Thursday, April 30, 2009

Shunt Surgery

Happy Boy

Playing with his tongue

Bella protecting Nicholas

ER and swollen shunt

More ER time

There is a toilet in the ER room

Bored in the ER
After surgery

Before surgery

Huge crib in children's hospital

Nicholas had a pediatrician appointment yesterday. She said she is very pleased with his growth and development. He is 11 lb. 15oz and 21.25 inches long. It was really amazing to see how well he was doing at home. He has been very vocal and awake and is moving a lot more than when he was in the NICU. He also discovered his tongue and mouth. He likes to still his tongue out all the time and is starting to put his hands in his mouth. He does seem to favor his right side. That is probably because his brain bleed is effecting his left side. We are doing his physical therapy everyday and the special needs coordinator at the pediatrician's office is going to call her contact at Baby Net, the early intervention program, to get his at home therapy rolling.

His pediatrician noticed that his soft spot was bulging so she sent us to the children's hospital ER to have him looked at. That is when the circus began. We were in the ER for over 8 hours. They took x-rays and a CT of his head. Then we had to wait for the on call neurosurgeon to get out of surgery to read the films. He determined that his shunt was not working and called the pediatric neurosurgeon to schedule surgery for today. They tapped into the shunt and removed 30ml of fluid. That got his soft spot and the swelling on the tubing part back down. Then we had to wait forever for a bed at the children's hospital.

When we got up there it was horrible. The nurse didn't even seem to know what Hydrocephalus was and had to ask me like 5 times what ROP is. Nicholas isn't the first preemie to come in there so that just blew my mind. Then she said that his labs from the blood taken in the ER were really off and that he might have to go to the PICU. They decided to draw more blood and retest them. To do this they had to take him to an exam room across the hall. They disconnected his oxygen and then the tech fiddled around with blankets, while he was off oxygen, before she took him to the exam room. While they were in the exam room I heard someone yell for the tech to get a pulse ox. She didn't even know what it was. I pointed to it and she said "no, they want something else." Then someone came in and told me he had turned blue and they didn't have a working pulse ox, to see his blood oxygen saturation and heart rate, in the room. I was so pissed by this time and felt that I knew more than the staff.

Nicholas couldn't eat past midnight so I was going to feed him once more before then. The nurse told me not to feed him because of the vomiting. I asked what vomiting, did he vomit when they were taking blood. She said no, the vomit when you first came up here. That was spit up. I was feeding him in the ER, for the 3rd time, when we had to move upstairs so he wasn't burped. I really wonder what she calls actual vomit because what he did was nothing.

I hadn't pumped in like 10 hours so they did bring me a breast pump. While I was trying to pump they opened the door and I said I was pumping. Their response was well I need to get in there and didn't even give me time to cover up. They just needed to get more blood. Nicholas was so covered in gauze and tape when he came back he looked like he had been through a war. Then I tried pumping some more and got walked in on again so I gave up.

We have heard nothing but good things about our children's hospital so this was really upsetting. I felt like I wish I never brought him there but we have no where else to go. We also have to stay with him 24/7 because he is in a regular patient room and they aren't constantly watching him. We did complain to the nurse manager and charge nurse. We had a much better staff today.

He went into surgery this afternoon and it went really well. They neurosurgeon said he had already out grown his VA shunt. That is the problem when they have to put the tubing in the heart- there is no room for extra tubing for when they grow. He also decided to repair part of the mechanism in his brain just so we don't have to go through another revision any time soon. He was also able to put the tubing in his abdomen so he has a VP shunt now. This one should last a lot longer.

Nicholas is spending the night in the PICU. He is still on the ventilator and they want to wean him off of it slowly. His head has a bandage so we can't see that. He also has an inch long cut on his right side like midway between his nipple line and belly button. He is really sedated and on pain meds but should be off that tomorrow. They are estimating about 4 days in the hospital. The PICU is a lot better than the regular children's hospital. He is in his own room but the front is all windows and the nurses sit at the windows so they can see him. We are going to try to get some rest tonight before we have to camp out at the children's hospital for a few days. Please pray for a fast recovery for Nicholas.

Sunday, April 26, 2009

Two Months Adjusted

Nicholas is two months adjusted today. That means it is two months from when he was due and we should expect him to act like he is 2 months old. Nothing much has been going on. We did some tummy time and he seemed to enjoy it. He lifted his head a little too. We only have one Dr. appointment this week. I hope it stays that way. Last week we only had one scheduled but it turned into four.

I want to thank everyone that donated to the March for Babies. Unfortunately we weren't able to participate in the walk yesterday. Nicholas' doctor didn't recommend it because we need to stay away from people and especially other children. We still raised money for a great organization that helped save Nick's life. We will be there next year and probably have our own team. We surpassed our fundraising goal and I heard the walk was great.

Friday, April 24, 2009

Shunt might be failing

I took Nicholas to see his neurosurgeon today because he has swelling around his shunt. The doctor said that swelling is usually a sign that something it wrong with the shunt. He said that there is a greater than 50% chance the shunt will brake and need to be repaired or replaced. He said to cross our fingers that it holds on and that the horse isn't out of the barn yet. Right now we have to keep an eye on it and if it swells up like a balloon, it is time to do something. We always knew that shunts fail and need to be replaced more often than anyone would want but it just really sucks. Nicholas has been through so much and he can't seem to catch a break.

Other than that, we took him for his first walk last night. He was half asleep so we couldn't tell if he enjoyed it or not. Mark also tried out the baby carrier thing but that was a little hard to use with his oxygen and monitor.

Wednesday, April 22, 2009

Back to the doctor today

We took Nicholas to his pediatrician today. There is some swelling around his shunt and we want to make sure there isn't a problem. His doctor thought that if he is retaining fluids some could have collected at the shunt. She said that if his lungs sounded crackly and if his oxygen saturation was low she would give him a dose of Lasix to see if that helped. His lungs sounded fine and he was satting at 93%. So he didn't need any Lasix. He isn't showing any signs of infection or shunt failure so we need to have the neurosurgeon check it out. We are going to see him on Friday. It could be nothing or if there is something wrong with his shunt he will need to have it fixed. So in the mean time if the swelling gets worse we have to call the neurosurgeon and if he gets a fever or continuous vomiting we have to call the pediatrician.

Other than that everything has been good. He is really getting louder and he is cooing a lot. I can already see a big difference in him being at home. I took a video of him in his swing but I can't put it on the computer because our hard drive is full. I will work on that later and try to clear up some space for it.

Tuesday, April 21, 2009

Still Doing Well

This is the oxygen machine and apnea montior.

We are surviving our first few days at home. It really hasn't been that bad. We have had a few low heart rate alarms but he has come back up right away each time. He slept really well last night and only woke me once in the middle of the night and then at about 6:45. His voice is still weak and quiet but it does wake me up. We have gone through a ton of clothes already because he is a messy boy. We also had our first rainbow of pee during a diaper change today. He got more on himself and the changing table than on the floor. The home health nurse is coming tomorrow morning. I really don't know what she does but since he is on oxygen and the monitor they send them to the house.

Monday, April 20, 2009

First Doctor Appointment

Nicholas has his first appointment with his pediatrician. She hadn't received his discharge summary from the NICU yet so she didn't have a chance to study his history. She looked over the copy I brought and said he looks healthy and good. She also said he is a very good baby. According to their scale he is 11lb 10oz and 20 1/4 inches. That is a huge difference than the NICU scale yesterday. She said that because of his weight we don't need to wake him in the middle of the night to feed him and he only needs to eat 6 times a day. That was so nice to hear. Even though we had to wake him last night, we took turns, we had a good night and aren't overly tired today. She was concerned that he may have another hernia so she sent us to see his surgeon. The surgeon said that it isn't a hernia but it is just still healing. He said that since Nicholas' hernia was so large it might take up to 6 months to heal. He said the lump is probably just fluid but doesn't feel the need to do an ultrasound on it at this time. We have to go back to see him in a month. We have to go back to the pediatrician in 7-10 days. She wants to see him pretty often in the beginning.

So far his time at home has been good. He has been eating well except for his 5am feeding today. He still loves his swing and isn't afraid of the animals. Bella and Jasper seem to have taking a liking to him. Jasper will just sit by him and watch him. Mark even said he thinks Jasper is in love.

The oxygen and apnea monitor are a pain in the butt because of the cords and tubes. We have to bring the monitor with us whenever we move him because the cord isn't long enough. So far we have only moved him to and from the living room and our bedroom. It would be so much easier if we only had the oxygen. The monitor went off a bunch of times because of his leads coming off. It screams and won't stop until you get the his clothes open and fix his leads. It is really annoying. We also have to find some better tape to keep his nasal cannula on his face.

Tomorrow should be a more relaxing day. We don't have any appointments so we can stay home all day. I will post some new pictures tomorrow.

Sunday, April 19, 2009

He's Home

Going Home Outfit

Bear Comparison

In the car seat

Leaving the NICU

Saying good bye to his nurses


First feeding at home

In his swing

Nicholas made it home! It has been an exciting day and so far so good. He spent 163 days in the hospital and gained 9 pounds and grew 7 inches. We have done 2 feedings and already had to change his outfit because he sit up. He loves his swing. The animals have been good. Jasper watches him and is curious but very gentle. Bella has already given him tons of kisses on his feet. She is a little hyper right now but hopefully she gets used to him soon. Sydney, Zorro and Zoe are not very interested. Our monitor went off once because his lead came off but he has been fine. We have our first appointment with the pediatrician tomorrow morning.

Saturday, April 18, 2009

Rooming In

We roomed in with Nicholas last night. It went well and we are comfortable with his at home monitor. It went off for low heart rate once but he was pink and moving when we got to the crib. It also went off because his lead wire came off. It is super loud and there is no way we will sleep through it. I'm sure it will get the dogs going too. He cried a lot and seemed to just want to be held. We didn't get much sleep but we won't anymore so we will get used to it.

I met with the physical and speech therapists yesterday. They showed me exercises to do with him. The physical therapist said he is doing well but she is concerned about his legs. We have been too because they are very stiff and he doesn't move them nearly as much as his arms. She thinks he will do better at home with his PT. She is also concerned that he turns his head to one side all the time. It can lead to something that is really hard to correct because the neck muscles will get really weak on one side. She said to try to keep his head in a mid line position as much as possible. She also suggested infant massage and I asked about baby yoga. She said that yoga would be good too because anything that gives him a work out will help with his tone problems. Early intervention is key and we started the application process for the state's EI program. We just have to wait until the provider contacts us. In the mean time we will do the exercises she showed us and I'm going to look for massage and yoga books/videos.

Tomorrow is the big day. It seems unreal and as strange as it sounds I will actually miss the NICU. There are so many wonderful people there and they saved Nicholas' life and nourished him to health so he can come home. I hope we stay friends with his nurses and will miss them.

Thursday, April 16, 2009

Still Going Home Sunday

Nothing new to report today. Nicholas is doing well and still going home this weekend. We are rooming in tomorrow night and only have to room in on Saturday if we feel we need to. They don't do discharges on Saturday so he will still go home on Sunday. I'm meeting with the physical therapist tomorrow so she can show me some exercises to do with him. Our home oxygen is being delivered tomorrow too.

Wednesday, April 15, 2009

Discharge on Sunday

Nicholas is doing well. The new plan is for us to room in on Friday and Saturday night and to go home on Sunday. Hopefully this is it and he won't scare us again. Right now they aren't planning on doing the MRI but that isn't set in stone. His feeds were increased to 90-95ml each time. He is also getting his last vaccination tonight.

Tuesday, April 14, 2009

Possible Discharge on Sunday

Nicholas is doing well and you would never know anything happened yesterday if we didn't mention it. No word from the Neurosurgeon about redoing the MRI. Hopefully we will know tomorrow. They are talking about us rooming in on Friday and Saturday and going home on Sunday. Keep your fingers crossed.

Monday, April 13, 2009

Discharge Postponed

Nicholas' discharge is being postponed for a little while. He had a bad spell during his MRI and coded. He stopped breathing and his heart stopped. They were able to bring him back with oxygen and chest compressions. This was a reaction to the Chlorohydrate they gave him to sedate him during the MRI. He got so relaxed he forgot to breathe. They are going to ask the Neurosurgeon if he absolutely needs the MRI before discharge. If he does, they will have to decide if they will use Chlorohydrate again or if they can come up with a different drug to use. Once they got him back he was fine and has been fine all day. They took 2 blood gases and those were fine and he is already back to 1/4 liter of oxygen. They also did a CBC but don't feel that it will show anything wrong. So now it will probably be next week before he is home. On a better note, his eyes look good and the ROP is still regressing. I forgot to bring the camera so no new picture.

Sunday, April 12, 2009

Happy Easter!

Nicholas is still doing well. Mark couldn't get Tuesday night off so now we will be rooming in on Wed. night and going home on Thursday. Nicholas had his hearing screen done today and he failed in both ears. Hearing loss and deafness is another complication due to extreme prematurity. So now we will have to go to a hearing clinic about a month after his discharge for a more in depth test. He seems to hear us talking so hopefully he just has some hearing loss and is not deaf. He will have an MRI and an eye test done tomorrow.

Saturday, April 11, 2009

He Passed!

Nicholas had his car seat test last night and he passed. Thank goodness! He is still doing well and there haven't been any changes. Mark and I met with the home medical equipment people today and learned how to use his nebulizer, oxygen, and apnea monitor. The monitor will go off for high and low heart rate and a pause in breathing. There aren't any numbers on it so we won't know what his heart rate and sats are. We have gotten so used to the hospital monitors that show that so this is going to be a little scary.

Friday, April 10, 2009

Still doing well

Nicholas is still on track to go home next week. He is doing well with his bottles and breathing. He gained 3 oz in one day so he is getting 2 doses of Lasix today. He also got his Synagis shot today for RSV. The season just ended but he will benefit from it because of his chronic lung disease. It is better to be protected. He should have his car seat test tonight. He has to sit in it for an hour and a half and not de-sat. I'm a little nervous about that. Wish him good luck.

Thursday, April 9, 2009

Still on the Road Home

Nicholas is still doing well and we are looking at discharge next week. They want to schedule us for our overnight this weekend for the beginning of next week. They want to give him a few more days to make sure he is really ready. We brought in the car seat so they will do that test any time. He is still taking 85-90ml from his bottles at each feed. Almost done!

Wednesday, April 8, 2009

5 Months Old

Nicholas is five months old today and almost home! They want us to do our rooming in Mon., Tues., or Wed., and he will be home the day after. He had an echo today and he has a small opening in between 2 parts his heart, but I can't remember what it is called. It doesn't cause any problems and should close up. He will get another echo in 3 months. I got to try to breastfeed today. He didn't really do anything but I will try again. They will let me try once a day. He will get another vaccine tonight. He also has a hearing test coming up and he has to pass the car seat test. We have to bring the car seat in and he has to sit in it for an hour and not drop his sats. He is almost done!

Tuesday, April 7, 2009

No more feeding tube

Nicholas' NP discontinued his feeding tube today so all his feeds are by mouth only. He is allowed 85-90ml depending on how much he will eat. He is up to 10lb 2oz and is 19.7 inches long. He is going to start getting his vaccinations tonight and they will do one every night to space them out. He will get Tylenol and a surface novocaine to numb the area. They also give them sweeties which is a pacifier dipped in sugar water which stimulates the body's natural pain killer. That is nice because he wouldn't get any of that at the pediatricians office. They also lowered his oxygen to 1/4 liter. He is doing ok on it. He is satting in the high 80's and low 90's. Hopefully he will get used to it. His sats are supposed to be between 90-98%.

Monday, April 6, 2009

Go Cubs Go

Nicholas is ready for the Cubs' opening day. His Cubs outfits are too big so he is sporting a hat and a baseball outfit. He is still doing good on the low flow oxygen. He took all 8 bottles yesterday but missed one today. His nurse thinks he was too tired from physical therapy. I think he could have done it. That is the only way he is getting out of there so there is no messing around with the bottles. He did go up to 85ml each feed.

Sunday, April 5, 2009

Good Eating

Nicholas did great with his bottles yesterday and finished all eight of them. He has done well so far today too. They switched him over to regular oxygen and is at 1/2 a liter of flow. His oxygen saturation was at 100 most of the time I was there but they want to leave him where he is for now and start weaning the flow down in a day or so. He is going to get a Synigis shot this week for RSV. RSV is a respiratory virus that can be deadly for preemies. April is the end of RSV season but they are going to give it to him because the virus can still be around in April and they want him to be protected. He will also get his vaccinations this week. I asked about his lungs and our animals and his NP said they will not be a problem. She said studies are showing that children exposed to animals at an early age are less likely to have allergies and asthma.

Saturday, April 4, 2009

Discharge in a few weeks!

I got a big surprise today when I went to visit Nicholas. His NP and doctor said that he should be discharged in about 2 weeks! He is up to full feeds from the bottle and they want him to do that for a week. They are also going to take him off the Vapotherm and put him on pure oxygen. This is what he will come home on. He will also have an apnea monitor. The week after next they will have us meet with the equipment and oxygen people to learn how to use it. We also have to take a CPR class and do an overnight stay for a 1 or 2 nights. I still can't believe we are almost done and talking discharge.

Friday, April 3, 2009

Loves his bouncy chair

We brought Nicholas his bouncy chair and he loved it. He was like OMG there is so much to see! He doesn't like the vibrating part of it but that's ok. Besides the chair, he is still getting 5 bottles and took 2/2 so far today. The speech therapist feeding him was canceled. His Vapotherm was lowered to 2 liters and his steroid breathing treatment was stopped. His thyroid medication was also stopped because his labs showed his thyroid is good now. Looks like we are in the home stretch and we are so ready for him to come home.

March for Babies

Mark and I have signed up to do the March for Babies with the NICU team to help the March of Dimes work towards the day when all babies are born healthy. The walk is only 3 weeks away on April 25, 2009. We would like everyone who reads our blog to either join us or help us raise funds for the March of Dimes. If everyone who reads this donates only $5 we will rasie a lot of money! I have links to our walk websites on the right side of the page and at the very bottom. We have already raised $70 and I set a goal of $350 for us. (Only online donations will show up on our tracker, but you can send us a check made out to March of Dimes too).

We are walking in honor of our Nicholas who was born 16 weeks too soon. Research done by the March of Dimes helped save his life. He was given Surfactant for his lungs after he was born and without the March of Dimes he might not be here today. By sharing our story, we hope to remind everyone of the urgency of the mission of the March of Dimes and inspire our friends and family to join us.

Ours is not the only story of frightening, touch-and-go days in neonatal intensive care with our baby. Premature birth touches half a million babies and their families every year. Babies born too soon are more likely to die or have disabilities. Birth defects pose another serious threat – taking the lives of many babies and cause lifelong disabilities for thousands more. So it’s important for us to help the March of Dimes help moms have full-term pregnancies and healthy babies.

We are doing just that by participating in March for Babies. No one is working harder than the March of Dimes to understand the causes of prematurity and birth defects. March for Babies offers hope by raising funds for lifesaving research, education and innovative programs that offer hope for preventions and solutions for babies born too soon or with birth defects.

One day all babies will be born healthy. But we’ll have to walk to get there! Thank you for your help.

Thursday, April 2, 2009

Nothing New to Report

There hasn't been any changes to Nicholas' orders today. He is still at 5 bottles and 78ml. Speech fed him today so he didn't finish that bottle. I requested again to not have speech feed him. He has never taken a full bottle from her and now isn't the time to mess around. I don't mind her doing oral stimulation with him, I just don't want her to feed him. He is doing so well with the bottles from me and his nurses I don't want speech to hold him back. I asked to stop her feeding him before his surgery too so I hope they listen this time.

Wednesday, April 1, 2009

5 Bottles

Nicholas is up to 5 bottles. He took 2/3 so far today. He was very close with the one he didn't finish and his nurse thinks he was too hot because it was really hot in the room. He lost about 3 ounces from his swelling going down. His surgery area is looking a lot better. That's all for today.