Tuesday, December 29, 2009

Urology Appointment

Dylan had to go back to Rady Children's Hospital again for a kidney/testicular ultrasound and a VCUG. A VCUG is a procedure where they insert a catheter into the bladder and inject dye into the bladder to see if there is a reflux of urine up into the kidneys. Dylan was diagnosed with grade 3 kidney reflux at birth and has been on Amoxicillin daily, so this was just the follow up. I usually go into appointments with no expectations because I don't want to be disappointed. Good thing because he still has the reflux, it is no better, he has not grown out of it like they thought and he actually has dual ureters on the right kidney - which I never recall the doctors telling us. Then he had the kidney ultrasound and his kidneys still are measuring small but there is nothing they are going to do about that and his testicles have moved down into his groin.

After these two procedures I took him over to the Urologist's office to hear what he had to say about everything. Well, he told me that he is the most concerned about the reflux because it can cause kidney damage down the line and it is the first thing he wants to fix, but he wants to wait until he is 20lbs! I laughed and told him that Dylan might be 2 yrs old before he is 20lbs. Of course because of the dual ureters on the right side it makes the repair more difficult - figures! So, right now he just wants to keep an eye on things and see him back in 6 months for some more testing and wants me to keep watching out for UTIs.

These videos I took on my phone while Dylan and I were waiting for his next appointment. He was talking up a storm and acting so cute, he sure makes me smile.

Saturday, December 26, 2009

Merry Christmas

We had a wonderful Christmas with all of our family and friends. The kids had such a great time. Dylan was held and cuddled by everyone. He is doing so much better. Everyday his eating is improving. He wants to suck on the bottle but we need to wait a few more days, I think he is getting a little frustrated. Hailey scored this Christmas - she got a buddy seat so she can ride with me on the horse, new pink cowboy boots, and a purple helmet (all thanks to Grandma). She was very excited!

Dylan with Mommy and Auntie Kim

Dylan with Auntie Kerri and Uncle Chad.

Dylan is sitting so much better, this video isn't the greatest but he can sit with the boppy behind him for a good 30-40 seconds! I am so proud.

Wednesday, December 23, 2009

Dylan's new signature pose. His left hand is almost permanently covering his mouth when I get him in the feeding position. Today he is eating better - 3.5oz per bottle, better than 2oz!

I took him to his follow up appt. with the plastic surgeon yesterday, he weighed in at 12lb 7.5oz, a loss of 8oz from before the surgery. Not too bad. I thought he would of lost more with this huge decrease in intake since the surgery. The doctor said that everything looked great, healing nicely. She said in another week or two he will be eating like a champ and make up for the loss, I can't wait. I take him back in 3 wks for another follow up and then we will be able to start him on solids again.

We took the kids to see Santa this morning. Hailey had been talking about it for the last 2 days, she was very excited, but when we got there - NO WAY! She stayed as far away from Santa as possible, so I just got a picture of Dylan, he smiled and held a candy cane - it is soooo cute. Sadly I don't have a scanner to put it on the blog, but take my word, he was adorable for his first Santa pic. So, because Hailey wouldn't take a pic with the real Santa this will have to do.

Monday, December 21, 2009

Dylan looking at Hailey - he actually gave me a little bit of a smirk. Hailey and I making Christmas cookies, if you notice she is just wearing an apron and underwear - she told me she didn't want to get anything on her clothes - she makes me laugh and takes my mind off my worries.

It has be a rough couple of days. Poor Dylan, he just seems like he is in pain all the time. He still hasn't smiled, and he holds his hands up to cover his mouth all the time. They gave us Tylenol with codeine to give him, it seems to work but he will cry easily, and it also makes him very sleepy which then makes it even harder to get him to eat. Feeding has been very very difficult. He doesn't want anything in his mouth, so it is quite a challenge. Before the surgery he was taking 6oz every feeding, now I am lucky if I get 2-4oz in. They don't want him to suck on anything for a few more weeks so I am squirting the milk into his mouth, but sometimes he will just hold it in his mouth and not swallow or spit it back out - he got me right in the eye this morning. It makes me so worried about his weight. It was such a challenge to get him up to 13lbs and I know he must have lost weight while he was in the hospital (after he went into respiratory arrest they didn't let him eat for 24hrs because they were worried about his airway). I take him tomorrow for a check up with the plastic surgeon. I hope she says that everything is healing well, and maybe she has some tips for feeding. As of today I have only been able to get him to take about 9-10oz of formula, certainly not enough, and it has taken me about an hour for each feeding. I am tired to say the least.

Saturday, December 19, 2009

On Wed. Dec. 16th Dylan went to Rady Children's Hospital for his cleft palate surgery. We were told that he would have to spend one night in the hospital and would most likely go home the next day. The surgery took about 2hrs and the doctor told us that it turned out to be a little more complicated than she had anticipated, with his mouth being so little and his small lower jaw. She said that his tongue was pretty swollen from the retractor and that he would be very very sore. When we finally got to see him in the recovery room, my heart just broke for him, he looked so swollen and miserable. The first night he did o.k. he had a lot of bleeding and secretions that we had to keep suctioning out and they made sure to give him pain medication(morphine) every 4hrs and it seemed to work very well. The next morning I noticed that he sounded congested in his lungs and the nurse agreed and called in Respiratory Therapy. She gave him a treatment and suctioned out his nose and told me to keep picking him up and patting his back throughout the day to help loosen the secretions and encourage him to cough. So I did this. They also wanted me to start feeding him. This I thought would be a joke. His tongue literally was so swollen that it was filling his entire mouth and sticking out. Then they tell me I can't put the nipple straight into his mouth, I have to put it to the side and kind of dribble/squirt the milk in. Easier said than done. His mouth was hurting him so much that he would lay with his arms covering his face and anytime anyone came near he would bat his arms in front of his face, thus scratching himself all up. The doctor had come by midday and said that he would need to stay another night but that he was doing good and the swelling looked normal. Later that evening the nurse gave him the morphine because he was crying so much and within a half hour he was asleep, but I noticed that his breathing was shallow and that he would take a big gasping breath every few minutes. I called the nurse in and she told me to pick him up and pat his back, so I did and while I was holding him I felt that he wasn't breathing. I rubbed his back and head but no response, I laid him back and he was limp and his skin gray. I immediately started giving him oxygen and tried to stimulate him to breathe, and called the nurse in. She called out for help and within 30 seconds the Rapid Response Team was in the room and there were 12 people working on our baby. My heart was in my throat, I though - this must be it, Dylan is dying. I know this is horrible to think but when we were given the diagnosis after his birth the doctor told us that he may just forget to breathe and die suddenly. Mitch and I looked on helplessly. I was trying my best not to cry, it was horrible. I can feel a lump in my throat even as I write this. Anyways, they were breathing for him with a bag and mask and gave him a shot of Narcan. Narcan is a reversal drug, it counteracts the affects of anesthesia and/or narcotics. Within seconds he was crying and flinging his arms and legs around - he was pissed off. Thank GOD!!! Turns out the anesthesia from the surgery and the morphine, combined with the swelling was just too much on his little body and he just gave up. I thank God every minute that I was holding him at just the right time, I can't even think if we weren't in the room. It was God telling us he wasn't ready for him yet.

After they had him stabilized they moved him to the PICU where he could be monitored more closely. He spent 2 days in the ICU - they gave him steroids to reduce the swelling and it worked great. I honestly don't know why they didn't do that in the first place. Dylan ended up spending a total of 3 nights and 4 days in the hospital. He is doing good, happy to be home. Feeding is going to be difficult for a few more weeks but I know that this surgery was for the best.

Rady Children's Hospital, San Diego all lit up.
The pickle before surgery, still happy and smiling.

Right out of recovery room, poor baby.

This was his blocking position telling us "please don't touch my face."

Ready to go home. Still not smiling but looking a lot better.

Tuesday, December 15, 2009

So, if you look closely you will see that Hailey has on a yellow shirt with red ladybugs, pink pants, rainbow socks, pink sparkle shoes, a blue jacket and a orange Halloween clip in her hair. Can we say RAINBOW BRIGHT! This is how she insisted she dress for Preschool today, I have chosen to not fight this battle, I just laugh and take a picture.

Dylan did great in therapy today. Dana (his therapist) and I were almost in tears because he did so well. He tracked a toy with his head and eyes across mid line. He held a small ball in his palm for a long time (I wasn't timing it). He isolated his index finger and thumb to grasp a small fuzzy ball and he brought his arms out and forward when on his tummy (she had rolled him from his back to his tummy and had his arms under his belly). Also, while on his Wingbo he began pushing with his feet and held his head up 90* for a really long time. We were all very excited with this progress.

Dylan goes tomorrow for his cleft palate/ear tube surgery @ 11:30a.m., they are putting the ear tubes because he had a little fluid behind his ear drum. I am actually very surprised that he has never had a ear infection, he has actually never even been sick, not even a fever. We were told that babies with a cleft palate often have recurrent ear infections, but I guess Dylan broke the mold on that one. I hope and pray that everything goes well. I will post an update when we get home from the hospital, he will most likely only need to stay over one night, so hopefully we will be home on Thursday.

Monday, December 14, 2009

Dylan and my Mom. The best Mom/Grandma in the world.
Here are some pictures from this weekend. We spent Sunday with Mitch's Family. We all had a great time visiting with everyone.

Dylan is really liking his Wingbo, he is even figuring out how to push off with his feet and swing a little. He can stay in it for longer periods of time now, which makes me a very proud Mommy! We finally got approval for PT and OT through the Regional Center, up until now Dylan has had a early childhood development therapist come to our house once a week - she is wonderful, we are very thankful for her. But now I am very excited to add PT and OT to Dylan's weekly therapy. It is because of all the cutbacks in the state of California that it took this long for approval. Of course he hasn't started yet, I was just able to go for orientation, to sign all the papers, etc... I was told that once the paperwork was processed he would probably start in January. Until then I continue to do daily therapy with him for gross and fine motor development, work in his therapy pool, and Wingbo, etc... So watch out everyone, SUPER DYLAN is on his way!!!

He's just happy all the time. But what's not to smile about, he knows how completely adorable he looks in that outfit.

Hailey loves her baby brother. They are so cute together.

Wednesday, December 9, 2009

A quick little note: Dylan will be having his cleft palate/ear tube surgery next week on Dec. 16th at Rady Children's Hospital in San Diego. I am anxious to get it over with but of course scared for him. I hope and pray that everything will go well. Please pray for our little man.

Here he is sitting up with just the help of the boppy, well almost, he still leans forward a lot, but he is holding his head so much better. His back strength is improving too, I can now carry him around on my hip like a big boy, just holding under his bum and he is able to hang on to my shirt too. Dylan is so much like me, we have to catch up on all the good gossip magazines. He is doing great in his Bumbo seat, his head doesn't fall back or to the side anymore.

This video is for you Mom/Grandma. This is a great one of him "swimming." He did so great yesterday, I can't believe the improvement in his language skills while in the pool. He makes a lot of sounds, coos, etc.. when he is in the pool. He has really figured out how to roll around in the water, he seems to have a lot of fun.

Monday, December 7, 2009

Here are my cutie-pies. I took them to get their Christmas pictures taken today (these are not the pics), all I can say is that it is very difficult to not get soaking wet when it is pouring rain and you have to get the stroller out of the trunk, two kids out of the car and into the stroller, a diaper bag and purse, then run across the parking lot and into the store. My clothes looked like I had just jumped into a pool. At least the kids were dry. The pictures turned out really cute - when I can figure out how to scan them into my computer I will put them on here, but in the mean time these will have to do.

Saturday, December 5, 2009

Just a quick little message about the Water Way pool - I have set it up in the bathtub, shower and kitchen. The bathtub was the easiest for draining, the shower was easiest to fill up but I wasn't thinking when I went to let the water out the pool was blocking the drain in the shower - oops, all I can say is that water is HEAVY and of course Mitch was not at home, I had to wedge my feet under the pool to make a little space for the water to drain - it was not that easy. I then set it up in the kitchen using the sink (I have one of those nozzles that you can pull out) to fill it up when Dylan's therapist was here. I need to get a longer drain tube so I can drain into the sink, so I just used a bucket. This video was from last night, he was pretty tired and not very active - he fell asleep about 2 minutes after I took this.

Friday, December 4, 2009

After a hard day's work - tuckered out. Hi Mommy!

Tonight Dylan was a little sleepy in his pool, he "swam" for about 15 minutes before he just had to close his eyes. I think the water was just too warm and cozy. I do have to say that he definitely has been sleeping longer at night after therapy in the pool, it has been kind of nice instead of waking up at 6am he has been sleeping until 8! Whoo Hoo for Mom and Dad, if only we could get Hailey to sleep that late too.

Thursday, December 3, 2009

Who could resist that smile. Too cute for words. He's our little angel. Hailey was feeling left out, so she had to take a turn in the Water Way pool with Dylan. This is now his 3rd time in it and I can't believe the improvement. Today I set it up when his therapist came and she was amazed at how well he was doing. He was rolling from his stomach to his back, pushing off the sides and bottom with his feet, kicking and splashing with his arms and legs, and making lots of sounds of excitement. He even was lifting his feet out of the water and grabbing his knees and thighs - this is the first time he has even reached for his legs, it was amazing! I can't wait to put him in it tomorrow. I will take another video to post.

Tuesday, December 1, 2009

To tell or not to tell, that is the question of today.

Took Dylan for his 9 month check up today. I find it hard to sit in the waiting room of the Doctor's office, I dread anyone asking me how old he is. Do I tell the truth? Or, do I lie and say he is only 4 months to avoid the questions or comments? If I tell the truth most people then say "was he a preemie?" Or, my favorite "gosh he is so small, why?" Let me just say, I have never and will never walk up to a total stranger and ask why their baby is so small or why their baby isn't sitting up yet at 9 months or why their baby won't make eye contact all the time and smile on cue. Sometimes I find myself saying yes he was born early (total lie) or I say if you really want to know the truth he has a rare syndrome that causes him to have developmental delays and grow slowly. Then they either say "Oh" and turn away, or say "I'm sorry," and still turn away or change the subject. This usually makes me feel more uncomfortable, because then I feel like they think he is diseased or something. My favorite part of this morning was when the nurse brought us into the room and she never even asked me about his milestones, which were clearly on the assessment sheet for her to check off. She never asked how he was doing developmentally or how he was eating. It's like she saw the diagnosis on the top of his chart and thought it would be better to not say or ask anything in fear of hurting my feelings? Who knows. I am just so irritated by all of this stuff I have to deal with on a daily basis. I wish someone would just come up to me once and say "what a beautiful baby," that's it and then smile and walk away. Well I guess this is my pity party for the day. Just had to vent. I do want to share that since having Dylan I feel I have a greater since of compassion and empathy. It's funny but I have been a Labor and Delivery RN for over 9 years and worked in the NICU and I have seen and taken care of babies born with health problems, but never anything like this. Then it happens to me and my experiences have definitely given me a different perspective on life, I don't take things for granted anymore and I am thankful for every moment because life is too short.

By the way Dylan weighed in a 13lbs and is 25.5" long. Not a huge increase, just a little over a pound since his 6 month check up. It is frustrating to see because he has been taking 4-5, 6oz. bottles a day for the past 6-8 weeks. It was such a huge jump from his previous 3-4oz per feeding, so I was disappointed to say the least, I thought for sure he would of gained more. But on a happier note he was very excited to lay on the paper in the doctor's office, he was kicking and smiling so much. He always likes the way the paper feels and sounds, it's really cute, I have to hold him still just so they can listen to his heart and lungs. His Pediatrician did reassure me to not worry about his weight, the important thing is that he is gaining, no matter how small it is, and she thinks he is doing wonderful.