Friday, January 29, 2010

Weeks 24&25...Changes Changes

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! 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! yeah, he sleeps a lot

Monday, January 18, 2010

Ayden is such a trooper!

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?

Thursday, January 14, 2010

Week 22...Too much news!

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 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!

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!