Sunday, January 10, 2010

From the Very Beginning...

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) 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 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 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 Saturday afternoon the doctors seemed to give up all 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 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 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 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!


  1. Saw your blog through the micropreemie group. I just wanted to tell you congratulations on your son and the harrowing journey you have made so far! Your journey sounds so similar to mine. My son is a surviving twin micro from 23 weeks. He has PVL, vision loss and cerebellum atrophy and was subsequently diagnosed with cerebral palsy due to his brain injuries. He is now two and such a joy to be around even though his disabilities have limited him. I hope Ayden can get home soon!

  2. I also saw yor blog through the micropreemie group. My daughter also born at 23 weeks. I really can relate to the end of you blog where you stated that you have no control and are mothering through a glass wall. It is so hard. But he will be home, hang in there. My daughter has very similar issues and she requires a lot of work/care but it the light of my life. Your liitle guy is awfully cute and looks like a fighter. I hope hs is home soon.

  3. Athena, I knew a lot of this already but not all and to read it all at once is just mind-blowing. Ayden is BEAUTIFUL and AMAZING - a true miracle! And you are 22?!? I knew you were young but you are mature beyond your years. Ayden is so lucky to have you. I've been praying for you and Ayden for a while and will keep doing so - harder than ever.

    I know it's hard to be one of the only "old timers" in the NICU. We see babies come and go home every day and we just have to keep our chins up and know that our day will come as soon as our babies say so. (Easier said than done!) I hope you can find some comfort and comaraderie in the blogging world as I have. Your blog is beautiful, by the way! I can tell you're an artist :-)

  4. Hi, I found your blog through Chloe's, and will include Ayden in my preemie cheer list. My daughter Daphne is a surviving twin (27 weeks) and was in the NICU for 5 months. After coming home she had open-heart surgery. She still has lots of health issues, but is doing very well considering her beginnings. I am sure Ayden will get there too. It is HARD being in the NICU so long. If I can provide any support or encouragement, please feel free to reach out.

  5. you are so strong! I have a baby girl who was a preemie too.

  6. i also am on the micropreemie list. my son is a surviving 23 week twin. he was born and spent 4 months at the hospital in royal oak. his eyes were operated on by dr. drenser and dr. trese. they are the best at what they do so at least you know ayden's eyes were in good hands. my son had smal bilateral bleeds and has some damage to his brain on MRI but the doctors think he is doing great and so do i. he was diagnosed with hypotonic CP, but walks and runs and is doing so much better than they predicted he would.
    check out kinnick and carver's blog. they have been through all the eye surgeries and their mom is an expert on the subject. they travel to detroit regularly for follow ups. best wishes to your family and hope ayden can come home soon.

  7. I'm so glad you commented on my blog! Ayden's story is amazing! It's amazing how much fight our little 23 weekers have! Your little boy is so beautiful. Your family will be in my prayers every day! I just have one piece of advice in dealing with the NICU staff. We also dealt with transfers between hospitals and changes in staff. YOU know Ayden best. You may think that there is nothing you can do because you lack all the medical knowledge but Ayden knows you even if he can't see you. Trust your gut and speak up ALWAYS. He is your little boy and there is a special bond. Just being there to hold his hand is enough for now. I'm sure you are a wonderful mommy! :) Definitely reach out if you need support!

  8. Athena, I found your blog through Chloe's. I feel so privileged to have been able to read about your brave little miracle. My Crew is a surviving TTTS twin born at 28 weeks. Ayden will be in our prayers and I am anxious to follow his progress. You are so lucky to have him and he is so lucky to have such a mommy as you. He is so beautiful!! He has just overcome so many obstacles already, what an amazing little boy you have. And cute as a button to boot.

  9. Hi there, just wanted to stop by and tell you what a great job you guys are doing! Ayden is super cute and you can tell how much of a fighter he is! My daughter weighed the same as your son, although she was a 25 weeker. Hang in there guys!

  10. Aw I cried at the last comments. You shouldn't feel like a bad Mommy. Some parents don't even see their babies in the NICU because they can't handle it. It's so sad they don't but true. Being there means everything. Keep doing what you are and when your little man gets home you will do just fine. Everything changes when you can hold them everyday and take care of them. Our little man has been thru soooo much too but now he is two and thru it all we have survived and he has thrived. You will still have some tough times once you are home and may even have more hospital stays or surgeries. But you may get lucky and not. Our first year home was tough. But it does get easier just keep hanging in there. These babies are tough. Oh and my son has PVL too. So far he has only suffered delays in development. You just never know but I hope Ayden does as well as Braden. :-)

  11. the broken ribs probably came from chest compressions when he was coded 3 times

  12. Your very strong. You definatly have a very strong son, even though I know he has a long road ahead of him. My daughter was born 9 months ago just 3 days short of 24 weeks. Military docters refused to do anything. This blog is about your journey though and I would not go into that whole story. I was just curious what my journey would have been had they tried to save her and I found your blog. Best wishes to your family and your precious little boy. It is good to know even though its a very rough road... there is some hope for very premature babies.

  13. My daughter was born at 29 wks and she had gr lll &gr iv ivh and she has pvl. Im terrified for her future. Shes still in the nicu.

  14. your blog is amazing. I'm a maternal-neontal nursing instructor and your story is pretty much EVERYTHING I teach in my NICU overview class. Since you freely post the code at the top of your page, I'm sort of assuming it is ok, to put the link on my class's (private) page? If not, I will respectfully take it down. Hang in there. beautiful pictures. Wow, you've lived it all. Have you considered being a a speaker for conferences?