Ayden's Journey: A Micro-Preemie Fight

17months old (13mos adjusted)...Big update!

2011-01-06T20:46:00.000-08:00

I have not posted in a little over 3 months and I really don't know why. Lots have gone on and lots of things have changed. But I have been feeling a bit down and out and even more exhausted than usual so I have not been able to bring myself to post anything.

Since my last post Ayden has been battling lots of different things of his own.

CP CLINIC & Therapies:
He was officially diagnosed with Cerebral Palsy...Spastic Diplegia to be exact. Since the diagnosis we have been focusing a lot more intensely on Pt&Ot. He has each of those therapies twice a week.

He began sitting up by himself for longer periods of time in October just in time to get some really cute Halloween pictures in his froggy costume I made him :-D

Eyes/Vision:
He has also had 3 eye surgeries since the last post as well. He is now only using his right eye in spite of all of the difficulties he has had with it. During his last eye procedures Dr. Trese had to separate the iris and cornea because it had begun to fuse together. The had to cut slits in his pupil to give him a greater chance for it to begin to dilate again. He has his 2nd vitrectomy in this eye as well as had to be injected with a thickening gel. His lens in his right eye also had to be removed. We are still waiting for a false lens to be fitted and placed in this eye. Meanwhile, the left eye has stopped functioning once again. This is the eye that had glaucoma and a cataract for over a year now. During his last exam on this eye the glaucoma has damaged the eye so much that it has now developed hypotony and is beginning to shrink. He is on numerous drops to try to increase the pressures again but if it continues on this track, the eye will need to be removed completely. For now the pupil isn't dilating and he does not open this eye very much. We will be making another trip(or 2) to Michigan for the procedures on this eye sometime before spring as well. He goes in for another EUA at Dayton with his normal Optho on January 20th. Hoping they will schedule his lens fitting then. He had to sit up for 6 weeks straight after his surgeries, he hated sleeping like this!

GI:
He has also been having one belly issue after another. He has had a positive c-diff since beginning his chemo treatments. Constant loose stools and puking due to this has forced us to stop doing bolus feedings. He is now on continuous feeds for 19-20 hours of the day and off for 4-5 hours to prevent the massive spit up that he was having before. He has been puking every time we give him his doses of prevacid each day but no reason can be found. The GI doctor who had followed Ayden since birth has now moved to another state and we were forced to see another doctor in her practice. This has not been working out, each time we go this woman asks how early he was and what surgeries he has had. And, with in the same breath suggests a fundo or a g-j tube possibly being in his future. Sorry, but for all of those changes to be made, I expect you to know my son and his specific needs not just throw these concepts at us after only seeing him twice. We are scheduled to see a new GI doctor at Nationwide Children's the middle of February. Hoping this doctor is more perceptive and insightful & we can get our little man back to baseline without another surgery!

ENT/Airway:
Since starting the chemo injections with his routine airway surgeries he has made major improvements. He is now able to go 2 months in between airway surgeries. It has now been 3 months since his last dose of chemo as well! This is a miracle in its self! We use to have to go every 2 weeks emergently! I am so thankful for the miracles the chemo has done for him! This has even made his ENT surgeon a believer!

Neuro:
He has yet to see a Neurologist either but we have finally gotten into one close by. That appointment will also be at Nationwide Children's during the month of February! Good news is that he hasn't had any seizures we have see since August!

Other Specialists:
Next week we will have our first visit with the amazing Functional Vision Specialist that we have been hearing about for the past 9 months! So excited to hear what she has to say and the feedback she gives us to help him interact with is surroundings more often. He will finally see the Pediatric Dentist next week too!

Speech/Feeding:
Speech/Feeding therapy has seemed to hit a brick wall. He has been gagging on more and more items and refuses to even do tastes of anything other than the meat baby foods. Even with this, he will only tolerate the tastes with a mesh feeder and so he does not get any substance from it. He has begun to drink his bathwater though. Which baffles me all together! So we have tried to put water in a bowl and he will suck up some water but makes a mess with it while he is at it. We are a loss when it comes to this. He is still not saying any words but he babbles vowel sounds constantly and plays with the tonality of his voice all of the time. He even laughs at himself with the sounds he makes. We have been searching for a new Speech therapist b/c our sessions just consist of us showing her what we do at home. It has been frustrating to say the least!

Aside from the strictly medical stuff:
Ayden has been making progress in a lot of different ways. He is rolling all over the living room floor to get to places he knows his toys are. He has finally begun to weight bare in the quad position. He babbles like crazy. Shakes his head when we say no. He bounces up and down when we say "giddy up horse giddy up" when he is on your lap/knee. And he gives kisses on cue.

We had a great Christmas & New Years with our little man too!...Look how precious he is in his Christmas pics!
This was our Christmas card that we sent out this year.
Hes still too small for some of his toys/presents but he loves them all the same. Look how proud he seems of himself!

Height/Weight Update:
Ayden is now 23lb 8ox & 31.25in long. That puts him in the 95 percentile for his weight,and 93percentile in height for his adjusted age!...He is in the 25 percentile for his real age in both! He is getting huge & has come so far! I love him so much!

58 Weeks Old...Airway, Eyes and Teeth!

2010-09-20T20:19:00.000-07:00

So since my last post Ayden has had eye and Airway surgery.

The eye surgery was a stribismus surgery to see if they could relax the muscles in the eyes enough to not cross so much. We saw results within the first week but things are slowly going back to how they were. Bummer!

Our Optho doesnt seem to be keeping a close enough eye on Aydens case either. Every time we have gone to see him he asks when we will be going back up to Michigan. We have asked for a prescription renewal for his eye drops and he just says to tell the nurse to do it for us. Well evidently they dont look at his chart either, and only gives us a prescription for one of the eye drops and doesnt allow for any refills. And even thought I have called like a billion times I never get a call back. Just to fill you in a bit on Aydens daily eye drops. He is on Cyclogyl to dialate and stimulate the eyes to keep them active, and he is on Trusopt for the Glaucoma. I dont know what else to do! So we have scheduled to go back to Michigan for an exam under Anesthesia. Since our Optho seems clueless and says that he can not see into Aydens right eye at all, we are hoping Dr. Trese will have abit more insight for us since he has not seen Ayden since the 1st week of December. Hoping another vitrectomy isnt involved but at least we will be a bit more informed!

Our trip to Michigan is on October 11th and now we are starting to worry as to how we will get him there and if we can afford it. Our local family services agency has been helping us with gas cards since my husband lost his job 3 and a half months ago but we have almost reached our limit for the year already. And if we have to stay overnight we have no way of affording a room close to the hospital. I feel soo helpless, I hope we can figure things out soon!

Here is Ayden chewin on his toes the day after his eye surgery. Silly boy cant get enough of them!

Anyways,
His last Airway procedure was the longest stent of time between procedures we had had since March and were quite nervous to see the results. The chemo injections are working wonders and we are able to keep on the every 3 week track and may even be able to go to only once a month if things continue at the rate they are going at this point!

On another note!...Ayden now has 6 teeth! I cant believe how fast they are coming in! He didnt get his 1st tooth until July and now 2 months later he has 6 teeth!...They are very green/yellow and one is coming in completely sideways though :-(. Upon our last trip to Dayton Childrens we stopped by the Pediatric Dentist's Office to see what process we needed to take to get him seen and they told me that they were not accepting new patients until January! Im hoping they can get him in immediately at that point but things dont look very hopeful for him getting seen even in the next 6 months!

Happy Boy sitting in his Toy Story chair

Oral Feedings are still non existant but we have a swallow study tomorrow!

Weight wise he is slowing down a lot and actually lost weight for about a week or so. After losing and gaining it back he is now back up to 18lb 8 oz. It seems like a lot but we are being pulled in too many direactions. For his age and development he is on track with weight. But, if he keeps going at the pace he is now he will not reach the 22lb mark needed to get his Mediport until after the New Year. I just dont think his veins will continue enduring the abuse until then. It took them 8 sticks to secure an IV for his last airway procedure! His poor little veins have just been used too much!

He is now being trialed off of oxygen during the day and is on 1/16 liter when needed and at night time!

Lookin grumpy&sleepy in his car seat. Hes gettin so big!

Developmentaly, our Pediatrician is now saying Ayden seems to be at about a 6 month level. He is finally sitting up for longer periods of time. He has lasted over a minute several times within the last week or 2. He is showing a lot of weakness on his right side and doesnt like to move his left side as much as he should. When doing walking practices he needs a bit of nudging to his left leg in order to get him to take a step with it. He loves to be stood up though! He is going to a cerebral pausey clinic the 1st week of October & we hope to get an official diagnosis so we can get more assistance in hopes of getting him caught up.

He is such a happy guy in spite of it all though! He has begun to give kisses and even attempt yo make the "mwah" sound.. of course it just comes out as "aaahhh" but its the cutest thing ever! The first time he did it without me asking for it I bawled like a baby! He wants to kiss me all the time now & it makes me so happy! At least we know he loves his Momma! I cant wait until he says his first real word! He has been doing little things like "mm k" repatatively when hes upset for months now (you know all parents hold their baby and say "its ok, its ok" when they are crying!) and it seems like he says "I good" when hes happy and playing and "ow" when he wants us to stop doing something to him. But we may just be hearing what we want to hear you know! He has yet to say the big ones that all parents expect/want to hear "Ma-ma", "Da-da". I just cant wait!

He is so amazing. I cant believe the improvements he has made and how big he is getting! Im so proud of him!

55 Weeks old:...Chemo is helping!

2010-08-29T10:46:00.000-07:00

This past week Ayden had his routine airway procedure and actually was given a positive outlook. I knwo its not a big change but instead of every 2 weeks, we are able to space his procedures out to every 3 weeks. We are so excited!...Since ayden was released from the hospital we have had to cope with having an abundance of appointments every other week to ensure that the week of his airway procedures has nothing scheduled after the procedure to allow for recovery time. This means one week is filled with appointments (sometimes 3 appointments in one day) and the next week is filled with preparing for the trip to Cincinatti, the stay there and the scheduling of the next weeks appointments. With this change in regimine it just may mean more time at home!

Meanwhile this week Ayden had his 12 month checkup at his pediatrician and actually had some positive news there too!... Ayden is now 18lb 2oz and 27inches long...This puts him in the 50 percentile for his weight, 25 percentile for his length and 30 percentile for his head circ. for his adjusted age!... Yay!...hes finally on the chart!..Evidently they were comparing him to babies with his actual age when they were telling me he was still too small!

The bad part of the visit was that it turned into a sick appointment and more labs were drawn and being sent for another chest xray...And to no avail!...There is no additional infection and no additional lung/pulmonary issues going on. Meanwhile he was spiking a fever between 101.5 & 102.5 for 3 days. I guess hes allowed to have a fever acroding to three different doctors!...A surprise to me!...lol...He hasnt had a fever for 36 hours now though so seems like it was just from the previous issues or from teething. Who knows?

Anyways...Since I have been slacking here is Aydens first year photos I took of him that I promissed!

He is such a ham!...I love it so much!

54 Weeks old....Sorry We have been MIA

2010-08-22T10:06:00.000-07:00

So I know it has been 2 months since my last post...Life has really caught up to us! So in brief...Whats been going on with our little guy...

Aydens first time swimming...he seemed to enjoy himself!

Within the last 2 months Ayden has:

Gotten 2 teeth and is on the verge of a third!

Developmentaly:
~finally begun to roll over in all directions,
~scoot himself across the floor with his head and arms flat on the ground...(its pretty difficult to keep him from getting rug burn but there is no stopping him)
~beginning to weightbare on his legs and arms (he is very reluctant to use his arms though but will finally push himself up if he is layin on our chests)
~Will move his legs in a forward motion if we move his arms forward in a crawling motion
~Loves to be stood up and jumps/bounces up and down
~Is doing well with head control
~Sits great with support and is using his arms to stabilize himself when not being held
~Has sat for 45seconds unsupported (only 2 times...normally 20-30 seconds is his limit)

Still working on:
~Bringing his head up when doing tummy time
~pushing himself up when on belly
~laying hands flat when put into crawling postition
~gaining more balance and strength to sit unassisted

Feedings:
He still takes nothing by mouth but has been seeing a Speech Therapist once a month. We are supposed to be sent to do another swallow study done soon since his ENT seems to think that his airway should not be a factor with his feedings. He gags or pukes everytime he even gets a taste of anything. This is the second Speech therapist we have seen and both have been too scared to try anything with him and so our appointments only last 10 minutes each time. Very frustraiting to say the least.

Neuro:
Ayden has had only 3-4 seizures his entire life but after an EEG with no findings of epilepsy we have no answers as to why. Along with the EEG we also had a head ultrasound that showed increased amounts of fluid and enlarged ventricles. The ultrasound did not show enough and so we were sent for an MRI. The results of the MRI were good and bad. Our fears at first were that he would need a shunt but this was not the case. The enlarged ventricles turned out to be from excessive scar tissue in his brain from the previous damage from his IVH and from the cysts that were previously in his brain matter disolving and fluid remaining in the areas they once were. There is a significant amount of irreversable damage. We are relieved that he did not need another surgery but this seems quite a bit worse to us since there is no treatment to help with this. We just have to work with him as much as possible and hope that he is able to compensate for the brain damage. We have yet to see a neurologist though.

GI:
Nothing has changed. They want us to slow weight gain but I have not changed his feeding regimine in 3 months and he is still gaining weight at about 1 pound and a half or so a month. If I feed him less he acts hungry sooner & if I try a less concentrated calorie recipe he stools out too much. At this point I am sticking to my guns because I would rather him gain than lose (and his surgeon needs him to get to 10kilos before they will put his central port in).

Airway/ENT:
Ayden continues to have his airway procedures every 2 weeks. But towards the end of June the lesions began to grow back more quickly and spread into other areas of the airway. Previously it had all remained in the area above the vocal cords but below the tonsels. It had now spread onto the tonsels and epiglotis and down into the trachea. To put this in perspective, only 1 in 100,000 children contract this disease and less than 5% of cases have it progress into the trachea. The fear is that it may have or will spread into the lungs (which only happens in less than 1% of cases). We were told that if the lesions spread into the lungs there is no treatment or maintenance procedure to be done and it is almost always fatal. This was a big blow after everything else that he has had to endure. We only one option at this point if we wanted to slow down the spreading of the lesions. He started a form of chemotherapy. Now after each airway shaving and dialation procedure he has chemo injections in different locations with a great amount of growth. These injections have the possibility of slowing down the disease, doing nothing at all or turning it malignant. With only a 1% chance of it turning malignant we are taking the chances and after the first dose we saw no further growth after 2 weeks in the locations of the previous injections. This wednesday will be our next airway procedure and will be our 2nd time back after a treatment...We are crossing our fingers in hopes of more good news!

Optho:
Ayden's ROP has been stable as well as his glaucoma and cataract. His right eye has slowly been drifting more and more inward and when his Doc noticed this he told us to start patching his left in attempting to strengthing his right eye. After 2 weeks we saw no change in the right eye but the left had begun to drift inwards as well. At our last Optho appointment they decided that it was time to do surgery on both eyes to retract the muscles and straighten them as he said that it seems as though his brain is beginning to shut off the right eye entirely. The surgery is scheduled for September 2nd.

Other issues:
Ayden has managed to stay pretty healthy in the 4 and a half months since we have had him home inspite of his immune deficiency. After surgeries he has had to go in for additional steroid shots and a few other simple things but hadnt had any other hospital stays until this past week. The day after his last airway procedure and chemo treatment Ayden spiked a pretty high fever and was spitting up more than normal. After a trip to the pediatrician they found an ear infection and started antibiotics. The fever subsided but puking and diareah were fairly quickly to follow. After a big episode of profuse puking, another high fever and another trip to the pediatrician a couple days later things just were not improving like I had liked. I was nervous that he was getting dehydrated and I took him to the ER...They ran tests, started IV fluids and admitted him. We came to find out that the antibiotics for his ear infection had wiped out all bacteria and his bowels and a new bacteria took over. He was diagnosed with gastrointeritis and c-diff and was given a new and stronger antibiotic. After the 1st day in the hospital he started acting like himslef again...The puking stopped but the diahreah continued...The second day they were able to take him off the IV fluids and his ins and outs were stable again so they let us go home. He will be on the antibiotics and have the diareah for another 10 days. If he spikes another temp we have to rush to the ER again so hoping everything goes well for the next week and a half.
He managed to smile even though he was feeling so sick!

So...On a non medical note...
Ayden did turn 1 on August 5th..We took him to Chuck'E'Cheese and he actually seemed to enjoy himself!

Who is back there?

High five!
he liked his balloons!
And he was down for the count!

We had his birthday party on the 7th...there were about 40-50 people who attended and it was a lot of fun... but it was disfunctional to say the least...and of course that day wasnt complete without a fussy spitting up event and a trip to the ER...

Grumpy man in his high chair for the 1st time
Not Impressed with the cupcake

Ayden, Me& Jess...one of Aydens primaries from Dayton

And he only lasted through 2presents before he passed out
Ayden, Marley, &Dominic other lil miracle men.Ayden &Donnovan...one of Aydens NICU friends
Aydens g-tube popped out during the party &we had to rush to the ER in the midst of thingsAnd Happiness followed once it was back in!
But he got to see some of his favorite nurses!

He liked his new Chair & Jammies!MMMmmm I like this mom!

Overall the day was good...Even with all of the disfunction we are happy Ayden still seemed to enjoy himself!..I cant believe it has been a year already!

Here are a couple of just happy pix of Ayden from today...
he cant get enough of his feet now that he has found them!

I know this is a lot in one post but I know i have been slacking!...I will post another with the one year photos I took of him soon as well!

Weight/Length Update: 17lb 9oz & 25.5 inches long

44 weeks old...Sorry its been soo long!

2010-06-15T07:18:00.000-07:00

So I just realized I hadn't posted in about a month and a half. Wow has life gotten to me! With my sisters graduation, our wedding, and my graduation on top of all of Ayden's appointments and surgeries I feel like we barely have time to eat! So, I apologise for the long time in between postings!

In spite of the long duration between my postings, not many changes have happened with Ayden's care. He has continued to be in Cincinnati every 2 weeks for his airway procedures. In fact after his last procedure he was able to come home the same day! In spite of the swelling and lag from anesthesia he was back down to his baseline 1/8th liter O2 upon entering the PACU. We had to stay for 4 hours after the procedure for observation but were able to come home that evening! Typically he had been required to stay overnight in the Comlpex Airway Unit for observation but the nurses on this floor literally only came into his room once or twice during thier shifts...(and needed instructions for his care when they did come in)...It was totally pointless. And so, this was definitely a nice change of pace for us & Ayden seemed to be back to himself by midnight that night!

Aydens last GI appointment went well too. No changes were made and we do not have to go back for a visit until the end of July. The sad part of it all is that PO feedings are still at a stand still and Speech hasnt been seeing him. (the only good feedback we have gotten is the fact that he puts everything else in his mouth)...He doesnt have another Optho appointment until the end of July either. And, for some odd reason the pulmonologists are not following Ayden as closely as we thought. This is a bit unnerving because I feel like he may be able to be off of his O2 sooner than they think. In the mean time we have to tick him off by putting it back on him every 5 minutes because he hates it so much. During the day he always has the cannula in his mouth, under his chin, or on his forehead and laughing about it. At night when we get up to change the formula out of his pump or change his diaper we find the cannula at the end of his bed or clinched in his hand & yet his O2 Sat only goes as low as 94 (even with his stuffy little nose that he seems to always have due to environmental allergies). I mean I really do see a difference in his Sats when he has it on (usually 99 or 100) but I feel like they are just ignoring him at Cinci. I'm going to wait it out a little bit and just bump him down to 1/16th and go through the weening process without their consent, Ayden is so ready to be without the junk on his face!

Well in spite of our fewer specialists appointments, Ayden now goes to PT&OT two times a week and Help Me Grow has been coming once every other week. And in between those days we have been doing lots of therapy with him as well. He is beginning to love sitting up! Of course he still needs lots of support but he is beginning to lift his head more often. The therapists are amazed by how strong he has gotten in just the past couple weeks! At the beginning of his therapy sessions they were worried that he wasnt showing reflexes, was never trying to balance himself , he always rested his head on his chest, and would barely move when doing tummy time (he wasnt allowed to do tummy time until mid may due to 12weeks tummy rest from g-tube placement). Now he is bringing himself back to midline when he loses his balance, placing his arms out to the side to brace himself when he is tipping over, raising his head to see who is talking to him or to look towards a sound, and now when placed on his belly he turns his head from side to side and gets his little feet moving with his butt up in the air. (I am going to have to take a video of it soon...It is just the cutest thing! )...His therapists keep referring to this as his football moves!...In spite of all of his other improvements, he is still leaving his head on the ground when on his belly, not putting any weight on his arms, and not rolling over. He rolls to and from his sides with ease but shows no interest in rolling over completely (but I do have a feeling he will roll from his belly to his back before he rolls from his back to his belly...he is just too content laying on his sides). He has improved so much in this short period of time and we are so proud of him!

So, on a non-medical blah blah blah note....Ayden has been such a happy little guy lately! He laughs at me a little bit but smiles often. But it is rediculous how much he laughs at his dad!...He can make a sound from across the room and Ayden will crack up laughin!...It is just soo cute...But I do admit I get a little jealous!...It is just so amazing seeing him smile and laugh so often!...Even with everything he has gone through he is as happy as can be just being at home with us!

Here are some picures of our lil man from the wedding!(dont mind his lil toes...somehow we forgot his shoes at home!)

Isnt he just too cute in his tux?

We havnt gotten our photos back from our photographer yet so there should be more to post later!...I also have other photos to post of him so I will try to do that soon too!

Weight/Length Update: 15lb 4oz & 23 7/8 inches long!....hes getting soo big!

Weeks 39-40....Good & Bad...but FINALLY happy!

2010-05-19T08:34:00.001-07:00

So I know there have been larger and larger gaps between my postings so when I post there is a lot of report!...Please bare with me!

So, after my last post Ayden had another GI appointment in which they told us to go down on his calories to 26cal instead of 28cal. They said Ayden was "gaining weight too quickly now". He had went from well below the growth chart for his adjusted age to being in the 25 percentile within just about a month. Well, we tried it for a week and when he got weighed 8 days later he had only gained an ounce in that period of time. I have not since talked to his GI doctor but consulted his pediatrician and have placed him back on the 28cal. I am not sure that his GI doc did any calculations when she suggested putting him back down to 26cal but his pediatrician explained to me that based on the small amount of volume he is getting that 26cal @ only 24oz a day is only meeting the bare minimum for him to sustain his weight. I hate going against what the specialists say at times but I know how Ayden works with weight and I am not about to let him get back into one of his slumps. He does have another GI appointment on Monday though so things will probably change again!

On the 6th Ayden had an EUI with Opthomology. As you know, we were very nervous and always have it in the back of our minds that he may need to return to Michigan. But this exam actually brought good news for once! The Optho told us that both retinas were now attached, no blood was evident in the eyes, and the glaucoma was beginning to resolve. He also said that talk of glasses will be next. I was so shocked when he told us all this all I could say was ..."wait if he needs glasses that means he can see something right?"... The Doc laughed at me and said "Yes we are pretty certain he can see something"... We were on cloud nine for days after this!

But always with the good comes the bad right?

So the day after his exam he had another speech eval. This didn't bring as much happiness as we had hoped. When going into speech we thought that some improvements would be made towards helping him take a bottle well again. No such luck! Ayden has been fighting the bottle for months and months now right?...Well the last month had been the worst really. He had dwindled down to taking at the very most 15ccs in a feeding. So when the Speech Therapist tried to give him a bottle he threw his normal temper tantrum as soon as the nipple touched his mouth. The therapist then told us to stop trying to bottle feed all together. She said that this may make him more adverse to eating anything and it could make things worse. So now we are tube feeding everything. This is such a huge setback & I feel like we are at a stand-still. We need to find something that he will take my mouth not just say stop bottle feeding and not work on something else! It it just so frustrating...

So we now know that bad news travels in twos...or usually threes in our case...

Just a couple days after his Speech eval. Ayden had his 9 month well check up & 6 month shots at his Pediatrician. So I was baffled when they actually gave me a survey/checklist to fill out to assess what Ayden does with movement and developmentally that is supposed to be for a normal/full term 9 month old. I'm sitting there filling this checklist out feeling like screaming just thinking about the idea that even being given a checklist for a 6month old let alone the checklist that was right in front of me. As I marked NO on each question all I could do was cry a little. If this wasn't bad enough, when the Doc examined him they said he is already showing signs of CP but mostly on his left side. Upon this news we were referred to another specialty clinic and we finally got referrals for PT and OT...Until now Ayden has only seen PT& OT in Cincinnati when he was in their NICU...For the life of me I honestly do not remember PT & OT ever really working with Ayden when he was in Dayton and its pretty unnerving!

So this week we finally went in for a PT & OT eval. but didn't get much good news either. Ayden doesn't extend his legs completely and is showing more tightness in his left than his right. He reaches and grasps for things when he hears a noise or sees a color that he likes but it takes a short while to get a hold if things. He shakes rattles like they are going out of style and brings them to his mouth but has a harder time keeping hold of the items in his left hand. When placed on his belly he lays there like a zombie. He works vigorously to get a hand in his mouth but does not move at all once it is in there. He will only lay with his head to his left side and if turned tot he right he will lift his head and put it back to the left. He isn't showing any reflexes in his legs and shows little movement when stimulating his back or neck. So after all of this, the therapists say that he needs both Pt & Ot 2 times a week. Now with this along with all of his other appointments we are really never going to have time at home. I am wondering if this is too much therapy for him to handle but we will see how he does once we start this vigorous series. Hopefully this will help him get on track with his adjusted age. Now to try to get that much therapy passed through our insurance is going to be a rough road too!

So this week to come Ayden has a GI appointment, another airway procedure and another ABR to confirm his hearing screens.

So now onto the happy...non medical stuff...

Ayden has begun to smile and laugh often now. His laugh sounds like a whimper from time to time and is very soft but it is the cutest thing ever!....When he laughs and smiles it takes over his whole face. I didn't realize just how big his mouth was until he started laughing!...He is finally happy!...and he is showing it!

Isn't he just soo cute?

Weekly Height/Weight update: 13lb 7oz 23 1/4 in long!.....Hes finally outgrowing his 0-3mos clothes!

Weeks 35-37....Long weeks...lots to report!

2010-04-25T21:54:00.000-07:00

(Look I caught him in the act!...Little booger never has that dang cannula in his nose!...he also has to have something in his mouth at all times!)...Doesn't he look so angry tho?

So...I know it has been quite a while since I have posted but things have been pretty hectic. Between all of Aydens appointments and making all of the plans for our wedding I have had no extra time to get online at all. Ayden has been having issues back and forth with diarrhea and now constipation. We had several visits to the pediatrician for diarrhea and a few cold symptoms but new or different regimens are never given. He is still on 28cal Pregestimil and is finally steadily gaining weight. One of the nutritionists at Cincinnati Childrens' actually mentioned that he may be gaining too quickly now but decided to leave his feedings as they are and let his GI doctor decide whether or not to make any changes to his diet and such....His first outpatient GI appointment is on Tuesday so hopefully things go well.

You know, when I let too much time pass by between postings I find myself leaving a lot out!...lol...So please excuse me if I jump around quite a bit :-D...

So first and foremost, since we have been going to Cinci for the ML&B and scrapings every 2 weeks we are beginning to find a bit of a routine finally. At his last procedure things went pretty smoothly and he only had to stay in the hospital over night. He has next procedure on Wednesday and we are hoping for this one to go just as smoothly. In addition to the ML&B they told us that they may do a pH scope while he is calm after the surgery to test just how under control his reflux really is. I guess we might as well get to use to these frequent trips to Cinci as the ENT doctors say that the polyps usually do not slow down until the child is around the age of 7. Boy do I hope things slow down before then!

When it concerns pulmonary, Ayden seems to be staying at the same point. The pulmonologists all say he sounds really good for a baby with "chronic lung disease"....They said that after his last ML&B that there was a little more air trapped in his lungs than they like to see and was sounding a bit more wheesie and so now they are having us give him albuterol treatments to see if this will help him at all. I dont see a difference yet but maybe it takes a while to show the improvements. He is still on 1/8th of a liter of oxygen but his Pulmonologist as well as his pediatrician have mentioned getting him off of it completely by fall at the latest. Crossing our fingers in hopes of improvements in that area as well!

Ayden had an opthomology appointment this past week but we didn't find out any more news because Ayden refused to allow the doctor to get a good enough look. Ayden was so ticked off about the exam that he was kicking, screaming, punching and clawing anyone who touched him. And so, now we have to go back to Dayton on the 6th into the OR so that they can put him to sleep in order to get a better look. His last exam was in Cincinnati in the beginning of March and it had shown that the eye hadn't developed any further after his laser surgery but the ROP had not returned. We are patiently awaiting what this new exam will show!

Now for the big news!....We have been waiting so patiently to know where Ayden falls when it concerns his developmental delays. We have still not been able to get into the Developmental Clinic at Dayton so we have not started official assessments or any therapy but he was assessed by Help Me Grow and BCMH.

His assessment through them was on April 12th (Ayden was 4 months adjusted at this time) and their assessment showed that his abilities were on the following levels:

Cognitive:............3 months

Language:...........2 months

Gross Motor:......2 months

Fine Motor:........3 months

Social:..................2 months

Self-Help:...........2 months

The specialist who assessed him was actually pretty surprised how interactive he was amazed by how much he moves. She said this is vision issues my be one of the biggest things holding him back at this point!...Hopefully we get similar results at the Developmental clinic and we are able to find ways to help him catch up as I know the older he gets the larger the gap of developmental delays get as well.

Ayden now weighs 12lb 8oz but has still remained a mere 22in long!

Week 35....Eating all but the bottle!

2010-04-10T20:15:00.000-07:00

This past week has been pretty amazing. Ayden only had one doctors appointment this week and so we finally got to spend more than a couple days at home with him. I think he has finally adjusted & doesn't seem to get as overwhelmed by noise as he had been. For some odd reason he resists taking a bottle even more when there is a lot of noise around. He doesn't mind the sound of the TV but if there is conversation going on he refuses to eat. Of course this isn't the only time he refuses the bottle but noises surely do speed up his frustration with bottle feeding itself. I had hope that his feeding issues would resolve as his airway issues were handled but to no avail. Some feeds he refuses to even let the nipple go into his mouth while other times he will suck down about an ounce & then be done with it. I really don't understand how it all works or what is causing all of the feeding issues. He surely doesn't have an oral aversion. He is infatuated with his binkie and his hands. He has now progressed into grabbing anything he can get his hands on and putting whatever it is into his mouth as well. The cannula seems to be one of his favorites at the moment. He has been ripping the entire cannula off of his face and stuffing as much of it into his much as he possibly can. I am convinced that he only allows the cannula to do its job about 10-15% of the time as even when i check on him at night he either has it in his hand cuddling with it or he has found a way to pull the prongs into his mouth. He is just such a character already!

Just let me tell you how spoiled he has already gotten....When his daddy is home he acts like a perfect lil' angel...Will sleep mostly through the night and doesn't fuss a whole lot during the day....When daddy isn't around its another thing...He likes to keep me on my toes for sure!....He will be up all through the night and day unless I am holding him or at least holding his binkie in for him. Even if he has been sleeping in my arms for an hour if i go to put him in his pack & play he will wake right up and scream...lol...its funny b/c he knows he has me wrapped around his lil' finger but its soo not funny when it concerns just how exhausted it makes me. Hopefully he will lighten up on me soon!

As for medical stuff...Ayden visited a new pulmonologist this week who was pleasantly surprised how "good" his lungs looked for a former micro-preemie with chronic lung disease. The doc didn't change anything & we will not have to go back for another 2-3months unless there are complications!....This week coming up will be much more eventful than last as he has visits from Help-Me-Grow, and BCMH and he has go to back to Cinci on the 14th for another airway scrapping. This every 2 weeks seems a bit much right now but I'm sure we will get in a routine pretty soon. Ayden also has an opthomology appointment, his next set of shots, and appointments with his GI doctor this month. We are still waiting to hear back from the developmental clinic to see about getting the assessments that will determine how far behind he is and just how much therapy he will need. We are very anxious to know the answers to these questions!

Growth Update: Ayden now weighs 11lb 2oz & is 22.25 in long!

I promised some new pix and so here they are :-D

Week 34: Changes & Surprises...

2010-04-03T21:04:00.000-07:00

So Ayden's last airway surgery went well but he has unable to let go of his oxygen and so he was kept until Wednesday evening rather than being discharged the next day. He is now being watched by the pulmonary doctors at Cincinnati and is back on oxygen. He is back on 1/8th liter and seems to be much more comfortable breathing than he had without it. Although we loved not being attached to wires and such we always knew in the back of our minds that he needed just a little bit of flow. He always just seemed to be working way too hard. This transition has been quite hard as now when it is just me and Ayden home alone I have to find someone to help carry the concentrator down stairs or be confined to our bedroom all day and go stir-crazy. I have a feeling I will be having many stir-crazy days to come!....Meanwhile, Ayden doesn't mind being confined to a room with me. As long as he is being held or talked to he is perfectly content.

Upon Ayden's arrival back at home this week he has begun to smile and coo and has even chuckled a time or two in response to our voices and touches!...It is freakin amazing!...I have to admit I felt as though he was never going to show any signs of happiness. Although he smiles for me a little, he smiles more for others tho. I still seem to be the only person he clams for though. I just wish he would show the happiness towards me more rather than just showing the comforting affects.

Ayden also went to see the Easter bunny this week because when he was in the hospital the bunny neglected to come to his floor :-(....Of course the photo we got from the mall was horrible but at least we have one to show later. He made the man in the costume very nervous as he coughed and began to act as though he was going to throw up...needless to say, the photo was very awkward looking to say the least!

Another amazing thing that amazed us this week was geared towards Ayden's vision. Of course we have heard time and time again that he would be blind and all we could hope for was for him to respond to light...Tonight before we were going to put Ayden to bed A.J. was playing with him a bit and trying to get a response by playing with his binkie. Instead of following it according to the touches he felt on his face, Ayden tracked it with is eyes from one side to the other! At first we thought it may have been just a fluke or a coincidence but he followed it another 3 times with his eyes and a 4th and 5th time by opening his mouth and turning his head as it passed by as well. It seemed as though he was thinking "where are you taking it?...It should be going in my mouth!"....It is still unbelievable and I am still in awe by it but we are trying to not get our hopes up too high about it....It just seems too good to be true!

Hopefully this next week continues to bring as many happy moments as this last week has!....We are just so giddy with excitement!

I have lots and lots of photos to share but no time to post them now...Just thought Id post a quick update & share our excitement!

It was a Long week...But he is HOME!!!

2010-03-27T20:19:00.000-07:00

I know these pix are a lil late but things have been pretty fast paced lately. Have not had much time to take any photos at home yet so here are some from before he left Cinci & some from his couple days home last week...I don't think he has figured out whether he likes his swing or not tho!....

Ayden was trying to figure out Lilly but she didn't want anything to do with it!

So we were in the NICU @ Dayton way longer than we had expected...He finally came home on Friday evening but at least this time he was able to give the correct goodbyes to the people who have watched him grow from an itty-bitty peanut into the big boy he is today!...Although he didn't give the proper goodbyes to his favorite night nurses we are going to make sure to come them (or they come to visit) soon!...I have pictures from his departure that I will post later if I can!....

So since Ayden has finally come home he has not slept much at all. It seems as though his reflux has intensified and he is coughing and gagging when he is laying down. They have upped his dosage of Prevacid since he has gained weight so hopefully things improve soon! He went to his new pediatrician today and he said that he doesn't seem to be grossly delayed so far in spite of all the barriers he has been faced with. It seems as though his sight issue is the biggest problem that is causing him the most delays thus far. Of course this was just a quick assessment from a Doc who has never met him before but I thought it was some good feedback!...We will be getting things set up to attend the developmental clinics and are searching for more early intervention programs as well. As for right now we are prepping for Cinci on Monday and then have lots and lots of appointments set up to get the ball rolling as an outpatient. A new stage of his journey has begun!

p.s: Ayden now weighs 9lb 12oz & we are beginning to retire his newborn clothes!

Weeks 32-33...Going home was just a tease...

2010-03-22T21:13:00.000-07:00

So, this week began with lots and lots of good news!....Ayden FINALLY came home on Thursday afternoon (and we got to close on our house this week). He was not too enthusiastic about his car seat or all of the bright lights he saw when he got to go outside... (Sorry no pictures…A.J. decided to pack my cameras and even my phone into the trunk of the car before we left the hospital)…The first day home was filled with lots of adjusting and settling in. In addition to the change of scenery Ayden also was able to meet his Great Grandma and a couple aunts and uncles as well as his little cousin Lilly. He didn’t seem too impressed by anyone but sure was trying to figure out Lilly! I know some fun times are sure to be had with their interactions in the future! The first night with him home was pretty difficult for me to say the least. Although he is a good baby who sleeps most of the night, this was the first time for him to be off of monitors and so I was extremely nervous!...I woke up every 15 minutes to check on him and reassure myself that he was still breathing. A.J. had to work through the weekend and slept in the spare bedroom to ensure that he would get enough sleep, and so I was faced with this experience alone. Boy was I nervous! The first night was filled with discovering the ins and outs of the feeding pump and figuring out the perfect schedule and techniques for administering his meds. Overall, things still went pretty smoothly for it being the first night home.

On Friday Ayden had his first appointment with his pediatrician and he seemed to feel more at home there than he had at home with us! He was cooing and sucking on his hand as he was lying on the exam table. When they tried to weigh him he seemed to be wanting to turn around and climb off the scale though…The pediatrician asked if he could roll over even!...I assured him that he couldn’t and he told me that it shouldn’t be too much longer if he keeps doing what he is doing! The rest of the day Friday was pretty relaxed. And, with the help of my and A.J.’s moms I was able to get a little sleep between his feeds. When A.J. got home that evening I let him try to do some of Ayden’s care but nothing seemed to go smoothly. Ayden was a bit fussy and A.J. tried to come up with anything and everything to satisfy him!...Everything from changing his diaper and outfit to giving him his pacifier and venting his belly but even those things didn’t go as planned. When he tried to vent his tube A.J. used a new syringe and forgot to take the cap off of the bottom of it! Finally he asked to just give him a snack after hearing him fuss for nearly 45 minutes & then we remembered he was on a 3 hour feeding schedule now rather than a 4 hour…The funny thing about it is that Ayden was fussing nearly an hour before he was due to eat… Even after all of that he was still fed right on time!... I think he was just testing us!...

Saturday it was just me and Ayden at home all day….He slept an awful lot and when he was awake he only wanted food and cuddle time. I wasn’t complaining because it allowed time for me to take a shower and get some house chores done (which all moms have told me is a big feat when you have an infant at home)… As the day progressed he became much more irritable and took less and less of his bottles. He had been coughing and gagging for several days before he was even released from the hospital and we were told that his stomach just needed to be stretched back out…By Saturday things had not improved in that department and he was acting as though he had a stomach ache and he was having large loose stools that were soaking through his diaper. By the time A.J got home from work and we ate dinner, Ayden was inconsolable and was struggling (and retracting) with his breathing. We immediately drove to Dayton Children’s to the ER. They hooked him up to the monitors, ran some tests, did an x-ray and everything looked fine aside from his respiratory distress. They put him on some oxygen and let me hold him to calm him for a while. His respiratory rate dropped back down to a comfortable rate until I attempted to lay him back on the bed to change his diaper. It seemed as though he was only comfortable when his belly and chest was up against me. Once again, I held him to calm him and waited for them to run more tests or tell us what the plan was. When they returned they said they were just going to send us home with Pedialyte and Tylenol and to just watch him closely but when he was taken off the oxygen and we went to put him in his car seat he desated and they said we would need to stay overnight to be monitored.

He was readmitted into the NICU and remained on a half a liter of flow until today(Monday) at noon. When they would come to his bedside he would be sating good and his cannula would be either between his eyes or in his mouth and so they realized the o2 wasn’t doing much for him. Aside from the o2 the only additional regiment they were giving him that was different from home was a dose of Tylenol here and there to calm him down. Although, they did change him to 26cal formula to see if his diarrhea would clear up things still seem the same. It has now been 2 full days of being back in the NICU and literally nothing has been discovered as to the reason behind his little episode and his is back off of his oxygen. The pulmonologist came to evaluate him today and once again assured us that there was nothing he could do for him. And so, as long as he continues to do well without oxygen overnight tonight he will more than likely be going home with us tomorrow since his follow-up appointment in Cincinnati will be on the 29th. It still makes me nervous to not know what his problem was but being in the hospital is not helping him either! Hopefully his next stay at home is a little less eventful and we are finally able to enjoy every moment with our little man! Wish us luck for his coming home and his next trip to Cincinnati!

p.s: Ill add some pictures of my cutie between my next update!...Maybe this next week will bring some happy times and some more precious pictures of my handsome 'lil’ man!

Ayden's Weekly Growth Update: Length: 22in Weight: 9lb 6.5oz

Still Waiting!..Coming Home?

2010-03-15T20:54:00.000-07:00

So, we are still unsure as to whether or not Ayden will be coming home this week but he is still doing well. He had his 2nd hearing test this week and he actually passed!... They said his hearing is within a normal range & he will not need hearing aids or anything of the sort!...It kind of upsets me thinking of the audiologist at Dayton refusing to do another test knowing how worked up he had gotten... He is still off oxygen and his feeds will be transitioned to bottle/bolus feeds during the day and continuous at night. Tomorrow he has his ml&b to get rid of more lesions and to determine how often he will need to come back for treatments. How he does during this surgery and how well he re coups afterwards is the determining factor as to whether he will come home this week or not...We are patiently waiting to find out!

Meanwhile, this week Ayden has been a lot more active than he has ever been before....He found out how much he likes his hands!...He is a binkie fanatic & when his binkie isn't around he goes a bit crazy!....

I know I'm biased but I just think its the cutest thing!

-----------------------------------------------------

Here are some bare faced pix of my lil cutie too!

I love him sooo much!

Week 31....Improvements!

2010-03-12T00:59:00.000-08:00

I know I was late on posting the last blog entry so this one is coming a bit earlier. The day after my last post Ayden was taken off of oxygen & has remained off since. During Ayden's last trip to the OR things went very well. He didn't even need to be intubated for the surgery itself!...Mr. Man is very happy to finally have a clean/bare face but seems to be trying to rub his nose off now. He has been transitioned to continuous feeds to help with weight issues and he has slowly began to gain some of his weight back...He is now up to 8lb 8.5oz... They try to bottle feed 4 times a day but he does not eat well for anyone but me. They said we can start trying to PO all feeds during the day tomorrow and will just use the g-tube for the amount he doesn't take. He will still be on continuous feeds at night but hopefully this will be a reasonable schedule that works for him. Finally having a sense of normality will help us all!

So, he has another bronchoscopy and airway surgery on Monday or Tuesday and if everything checks out well they say we could go home on Wednesday or Thursday!...We will have to come back every 2-3 weeks for check-ups but at least we will have a little bit of relief!...I am trying to not get my hopes up as each time they tell us he may go home there is more setbacks...But, even if we have him home for Easter we will be ecstatic!

He still hasn't had another hearing screen but they have examined his eyes. They said his eyes are unchanged and the eye doctor here at Cincinnati did not even note a cataract. He will be reexamining to see the progress of glaucoma but we are happy to know his ROP has not progressed. He was finally given his 4 month shots tonight and will get his synergist shot next week sometime. This next week is going to go so fast & I am so anxious & nervous to see how things will go!

Crossing our fingers in hopes of good reports and a homecoming in our near future!

Week 30....In Cinci & feeling feisty!

2010-03-08T23:26:00.000-08:00

Sorry it has taken me so long to post...things have just been so hectic!...

This week has been anything but smooth sailing…The transition from Dayton to Cincinnati was rough to say the least. The most difficult part was leaving the nurses and other staff at Dayton that we have grown to love so much. Before we left I made Ayden’s primaries do a photo opp with him!...We <3 them & miss them already!

Jenn

Jess

Michelle

Although things are so different in Cinci, we have begun to settle in. He even already has 3 nurses who asked to sign up to be his primaries…My ‘lil’ man must just melt the ladies hearts :-D … As for the trip to Cinci, Ayden didn’t mind the ride but was rambunctious when they attempted to get him settled in and calm when he got into the NICU. Part of his attitude came from the lack of medicine he was given. Ayden had been on Fentanyl and Versed drips since his surgery on the 15th but during the transfer Cincinnati refused to use his meds from Dayton and his drips remained off for about an hour and a half. Needless to say, Ayden became a wild man and threw a fit! When they finally got him caught up on his pain and agitation he was still so mad about the tube that he had to be restrained. The second day of being at Cinci the doctors tried to change everything. They attempted to persuade us to allow them to completely stop his drips and begin oral alternatives for the same types of meds. Ayden has built a tolerance to a number of meds and introducing him to new meds just to wean differently is not something I am going to let happen. And so, we avoided another unnecessary change. Ayden has now been weaned off of all of these meds even without the weaning method they had tried to persuade us to follow.

So, when it concerns airway, on Thursday he finally got his ENT/Pulmonology Consult and got a more precise/ hi def scope done. They found that the lesions in his airway are in fact papoloma and they were able to shave of all of the lesions on the left side of his airway. They plan to go in and shave off the lesions on the right side on Wednesday afternoon. We also had the best news ever after this last procedure!...Ayden is not going to need a trach!...His tracheomalasia is mild and the doctor said that it doesnt seem to affect him!... :-D ...So...On Friday they were able to extubate…he started out on 6 liters and is now on 1/4 liter high flow at 21%. They plan to take him off oxygen completely tomorrow to see if he tolerates it. Hopefully he doesn’t need to remain intubated after his next procedure.

Meanwhile, Ayden has been having problems gaining weight again. He has actually lost quite a bit of weight. To see if they could help him grow, the doctors have rearranged his enzymes to the point where he gets it with each feed and they have now placed him on continuous feeds but are allowing him to bottle feed 4 times each day. This all happened so quickly though. This morning they were just giving him tastes of milk on his binkie and a couple drops of milk squirted in alongside it two times a day. But by 2pm they let me try to give him one hour’s worth of milk. And so, now 4 times a day they allow us to stop his feeding pump and give him a bottle. He has been sucking down the 22ccs in only 5 minutes or so! Hopefully this is a sign that he may not need the g-tube forever!

Ayden is also supposed to have hearing and eye exams this week to check up and confirm the previous testing done at Dayton. We are hoping that things are not progressing within his eyes and we are able to find out what exactly is going on with his hearing. Since the previous hearing test at Dayton didn’t go as smoothly as it was supposed to, we are anticipating different results since they are going to give him meds to calm him down. From the way he responds and interacts we do not think his hearing loss is as bad as they had told us and are hoping for confirmation of this soon!

Weekly length/weight update: 8lb 5.5oz & 20.25” long

Ayden & his Daddy!

Ayden & his Daddy!

Hopefully this next week finally brings some good news!...Wish us luck once again & please keep Ayden in your prayers!

Week 29...On the tube & on the move

2010-02-26T21:16:00.000-08:00

This past week has been so hectic and stressful. Ayden still remains intubated and is hating every second of it. They have been trying to keep him pretty sedated or retrained all week in order to avoid an accidental extubation. Even with these precautions he managed to extubate himself this week with his rapid head movements that he does when he is being retrained. And so explains the never ending cycle...

When it concerns his g-tube, it opened up and they began feeds. He finally got back up to full feeds and 24 calories. Full feeds went good but when they progressed to 24 calories he began to spit up more often. When we noticed this it was at the point that he was going NPO for his bronchoscopy. Since they began the 24 calorie formula Ayden has been losing weight consistantly...He now weighs 8lb 5oz (down from 8lb 9oz) and if finally 20 inches long!...I have a feeling his newborn clothes aren't going to last him much longer... :-D

And so, onto the brochoscopy & results...I was waiting to write this post until I found out the results of the bronchoscopy. It didn't reveal any good news or give us any answers. Once again we hear the statement that they "have never seen anything like it and are unsure as to what it is or how it happened"....I just don't get why Ayden is always the exception or always has to endure the worst case scenerio....(the doctors tell me now its because most 23 weekers don't make it this far and so there isn't anything to compare his issues to)...So, the pulmonologist says that there are three different possibilities but what they found is not typical for any of them. They found lesions on the top of his mouth at the back of his throat, as well as around his vocal cords. They said that when he breaths that these areas collapse and block his airway. In addition to these lesions he also has Tracheomalacia(softening of the trachea in which the airway closes down when taking a breath). After these results were found, we were informed that he will be transferred to Cincinnati Childrens for more tests and probable airway surgeries. He will be transported on Monday morning and we have no idea how long he will have to be there. The more serious the condition, the longer the stay will be :-(....

When it concerns his hearing...the ENT consult was put in and requested numerous times but the exam was never done. We will be requesting one when we arrive in Cinci as well since the ENT specialists will be the ones who follow him there for his airway issues already. Although no additional testing or examinations were done, the audiologist re-examined all of the previous data and told us that his hearing loss was in fact Sensorineural hearing loss and not just fluid or something of that sort. His hearing aid paperwork has already been started and now all we have to do is wait for another more detailed exam.

On a happy note...I officially became an Aunt this week...My beautiful little niece Lilly was born on Feb. 24th weighing 7lb 6oz...Here is the birth announcement i made for her :-D

Isn't she beautiful?

Here are some pix of Ayden this week as well...he has not been a happy camper!

I hope next week goes a bit more smoothly than the past few weeks have been...
...Off to Cincinnati!!...Wish us luck!!

Extubation failure & chest compressions

2010-02-16T19:49:00.000-08:00

So, literally minutes after posting my last blog post the doctors decided to attempt to extubate Ayden. They said that he was breathing over the vent and they thought he could do it without it. OOOHHH but were they wrong!... First they just let him breathe with a form of cpap through the tube to see if he would breathe before they took the tube out. He seemed to be taking breaths even through the small tube they had in. When they took out the tube he did not breathe. He clinched down his airway and held his breath. The RT prepped to reintubate and attempted to take a look @ his airway. When looking she could see nothing and could not secure a path. Ayden was clenching down his airway and there was another obstruction that they could not identify. Ayden's heartrate dropped as he held his breath and he began to turn grey and purple...So many people rushed to the bedside that I was guided out of the way and taken to another room to calm down. After numerous tries from the RT & the neonatologist they were finally able to reintubate. But, when I was taken away Ayden's heartrate dropped to 0 and they had to perform chest compressions for a little over a minute. I thought this type of stuff was over!...This was definitely a big setback!...We will definitely not be going home within the next 2 weeks!

So, orders for a Pulmonology screen and an ENT(ear, nose & throat) exam have been placed. Hopefully with the next week pulmonology will help us understand what the obstruction in his throat is. (the Neo seemed to think that it was some kind of calix that has formed--calices near the trachea are more cauliflower shaped rather than flat). The ENT exam should tell us more about his hearing issues as well...We are crossing our fingers in hopes that it is just fluid that is causing the interference.

Meanwhile, Ayden has began to swell pretty bad and his lil manhood seems to be taking the worst of it...With all of the swelling his urine output had been dangerously low but has begun to increase and he has been pushing his catheter out with his urine. I guess this is a good sign.

So, there is not many signs of relief and our excitement for him to come home soon has been depleted..We definitely have more questions than answers right now....Poor lil' man can never get a break...Will he ever be able to come home?

Surgery is done...now to recover!

2010-02-16T12:44:00.000-08:00

So yesterday was a very long day & I was way too stressed to post anything. I was no stressed that I thought I was hungry and so I ate and ate until I figured out that it was just nerves...I have not done that to that extreme since Ayden was first born. And I wonder why I have not lost enough weight lol...

So, the surgery went just as planned minus one thing or another. They placed the g-tube but did not do the fundo (a band @ the top of the stomach to help reduce reflux). The hernias were fixed without any problems. But while the surgeon was in there he found that Ayden's left testicle was ascending and so they put stitches in and a button to bring it back into place. This procedure went ok but did not last & the botton came off within an hour after being brought back up to the NICU. I guess they will do the same procedure again sometime before the age of two. He got his circumcision as well but it looks very gruesome. He is still intubated, has been given a blood transfusion and is having a hard time with pain. They have upped his fantanil drip and has given him numerous spot doses of 3 different pain meds. They have cathed him and given him numerous bolices to help him get out the urine as well. He is not a happy camper. He has begun to swell quite a bit & seems very uncomfortable...Poor baby boy is having a rough time. We are hoping the pain gets better and he starts to improve soon. Here are soem pre & post opp pix as well as some happier shots from valentines day!

Pre-Opp

Post-Opp

now for some happy pix...

We had a Happy Valentines Day!...look @ my lil cutie pie!

Bath Time b/c he peed all over his real Valentines Outift!
Mad After his Bath!

pics pics pics!

2010-02-14T22:21:00.000-08:00

I know its late but I can't sleep because I am so nervous for tomorrow....I have to be at the hospital by 7:30 but my mind won't quit racing long enough for me to fall asleep...& theres not much to report so here are some pix of Ayden. I don't have the cutest ones on my computer yet but here are some from the last week or so... :-D

I will probably post more photos during Aydens surgery to take my mind off of it as well...So, I have been attempting to make different elements and layouts for digital scrapbooking & this is the first one I have made from scratch without other people's elements...let me know wat u think :-D

Here are some more pix of my lil monster!

Week 27...Hearing tests & an angry boy

2010-02-11T11:47:00.000-08:00

So this week has been hectic to say the least. I know it seems as though all I ever have is bad news but really we never get any good. His surgery has been rescheduled 3 different times already. If no further changes are made, he will be going to surgery at 9am on Monday. Aside from surgery plans and upping his calories from 20 to 23, this week there were not any changes made in his care. He is still on Progestimil and hating every second of it. Ayden throws tantrums during nearly every feed and takes less than half of what he is supposed to. He has been steadily gaining weight and so his minimum intake expectation is now 85ccs every 4 hours. The last couple days he will have a good feed and eat 50ccs one feed and then eat only 30ccs the next feed. I think he just likes keeping us on our toes! Today they mentioned finding a similar formula that tastes better or to find a flavoring to put inside of the formula itself. We will see how that search goes within the next couple of days.

The enzymes are still giving Ayden's bottom issues and none of the creams they have been using have been helping. The doctors said they are going to search for a different type of ointment for that as well. Meanwhile, Ayden is now up to 7lb 8oz & is 19.75 inches long...He is just looking so big now!

Last week I mentioned that they had had some issues with Ayden's hearing tests and we were a bit clueless as to what was going on. Well, yesterday they did another screening and they came back to say that he had moderate hearing loss and he will be examined by a doctor. If the next test comes back the same he will be fitted for hearing aids before going home. All of the nurses say that unless the baby is calm and quiet that the test results are not very accurate. During his test Ayden threw a tantrum, threw up profusely, held his breath and bradied for the first time in months. They will be doing another test after his surgery on Monday while he is still sedated. After that exam we should know more about what to expect for his hearing.

Yesterday was probably one of the the worst days Ayden has had in a while. He threw up his entire feed three different times yesterday and over 100ccs of air was drawn off his stomach numerous times. Late last night they ordered a belly x-ray and said that he just had a lot of air in his belly. My question is...how does a baby his size get that much air in his belly? He gets less than 3 oz of formula every 4 hours & 4oz of air is being drawn off of his stomach in between feeds. There is something going on that they are not finding!

So Ayden turned 6 months old on the 5th and I completely didn't mention it in my last post. I did take some photos of him on his big day and I will post them later! I can not believe it has been a half a year since my precious man came into this world!

Wish us luck for Monday! Next week is a big week for our lil man!

Week 26...Fussy Fussy Man

2010-02-05T00:47:00.000-08:00

This week didn't bring many changes for Ayden other than in his personality. I am not sure if it is the fact that he hates the taste of his formula, that his throat is sore from enzymes, that is little bottom is so raw that the open sores bleed all the time, or the fact that he is just getting older, but Ayden sure has been fussy this week. He has began to stay awake in between feeds more often and is beginning to make more sounds other than crying and grunting. He has not progressed into happy sounds but more whimpers and higher pitched squeals and grunts have been coming out. We are hoping that the "coo"s will be coming around shortly as he seems to be responding with whimpers when we talk to him when hes mad.

This week his feedings have gradually gotten worse. He has taken anywhere from 5-40ccs at most when his minimum is 80 for his weight. He acts hungry before and after he takes his bottle but has been gagging, screaming, and throwing his body around when the bottle is placed in his mouth. I just cant figure out why he is being so temperamental about eating. I feel like the g-tube is a good option for him but I don't feel like it is an answer to his problems. He used to eat 60-80ccs when he was only required to eat 40-50ccs and now he is not even eating half of what he is supposed to now. I want explanations as to possible reasons why he is acting this way and not just a crutch to send him out the door. Don't get me wrong, I am ecstatic about bringing him home but I feel like we don't have a direction of which to take to help improve his feedings even with the g-tube once he is at home.

Meanwhile, It seems as though his enzymes are doing their job. He seems to be getting a bit burnt out on his applesauce but still does well with it overall. His weight has been stable and has been gaining and losing each day for the past week....The highest he has been this week was 7lb 4oz but has lost and gained numerous times. He now weights 7lb 3oz and is 19.5 inches long. The enzymes are helping with nutrition and weight gain but have taken a major tole on his bottom. His little booty has so many open bleeding sores and no cream they have tried has made any improvements. Now, 1-2 times a day we change his bottom and leave it open to air or give him a sitz bath. Not many improvements so far but any day that we don't see blood in his diaper we are a little bit relieved. I have a feeling that this has a lot to do with his recent temperament though.

Within the past week he has also had numerous eye and hearing exams. They have not said anything bout changes in his retinopothy but they have become very concerned with his pressures. In terms of pressures, high pressures in the eye usually is connected with glaucoma, we are still waiting to hear more about this as that have checked him every day for the past 5 days. In addition to the high pressures they say his cataract is still progressing but we still have a while before a surgery for that is in the works. We are still crossing our fingers in hopes of him having some vision in his right eye but for now it seems as though he doesn't see much as he rarely ever looks at anything other than lights. This week they tried numerous hearing exams but said there was too much interference. I am unsure what that means but they are supposed to try again within the next week or so. Even though it seems as though he hears we want to be certain before he goes home. One of the reasons we are so concerned with the hearing factor is because Ayden's daddy is deaf (he has about 85%-90% hearing loss) and his family did not find this out until he was almost 3. To me that is a long time to go without noticing a disability as prominent as that. I want to know anything and everything that even seems the slightest bit odd about Ayden as to prepare ways to help him overcome anything that may come his way.

So, Ayden's big g-tube surgery is supposed to be next week but we are still unsure as to which day it will be. The surgeon told us that it would be a 3-4 hour surgery as he will have 3 hernias repaired, a circumcision, and his g-tube placement. The neonatologist told us that he would be coming home within 2 weeks after the surgery. We have waited for this for so long and now that the time is coming I am beginning to get nervous. My biggest fear is getting his medicines mixed up or not keeping on schedule with them and I know Ayden's daddy will not be much help in that aspect. He refuses to read directions and can not be on time for anything. With as many medicines as he will be getting and the equipment he will be coming home on we will have lots of training to go through within the next 2 weeks as well. Nervousness has definitely set in!

Wish us luck & please pray for Ayden in hope that his surgery will go smoothly...

On a more solemn note:...Last week was quite hard in a different way...One of Ayden's neighbors passed away. She was a 25 weeker who was about a month and a half old. She had been doin significantly better than most of the other micro preemies I have seen that early on(was already on a high flow cannula) but things turned for the worse after her pda-ligation surgery and she passed away. My heart goes out to her family during this time. RIP Jazmyne...you were very loved & will be missed!

Weeks 24&25...Changes Changes

2010-01-29T23:40:00.000-08:00

So during my last post I explained Ayden's complications with feeds and coping with enzymes. This past week has given no relief to these issues. The enzymes gave him issues again and again. Attempts to mix enzymes and place them down the NG tube seemed to prove problematic and so the type of enzyme he is being given was changed from a powder to a more of a pellet form of enzyme. In addition to the change in medicine the dosage was changed as well. Instead of having enzymes every 4 hours, he now only has to have them every 8 hours. These changes seem to make him much happier and seems to break up the monotony of it all for him.

In addition to these changes they have been working on getting Ayden fully transitioned onto formula. At the beginning of this week he was at 30% Progestimil and 70% Donor Breastmilk, as of today(Friday) he is now at 100% Progestimil. This was such a fast transition this week and we have been on pins & needles the entire time. So far he seems to be tolerating it but seems to hate the taste of it. Before they figured out the enzymes he was having major difficulties gaining weight but that all seems to be under control.

Meanwhile, this week Aydens broviac began to have issues. It seems as though it grew out of place and began to infiltrate when they would hep lock it. The morning after they realized this they removed it. They had always told me he would need to go down to the OR to get it removed but to my surprise they were able to take it out at bedside and did not even need to put him under any anesthesia. They put a peripheral iv into his scalp(the nurses seem to like this spot for IVs and to draw labs b/c its so squeaky clean & the veins are so easy to see because of his lil bald head) for his fentanol and he was a happy camper. When it concerns feeds, he has went from eating 60% of his bottles to only eating about 30% within the past week and a half...The doctors seem to be clueless as to why he doesnt want to eat. Some are blaming it on his chronic lung disease and some are saying it may be his pvl....who knows, but he has been started on a 7 day countdown (he is on day 2 or 3) and if he doesn't start taking all of his bottles they are going to schedule the surgery for "g-tube" placement. I don't see him improving this much within the next 4-5 days so I am trying to prepare myself for all of this. The good news we did hear about all of this is that his feeding issues are the only things keeping him in the hospital. On Monday the doctors are going to put in for a surgical consult and start making plans for the procedures. We are expecting to get his two hernias repaired and his g tube placed all on the same day. The nurse practitioner told us today that after all that is taken care of all we need to do is order our home health care equipment and he is free to come home!...We are crossing our fingers in hopes of no more setbacks!

So this week has brought some good news and some bad but overall we are excited to be given an action plan that gives us hope that our precious 'lil' man will be coming home soon!

Another happy fact!....Ayden now weighs 6lb 15oz as of tonight!...almost 7lbs!...we never thought it would happen!

...here are some pix of my lil man from my phone...he doesnt like to stay awake or calm if i take the time to use my other cameras so these are some cute ones of him just bein him!...so yeah, he sleeps a lot

Ayden is such a trooper!

2010-01-18T08:32:00.000-08:00

There is never a dull day with Ayden. Poor boy can never catch a break....

In my previous post I had mentioned how much Ayden loved his applesauce. Well, the next night his nurse gave him pears (technically he wasn't allowed to be given this) but didn't seem to be as big of a fan as he had been with applesauce. This nurse also evidently didn't know how to correctly give enzymes either... (which I would think was a common sense type of duty considering the nature of the enzymes all together) ... So this nurse only got 2 spoonfuls of pears to give him and just sprinkled the enzyme powder on top of the spoons. Doing which of course defeats the purpose of the applesauce/pears all together because the inside of the mouth is having direct contact with the enzyme without any kind of additional coating. I watched her do this the 1st time and said something about it but she just told me that she knew what she was doing and it was ok. This was a night shift nurse and so we went home about an hour after this feeding... So 10 hours later when another nurse came on (who knew how to give enzymes correctly) and fed him he seemed less than enthusiastic about a bottle but managed to take 60ccs with a struggle...the same happened at his next feeding...

By the time his 4'o'clock feed came around he refused to wake up at first, didn't wake up during his diaper change even, but screamed when trying to start his feed...After giving him the first bite of applesauce&enzymes he began spitting out blood. It continually bled for about 30 minutes even with placing gauze at the site. An NG was placed, he wasn't allowed to take a bottle for a couple days ,he was given tylenol, and the enzymes were stopped. Soon we started seeing open sores on his bottom as well, evidently the enzymes had came out through his stool and had caused breakdown of his skin there as well. So he was in pain and was so irritated that he kind of shut down at that point instead of crying. He slept for 8 hours without even waking up for his diaper changes or assessments as they put his feeds down the NG. Somehow he managed to putt his NG out 2 times this night tho!

Saturday the doctors decided to take him off of his TPN/IV nutrition because they thought he was gaining enough weight. This is a bit frustrating because the only reason he was gaining weight was because of his tpn. His tpn was turned off @5pm. So at this point I know he is going to lose or at least not gain. So, I still cant wrap my brain around why you would stop the tpn of a baby who has a history of weight issues, who has a pancreas that doesn't work correctly, & of which you just stopped the enzymes that are supposed to help with that. When they weighed him at 8pm he had gained since the day before and had finally reached the 3000 gram mark...he weighed 3014 grams. Later that night they attempted to give him a chance to take a bottle but would quickly take 25-30ccs in about 2-3 minutes and then he would stop and fall asleep. He continued to do this until his 12'o'clock feed on Sunday where he took 65ccs. At 4'o'clock they started the enzymes back up with his feeds too. Sunday they also realized that the skin under Ayden's neck had began to break down & sluff off and was very irritated. And they started him with some powder under his neck...he really doesn't like that process! When they weighed him Sunday night he had went down to 2964 grams. Within one day of being off of tpn he had lost 50 grams already! Hopefully they realize what the issue is b/c he is definitely one baby who cant afford to lose weight. With weight loss comes temp issues again and then we would be in that never ending circle we were in in December. I hope these doctors get this under control fast!

This process never seems to get easier.

So on a brighter note...the physical therapist said that Ayden wasn't showing any signs of the spastic type of cerebral palsy and there is no tightening of the muscles yet. Another nurse had said he had shown early signs of it when he gets angry and arches his back or straightens his arms and legs as he is screaming. I never thought this was abnormal. Don't nearly all baby's do that when they are mad?...Anyways, I was happy to hear the good news from the PT!

I know I promised a picture of my lil' man's room so here it is!....

What do you think?

Week 22...Too much news!

2010-01-14T20:32:00.000-08:00

So, I have been putting off posting until things calm down a bit. I know people look for inspiration through others blogs and I didn't want to post until I was a bit more rational and optimistic about everything.

Week 22...Not so much good news!

This week started out ok, aside from Ayden not taking enough of his bottles.Ayden is still on tpn and has lots of IV nutrition to supplement his feeds so I was not too concerned. He was eating around 40ccs every 4 hours and wanted to sleep through his feeds though...

On Monday the Docs told me that if he didn't start eating a minimum of 65ccs every 4 hours that they would put an NG back down. The biggest problem with that is the fact that they are trying to transition him onto a formula and it is obvious that our little man doesnt cope well with changes. They have been transitioning him slowly (literally 1% at a time for the past 3 weeks or so) but have changed things numerous times. With starting and stopping feeds randomly I just can't figure out how they expect him to adjust so quickly. This week he is now up to 15% Progestimil to 85% Donor Breastmilk and he seems to be adjusting just fine.

On Tuesday he had his routine eye exam but some irregularities were found and 3 different doctors were sent up to examine him. After all was said and done they informed us that it seemed as though his Retinopothy was stable but the pressures in his eyes were off(early signs of glaucoma) and his left eye was developing a cataract...(All i could think about was how grateful I was that it was his left eye, as this is the eye they had informed us that had already lost nearly all vision)...I am so grateful that he may still have some sight in his right eye after everything he has went through!....We are crossing our fingers in hopes of never returning to Michigan again...only 1 more month until the retinopothy disease is complete!

On Wednesday I got a call from the Nurse Practitioner Resident who was calling to give me an update but ended up giving me more information than she was supposed to. After giving me the rundown of no changes being made and such she blurted out that there was talk of a "G-TUBE"...I couldn't grasp the idea of going from no feeding tube to a tube being surgically put in!...Ayden had only been taking 50ccs every 3 hours and they still hadn't put in an NG...to me this just seems like throwing the baby out with the bath water...Needless to say, I called and talked to a Neonatologist... the g-tube is still a possibility but lots of other things have to go wrong before that option is explored. But within the same conversation I was informed that they found out that Ayden's pancreas was not working correctly (aka: Pancreatic Insufficiency) and he would need to be given pancreatic enzymes. The enzymes come in a powder form and are given before each feeding with applesauce....Ayden just thought this was the best thing!....He is still working on changing up the tongue motions to get the applesauce down but that just gives him a bit more time to savour the flavor! We are crossing our fingers in hopes that the enzymes will help him digest and break down his food correctly and it will help him to gain weight without the tpn in time. Meanwhile, Ayden must have heard about the g-tube because he began eating 60-80ccs during his feeds!

Thursday was a very long day but no changes were made. Ayden took 80ccs at his 8am feed but was not as cooperative at his Noon feed. The speech therapist, who has been working with Ayden for the past month to find the perfect bottle and position combination for him, was only able to get him to take 30ccs before going to sleep. I am convinced he just likes so be ornery once a day with feeds because as soon as she put him back in the crib he woke right up and grinned at me...Like "ha lady...all I wanted was my mommy!".... he took about 70ccs each time after that.

We had a care conference today but did not find out as much as we had hoped...A general care plan wasn't even addressed. We had been told that we would come up with a step by step plan and be given a round about date for discharge but we were sadly disappointed...They just reiterated the same things that we had known for weeks....He has to be transitioned to a formula, get off the tpn, gain weight with just the formula, and have surgeries to repair his hernias and take out his broviac. Needless to say, we have at least another 2 months in the NICU for these very reasons....We asked if he would be out by the time of our wedding (June 5th) and they just said it may be reasonable..."MAY BE REASONABLE"?....He will be 10 months old on June 5th....They have jokingly mentioned kicking babies out of the NICU when they have teeth...@ 10 months old he may be borderline for that stipulation...Any hopes we had for him coming home within a reasonable time were just crushed!...It will take us a little while to cope with this idea...

So with all this bad news I had to take a couple days to relax at home. We decided not to stay at the Ronald McDonald house for a couple days...During this time I finally got the energy and courage to finish Ayden's Nursery...For the longest time I couldn't open the door or walk by the room without crying so finishing it was very emotional for me. We even put his walker, exersaucer, and swing together!...I took a picture of it and placed it in his crib for motivation(Ill post the pix on here in a later post)....Home is officially ready for him!...Now all we can do is wait until he is ready for home...

On a brighter note!...I am officially retiring ALL of Aydens preemie clothes!....Ayden now weighs 6lb 7oz!...He has gained 8oz within the past week!

From the Very Beginning...

2010-01-10T20:12:00.000-08:00

My precious baby boy was born Wednesday August 5th @ 12:17 pm...@ 23 weeks and 1 day gestation he was a little more than 4 months early. Only weighing 1lb 3oz @ 11 inches long....(in this photo he is 2 days old and weighs around 15oz)
My little miracle Ayden Wesley has beaten all of the odds they have thrown at him so far and that is what is giving me the strength to tell his story...

The labor & birth:

I began to have extreme pains on August 3rd and I was clueless as to what was happening. After talking to other mothers I was convinced into going to the ER(1pm). After being examined I was told that I was having superficial contractions, that i was not in labor (nor would I be going into labor within the next 2 weeks), that they could feel the baby's head while checking my cervix but all I needed was breathine to stop my contractions and to just go home and sleep. After being given the medicine the contractions seemed to weaken but came back with full force 2 hours later. In turn I returned to the hospital and was given the same spiel all over again with more breathine and sent home once again(7pm)....this same thing happened 2 more times(11pm & 3am...during these visits they didn't even check my cervix and still said I wasn't in labor) before I was finally admitted @6am (I think the nurses and doctor just got sick of seeing me up there)...After being admitted i was put on more monitors and IVs...still being told I wasn't in labor with contractions being2 minutes apart....after being given mag my contractions were spaced out to about 6 minutes apart by about 11am....

@ about 11:30am while getting up to use the restroom I felt a little pop and fluid gush out....I was in a full panic as I screamed for my mom go get a nurse...I got back into bed, the nurse tested the liquid and confirmed it was amniotic fluid and informed me that i was fully dilated and that I would be giving birth right now....I was in shock...I called my fiance and told him my water broke and I was in labor (he thought i was joking)....as soon as he got up to the room the doctor was prepping for delivery and the Neonatologist came and and told us many gruesome facts as to say that our son would not come out alive and if he did that he would not live past the 1st 2 days. Being panic stricken and in shock I had to put all of this to the back of my mind and do the best I could to give birth to my precious baby boy even though I was so not prepared. After only 40 minutes of full labor Ayden was finally born. Immediately he was taken to be revived, intubated and given IVs to be stabilized.
Two hours after delivery I was finally able to see my little miracle but only through the glass of the isolette with pounds of tubes and wires covering him. All I could do was cry and tell him how much I love him...2 minutes later he was rushed to the ambulance and taken to Children's Hospital of Dayton....for the next 28 hours I was stuck 45 miles away from my precious baby boy who was fighting for his life...not knowing what my next phone call would be...thinking of nothing but how hopeless I felt not being with him while he struggles to survive and not being able to do anything to protect him.....

Ayden's Battle:

When i was finally able to join him @ the hospital I was told many more statistics and had to sign lots of papers for treatments:
Within the first 48 hours he went from 1lb 3oz(620 grams) to 14.5oz(around 420 grams) (he stayed @ this weight for almost 2 weeks)....was given 3 blood transfusions within the first 3 days...was put on a high capacity ventilator and oscillator that breathed for him...put under billy lights...and was being pumped full of over 200ml of different medicines, vitamins and other fluids....I wasn't able to see my precious baby boys face without a mask for the 1st week of his life....

At 1 week old he was extubated and put onto a smaller respirator but did not last very long and had to be intubated again. At this point one of his lungs collapsed and was put into respiratory distress and had to be placed on maximum settings for the ventilator....we were told that there wasn't much else they could do if he wasn't able to recoup from this....He was slowly able to be stabilized but has had to be on high vent settings ever since....

Ayden 1 week old during his first extubation

At 2 weeks his eyes became unfused and he was able to open them...this week he also had his first head and heart ultrasounds. He was found to have an open PDA valve and have a Level 2 Intraventricular Hemorrhage(Brain Bleed)....He was given a dose of medicine to close the valve which seemed to work...later they said that it had reopened and that he would be having surgery to close it....the day of the surgery came and a last minute heart echo was done and be some miracle it had closed on its own and he was able to avoid surgery....The Brain bleed was also a bit of a miracle...a baby born vaginally @ his gestation has a great chance of mortality from a crushed skull and he had a semi small bleed that was not emerging into the brain tissue its self which could mean little to no permanent brain damage in his future....

Ayden @ 2 weeks old...his eyes finaly opened

At week 3 he began to get very very sick....requiring more oxygen, spitting up black and dark green bile, belly becoming very distended and turning purple and grey...this was a very bad sign....he had formed a hole in one of his bowels and bile, stool and air was leaking into his abdominal cavity and causing great infections as well....a drain tube was put into his bowel and things slowly began to get better....we also found out that he was anemic @ this point and would need to get several blood transfusions every week until he is able to replenish his blood efficiently on his own (he has had 20 blood transfusions so far)

3 weeks old

During Week 4 they began to tell us his stomach was beginning to improve and his brain bleed was stabilizing but staying @ the same risk but was not getting worse....His respiratory issues seemed to worsen as well tho....this week also they began to draw blood and urine cultures and found a staff infection that was making him very weak and sick....luckily they caught it early and with antibiotics they were able to get this infection under control

5 weeks old

At week 5 he began to spit up black and brown fluid and retained a fever....after testing for multiple things they found another staff infection as well as discovered he had acid reflux and the brown and black fluid that was getting spit up was blood...he was given many medicines to get rid of all of these problems and begin to explore the idea of feeding him. They put a medicine into his stomach to make sure he would be able to move and digest the milk on his own.....at this point they found a large obstruction and scheduled surgery to remove part of his intestines....if they didn't do the surgery or waited to long he would never be able to eat and more of his intestines could die without the circulation...still they wanted to wait several days for the medicine to reabsorb into his body....

At week 6 after waiting nearly a week and nothing had been reabsorbed the doctors were going to do the surgery the next day.... when miraculously he pooped!!(i know it sounds silly but it was seriously a miracle....the doctors said it was next to impossible for something like that to fix its self) ....then they slowly began to put the breast milk into his stomach...starting out @ 1cc an hour and increasing it by 1cc and hour each day....they were shocked when he was able to tolerate this amount without any complications....Although all of these great things were happening he was still struggling with his respiratory issues

7 weeks old

At Week 7 was up to 3lb 2oz....& had been taken off of all of his iv fluids and was solely on breast milk....I had been able to start holding him for kangaroo care....his respiratory issues are still a big battle for him but he has overcome so much already...now all we can do is give him time and wait for everything to improve....

During Week 8 we was still doing well until the end of the week....and they were even talking about putting him on a less powerful respirator...they began to mix the breast milk with formula (since my body stopped producing it) and everything turned for the worse....he began puking and stooling profusely and wasn't digesting any of it...on Friday they took him off of feeds in hopes of catching it before it got too bad but things progressively got worse...his blood pressure and heart rate were dropping dangerously low and his respiratory began to get worse and worse...by Saturday afternoon the doctors seemed to give up all hope...my precious baby boy had coded 3 times right in front of my eyes as they shook him to bring him back and started pumping him full of every kind of medicine imaginable and nothing seemed to work...at this time we were pulled aside and asked to make a decision as they didn't expect him to live more than 6 more hours...they told us we could take him off of all of the IVs and spend his last moments holding him in piece and quiet or keep him on everything as long as possible even tho there seemed to be no hope...they also made us make a decision about what was to be done if he would need to be fully resuscitated....this is the worst thing that any parent can go through...Who is to decide when enough is enough when it comes to the life of your own child?...We decided to keep him on everything and give him the best fighting chance to recover and survive....After 6 hours he was still fighting but his numbers were not improving...he began to swell outrageously from all of the meds and fluids they were putting into him to keep him alive...over the next 2 days he became more and more swollen and his skin began to rip and the fluid that had migrated into his tissue began to ooze from his skin...all the while he was getting poked again and again to secure IVs but nothing seemed to work so the doctors told us he would need to get surgery to put a central line (broviac) near his heart in order to continue to give him all of the medicine and fluids that were stabilizing him...There were so many risks of surgery but if he didn't have the surgery he would surely not survive much longer...

On October 6th he was taken down to the OR...The surgery went through more smoothly than had been expected and he seemed to have coped with it pretty well...After this, each day his swelling started to slowly go down day by day and they were slowly able to start weening him off of some of the medicines... his numbers began to improve but he was very very sick and the doctors were still very concerned...To date Ayden has now had 35 blood transfusions as well...But he was still here with us which is the most important thing of all!

During Week 10 Ayden had his 3rd eye exam...they had been watching him closely but things had changed drastically and they informed us that things did not look very good...The disease known as retinopothy of prematurity had greatly affected his eyes...On October 18th he had laser eye surgery to try to catch retinopothy of prematurity and prevent it from progressing. This week they also extubated him but seemed to be too soon and he was reintubated within days. Soon he also began to have more stomach issues, began spitting up and stopped stooling. If this wasn't all bad enough, they performed a head ultrasound and determined that his ventricular hemorrhage had resolved but he had developed Periventricular Leukomalasia (PVL) and it was a disease that could be devastating. PVL is just another term for cysts and/or holes within the brain. The doctors and nurses would not tell us much information about this and so in turn we did some research and found that children who have this most often end up with cerebral palsy, suffer from loss of motor control, may not be able to walk or talk and most likely suffer from epilepsy. Only time will tell exactly how this terrible thing will affect my precious baby boy later on in life.

Almost 12 weeks old...2-3 days after surgery

During week 11 the stomach issues continued and his belly became very distended. They began barium studies and determined that he had an occlusion and he would need to be operated on. On October 25th he had abdominal surgery on his bowels during which they took out 3inches of his intestines. It took him a while to wake up from the anesthesia but overall seemed to recoup from the surgery fairly well. He was also extubated this week contrary to all other battles he was going through.

12.5 weeks old

During week 12 Ayden went through numerous eye exams that did not go well. At this point we were informed that his eyes did not respond to the laser surgery and his pupils now were not dilating and he was no longer responding to light. After one more exam we were informed that he would need to be sent to another hospital more than 3 hours away for further consult as they were unable to do anything else to save his sight. Just hours before he left for Michigan Ayden tried to take a bottle for the first time and actually succeeded at taking 15ccs. On November 11th he was sent to Royal Oak MI for more eye surgeries. On November 12th he went in for his first physical eye surgery...they injected his eyes with a medicine used for pancreatic cancer to try to decrease the pressures in his eyes(stop vegetation from growing and adding more pressure on the retinas) and attempted to stop the bleeding. His left retina had already came completely detached, his right had partially detached and both eyes were filled with blood. The doctor @ this hospital didn't give us much hope for vision even though he was the doctor who had created the treatment for this disease.

Week 13 while still in Michigan, he went through more. On November 17th he had another eye surgery in which they extracted all of his vitreous juices, replaced it with a thickening gel and a different form of saline. They also drained more blood and scrapped away scar tissue from inside of his left eye. At this point the doctors told us that even with all of the surgeries he could do that more than likely our precious boy will still be blind.

Ayden 3 days after his surgery...around 14 weeks old

Week 14... On November 25th they anticipated on doing the same surgery to his right eye but they said that the retina in the right eye had stayed partially attached and they would just keep watching and anticipated another surgery in a week or so. Meanwhile in the NICU @ this hospital Ayden was still having issues maintaining his own temperature, and not gaining weight. But was doing all feeds by bottle and was only on a cannula with 1liter of flow.

A couple pix from Aydens trip to michigan

Week 15&16... At the beginning of week 15 a head ultrasound was done and it was discovered that his PVL had worsened and had not progressed onto both sides of his brain. Aside from that, two weeks of nothing but normal NICU care took place 3 hours from home...I wasn't even able to visit him because it was way too expensive for us to travel and stay with him. During this time he took nearly every bottle given to him and only had to be fed through an NG on 3 separate occasions. At this point they were finally able to get him down to a half a liter of oxygen flow as well. As for his eyes...after numerous exams under anesthesia in the OR the doctors decided there was nothing else to be done for his eyes @ this point and cleared him to return to Dayton.

Almost 18 weeks old

Week 17... Ayden arrived back to Children's on Dec 11th. This week was merely a week to settle back into the old routine. He was a bit disoriented it seems for the first couple days but went right back to being himself. This week he began eating almost double what they expected him to take and therefore was given the luxury to eat whenever he wanted and eat as much as he wanted as long as he met a minimum of 50ccs every 4 hours. He had no other issues to report this week.

Week 18... Ayden began having more and more issues with his temperature and had to be put under a warmer for an extended period of time before being moved to a warmer bed space. This week he remained the same and consistently worked on his bottle feeding. His average feeds remained at 60-80ccs ever 4 hours.

Mery Christmas...19 weeks old!

Week 19... This week Ayden was finally put into an open bassinet and began to slowly keep his temp up with assistance from being bundled very well. A thing that needed to be watched carefully tho was his weight...our poor boy had not gained hardly any weight in nearly a month and a half and the doctors seemed to be concerned. They began testing for abnormalities within his urine, fecal matter, and blood to find any reason for him to not be growing.. They began to experiment with another formula but it was just another type that his body would not tolerate. This week he was also taken down to imaging for his first MRI but he did not cope with it very well. He was unbundled for close to an hour and his temperature dropped so low that even being put under a heat lamp for over an hour did not help...Finally we were told that we could do kangaroo care in order to raise his temp...an hour and a half later his temp was stable again. The MRI came back and confirmed everything the other hospital had found in his previous ultrasound. The PVL had definitely worsened, had progressed to both sides of his brain and was now becoming more centralized around his ventricles. We are still unsure how this will affect our precious baby boy in the future. On Christmas day Ayden was taken completely off oxygen and we were very excited!

Happy New Years w/ Mommy & Daddy

Week 20... Five days after being taken off of oxygen Ayden was put right back on...At this point they told us that they thought he was breathing too fast. This same day he began to eat less and less and was not even taking his minimum. At this point they completely stopped his feeds, began him back on TPN and IV nutrition, took cultures, began antibiotics and began doing chest and abdominal xrays. Nothing abnormal for him was found but they stuck with keeping him off of feeds for the remainder of the week. This week all of his testing came back normal and we were back at square 1.

21 weeks...5 months old!

Week 21...Ayden turned 5 months old on January 5th! This week they began experimenting with more formulas but are going much slower this time and only introducing the formula 1% at a time...He began taking all bottles by mouth again but is not back up to par with how well he was doing before...he is now barely taking his minimum again...Needless to say, this is going to be slow going...They also began him on lasixs to try to improve his lung and brathing conditions but it did not work as planned...he got rid of lots of water that affected his weight(when he couldnt afford to lose weight to begin with) but did not manage to help his lung condition in the least. When they performed another chest xray to check the condition of his lungs they found 2 fractured ribs that had already began to calcify and heal...I would like to know when this exactly happend...7 wouldnt this be a reason for him breathing so fast?...Back to the lungs, when they found no improvements had been made they began to experiment with his oxygen concentration. He is now on 1/8th of a liter @100% oxygen which as i have heard is more like something a baby with chronic lung disease like him would go home on. I guess this brings me up to date but Ayden still has much more of a journey ahead of him.

For now...

Ayden is still having issues with:

breathing (he has been on and off oxygen and may go home on it if everything else clears up)

feeding (he eats a bottle great and loves to have a full belly but they are unable to find a formula that his body will handle...meanwhile he is on donor breastmilk and does not retain any of the calories or neutrients....he didnt gain weight for over a month and a half even though he was eaying almost double what they had expected him to....they have put him back on IV fluids and they have mentioned numerous times that he may need to go home with that as well.)

liver, kidney,& bone loss(from being on tpn & IV nutrition for so long his liver, kidney & bones have taken lots of damage...his billyruben levels are usually way too high & even the whites of his eyes are yellowish...liver and kidney are not working they way they should and his bone calcium and phospherous levels are so bad that he has been put on an extreme bone fracture risk as his bone are to frail that they could break with the slightest movement in the wrong direction.

Periventricular Leukomalasia (PVL---Cysts in the brain)---this is not a determining factor for coming home but it is going to be a big determining factor on how he will be ble to thrive and function as he grows and develops....

Right now he seems to be behaving and acting as a newborn should...he has major issues with keeping up and regulating his own temperature and they seem to think that it may be caused from where one of the cysts are laying in his brain....as for how PVL will affect him noone will know until later... At this point all we can do is watch him, work with him and wait to see how he develops.

I just wish all of his minor issues would clear up and we could bring him home and work with him. He is now 5months & 5 days old and I feel like even though I am there with him everyday that I am somewhat not being a good mom.

I feel useless... I have to do everything on their terms and on their schedules, its like mothering through a glass window even though I can hold him and such. I am just soo ready to have him home!