A little trouble with feedings

Aiden is still doing pretty good. He does have some issues going on with his feedings, he is back up to 11 mls/hour but had to drop down the last couple of days because he was having too much stool, which is another sign of him not tolerating his feedings. He was doing OK with his feedings today and weighed in at 3 lbs. 10 oz. His doctor is a little concerned about his weight gain and would like to see him gaining more at this point. I think it is just hard for the little guy considering his intestine is not working right and I think he will do much better on his feedings after his surgery. The poor guy may also have a hernia going on as well, which they say is pretty common in preemies and not life-threatening. Hopefully, if it is a hernia, they can fix it when he goes in for his intestine surgery in the next few weeks. His oxygen needs haven't changed, he is still on the high flow nasal cannula on about 35-45% oxygen.

I was sick this week and didn't get to go visit him for 3 days - it was torture! I finally got to hold him again yesterday and today. Jeremy was holding him tonight and he was wide awake checking Jeremy out for about 10 minutes. He really gave him the stare down! He loves it when we hold him, which is a good thing because once he is home he is never going to be put down :)

Giving daddy the stare down...

Aiden loves to be held by his daddy!

2 months old, Aiden's story - this is a long post :)

Aiden was 2 months old on Friday. He is getting to be such a big boy, last night he weighed in at 3 lbs. 7 oz. He is still stable on the high flow nasal cannula and needs about 30-35% oxygen. We have been able to hold him alot more and I have started recreational breastfeeding with him, last night he did really good and stuck with it for about 30 minutes...I think he likes it :)

Jeremy and I were reminiscing the other day about all our ups and downs with little Aiden. He has been such a fighter from the very beginning, he is our little miracle baby!

First we were told I wasn't pregnant - my HCG hormone levels were going up, but not enough. We were told they would take one more test and if it wasn't higher I would need to stop taking the progesterone shots and try again. They tested again, and sure enough they were higher.

Then we were told that they still weren't high enough so they thought it was either an ectopic pregnancy or a molar pregnancy - both not viable. So they wanted to do an ultrasound and sure enough, they found a little sac and a little baby with a little heartbeat. The nurse told us that day "it must be a little boy in there" - it turned out she was right!

At 9 weeks I started bleeding, I thought that was it, something was wrong with the baby. We raced to the doctor and had an ultrasound and sure enough, the baby was fine with a loud, strong heartbeat. The doctor said it was a subchrionic hematoma (blood behind the placenta) and it bled every week until 19 weeks, during one of our emergency room visits they did an ultrasound and noticed the amniotic fluid was low and I was referred to a specialist.

At 20 weeks, when everyone else's main concern is whether they are having a boy or girl we were going to a specialist wondering what was wrong with our baby. They did an ultrasound and told us that there was no water left in the gestational sac, but sure enough, the baby was still fine, had a strong heartbeat and no abnormalities. We were told that we could choose to terminate the pregnancy or I would either go into labor within the next week or so, the baby could continue to grow but have many different problems or it could be just fine. If the pregnancy continued they would see me again at 24 weeks when the baby was "viable". We choose to be optimistic, and I went home to start my days of bedrest at home.

I stopped bleeding but started leaking amniotic fluid instead. I drank a gallon of water a day to encourage the baby to make more amniotic fluid and stayed off my feet. At 24 weeks, I went into the hospital to start bedrest there. I read alot of books, took up knitting and stayed in bed all day every day. The night that I turned 27 weeks I started bleeding again, but this time there was much more and it was painful. Aiden's heart rate kept dipping down low showing he was in distress. Both Jeremy and my doctor were called and both rushed to the hospital in the middle of the night.

Aiden was delivered at 5:48am the next morning via emergency c-section and as the doctor suspected, my placenta was tearing away which was causing the bleeding and causing Aiden to not get as much blood and oxygen as he needed. I didn't get to see Aiden until that night (they MADE me go to bed and recover), but Jeremy got to see him when he was first born and visited him in the NICU after they stabilized him.

Later that morning the doctor came to see us and told us that "we have a very sick baby." Aiden had pulmonary hypoplasia, which meant his lungs were too small due to the lack of fluid and had to have 2 chest tubes placed to drain fluid from his lungs. He was on the highest ventilator settings. His doctor wanted to give him nitric oxide to help his lungs and although it is not FDA approved for babies, the doctor knew it would help him and she was right. She was the first doctor to save his life.

When he was 3 days old the doctor brought us into a little room and told us things did not look good, he was on maximum support - they could not do anything more for him. She told us they needed to know how far we wanted them to go to keep him alive. We said we wanted them to do everything. She started crying during that conversation and I will always love her for that, not every doctor can be a great doctor and show such sympathy to us at the same time. We were devastated that day, but sure enough, that night Aiden turned things around, he got better, he wanted to live.

During the next week he got better each day, he was no longer on maximum support. They were lowering his settings everyday. Then he started getting sick. His belly was swollen and purple, his x-rays showed a bubble of air in his intestine and the doctors called in a surgeon who wanted to do immediate surgery. The surgeon told us that he suspected an infection in Aiden's intestine had caused a part of it to die and that there was a hole in it which was allowing waste to get into Aiden's abdomen. He said there was no way to know how big it was until he opened him up. If it was small they would take part of the intestine out, if it was big there would be nothing they could do and they would close him up and keep him as comfortable as they could but he would not live. After a few hours that were a total nightmare for us, the surgeon came out and told us that he removed 2-3 cm of Aiden's intestine and that this was the best possible outcome for the surgery. That was the second doctor to save Aiden's life. We love him, too :)

I think that pretty much catches us up to where we started this blog. Since his surgery he has had a couple minor infections and has had some ups and downs with feedings and oxygen requirements. Getting off the ventilator was a huge step for him, we know he can breathe on his own and as his lungs heal he will eventually no longer need extra oxygen. He really has come far from those first few days. We are so proud of little Aiden and are so glad that he is so fiesty - he has done alot to help himself. And even though it has been a rocky road, it is making Aiden the sweet, strong little boy that he is! He is exactly what we wanted and we love him so much! We are so grateful for everyone who has helped him along the way :)

From 11/23/08 to 1/23/09 - he has come so far since he was born!

Bath Time!

Jeremy got to give Aiden his sponge bath Wednesday night. Aiden loved it, he was happy the whole time and got all nice and clean. After his bath he cuddled with his daddy and then he got tucked into bed and fell fast asleep.

Aiden's new baby condo

Little Aiden is moving up in the NICU world. He has been off the CPAP and on the nasal cannula for 4 days now and is still doing good, he tries all day to pull it off his face and sometimes he is successful which results in a little decrease in his oxygen saturation. He was moved into a "big boy" incubator on Saturday night. His new incubator is smaller and allows more light and noise to come in, so it's not as cushy as his old one, but he is getting to the age where he needs to get more used to the world around him. His nurse on Saturday night gave him a good scrub down, combed his hair and put him in his first clothing, a little blue t-shirt. Jeremy and I both said he now looks like a "real" baby - just a miniature verson. He is so adorable.

Aiden's new condo...

He has really taken a liking to his pacifier!

He is now getting 9.5 mls/hour of milk and the nurses are all saying that trying bottlefeeding is coming up soon - maybe at the end of the week. They also say that "recreational" breastfeeding (just to get him practicing, not really to feed him yet) is probably just around the corner as well. Aiden weighed in last night at 3 lbs. 4 oz. I think at around 4 lbs. he will have his second surgery to put his intestine back together - which we are dreading and looking forward to at the same time.

Being held by daddy - look how blonde he is!

He has taken so many steps forward since he has been off the ventilator - it's like he is a different baby. It's hard to believe Aiden turned 8 weeks old on Sunday and I would have been 35 weeks pregnant. I want to stay in the NICU 24 hours a day because I feel like I am missing cute things he does. I can't wait for him to come home. Yesterday I bought him a crib and dresser/changing table. They look like this...

Aiden's condo when he comes home :)

Hopefully he will be home as soon as possible to use it!

Making good progress

Aiden has continued to surprise his doctors and the respiratory therapists, yesterday he was moved to the CPAP that does not give breaths to him but just keeps a steady low pressure going into his lungs and he continued to do well on that. So, today they began cycling him to the high flow nasal cannula, which is oxygen only so he is doing all the breathing himself. His doctor didn't want to change him over to the cannula completely to make sure his lungs don't collapse. So for now he does 6 hours on the CPAP and 6 hours on the cannula. He went through his first cycle today perfectly. I think the cannula is more comfortable for him and we like it better since you can actually see his whole face, so I am hoping he continues to do well on it and can be moved to it only very soon.

Peeking into Aiden's incubator

He is still doing good with his feeds and is up to 8.5 mls/hr. He has still been hovering around the 3 lb. mark - tonight he was 2 lbs. 15 oz. He has lost a little weight during his transition off the ventilator, he has been much more active and is using more calories moving around and stretching out and his doctor is not worried about it. We are also getting to hold him alot more now and I was told today that we can hold him as long as we want :)

Momma holding Aiden with just the nasal cannula on him

We have been so encouraged by his progress we have finally started getting his room together, we stayed up late the other night and painted. Blue, of course. We are going to put up crown molding next weekend then all we will need to do is find some furniture and I can start decorating...I can't wait for him to come home and use it...oh who am I kidding he will sleep in our bedroom until he is 10 - ha ha!

Jeremy having a good time painting

That's all for now!

~ Holly

Life off the ventilator

Aiden is still on the SiPAP machine and doing well. The doctors, nurses and respiratory therapists were talking about moving him to a different type of CPAP machine that does less work for him because they feel he is doing so good on the current one that he actually needs less breathing intervention. One of the Respiratory therapists wanted to move him to oxygen only on a nasal cannula (no breathing for him just extra oxygen) - which is the last step before he is doing everything himself.

He is still doing good on his feedings, he is back up to the 24 calorie fortified milk at 7 mls/hr. and he was able to come off all IV nutrition, which means they finally took the PICC line (IV) out of his scalp. We are so happy to start seeing him come off things and have less wires and tubes! Unfortunately, the doctor said this morning that he had a fever last night (which may just be too many blankets since he can't control his body temp yet) and his blood test was slightly elevated which may indicate another infection coming on. They will take another blood test tonight to see if it is better or worse and start him on antibiotics if needed, hopefully if it is something they will have caught it soon enough that it won't set him back on his breathing.

Daddy gets to hold Aiden for the first time since before Christmas!

Daddy, Momma and Aiden

Aiden has also been busy developing his personality and discovering what he likes (holding hands with daddy, mommy touching his head, the pacifier and putting his hands on his face to soothe himself) and doesn't like (diaper changes, taking his temperature, his feeding tube, taking his blankets off him for any reason and of course, needles of any kind). Since he has been off the ventilator he is no longer getting pain medication/sedation and has been much more active the last couple of days, yesterday he was fussing around and decided he wanted to move his head from the right side to the left side. He picked his head up and got himself face down but needed help getting all the way to the other side - it looked like he was doing a push-up. As soon as he got his head where he wanted it, he fell asleep. He has also learned to use his voice to tell us when he is not happy. He never cries when he is being held :)

Turn the sound on for this one, we had to videotape his crying, since we didn't hear it for almost 7 weeks...we are probably the only parents who enjoy hearing their baby cry when changing his diaper - ha ha!

- Holly

A big day for Aiden

Aiden's new breathing equipment and stylish new hat

Yesterday Aiden hit another milestone - he got off the ventilator! With the help of the steroids he was able to switch from the oscillating ventilator to a CPAP (continuous positive airway pressure) machine. The machine is strapped on with a little hat and blows oxygen through his nose a set amount of times per minute, he is able to take breaths on his own as well. This is a good step for him and although we know there is a chance he will have to go back on a ventilator, his doctor is very happy with his progress so far. He isn't even on that much oxygen - 25-35% and his saturation levels and Co2 levels are good. If it starts looking like needs to go back to the ventilator they are going to give him another round of steroids to get him over the hump because his lungs will start to heal and do so much better on the CPAP. We are so proud of our little Aiden!

Coming off the ventilator - we finally get to see his little face!

Yesterday after the switch he was having a difficult time getting comfortable and falling asleep, he has so many new feelings now - having no tube down his throat and using his nose for the first time. He is also off all his pain medications and sedation now (so he can breathe on his own) so he tried to cry a little, he had a little grumbly cry after being on the ventilator for 45 days so we haven't quite heard his real voice, but it was great to hear noise coming from our little guy for the first time. He was thrusting his little tongue around like he used to do against the tube so the nurse had me put my finger in his mouth and gave me a little cup of my milk to dip it in, he loved his first taste of milk and immediately started sucking on my finger - I'm no expert, but the boy had quite a strong suck going on! Hopefully that means he will enjoy feeding and not have too many problems in that area!

Sucking milk off mom's finger

Also, I got to hold him last night for the first time in 2 weeks! We missed each other and he settled right in and was happy the whole time he was being held. Overall, I would say it was a pretty good day :)

- Holly

3 pounds and some crib bedding

Even with his recent feeding problems, our little man keeps growing so good - he weighed in at 3 pounds last night! He is starting to fill out a little and he definitely has some little chubby cheeks. He has been pretty stable the last few days, he is getting 4 mls/hr of milk and his ventilator settings have not changed that much - still around 30-40% oxygen. Hopefully that will change soon as he finally started the stronger steroid today, he will be on it for the next 3 days and we are really hoping to see some good improvements and get the little guy off the ventilator. I am still just dying to hold him again, I think he misses it too and once he is off the oscillating ventilator and stable we can hold him again...I can't wait!

Daddy doing some containment touching

I went shopping with mom & Sara yesterday and ended up buying bedding for Aiden's room. I have been waiting to buy things but found a GREAT deal and just couldn't pass it up! I bought a quilt, crib bumper, pillow cover, window valance, 3 sheets and a bedskirt at Pottery Barn Kids. I just loved the pattern! So, thank you to Sara's mother in law, Pearl, whose sweet gift we used to buy the bedding set :)

This is what Aiden's bedding looks like (without the PHB monogram in the corner)

OK, one last thing. Since we are limiting Aiden's visitors until he is eating better and stable off the ventilator here is a video taken the other day of Aiden opening up his eyes - the next best thing to visiting him!

I'm a big boy now!

Well, it's official - our little man has gained 1 lb. since he was born! We've been waiting for him to hit this milestone, and we celebrated it in the NICU with some "woo-hoo's" and told him what a good boy he is and how proud of him we are. The next milestone will be 3 lbs - which isn't that far off :)

From 1 lb. 13 oz. at birth to 2 lbs. 13 oz. tonight

Tonight we got to give him a bath. We got to spend an hour giving him his little sponge bath, washing his hair, changing his diaper and "brushing his teeth". They give him a bath every Sunday and Wednesday, but this is the first one that we have gotten to participate in. It is really good to be able to interact with him, I cleaned him up while Jeremy gave him re-assuring containment touch (putting our hands on his head and feet to make him feel boundries, like he would in the womb). He did such a good job, his oxygen didn't desaturate once and afterwards he fell into a good, deep sleep without any sedation.

He has been feeling better the last couple days and has alot more awake time where he just quietly looks around and at us. Yesterday they put the little rails on his bed down and let me get really close to him. I had my hand on his head while I was talking to him (about how much he is going to love coming home, of course) and when I took my hand off his head he craned his neck toward my voice and tried to lift his head to try to find me.

Saying hello to mom & dad

His tummy seems to be doing better, it isn't swollen or purple anymore and he hasn't had very much residual milk left in his tummy - tonight he had none. He is on 3 mls of milk an hour now, hopefully he will tolerate them increasing everyday so he can be back up to where he was soon. He has been doing much better oxygen-wise also, he is usually on about 30-40% and is not desaturating as much as he had been in the last week. Hopefully, they can start the steroid early this week and get him off the ventilator!

A family portrait

Thats all for now - I can't believe he is 6 weeks old today, it seems like he was just born!

- Holly

Not quite how we wanted to start the new year

Well, our little man has some more tummy problems going on. A couple days ago Jeremy noticed that Aiden's stomach looked big - like he swallowed a softball. The nurse and doctor examined him and decided to order an x-ray, which came back normal. The nurse checked his feeding tube for residual milk and found quite a bit and some air also. They continued his feeds since nothing was showing up abnormally on his x-ray. The night nurse found even more residual milk last night so they decided to run some blood tests and take another x-ray this morning - both came back normal also but, the doctor decided to stop his feeds until his belly was not swollen anymore. So he is back on TPN (the IV nutrition) and can't start the steroids to get him off the ventilator until they figure out if something is going on. Yesterday his belly was still swollen and has a blue/purple tint to it again (the same thing happened before his surgery), he is also had some green residual milk coming up - which is not a good sign and also happened right before his surgery.

Today they repeated his labs and x-rays and both still came back normal, the doctors don't know what, if anything, is going on and started his feedings again at 2.5 mls/hr and kept him on his TPN and they will watch him carefully - at 4pm they checked and he didn't have any residual milk (green or otherwise), his tummy was not as swollen and he was pooping just fine. We are still concerned, especially since he is having the same issues that caused an emergency surgery a month ago - and I hate having to "wait and see". We were also really looking forward to seeing him without an IV, seeing what the steroids would do and possibly see him off the ventilator and now that all has to wait for a little longer.

On the brighter side, he did great through his eye exam the other day and doesn't have any issues at this point, they will keep re-checking him every few weeks as issues can occur at any time until he is around term.

Today I got to do his cares - it is pretty funny when changing a diaper and getting eye goobers out of your kid can actually make your day absolutely wonderful! It's one of the few times I get to touch my baby and pick him up - even if it is just for a minute :)

Taking his temperature

Moving him onto his other side

"Brushing his teeth" (cleaning the inside of his mouth and around the tube with antibacterial gel)

Giving him kisses :)

-Holly

P.S. I usually have Jeremy crop the pictures so you can't see his little ostomy bag, but you know what??? He has a poop bag, and I'm OK with that :)