thyroid since his newborn screening in AZ resulted in abnormal results. His thyroid levels tested normal. We're hoping Aidyn's direct bilirubin will reduce to 2 in the next couple of weeks. Aidyn's skin and eyes are looking better each day. His behavior is that of a typical baby as well. All good things.

Second CAIR appointment

Yesterday was Aidyn’s 2nd CAIR clinic appointment. We discussed Aidyn’s growth rate and his weaning from the TPN for an additional hour.

Aidyn weighed 3.39 kg (7.5 lbs) and measured 20 inches. Good growth, but not at a rate the team is wanting. He is not going up the growth chart like before. It’s unsure what Aidyn may be losing from his output, so the dietician will be adding more nutrients and calories to the TPN starting next week. Hopefully, this will get him back on track. We will keep the feedings the same, 15cc’s of breast milk 5 – 6 times a day.

For about a week, Aidyn had been off his TPN for one hour. He was fed a bottle 20 – 30 minutes before being unhooked. He seemed to do ok, but it was hard to tell. The time he was taken off is usually a time he naps, so his slight irritability and sleepiness looked like he was just tired. However, there were a few days where Aidyn appeared scared and a little shaky. Yesterday, I was able to really observe Aidyn off TPN with better judgment because he had a 3 – 4 hour nap right before being unhooked. Well, after a half hour, Aidyn started to act agitated and his hands were a bit shaky. With a pacifier, he was better, but wanted to either sleep or just look off into space (he is usually curious, looking around when awake). Today I talked with the PN nurse, Denise, and she suggested we put Aidyn back on the TPN for the 24 hours until we come to the Wednesday appointment next week. We will look into testing his blood sugar while he’s off TPN. We’ll take baby steps.

Wednesday, Aidyn smiled at me for the first time! Not a gassy one, a real one. It’s funny, I wasn’t the first to receive his smile, his bear was. It’s been with him since he was in the NICU in Arizona. He’s like a little angel watching over him. Aidyn is enjoying the play gym I got for him. In just a couple days, he figured out how to move the dangling toys. I’m very proud of him.

Thanks again everyone for all the positive thoughts, prayers and support. It keeps Aidyn and the family strong.

ER visit

Happy Father’s Day! It would have been great to spend Father’s Day as a family, but I am glad Joey is able to spend it with Alyssa and a good friend who flew out to AZ from Maryland. They are spending the day in Sedona. It’s a great place to get away from all the stress.


Yesterday wasn’t one of my good days. Aidyn has had continual problems with his osomy bags leaking. I had to change it three times! The 3rd time was the last straw for Aidyn. He cried so much his ostomy prolapsed. This had happened before, but it didn’t come out as much and it went back to normal within the hour. I called Dr. Puder and he reassured me this can happen and that the ostomy isn’t threatened as long as the color stays red or pink. He instructed me how to push it in. I could go to the ER if it wouldn’t return to normal. Well, after 5 ½ hours, the color got darker, I couldn’t push it back in and the ostomy was bleeding enough to change the color of the output. I called the on call surgeon, explained it all, and was told to come into the ER to have a look. The ER doctor examined the ostomy and decided to consult with Dr. Puder’s team. The on call surgeon, Dr. Hamilton, was chosen to take a look with a colleague and wouldn’t you know it, the ostomy returned to normal. I started to feel foolish, but everyone said I did the right thing. I love how attentive Children’s Hospital is with our concerns.


We continue to have more leakage issues today, but we are less stressed. I guess Aidyn cannot sleep on his stomach until he is reconnected. Which means more sleeping in Mommy’s arms…but that’s always o.k.

Admission into Children's Hospital Boston

On Sunday Aidyn turned 2 months old! His corrected age is really 3 weeks. Take your pick. A good friend organized a thoughtful fundraiser benefit for Aidyn, and it was a success on Sunday. There was a silent auction, bake sale, activities and live music. It was hosted by Poor Red’s Station in New River, AZ. There was a nice turnout and everyone enjoyed themselves. Aidyn and I couldn’t attend, of course (we’re in Boston), but I felt like I was there since we used our webcams. People were able to see Aidyn on a TV screen hooked up to the Joey’s laptop. It was very nice.

Aidyn is continuing to do well with his treatment here in Boston. We arrived on Sunday, May 24th and admitted Aidyn to Children’s Hospital Boston at noon, May 25th. We were in such good spirits when we arrived. Aidyn had a big boy bed set up for him and he was lucky to have the room to himself (2 kids per room). The nurse changed Aidyn’s central line dressing and weighed him, he went up to 2.9 Kg, or 6.4 lbs. She let us know that his Omegaven was ordered. We saw Dr. Puder walk passed the room and we acted like we just saw a celebrity. Dr. Puder is a celebrity to all of us parents whose children have suffered the effects of TPN use. We loved him already. He came in and was so personable. He was happy to get Aidyn in so young; he’s one of the younger babies on Omegaven. We were impressed with the fact that Dr. Puder took his time with us and was in no rush to be off somewhere else. He ordered x-rays and labs to be done right away. The x-ray showed Aidyn’s Broviac placement was good. When we returned from the x-ray, the Omegaven arrived. He was started on Omegaven for a 24 hour period at first, then at the usual 12 hour dose in the evening. The labs revealed Aidyn’s total bilirubin level was 8.1 and the direct level was 5.9. They had gone up since his last labs were done at Banner Desert (total was 5.5 and direct was 3.6 on May 18th). Dr. Puder said this was most likely from the blood transfusion Aidyn received the day he was discharged. Transfusion blood contains broken down red blood cells, hence bilirubin. Dr. Puder almost never administers blood transfusions, even for surgeries.

The next day Aidyn had an Upper G.I. done to determine how fast food moves from his mouth to his small intestine. He drank the contrast and it passed quickly. Good news! The next day, Aidyn was started on feeds, 5cc’s of breast milk 3 times a day. He loved feeding from a bottle and he had no problems at all. The day after, Aidyn’s feeds went up to 10cc’s. While in the hospital, his Lovenox therapy was addressed. He had an echocardiogram done. The clot found previously at Banner Desert seemed to be gone. But there was a concern about the area around the tip of the broviac placement near the heart. Aidyn’s Lovenox dose was increased several times during the hospital stay. The staff made sure we were well trained in giving the Lovenox shots and preparing the PN and Omegaven with the pumps before being discharged. We anticipated having Aidyn in the hospital for 48 hours, but it turned into 4 days instead. The hospital most definitely is not in a rush to send their patients home. We appreciated that very much. Our stress level was low for the first time since Aidyn’s diagnosis with NEC. Before discharge, we were able to find a place for Aidyn and me to stay while he is seen outpatient. We were fortunate enough to be placed with a wonderful family, the Mills, who donates space in their home to families in medical need through Hospitality Homes.

I do not have my own transportation (nor would I want to), so I either take the Greenline train or a cab (in bad weather) to the hospital for appointments. So far, we have been with the Mills for three weeks. The first appointment with Dr. Puder on June 3rd went well. Aidyn had labs done, a weight check and a visual exam. He gained weight (not sure how much), appeared more alert and the bilirubin results showed an increase, as expected. It tends to go up before going down when being treated with Omegaven. The total bili was 9.4 and the direct was 6.7.

Last week we went to Aidyn’s first CAIR clinic appointment as well as had a barium enema and another echocardiogram done. The enema was to determine how much of his colon was left. It showed a good amount left, but the doctors were unsure if there were any blockages or narrowing. At that time, Dr. Puder offered to reconnect Aidyn’s small and large bowels when his direct bilirubin goes down to 2. We were excited to hear that it could be done while he is here being treated in Boston. The echo confirmed that the clot previously seen in AZ was gone, but the area near the tip of the central line was still unclear. It was decided that Aidyn be treated therapeutically with Lovenox since he now has a history of clots, has a central line and still has an opening in his septum that could allow any bit of possible clot to float elsewhere in the body.

The appointment with the CAIR team (Center for Advanced Intestinal Rehabilitation) was thorough and lengthy. During the visit we saw the nurse for Dr. Puder, the dietician, the PN nurse, social worker, Dr, Duggan, the pediatric gastroenterologist, Dr. Jaksic, the pediatric surgeon, and a few others. The plan was to up Aidyn’s feeds 12cc’s 5 -6 times a day, increase his PN volume, to start weaning off the PN and hopefully find a way to keep his ostomy bag from leaking and changing it everyday (should be able to stay on for at least 3 days). For now, Aidyn is off his TPN for one hour everyday, totally unhooked! He loves getting fed by mouth and is always wanting more. With labs from last week, his total bilirubin went up again. The total was 9.9 and direct was 6.8. Wednesday, he saw Dr. Puder again. He had his labs drawn from his broviac and was weighed. He is 7.3 lbs! We talked again about reconnecting Aidyn. I can’t wait to be rid of the ostomy and all the trouble it gives. Aidyn’s color is looking a little better and his eyes are too. His activity level is wonderful. He’s not just a sleeping baby anymore. He stays up for a good amount of time, engaged in my talks with him and very curious as a baby should be. He is even cooing with me and his little bear friend. The lab results from this week are better. His total bili is 8.7 and the direct is 5.8. Yay! The bilirubin is down hill from here.

Omegaven

Let me continue the details of Aidyn's journey. When we did research on Omegaven we were very excited and relieved. We were determined to get Aidyn this experimental treatment. We told the nurses and doctors about it at Banner Desert. All but one had not heard of it. In fact, Aidyn’s main neonatal doctor had seen it used in a hospital in New York, so he mentioned it to the pediatric gastroenterologist. She looked into what it would take to get Omegaven to the hospital for Aidyn and also left a message with Dr. Puder of Children’s Hospital Boston to see if we could have the treatment remotely. She also left a message at Seattle’s Children’s Hospital and UCLA. The only message returned was from Dr. Puder from Children’s Hospital Boston. In a detailed email, he said he could treat Aidyn in Boston, get housing and the Omegaven would be paid for by the hospital if the insurance didn’t cover it. While waiting to hear back from the other hospitals, somehow the Peds G.I. thought we weren’t sure what we wanted to do. We found that out when Joey started making calls on his own to different hospitals. We were very disappointed and angry that this message was somehow portrayed. Joey left a message with Dr. Puder and received a call back from him. Dr. Puder was so easy to talk to and very personable. The doctor had his team make the necessary contacts for our insurance and details for Aidyn’s admission into Children’s Hospital Boston. We were in good hands.

Meanwhile, the hospital Aidyn was currently in seemed quick to have Aidyn discharged…we were not very comfortable with the hasty preparations. We had no training in the hospital to take care of Aidyn’s TPN and pumps. I had two days to learn how to inject Aidyn with Lovenox, something that is done twice a day. We honestly thought the hospital was going to keep him a little longer to observe the clot Aidyn had. Plus, we were not prepared at home. Aidyn was discharged from the NICU and hospital on May 19th, weighing 6 lbs 2.79 oz. Let me add that when Aidyn was discharged, he was taken off his TPN for 2 hours. He had never been off of it during the hospital. I find that a dangerous thing to do, he could have had a terrible low blood sugar issue.After a couple of days being home from the hospital, Dr, Puder had called to say he wanted Aidyn admitted to Children’s Hospital on the following Monday. We were very excited. We somehow managed to get plane tickets and a hotel for Sunday, May 24th. We did have a scary moment on the way to the airport. As we pulled down our street, I noticed blood coming through Aidyn’s IV lines. We hurried back at the house, called the home health nurse (who had been on the phone on and off with us for over 24 hours, due to pump problems) and in a panic changed his tubes out. The nurse arrived and changed his central line cap. We feared this would happen during our flight, thank God it didn’t, at least not until we got to our hotel room. I changed everything out again and hoped we would have an uneventful night. The next day, Aidyn was admitted into Children’s Hospital Boston for treatment. We were so relieved. Aidyn's doing well, by the way.

Catching up, April and May

Apologies for not updating. Life has been extremely busy. We must catch up on what has happened in April and May. Let me rewind a bit. I forgot to mention that during the week of Aidyn’s surgery recovery, we requested he get an ultrasound to rule out problems in his brain. The doctors felt he probably didn’t have any major brain injury issues, but still ordered the ultrasound. The results were good, no apparent damage such as bleeding or lack of oxygen. Around the 27th of April, Aidyn had an echocardiogram done to see if there was a possibility Aidyn had a clot from his heart that could have contributed to possible circulation issues of the small intestine. It could help in determining why Aidyn got NEC. Well, a small clot was found in his superior vena cava. But, since his blood flow was very good around his heart, the doctor’s ruled out a problem there. The neonatal doctor’s suggested treating the clot with medication, but the cardiologist said that since the clot was small, there was no need to treat it. Another echocardiogram was done about four days later, but it had grown a little. This time Aidyn was given Lovenox, a blood thinner. We were told he would be on it at least three to four weeks. Aidyn also received an ultrasound of his abdomen to be sure there were no other clotted areas. There wasn’t. So, the NEC has no known trigger.


On May 1st, we met with the transplant doctor and the coordinator of University Medical Center from Tucson. It was discussed that Aidyn would have to be 20 – 22 pounds and stable before he could have the intestine and liver transplant. He would probably be 1 to 1 ½ years old when he was given the transplant. It seemed so long. The transplant coordinator had bad news. Our insurance doesn’t cover small bowel transplant. We were shocked. They said they could appeal the insurance company, but would have to wait until Aidyn was closer to getting the transplant. That put a damper on the weekend. There had to be another way, I thought. I remembered the morning of the consult, talking with a kind lady while we waited for our transplant consults. She mentioned that a woman at UCLA was allowed to use an alternative lipid for use with the TPN, but it came from Europe somewhere. During the weekend I began to search for an alternative to the TPN. I found Omegaven.

Update

Today, Aidyn turned one month old!! A lot has happened over the past 4 weeks. During Aidyn’s second surgery, the surgeon took the end of his small intestine and gave him an ostomy. She also gave him a stoma for the end of his big colon.

Seven days old, after his second surgery.

The stoma is flush with his skin, at the end of the incision. The ostomy is on his left, with a bag over it to collect waste. Aidyn was weaned off all meds from surgery and the ventilator about a week and a half ago. He was started on feeds through a feeding tube in his nose on April 29th.

First he was given a 1/2 cc/hr of Pedialyte. He tolerated it well over 24 hours. Next, it was breast milk, but he dumped it all out into his bag. His feedings were stopped, but poor Aidyn was getting hungry. Finally, Elecare formula was given to him 2 days later, he dumped more than put in this time. On May 5th the doctors stopped his feeds. It was thought Aidyn’s small bowel may need to heal more before he can absorb anything. To help ease Aidyn’s hunger pangs, one of the surgeons suggested letting him have a little Pedialyte on his pacifier. It would keep Aidyn from having an oral aversion. More updates from the past month soon.

Aidyn's Beginning

After a night of contractions and some bleeding on Easter night, I went to the hospital. It was 3:30 a.m., on April 13th, 2009. I was admitted to the hospital because I was steadily having contractions and 4 cm dilated. I was given Magnesium Sulfate to stop the contractions, a steroid shot in case Aidyn’s lungs were not fully formed and had an Amniocentesis to rule out an infection in my amniotic fluid. The nurse was scheduled to give me another steroid shot the next morning, but we learned from the Amniocentesis results that Aidyn’s lungs had fully formed. Also, there was no infection. So, no one could figure out why I had preterm labor. By now, around 9:00 a.m., I was between 7 – 8 cm dilated; my obstetrician said I would be having Aidyn later in the day. I handled my labor extremely well, so well, the nurse had a hard time knowing how close I was to giving birth. I decided on not using any medication (which I later wished I had when the doctor gave me pitocin). Aidyn was born at 6:03 p.m. on April 14th. His Apgar scores were very good, 8 and 9. I was surprised he did not need any assistance. Aidyn progressed well each day with his bottle feeds. No more IV at almost day 3.

On the night he turned 3 days old, Aidyn took an unexpected turn. On Saturday, at 3:54 a.m., the doctor called saying Aidyn had blood in his stool and was being put on antibiotics. Then, at 5:49 a.m., we were called again. This time he was being put on a ventilator because he had apnea three times. We headed to the hospital with fear. When we arrived, our hearts sank when we saw Aidyn with a breathing tube in his mouth, another tube to collect fluid and gas from his stomach, leads and IV’s in his little limbs. His stomach was distended and getting hard. The veins were very prominent on his abdomen. H e was listless. The doctor showed us an x-ray of Aidyn’s abdomen, showing us the infection of his intestine. We hoped the antibiotics would work and he’d get to eat again after a week. Hours passed and Aidyn’s stomach looked bad. It appeared he developed a bruise on his abdomen, but it was worse, his intestines perforated. He would have to go into surgery. The surgeon presumed Aidyn had necrotizing enterocolitis (NEC). She didn’t know what she would find, hopefully little damage. Aidyn was scheduled for surgery at 1:00 p.m.

After about 2 hours, the surgeon came to us. She didn’t look optimistic. There was devastating news. She told us Aidyn did have NEC and she had to remove most of Aidyn’s small intestine, leaving only about 18 – 20 cm left (there’s about 220 cm in a baby). She painted a grim picture for us, he could die peacefully or he could get a small bowel transplant. With the small bowel transplant, he would also need a liver transplant since it would fail from being on the TPN for a long period of time, up to a year or more. She talked about what a rough road it would be to opt for the transplant; it was hard on families and had seen it break up relationships. It was the worse day we ever had. We grieved for a few days, there was a choice we had to make, let Aidyn go or fight for him. We didn’t want him in anymore pain, yet we couldn’t just let him go. The surgeon left Aidyn’s wound open so she could explore and clean out his abdomen a couple days later. A day after surgery, Aidyn had a Broviac put in for his TPN.

Five days old. Not knowing Aidyn's fate, Alyssa visits Aidyn for the first time, after child visitor restrictions have been lifted in the NICU.

Aidyn had developed a rash on his left side a day after the surgeon was supposed to do the second surgery, (she was too tired the previous day to do the surgery). Aidyn was back in surgery on Tuesday at 12:30 p.m. The surgeon found more damage. She removed a little more small bowel, his ileum and less than one forth of his big colon. His prognosis was the same.

Despite Aidyn's condition, we decided to take the more difficult road and give our son a chance. He has overcome more than we could ever imagine for ourselves. Aidyn gives us strength everyday. We love him.