Ready for Spring Training

Nicholas is sporting his first Cubs hat today. He is having a good day. No changes but they are giving him a dose of Lasix to help with the fluid he has been retaining all week. He has gained too much weight the past few days so that means it is fluid weight and not weight gain from eating. His urine output has been good so we don't have to worry about him not peeing again.

We Moved!

Nicholas was moved to room 4 today. This is what they call Special Care and it is a step down unit. Such an exciting day. It was kind of sad leaving our spot in room 1 since we had been there for almost 4 months. This is such a big step for Nicholas and I hope he likes his new home.

Other than moving, he is still doing really well. They increased his feeds to 60ml every 3 hours and are going to start the bottle back up soon. The speech therapist worked with him today and said he had good sucking coordination. The sucked on his paci for over an hour tonight while I was holding him and seemed so happy and content. Physical therapy worked with him today too and he did well with that.

So much better with a shunt

Nicholas is doing so good. He is off the vent and back on vapotherm. He is doing very good and isn't dropping his heart rate or desatting like he was before the shunt. We got to see the right side of his head today and the shunt tubing is very noticeable on his head. Not as much on his neck though. That's ok, he will grow into it and grow hair to cover it. Until then we will put a hat on him when we are in public so we don't have people asking us about it. He is also back up to full feeds and off the antibiotic so he is IV free! He had an eye exam today and I didn't here from the eye doctor or nurse so I'm assuming his eyes look good. They will do another one next week. He is recovering well and we can already see an improvement in him from having the shunt.

Happy Due Date!

So today is the day Nicholas was supposed to be born. He sure has been through a lot- 5 surgeries, an infection, he couldn't breathe, couldn't pee, couldn't poop. He has gained over 4 pounds and 5 inches. He sure is a little fighter and has a few more hurdles to get over then he will be home. They are thinking some time in April he will be ready.

He is doing really well today. He is awake and alert. They started his feeds back up and his is getting half of what he was. He was weaned on the ventilator and they are hoping to extubate and put him on Vapotherm either tonight or tomorrow. He is breathing over the vent and is fighting it. He definitely wants that tube out of his throat.

The neurosurgeon removed his bandages and said he is looking good. It really doesn't look bad. I could only see his head in the position he was in and I could hardly see the tubing. I couldn't see behind his ear or on his neck to see it there.

So Far So Good

Nicholas is doing well with his recovery so far. He is at a rate of 35 breaths per minute and between 25-30% oxygen. They plan on pushing him and extubating him tomorrow. They also plan on starting feeds again tomorrow. He is a little swollen all over and his head is more swollen. His urine output was a little low today but they aren't worried yet. He had good output last night and they are going to watch him very closely. He has been getting morphine a few times a day and will continue that until he is extubated. Then the poor little guy has to deal with the pain because painkillers slow breathing and he can't have them when he has to breathe on his own.

Shunt Surgery

Nicholas had his shunt surgery today and he did fine. It started late and lasted a lot longer than we were told so it was a pretty stressful day. Everything is fine they just had a little trouble feeding the catheter through his veins. The doctor said it was because of all the IV's he's had and how sick he has been. It took a while but they got it and the surgery was a success. Nicholas was even starting to wake up while we were there. They gave him a little morphine to keep him settled down tonight. We couldn't see what it really looks like yet because he has bandages on, but it goes from the top of his head, down behind his ear, and down his neck. It is all under the skin and once his hair grows and he gains weight it won't be noticeable.

The shunt was placed because Nicholas has Hydrocephalus. There is a good description of that in the NICU glossary I have a link to on the right side of this page. His body can't drain the cerebrospinal fluid on its own so he needs a shunt to do it for him. He has a Ventriculo-Atrial shunt which means there is a catheter attached to a valve in his right ventricle in his brain. That is fed through veins to his heart where the fluid will drain to and will be released when he pees. The valve is set at a low level to release the CSF when a certain amount of pressure is built up inside his head. Nicholas will be just like a normal baby with the shunt and it is very durable so we don't have to treat him any differently than we would if he didn't have it. It will most likely have to be replaced within 6 months because he will outgrow the tubing. They will check his abdomen and might be able to use that as the drainage site if there isn't too much scar tissue still.

Getting ready for the big day

Nicholas had a good day. He got blood last night to beef him up for surgery. He is rock solid with all his labs right now so he is in good shape for tomorrow.

Daddy fed him his bottle today and he did pretty good. We used a slow flow nipple rather than the preemie nipple. This one he has to really work for the milk to come out, the preemie nipple dripped so he didn't have to really try for it. He took 40 out of 56ml in 25 min.

He got a bath today too. Mommy got to help and then she got peed on. I guess he didn't appreciate the bath.

That's about it. Wish us good luck and keep Nicholas in your prayers for tomorrow's surgery.

Boring Day

Today was pretty much the same as yesterday. Nicholas took his bottle last night but didn't do too well today. It was really loud and busy in the NICU today so I think he had a hard time concentrating on what he needed to do. He only took about 20ml then decided to de-sat (blood oxygen saturation drops) and brady (heart rate drops), so the rest had to go in his feeding tube. Hopefully tonight and tomorrow he will take the whole bottle. Monday is still the big day for his shunt. Then once he recovers he is on the road to coming home. It probably won't be until April, but the shunt is a huge step to go over. They think he will be a totally different baby after the shunt is placed. It will relieve the pressure that is constantly on his brain and he will feel so much better.

Good Day

Nicholas had another good day. The speech therapist came by to do his bottle feed and evaluate his swallowing. He is fine. He sucks and swallows well just drools a little on the sides of his mouth. No big deal. His nurse said he puts some other babies to shame with his bottle skills. He took his full feed during both of his bottle feeds. They did increase his feeds to 56ml every 3 hours. His shunt surgery is still scheduled for Monday. He will be put back on the ventilator and have to stop eating but hopefully only for a short time.

Nicholas likes the bottle

Nicholas had another good day. They increased his bottle feeds to 2 a day but he can only do it for 10 minutes so he doesn't tire himself out. At his 5 pm feed he took all 55 ml from the bottle in like 12 minutes. He did well during it and he de-sated a little but brought it back up on his own. I'm so proud of him.

His nurses thought he might be having reflux after he eats because he would have a lot of spells where he would de-sat and drop his heart rate. The doctor confirmed that today so they are going to start him on Zantac after his surgery. I don't know why they are waiting, he has 3 more days of eating before surgery.

Physical Therapy has started working with him. He did well today and he will get it 3 times a week. They work on things like range of motion, staying in a mid line position, following objects, calming themselves down. There was a checklist on his crib but that is what I remember without the list. The only thing that wasn't checked was lifting head from the prone position. I guess he is fine with that. They set up Speech Therapy too. They work with eating issues and will feed him and watch how he swallows. He seems to have no problem with that since he hasn't choked while taking a bottle.

Good Day

Nicholas had a good day. He is still at 2 liters of flow on his Vapotherm and was right around 21% oxygen, room air, all day. He is still getting 55 ml of milk every 3 hours and he did a great with his 1 bottle feed. He took 35ml and didn't de-sat or brady once. He had 2 big boy burps too and a face full of milk. Too bad I couldn't get a picture because it was cute. No new orders.

Didn't want a bottle today

Nicholas didn't tolerate the bottle too well today. He only took about 5ml and he de-sated really bad so we had to stop. We will give it another try tomorrow. They said not to expect him to do it every time but at least we know he can suck, swallow, and breath. They did increase his feeds to 54ml every 3 hours. They also lowered the flow on his Vapotherm to 2 liters per minute. I think that is the lowest he has ever been on it. His length last night was 17.5 inches. He was 17 last week and over 18 the week before the the measuring isn't very consistent.

Big Boy Tried A Bottle

Nicholas got to try a bottle for the first time today. His nurse put 15ml in a bottle and I got to give it to him and he did it! He did drop his heart rate and de-sat when I tried to burp him but that's ok. Then she added more to the bottle and he did it again and didn't drop his heart rate or de-sat. Mark, his nurse, and I were all so impressed that he did so well on his first try. He got the rest of his feeding through the feeding tube. They are going to try 1 feeding a day from the bottle until after his shunt surgery next Monday, then they will increase the bottle feedings.

He had an eye exam today too and his eyes are healing nicely. They look really good now and they will check them again next week.

Slow Weekend

Nicholas had another good day. The only change was they increased his feeds to 52ml every 3 hours.

Happy Valentine's Day!

Cards and Presents for V-Day.

Holding Daddy's Ring

Nicholas is 14 weeks old today. He has hit the 6 lb. mark and weighs in 6lb even. He had a good day today. They lowered flow on his Vapotherm to 3 liters per minute. His eyes look better- less swollen and less red. He has no problem opening them either. They kept things easy for him the past few days because of his eyes so nothing new to report.

Pretty Good Day

Nicholas had a pretty good day today. He had a few spells that took him a long time to get over and needed some help with but they think he is just still getting over the eye surgery. They turned him down to 4 liters of flow on the Vapotherm and his oxygen was around 30%. He is still getting 50ml every 3 hours and it is now both breast milk and formula. He was tolerating the formula well. His eyes look better than yesterday. They are still a little swollen and red but he was wide awake and had them open. He didn't seem to be in pain with them open and his nurses said the eye ointment doesn't bother him either. He is such a tough little guy. No changes or new orders today.

Back on Track

Nicholas is back on track after his eye surgery. His eyes are swollen but they don't look that bad. He even opened them a little a few times.

They put him back on Vapotherm around 3 this afternoon. His oxygen is at 40% and he was at 5 liters per minute but they want his blood oxygen saturation to be between 98-100% right now. He was still a little groggy from yesterday so those will go down as he becomes more alert.

They started his feeds back up at 25 ml every 3 hours and changed it to 50 ml at his second feeding. He is back up to full feeds and IV free. Today was the day they finally ran out of frozen breast milk:( They will have to start supplementing his milk with formula since he is eating more than I am making.

Surgery went well

Before

After

Nicholas had his laser eye surgery for ROP today and they said he did very well. His eyes are red and swollen right now and will be for a few days. He will get an ointment put in them every 4 hours and they will do an exam on Monday to check for any irritation. It takes about 2 weeks before they can tell if they surgery was a success. If it isn't, they will do it again. They said he got a lot of laser to his left eye but not as much to his right and that his right eye was more mature. He was given a paralytic, a sedative, and painkillers and was still pretty out of it when I left. He should wake up and start moving around tonight. They put in his orders to extubate him and put him back on Vapotherm when he wakes up if the respiratory therapist thinks he is ok for it. No feeds until tomorrow at the earliest and he is on IV nutrients again.

Surgery Tomorrow

Nicholas had a good day today. His nurse had him propped up in his boppy pillow when I got there. He did well in that position. They decreased his Vapotherm flow to 3 liters per minute. They also increased and changed his feeds to 50ml every 3 hours.

He is scheduled for eye surgery tomorrow afternoon so they will have to stop his feeds at 8am and he will have to be put back on the ventilator. Hope and pray that his surgery is a success and he recovers quickly. I was able to look at pictures from the retina cam today. I could definitely see the ridge that has formed where the blood vessels stopped. I could also see the Plus Disease which is hemorrhaging on the ridge. His left eye is worse than the right. They said that if it isn't fixed his retina would most likely detach.

They also said that as of now they want to do surgery to put his shunt in on Feb. 23.

ROP

Nicholas had an eye exam today and the results were not what we wanted. His ROP has aggressively progressed. He has Aggressive Posterior ROP in Stage 3, Zone 2 with Plus Disease. He will be having laser surgery later this week to hopefully stop the progression. Stage 3 means the blood vessels behind his retina have grown and formed a ridge and new blood vessels are growing on the ridge. This can cause the retina to detach and cause blindness. The laser surgery will hopefully stop the progression but it effects his peripheral vision. He will lose that but they said that it wasn't developed at 24 weeks and it doesn't develop outside the womb. So he has never had peripheral vision so if he loses it he won't know the difference. There is a 15-20% chance the surgery will not stop the progression. He will most likely need glasses and might have issues with crossed or lazy eyes or one may be stronger than the other. They can work with what ever the outcome is.

His feeds were increased to 35ml over an hour every 2 hours and he is tolerating them well.

He hasn't been having as many spells of forgetting to breath and dropping his heart rate. They think he gets over stimulated easily and stresses out causing that to happen. He is better with it at night when it is dark and quiet.

Dr. Smith, the neurologist, still wants to go ahead with the shunt surgery next week as long as he recovers well from the eye surgery.

3 Months Old

Nicholas is 3 months old today! It is hard to believe he has been in the hospital that long. He looks just like a regular newborn baby right now, just a little small. He still fits preemie clothes but with the way he is growing it won't be long before he out grows them.

No new orders for today. They are still giving him 33ml of milk over 40 minutes every 2 hours and he has been tolerating it well.

He has been having spells where he drops his heart rate but he is bringing it back up on his own for the most part. He will eventually out grow this.

Another Good Day

Nicholas had another good day. He has been regulating his temperature well in his crib. We brought him a mobile and a boppy pillow today. They changed his feedings to every 2 hours instead of continuous. This will get him used to the feeling of having an empty and full tummy. They will move it to every 3 hours eventually which is the feeding schedule they send them home on. They also stopped the medication for his liver. He was on it because he had jaundice of the liver from being on IV nutrients for so long. The nurse practitioner said that is really good because most babies will be on that medicine for months and even go home on it.

Big Boy Bed

Nicholas was moved to a crib today! He is getting so big! I hope he can regulate his temperature well and not have to go back to an isolette. That is really the only change for the day. His cultures are still negative at day 5 so the infection is most likely gone. His hip ultrasound showed no change so that means his hips are fine and the infection didn't get in the joints.

Still Doing Good

Nicholas had another good day. He is doing well on the Vapotherm. He is at 4 liters of flow and between 21-25% oxygen.

He gained 2 ounces yesterday so they gave him a dose of Lasix as a precaution. His urine output is good but that is a big gain so they want to just give him a chance to get rid of any excess fluid he might be holding in.

The orthopedic doctor decided he wants to repeat the hip ultrasound so that is scheduled for tomorrow. I don't know why they waited this long and decided to do it after they canceled it the other day. I guess it is better to be safe than sorry.

His cultures are still negative for infection at day 4. They did the lumbar puncture today to test that for infection too.

Good Day

Nicholas had a good day today. They took him off of Nasal IMV and he is back on Vapotherm. That was fast! He was doing pretty good on it and only dropped his heart rate a few times but got it back up quickly.

They decided not to do another hip ultrasound because the first one was normal and his labs have been good. His C Reactive Protein is still a little high but it is down from last week. His blood counts have returned to normal. The blood and CSF cultures are still negative at day 3. They still want to do a lumbar puncture and test his spinal fluid for infection.

His feeds are the same as yesterday. Once he is stable on the Vaportherm they are going to switch his feedings to every few hours rather than continuous. If he handles that, they will try a bottle.

We saw Dr. Smith and he said that they are planning on doing the shunt surgery probably the week after next.

He is a big boy now too. 18.5 inches and 5 lb. 6 oz.

Wow, What a Day!

Today was a pretty stressful day for us. We got a call around lunch that Nicholas' hip ultrasound showed fluid in the joint. They said they were going to have the orthopedic doctor look at it and decide if they want to draw out the fluid to test for infection. Then I got a call from the orthopedic doctor around 2 pm saying they decided to take Nicholas to surgery to do an incision and drainage of his hips. They said that the fluid being there probably meant that the bacteria, MSSA, made its way to the the hip joints. So we got to the hospital around 3 and they were still on for surgery at 4. The anaesthesiologist was in the NICU and everything. Then at the last minute a pediatric radiologist said the fluid in his hips that showed up on the ultrasound was normal. It isn't normal in an adult but a little fluid is ok in babies. So surgery was called off. Thank God, he doesn't need another one. They are going to repeat the ultrasound tomorrow to see if the fluid has increased. If the fluid increases he might have to go to surgery. They don't think he will though because there isn't any swelling or redness and he is moving around. If they were infected he would be in pain and not moving.

They changed his antibiotics again today. The bacteria he has is resistant to oxicillans so they put him on two different antibiotics that are not oxicillans. He has MSSA which is a very aggressive bacteria. It can cause puss pockets to form and the antibiotics won't be able to get inside. Hopefully they caught it in time. His blood culture from last weekend has not grown anything yet.

They increased his feeds to 16.3 ml an hour.

And... he is off the vent. They extubed him and put him back on Nasal IMV.

Ok Day for Being Sick

Nicholas has had an ok day. His ventilator setting is still at 10 breaths per minute and he has been around 21% oxygen (room air or what we breathe) all day.

They increased his feeds to 15.3 ml an hour.

They changed his antibiotic to one that the bacteria he has is more sensitive to. They are going to do repeat blood and CSF cultures every few day until the infection is gone. The ultrasounds on his heart and hips were fine and the bacteria hasn't attached to them.

He was awake and looks good so lets hope that the antibiotics are working and he will get over this infection quickly.

Infection

Nicholas' blood culture from Thursday came back positive for a staph infection. The antibiotics he is on should kill it. They are going to test the bacterial that grew on several antibiotics to find out which one it is most sensitive to and give Nicholas that one. They are having infectious disease people come and look at him tomorrow, which is routine with this type of bacteria. They are also going to do ultrasounds on his heart and hips because the bacteria likes to attach to those places. The Dr. said clinically he isn't acting sick which is a good thing. His labs were better today than they were Thursday. His C Reactive Protein level went down which is good. They are going to repeat blood and CSF cultures tonight.