Dec 29- Off the Ventilator!

calm baby...
angry baby...

The above pictures are from the day before Lucas came off the vent. Lucas came off the ventilator yesterday morning and has successfully stayed off all day & all night & all day AGAIN! YAY! I'm super excited. I know he could go back on the vent at any time, but I'm really proud. He's seemed more relaxed off the ventilator and his blood oxygen levels have been much more stable, but he has not been liking them weening him off the pain medication. They increased his feedings up to 2.5 ml every hour over a continuous feed line that goes into his tummy through his mouth. We heard his little voice for the first time yesterday. He likes to knock the nose prongs out of his nose a lot and his little tongue is constantly moving. I think he's ready to eat for real! He weighed in last night at 1 lb 13 oz and he's surprising us all with his progress. Way to go little Roo, keep it up! The below video shows Brandon and the nurse, Kristen, placing his breathing nasal prongs back in his nose & securing it to his little head. At one point he flails his arms and legs out. He was crying, but you cannot hear him on the video.

Update: Dec. 27

Lucas had a better lung scan yesterday and he seemed to either be responding well to the antibiotics, or he didn't have an infection to begin with. They put a line in his tummy to pull out some of the gas to relieve pressure. He had a sensitive day today and yesterday and seemed to cry a lot -- though you cannot hear him so you just see his angry face a lot. When he gets upset his little arms and legs flail all over unless they're tucked in. For the most part we left him alone. His PICC line had a leak in it, so they took it out and put a new one in yesterday. The nurse, Amy, said that they got it in with no problem or second tries. Lucas weighed 1 lb 14.68 oz on Dec 25, but weighed 1lb 11 oz last night. His fluctuation is due to being taken off feeds and continuing the diuretics. We're hopeful they will start his feeding again soon. We might have a better chance of one of us holding him Wednesday. He had his first vaccination- Hepatitis B shot today-- he didn't like that much either. Brandon came up with a nick name for baby--- he will be calling Lucas "roo" because of the Kangaroo care. Friday will be 5 weeks! We'll be updating as things change, but baby is stable and doing ok. We have a good chance they'll be trying him off the ventilator tomorrow morning.

Baby's first Christmas, 30 days old

Lucas celebrated his first Christmas mostly asleep. This morning I read the story of the Blue Santa to him and daddy read the Christmas Story to him. He got a teddy bear, coloring book, baby book, some ornaments, some Christmas vests and baby food for Christmas. Next year will be much more fun for him I'm sure!

Over the last few days, there have been some changes to decreasing his diuretics to 2 doses, then going back up to three again as the fluids in his lungs have changed. Today his xray looked great (better than recent days) and his ventilator settings were low. Yesterday his heart rate was very high (in the 200s) which the nurses said could indicate he's dehydrated, so they cut back on the diuretics to help him retain more fluid.

He was very touchy yesterday. Daddy & I had to see some more episodes of his heart rate & oxygen dropping really low resulting in the nurses having to "bag him" - meaning using a bag valve mask (BVM) to deliver breaths manually because the baby has spasms in his throat at times that constrict the ventilator tube, preventing enough oxygen from getting through. He has these often, but usually recovers on his own. When they last long enough, the BVM uses more pressure to help the baby recover without losing too much oxygen. This was a bit scary to see, but we knew he was going to be ok. The doctor also said that he was going to try to reduce the Fentanyl pain medication that has a tendency to suppress functions of the respiratory and digestive system in an effort to move towards taking Lucas off the ventilator. However, Lucas hasn't been liking the reduction in pain meds. His heart scan yesterday showed the ductus in his heart isn't any more open or closed than it was. It is of "moderate size" and the blood flow across it is low. Until something changes where it is causing an issue with the lungs or heart, the doctors aren't worried about it or looking at surgery right now.

We got a call about 1 AM letting us know that Lucas had a fever and that his belly was distended a little. A look at his tummy showed that it's filled with gas. The doctors are pretty sure Lucas has an infection, but do not see other signs yet that its in his digestive tract like bleeding. He was placed on broad spectrum antibiotics and they have removed him from any feedings, as well as increased his IV fluids to compensate for not being fed milk. This is our main concern right now. We hope it's not something serious and will be watching this closely. Prayers that he will get over this new trial quickly! Mommy is tired today after all the family stuff and wishes she could curl up with baby for the night... looking forward to that!

more pics of firsts

Look at his hair, ok, not quite brown...
Thanks for the hat Kelly. It's a little big but still keeps my head warm!

Daddy & Lucas Chillaxin

Daddy's first (technically second kiss)

Daddy's first Kangaroo care moment, first time holding Lucas! Daddy couldn't have been more excited; it brought tears to his eyes. This is the moment we missed out on during delivery, but was well worth the wait!

Dec 22, 27 days old

Updates today & yesterday...
Lucas had a great day yesterday. They were able to ween him down on the vent settings significantly. He is at 28% oxygen off and on. They did increase his feedings to 2.5 ml over 4 hrs. They heard a heart murmur yesterday and today which could mean his ductus is either opening or closing-- his heart echo today will tell us, but the results arent in, so we'll probably hear in the morning update tomorrow. Hope all continues to go well and Brandon gets his turn at holding Lucas soon!

Baby pictures

I got to hold him!

Tonight is an awesome night for mommy and daddy!

Dec. 20- mommy's first kiss

mommy's first kiss

Lucas will be a month old on Christmas day. Today is his 25th day of life and still so many milestones to go. Every day brings small realizations of the little things most moms don't think twice about. The gift of being able to hold your child, to comfort his pain and to change his diaper without help. The joy of giving him his first bath, bottle and blankie. I realize that because my son was born at 25 weeks, its not my voice he hears most often and the voices he recognizes most are those of his caregivers at the hospital. They changed his first diaper, will give him his first bath and take care of him. But, I'm grateful for every moment and every first... the first time he opened his eye [one at a time :-) ], the first time I could hold his hand, to see his hair turning brown, and today, the first time mommy gets to kiss her little man! So many firsts to come and I cannot wait.

One scary moment today came when Lucas was being repositioned he went into an episode where his blood oxygen dropped below 68 and his heart rate dropped. The nurse had to open his isolette to prepare to bag him incase he did not recover on his own. The episode is caused by the baby's throat spasming and clamping down on the ventilator tube preventing oxygen from getting into his lungs. Bagging the baby helps get oxygen in until the spasm ceases. Lucas has had several of these episodes today, but luckily has recovered on his own every time so far without needing to be bagged. While the isolette was open and baby was recovered, I was allowed to kiss him. Made me sooo happy!

Premature Caucasian, male babies are at greater risk for developing bronchopulmonary dysplasia. They won't diagnose Lucas with Chronic Lung Disease or BPD until he's 28 days or older, but almost every baby born as early as he was gets it because they have to be on the ventilator. After all is said and done, this is one of the conditions that will have a long term impact even after Lucas comes home.

More info on bronchopulmonary dysplasia:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002079/

Possible surgery in the future

I debate whether to make posts like this because there is so much uncertainty about what will actually happen right now. Lucas's lungs were cloudy again this morning. Another pain medication, Versed, has been added to the Fentanyl pain med. he's been given on a continuous drip. The staff removed him from the diuretics yesterday and he gained back about two ounces in water weight. The poor little guy can't seem to get that heart ductus to close all the way. The blood is continuing to flow towards the lungs instead of to the body like it should even the the PDA did get smaller from his last scan. As a result the doctors have put him back on the diuretics to help him get rid of the excess fluids and are working on increasing the amount of breast milk he's getting. They want him to gain some fat and muscle which have aluded my little man thus far. Gaining weight will also help him grow stronger- something he needs in the coming days if they have to do surgery on him to close the PDA.

The doctor advised this morning that they will have a better idea of whether or not Lucas will be sent to Children's to close the PDA by the end of this week. He doesn't want to say to us its a certainty because Lucas might mature just enough in the next few days that it will close on its own, but right now that PDA being open is requiring higher oxygen levels & pressure on the lungs. From how it was explained to me, this is reason enough to consider the surgery to avoid long term damage to his lungs. I will post later this week what is decided as we know. Right now, prayers are for Lucas to get stronger, gain weight and for the PDA to close very soon.

Dec. 17 update

Lucas is doing well today. He is on 40-50% oxygen at the moment and still has some ups and downs with his blood oxygen levels. They increased his pain medication a little bit to make him more comfortable and they put him on continuous feeds to make it easier on his tummy to digest small bits of food all the time rather than a "large" amount of food every four hours. He is still on the diuretics and lost 2 1/2 oz of fluids, but I think he is getting bigger and looking more like a full-term baby every day.

Its hard to be reminded of how long of a road we're on. I get to thinking that 3 weeks passed really fast and the next 3 will go by fast too. Soon I'll be back to work, but it still seems like its been forever too. Its a conflicting feeling. I just can't wait until we can hold him! There hasn't been a lot of change day to day unless he's not doing well, so I'll probably be repeating myself a lot. Baby did get his 1st Christmas card from our friend Donna. Thanks a lot Donna! Its in his NICU room with the stocking Grandma G got him and the bear that Grandma Di got him. I will be getting him his baby's first Christmas ornament soon.

21 days old- 3 weeks

We've made it 3 weeks! We have had only two rough days to speak of and are very grateful for all the continued thoughts and prayers. Though we are reminded that our son is a sick little boy, we are distinctly aware of how much worse it could be.

His lungs continue to look better than a few days ago, though his PDA remains open a small, itsy bitsy bit. He has gained weight, though the doctors are pretty sure much of this weight gain is water weight (caused by the indomethacin) and are keeping him on the diuretics and cutting back a little on the fluids he's getting to manage this. His length gets measured every Sunday and we found out yesterday that last Sunday he measured at 12 1/4 inches. This means he's grown 1 1/4 inch since Nov. 25! It's amazing to me how much more important inches and ounces are to me now! They started him back on feedings (feeds they call it), though at a small dose. He's on ~ 40% oxygen (we breathe at ~21%) but they did scale down some of the ventilator settings (dont quite know how but its a good thing).

Its nice right now that our biggest decision concerning Lucas is whether or not to get the picture with Santa in the NICU that they offer. Share your opinion on this in the comments... I'm not sure this is how I want to capture his first Christmas or not since he cannot be held.

I'm doing ok, but am experiencing a bit more pain lately. I'm off the pain pills all together (too stuborn and/or forgetful to take regular ibuprofin) and I've probably been doing more than I should be. I guess this experience has taught me that I have a higher pain tolerence than I once believed! We're grateful for a lot right now and happy to be living in 2011 rather than 1911 or 1811-- I might not be here if I was born in another century.

Dec. 14- 19 days old

Lucas getting his oral care from mommy

The doctor informed us this morning that Lucas's xray of his lungs looked "much better" this morning. He was supposed to get another one tonight and we haven't heard back on it yet. This is good news, although they don't know which of the three things they did made a difference. I suspect its likely a combination, but for sure the diuretics seemed to help the last time. They're still working on closing the PDA and cannot feed him until he comes off the indomethacin. He should have a heart scan tomorrow or Friday to see if the medicine is working. The doctor said though he's a sick little boy, he's happy with Lucas's response to treatment and is optimistic.

Update: heading for another down

I was hoping to write tonight about Lucas's awesome progress with his feeding and how great he's doing. He was up to 6.5 ml of food today, but at 5 PM, it was decided that due to some medicine he now needs to get to close his PDA, he cannot be fed while on it. Doing so may cause infection such as necrotizing enterocolitis. Lucas had two lung scans today. The first one this morning came back hazy indicating fluid in the lungs again. He was given a diuretic to help him get rid of the excess fluids in his body this morning. He gained some weight last night, over an ounce and a half, but the doctors believe this is water weight mostly. He weighed in at 1 lb 9 oz last night.

He had another lung scan at 4:30 PM and it showed that his lungs have gotten worse since this morning. There are a few possible reasons for this- which I think I touched on in an earlier post. His PDA causes fluid to back up into his lungs. The lungs having fluid in them makes it difficult for them to move blood to oxygenate it. This usually means baby has to be on higher ventilator settings- needs more oxygen and higher pressure to get oxygen to all his organs. The higher pressures and oxygen levels can cause more damage to his lungs, eyes and brain.

Right now, the doctors are treating the PDA and hoping Lucas will respond to the indomethacin medication to close the ductus without the complications he experienced two weeks ago. They have Lucas on a pain medicine that is on a continuous drip to stay ahead of his pain. They are continuing with the diuretic medicine and are considering putting baby back on the oscillating ventilator. They're increasing his IV fluids, adding another type of fluid to make sure Lucas is getting enough calories without the breast milk. Though they won't say specifically "Lucas has chronic lung disease" it is pretty much inevitable for his age and because he has been on a ventilator since birth. He is likely to remain on it for several more weeks. We're praying his lungs clear up without much intervention, his PDA will close with the medicing without complication and that we get back to having good days.

~Kristen

Find definitions for preemies at the link below:
http://preemies.about.com/od/preemiehealthproblems/f/What-Is-A-Micro-Preemie.htm

Todays Update: day 16

Lucas is doing well today. The doctor advised that he will actually be getting feedings every 3hrs instead of every 4 and he will be getting 3 mls. His plumbing works fine as he has already peed on everything once and had a nice big poopy surprise for the nurses the other day.  That's one thing I'm just fine letting them handle!

He's really red today which the nurse explained is probably his reaction to stress and he's still really sensitive to light, sound and touch. Thanks for following along.

Todays Update: 15 days old

Today Lucas's lung x-ray looked better- less cloudy. The medicine they gave him must have helped get rid of some of the excess fluid in his lungs.  He lost another ounce by his weigh in last night and is 1 lb 5 oz. Its amazing and slightly discouraging to me that he's gone 2 weeks without gaining weight, but the doctors dont seem concerned with this when I ask about it. His feedings are being increased from 1 ml to 3 ml today every 4 hours. I'm hoping that this will help him get a little bit bigger and stronger. He did come off of the nitric oxide gas completely today and will be having another heart echo on Monday.

Lucas is still only needing oxygen levels below 40%. Most of the time he only is on around 25-30% oxygen, but baby boy was particularly sensitive today. Light, sound and touch seems to make his oxygen levels in his blood go down. Its very interesting how stress presents itself in a preemie. When we were leaving, they gave him medicine to keep him calm and comfortable. We didnt spend much time with him today, but I did hold his hand and daddy talked to him. I hope to spend a lot more time at the hospital tomorrow.

I asked the doctor this morning what types of things they look for when they decide to take babies off ventilators completely - I know we still have a long time for this. He said coming off ventilator depends on wieght and strength of the baby's lungs. They look at blood gases to see if he's getting CO2 out of his lungs and how much he is breathing over the ventilator. When the baby can show he can get the CO2 out of his body successfully, has gained enough weight and can keep his blood oxygenated, they will start weening off ventilator. This will not happen for sure until the PDA gets closed. We have a long road ahead, but two weeks of this journey are over and he's surprised me thus far!
~Kristen

Today's update

Lucas had an X-ray of his lungs this morning. The X-ray looked cloudier than previous scans. The possible reasons for this are infection or because the PDA is causing more blood to travel to his lungs than the doctor would like to see. The doctor started antibiotics again in case of infection and he also said he was going to wait on allowing the PDA to close for a few more days. Lucas lost 1 oz since his last weigh in - they weigh him every night after 8 PM. He is now 1lb 6oz. The doctor also said that he'll be giving him some medicine that makes him pee even more-- so don't be surprised if he loses more weight! The baby is still on low oxygen levels- about 28% and has only had a few heart rate dips today when they're moving him for tests or cares.   So far, so good on the Lucas front today- we'll be listening to see if his lungs look any better after the interventions being made. They've been making progress weening Lucas off the nitric oxide gas, but I forgot to look to see if they had to bring it back up or not... silly momma.

As for me, my blood pressure was up a bit this morning. I was taken off one of the medications Tuesday, but I took my pressure 4 times and it was lower each time (started at 185/102). Yay for Yoga breathing!  I just need to not stress out and I'll be ok-- easier said than done! Good news is I haven't thought about Christmas shopping at all... The greatest gift I can offer is my friendship and love, so Peace, Love and Happy holidays to all!
~Kristen

Hello World

Lucas had both eyes open today. He also has his tongue sticking out now that he's on the other ventilator. Only updates today are that his blood sugars were high so they gave him some insulin this morning. He also had another heart echo. The PDA is still open- its small but the blood is flowing the way the doctors want it to so they're not worried about it. They will continue with medicine to get the ductus closed. I got to help with cares again today - swabbing his mouth is also much easier with this ventilator as there is more room to get into his tiny mouth to rub his gums.  Baby boy does not like to have his diaper changes, but he quite enjoys being laid on his tummy.

Keep getting stronger little man!

Lucas had a great day today! He was taken off the oscillating ventilator and placed back onto the quieter ventilator that breathes more normally. You can actually see on the screen when Lucas is trying to breath on his own (over the ventilator) and when the ventilaor is breathing for him. His right eye was much more open today. We have to remember now that he can hear even more and he reacts sensitively to the noise in the room. The oscillating ventilator made so much noise that it didnt bother him as much before.

Because of the smaller tube, he has a little more room. You can see his nose a little better and his little tongue was sticking out, but I didn't get a picture because we had to keep the lights out. He didn't have any scans to update on today, but his brain scan yesterday was clear.

I'm happy about how Lucas has been doing. I hope that this week is just as good and that he continues to eat and grow. I also hope to get the chance to help with his cares. I forgot to mention yesterday that I helped with taking his temperature and doing his oral care - swabbing his mouth with milk. It feels good to be more involved and to see how they take care of him.

I never really understood how much my life would change by having a baby and I know this is just the beginning. It was nice visiting work and friends there as well as Cathy & Stevo at the hospital. Thanks for your support. Happy Wednesday!

11 days old

Lucas is having a great day again! His oxygen needs on the ventilator are down to room levels- 21-22% which is great. We don't know when he'll be ready to be off the ventilator, but the lower the settings, the lower the risk of long term damage. He had another arterial line placed last night for continual monitoring of his blood pressure. His pressures are in the 40s which is ok. They inserted a new IV to pull blood from for tests in the baby's scalp because those veins are easy to see. They'll be weening him off the nitric oxide gas today and his PDA is responding well to stopping the prostaglandin.

Baby's left eye is open even more. I know he can't really see me yet, but it feels awesome to have him look at me. I got to hold his little hand today and he gripped my finger. I'm definitely a proud momma!

I think all the prayers are working and again, I thank you for them today and in the weeks to come.
~Kristen

Update from this morning...

Well, so much for "over the next few days!"  They stopped his prostaglandin today to allow his ductus to close on its own because his heart echos are showing the blood is now flowing left to right, which is what we've been waiting for. This means his heart is pumping like it should and hopeful means it will handle having that ductus closed.

The doctor also said that he wanted to start feeding him again. He was not concerned with what the nurses pulled from baby's stomach because he said pulling the milk back out of the line creates enough suction to pull bile from the upper intestines.  In short-- baby eating & baby pooping! A lot! :-)
He's also peeing a lot. He lost 3 oz which was probably water weight. He weighs 545 grams or 1 lb 3 oz. I hope that now he's getting breast milk that he will start gaining weight. He only gets 1 ml every 4 hours or so- not very much. He will also continue getting liquid nutrition (fluids & glucose) through his PICC line.

He still has his little heart rate drops, but again, doctor isn't concerned at the moment. Blood pressure on last check was 34 which is great for my preemie pumpkin. All is well today with our son! And more exciting news-- his right eye is now opening too!!! He looks more like an alien than ever, but he's my little alien baby and I love it!! I'm a proud and excited momma, daddy's pretty excited too YAY! (forgive my exclamations)
Hang in there little baby boy!

~Kristen

Good days

Lucas has had some pretty good days over the last 48 hours. He still has small episodes throughout the day where his blood gases and blood oxygen level are below 80%, but these ups and downs are normal. He's been on his lowest oxygen levels since he was born 25-40%, mostly 25% all day yesterday

His greatest opportunity yesterday was that his heart rate kept falling suddenly and dramatically at unpredicatable and sporatic times throughout the day below 90 beats per minute. He's normally between 140-170 beats. His heart beat would drop suddenly and then recover, sometimes within a few seconds, sometimes in a few minutes. The doctor was not overly concerned because his oxygen needs were so good, but he was curious what was causing Lucas's heart to do this. Lucas's echo of his heart and lungs all looked normal.

Right now we continue to pray for more good days. The Umbilical cord IV has been removed because of the increased risk of infection leaving it in poses. A PICC line has replaced it (defined a few posts ago). Kristen is excited to be producing more and more milk for Lucas, but the attempt to feed him yesterday resulted in the decision to wait a few more days because baby wasn't digesting the first dose he was given.

Next steps: Baby will be continue receiving nurion via IV through his new PICC line. Blood will be drawn and transfused on a daily or every other day basis. In the next few days, doctors will probably stop the Prostaglandin to let the PDA (heart ductus) close up on its own again. They will also begin weening baby off the hydrocortisone steroid thats been keeping his blood pressure high and stable. As these changes are made, we face the potential of some more tough days, but eventually baby needs to be stable on his own, without the use of steroids which have their own set of side effects.

Thank-you for the continued prayers!

New pictures...

You can't really tell, but Lucas is starting to open his left eye... super exciting!

Also, the volunteers found out that Brandon is a mechanic. They changed his name on the window to reflect this!

8 days old... baby's first snow day

My sweet son is doing well today. His numbers look much much better today than yesterday. I've been here most of the day watching how the nurses work with him. He's still up and down on his blood gases and blood pressure at times. They've taken him off the blood pressure medication dobutamine which is normally used to treat heart failure. His blood pressures were irratically low yesterday. He is now on a steroid to help increase his blood pressure. His blood pressure today has ranged in the high 30s to 50s, but the doctor said that he is ok with this. Lucas was weened down from 82% oxygen at 11 AM down to 49% as of 4:40 pm, but each time a procedure has to be done like an x-ray, ultra sound, or placing a new line to draw blood from my boo doesnt like it so well and he tends to need more oxygen.

Right now they are running a new arterial line because the one they placed yesterday already has stopped letting them draw blood from it. I'm not sure how long this takes, but its been about 45 minutes. I'm hoping he's doing well back there and we continue to have a good night. Bright news! The nurse said she saw Lucas try to open his left eye! I think in the next few days we will see his tiny eyes! I'm super excited about this.

 For all those praying for us- THANK YOU! I believe God hears you and he's rooting for our Lucas. Before all this, I didn't pray enough, but I may just be making up for it now. Thank you Lord for my friends, my family and every moment I get to know my son. Bring us safely through this trial and give me courage to get through the downs and rejoice in the ups. Amen. Its a good thing God is a good translator :)

~Kristen

Tough News: Episode 2

Today we had another rough day. Mr. Lucas struggled with his blood pressures most of the day. The doctor explained that though the baby seemed a little more stable today, he's actually more worried about the baby because we don't know what's causing the blood pressures to go so low. The blood pressure number we look for shows as a 26 on the monitor (red). 26 represents the gestetional age and where Lucas should be at or above. His blood pressures while I was here ranged from 19 to 28.  The doctor started to tell me how badly Lucas was doing. While doing this he pressed on Lucas's belly, putting pressure on his liver. Lucas instantly improved. This was because when getting fluids, the fluids built up around the liver and by pressing on his belly, the fluids were sent quickly to his heart and helped increase his pressure. But by the time I left at 3:50pm, his blood pressure was back to 22.

Options for increasing blood pressure: The NICU staff can give and have given blood transfusions and saline to try to boost the amount of fluids his heart has to pump. They gave the baby a steriod which also serves to increase pressure. Along with blood pressure medication, the nurses and doctors have used all these techniques and Lucas is currently looking good on all his stats...

But... Lucas has been on 90%+ oxygen most of the day (blue). What does this mean? When the baby requires so much oxygen to maintain his blood oxygen levels at 90+% it means that if the baby's blood oxygen levels go below 80%, there is little that the doctors/nurses can do to help the baby. At that point you can't give any more oxygen. As I write this post, he was brought back down to 49%. The other problem is that the treatments of steriods and increasing fluids are temporary solutions to the blood pressure issue. They temperarily treat the symptoms but aren't fixes to the problem. The problem is that the baby is premature and his heart can't handle having the PDA closed, but can't really handle having the PDA open either.

His blood pressure was better- 30; his blood oxygen was 87-94% and his heart rate was 176 at 7:35 PM.. His new arterial line was failing to give a proper reading for his blood pressure, so they're using the small blood pressure cuff to measure. They are looking at his heart every day to determine if having the PDA open will be beneficial or not. The doctor said he has never had to open a PDA back up when he's closed it on purpose. When he spoke to me this afternoon he thought the baby not make it through the afternoon. He said that every day that the baby is on a ventilator puts him at risk for long term problems. If his oxygen needs stay the same or get better- we'll be happy for now, but if he spends a lot of time at 90% or better, we may be facing the most difficult decision of our lives.

There are no answers, just waiting... We need those prayers.
~Kristen

Lucas update!

You can see his little hair!

Kristen and I are sitting at the hospital and we have an update on Lucas's status.

Lucas's oxygen needs are better. He went from 93% at 7 a.m. to 63% at 11:30 to 49% at 1 p.m. The doctors are continuing to give him nitrous oxide to help his lungs. The doctor said that they did another scan of his heart and the medicine is working to open the PDA back up, which seems to be helping his breathing and relieving the pressure on the right side of his heart.

For now, they are going to keep the PDA open so that it doesn't cause his heart to have excess pressure. Down the road, if there is too much blood going to his lungs, they are going to have to look at closing the PDA by then. Hopefully, if it comes to that, his heart will have developed more so that it can handle the pressure of the valve closing.

They took another look at his brain today due to the trauma he had last night and found that there wasn't a difference between the two scans, indicating there's no damage. Sometimes, however, it takes time to show brain injury or bleeding. They will be scanning his brain again on Tuesday pending no issues.

He received a blood transfusion, which improved his red blood cell count. His white blood cell count has improved.

His jaundice is a little worse, so he's back on the phototherapy for now.

The doctors were able to get the arterial line in this morning, thank goodness. So, right now he's stable and tiny as ever.

The rollercoaster ride has already begun. We're on our second climb up to the next plummet.

~Kristen and Jamie

Mommy's first picture

Tough News

Yesterday and today Lucas's status declined. He struggled most of the day with his lungs and getting enough oxygen through his little body. At midnight I got a phone call from the doctor who advised that Lucas is having an unusually difficult response to his PDA (heart ductus) closing. The medicine we hoped would close the ductus began working, but as the ductus closed, this created pressure on the right side of Lucas's heart. The cardiologists arent seeing exactly why the pressure is not being released properly, but is has caused the right side of his heart to be enlarged (according to Brandon's recount from last night) and an xray of his lungs show an excess amount of fluids as the blood becomes backed up. Lucas's lungs are having difficulty inflating because of the pressure. Over night, the doctor had to put Lucas back onto the oscillating ventilator and put him on 100% oxygen. When I spoke with them at 7 AM, he was down to 93%. Ideally, the doctors' goal is to keep oxygen needs below 50%.

Another complication overnight was that his arterial line that the doctors pull blood from for testing his blood oxygen levels failed. They were unsuccessful getting another back in because Lucas is so small and his arteries are reacting poorly to being poked. They decided to stop trying for a while and were looking at re-attempting later today or tomorrow. The main issue with this right now was that the blood gases they pull just from poking him are not as accurate. The doctor said that they can get by for a few days without this line, but will try again. He also said that Lucas is so fragile right now that a moderate event could tip the scales the way we dont want it to go.

Treatment: The NICU staff will continue to adjust Lucas's oxygen to try to get as much in his blood as he needs. They are treating the contracted blood vessels in his lungs with nitric gas torelax them. He is being given Prostaglandin to reverse his PDA treatment (open back up the ductus) to relieve pressure. They're looking at his heart to figure out why the ductus closing caused the problems it did. Eventually they will try to get another arterial line going.

To better understand the odds we are up against, I've put below research findings for Lucas's situation:

NICHD Neonatal Research Network (NRN):
Extremely Preterm Birth Outcome Data

Based on the following characteristics:

Gestational Age (Best Obstetric Estimate in Completed Weeks):	25 weeks
Birth Weight:	456 grams
Sex:	Male
Singleton Birth:	Yes
Antenatal Corticosteroids:	Yes

Estimated outcomes* for infants in the NRN sample are as follows:

Outcomes	Outcomes for All Infants	Outcomes for Mechanically Ventilated Infants
Survival	41%	45%
Survival Without Profound Neurodevelopmental Impairment	26%	28%
Survival Without Moderate to Severe Neurodevelopmental Impairment	13%	14%
Death	59%	55%
Death or Profound Neurodevelopmental Impairment	74%	72%
Death or Moderate to Severe Neurodevelopmental Impairment	87%	86%

* These estimates are based on standardized assessments of outcomes at 18 to 22 months of infants born at NRN centers between 1998 and 2003; infants were 22 to 25 weeks, between 401 and 1,000 grams at birth. Infants not born at a Network center and Infants with a major congenital anomaly were excluded. The first column of estimates is based on findings for all 4,446 infants in the study. The second column of estimates is based only on the 3,702 infants who received intensive care. The rate of a given outcome had intensive care been attempted for all infants is likely to be intermediate between these two estimates. Sonographic estimates of fetal weight may be used in anticipating birth weight, while assessing the minimum and maximum likely birth weight consistent with the potential error of sonographic estimates.

            These data are not intended to be predictive of individual outcomes. Instead, the data provide a range of possible outcomes based on specific characteristics. Researchers conducted their analysis at level III NICUs, specialized facilities offering medical care for newborn infants. The statistics may not apply to infants born at lower level NICU facilities. Please note that these data provide only possible outcomes, and that the estimates apply only at birth. It is also important to note that outcomes change over time and that they differ for a variety of reasons, including NICU features, patient population, obstetric complications and care, and care after discharge home.

            If you choose to use these data to determine possible outcomes, please remember that the information provided is not intended to be the sole basis for care decisions, nor is it intended to be a definitive prediction of outcomes if intensive care is provided. It is important for users to keep in mind that every infant is different, and that factors beyond these standardized assessments may influence infant outcomes.

26 weeks today, 5 days old

Lucas is five days old today and would have been 26 weeks along. He had a challenging morning today as his oxygen levels dropped and his lungs appeared to collapse some. His heart rate was irratic while they worked to stablize him. The NICU team put him up to 100% oxygen for a while but by 11 AM when I could see him, his heart rate and blood oxygen levels were all stable. This is one of the first scary moments but it was a relief to have it explained starting with "Lucas is stable now, but..." The doctor still has him off the photo therapy light for jaundice but reminded again that the jaundice will likely get worse and need to be treated again.

Because of the episode this morning, the ultrasound tech was unable to do the scan of Lucas's heart again to see it the PDA treatment worked. The next biggest hurdle for us is getting this heart valve closed. Until it is, Lucas will continue to have issues like this morning because his heart is not pumping blood and oxygen the way its supposed to. This may mean Lucas will have to have surgery which means he'll be transferred to Children's Hospital. It increases the risk we'll lose him too. The doctor is looking at his options to remove Lucas's umbilical cord IV and insert a ***PICC line because it lasts longer and is more suited for the efforts of giving Lucas medicine

 We are gathering hope in the success stories of other micropremies, but are reminded daily to be prepared to lose our son. Going home without him today was hard but not nearly as hard as being home alone with an empty crib knowing it may never have my baby in it.

The bright news today is that the new medication I started last night has brought my blood pressure down well and I'm maintaining below 150's/90's. I'm moving slowly, but my furry babies were as excited as I've ever seen them to have me home. I've got plenty of chocolate to make me feel better and most of my fish lived through me being away though Brandon forgot to feed them most days. Thank you for follow our story and I hope you have a blessed night!

~Kristen
P.S. Prayers and best wishes to Aunt Alisa and her family for her surgery and recovery today.

***     Definition: Percutaneously inserted central catheters (PICC lines), are long, thin, plastic tubes that travel from a vein in an arm or leg into one of the large veins near the heart. In premature infants, they are used to deliver fluids or medications.

A PICC line is similar to a peripheral IV, but is longer and lasts longer. Premature infants have fragile veins, and peripheral IVs usually last only 1 to 3 days. A PICC line, though more difficult to insert, can be used for 1 to 2 weeks or more.  PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices.

Staying another night

Just as Brandon and I were ready to leave, the nurse advised she needed to check my blood pressure.  Upon checking, it came back high at 169/120  which sounded crazy. We did it again and it was 162/98.  A half hour later after laying down it was 175/99.  So alas, I'm staying here another night while they try different medications to lower my blood pressure.

Good news though! Lucas's ultrasound of his brain came back with everything looking normal. There was nothing alarming at this time about what they saw on the scan. Plus, the nurse told Brandon that there are indications baby is attempting to breath some on his own on the new ventilator. Mommy and daddy are happy with todays progress and even happier that we got to touch him again for the first time since Saturday. We have a few more pictures, but I cant figure out how to post at the moment and I'm supposed to be relaxing so I'll work on it tomorrow.
Lets see what Wednesday brings...

Four days old and Counting...

Lucas update! We got positive news this morning from Dr. Kerr in the NICU. Lucas's electrolites have improved and so has his jaundice. They're taking him off of the photo therapy, although the warned that most likely he'll have to go back on later. This is a good sign. He was removed from the oscillating ventilator and placed on the regular one that means his need for higher oxygen levels has reduced.

The results of his heart scan show the PDA (open heart valve issue) was not fixed with the first treatment, so they have given him a second treatment and will look at his heart again. If his PDA does not improve, it is possible that they may need to send him to Children's for surgery, but they will only do this if the impact of the PDA is greater than the impact surgery would have to his health. The scan of his brain has been done, but as of right now, the results are not in.

Brandon and Kristen are excited to have some positive news to help keep our heads up and staying positive. We continue to pray that things will go well and remain educated about what might not go well. Brandon prays every night for his son and other families going through the same thing.

Mommy Update

This week has been one of the scariest of my life. I went from common complaining to being told to make a choice between my life/health and giving my son a better shot at his. I experienced a lot of 'firsts' including my first surgery, first hospital stay, first baby and first realization that my whole life has just changed. At first I struggled to fully grasp my situation and the feelings I've been having. I've learned a whole lot about premature babies, whats normal and that I'm not crazy for struggling with my emotions as I've been. Everyone has been extremely supportive and I'm discovering that I'm stronger than I ever thought I could be, which I hope lasts over the next three months and beyond.

The hospital out here and the staff are amazing! I've never felt so well taken care of or felt such concern from utter strangers. The nurses fill many roles from housekeeper to friend. Without their support and concern I think that this would have been a much harder process. I am still struggling to control my blood pressure and still have moments where I am lectured to take it easy, but most who know me know this will be a greater challenge. I will do my best to remember that I must take care of myself so I can be around for my Lucas and continue working with my doctors to find the right medication combination to keep me safe and healthy.

No matter what happens with my son or myself, I feel all of this is happening as its supposed and for a purpose. I don't ask why its happening to me anymore. I ask instead who is this going to make me be going forward. My challenges are so small compared to my son's. He is my inspiration and I cannot wait to be the mommy I've always wanted to be...   ~Kristen

All stable on the Lucas front.

What weighs 1 pound, yet is made of pure awesome?

Answer: Lucas Matthew Sharp!

It's good and bad to say that things are "same old, same old". On the good side, Lucas hasn't really gotten worse. He's very sensitive today - so the nurse told us that when he would need to be touched earlier in the day, his desaturation on his oxygen would go lower, which meant they needed to increase his oxygen.

He's currently at 50% oxygen.

We haven't gotten the test results back on his PDA (heart valve condition), but that's because it was run in the afternoon today and we're unsure of how long it takes to run the results. The cardiologist was very very busy today.

The head scan is due for tomorrow.

He's still stable.

It's going to be a slow moving process. We understand that. My sister said, "We just need to make it four more days." When we get to the end of the week, Lucas will have hit a huge milestone. Baby steps. Slow and steady wins the race.

Kristen has made tremendous strides in her milk production. She's still producing colostrum, but a lot more of it.

oh, and LUCAS is POOPING! I forgot the name they called it, but pooping is a good sign!


I also know that the volunteers were gone for the holiday and so they didn't have his name on the window, but today I saw that they had put it up:

We know he's very very sick, but it's still nice to see that they're making this more of a home for him.

We're looking ahead to the immediate future. We know about the honeymoon phase that many preemies go through, and we're preparing ourselves for the rollercoaster ride that (hopefully) will last the next few months. Kristen and Brandon have already started their emotional trials and tribulations, and again, thank you very dearly for the support.

Kristen is expecting to be released tomorrow.  And now... for cute, super adorable prints:

First Daddy Photo

Kristen also said they got little handprints and footprints. When we have pictures of those, we'll upload them, too. :) 

Baby steps forward...

**Note from Jamie**
I've enabled you to leave comments "anonymously" so that you don't have to have an account or a Facebook account to leave comments. Please leave your name so we know who is directing the comments. Thanks again for your concern!

Update from Kristen:

Latest update from NICU: Lucas is still stable and his blood oxygen levels are good. His weight and white blood cell count are still of concern. He will have another heart scan on Tuesday to see if his PDA has improved. We think they put off the ultrasound of his head, but we need to double check.

I was able to successfully produce some collostrum for Lucas through pumping which was very exciting for me. I want to help him get stronger! My blood pressures were pretty high this morning, but they put me back on the medicine to bring it down and its been better later throughout the day.

Update from Kristen

At last visit, little Lucas was on the oscillating ventilator and responding well- his blood oxygen levels improved. However, he was too sensitive tonight for Brandon or I to touch him. We will be hearing more about the ultra sound of his brain tomorrow that looks for hemoroaging- a potential condition in preemies. My pumping schedule is 8:30, 11:30, 2:30, 5:30 repeating. If you'd like to visit, please plan 1/2 hour after these times and call first so I know to expect you and tell you where I'll be. We have decided to limit visitors to the baby to immediate family for now to reduce stimulation to his environment. Thanks again for all the prayers and support!

1 day 7 hours strong!

Hello everybody!

I'm sitting at the hospital with Kristen and Brandon bringing you updates about Lucas.

Quick update on his status:

• Lucas has lost some weight, which is common in preemies like him. He's at 1 pound  now.
• He had some trouble breathing this morning. He's having trouble converting his blood gasses. The doctors are switching him to a different type of respirator called an oscillator which will help do that for him.
• They tested his heart today because he was having some blood pressure issues. When babies are in the womb, they have an open valve in their heart which is supposed to close when they are born. The neonatologist told us about this on Wednesday and said that with preemies like Lucas, sometimes the heart doesn't realize that it needs to close. This is called patent ductus arteriosis.
• They're monitoring his heart and if it looked open, they'll give him a shot.
• We don't have the results back yet on that.
• He has high levels of billirubin, which causes jaundice. They're giving him phototherapy for that condition.

The good news: He has 10 little fingers, and 10 little toes. He's super active, and he made it through the first 24 hours!  He is also peeing normally.

Kristen says he's adorable, and I agree :) Kristen says she is able to have a few more visitors, but she needs to know ahead of time if they are coming. She is starting to pump every three hours, so she wants to make sure if she has visitors it's not during that time. She still is limiting visitors to one or two at a time. Please let her know before you come. Hopefully, she expects to be discharged on Tuesday, but she won't be returning to work for a little while.

Here are some pictures and a video of baby Lucas:

More information about micro preemies...

I talked to my sister again and she appreciates all the support, but wanted me to collect some information. She is on visitor restriction because she's still being tested for a lot of things. The reason she was in the hospital and had to deliver early was because her blood pressure was sky-rocketing, and she needs a lot of rest to get that under control.

 I'm debating if I should even be visiting her or if we just need to give her time. She's very very tired. So, at this time only immediate family (so far it's just been Brandon, my parents, his mother, and me) are visiting.

She's thinking of coming up with a visitor schedule so that she has time to rest but also has time to see people, but she's groggy and sore - so I'll let you know if we come up with anything.

She also asked that I share some information about Lucas and what babies in his condition are likely to experience.

Earlier I mentioned that Lucas is in an isolette in the NICU and that it's very dark. The main thing he needs right now is dark and warmth to simulate being in the womb. He wasn't supposed to come out until March. Kristen said that although it's nice that she and Brandon and family want to see him, the act of visiting him is strange stimulation for him because he's not supposed to be out of his shell for a couple more months.

He's 25 weeks, but his weight makes me think his development is closer to 24 weeks. Right now, his lungs will not have developed fully. Lucas is on a breathing tube. He's also on an NG tube because he hasn't developed the ability to suck, swallow, or probably even cry. His eyes are closed because his eyes have not fully developed. He needs as much dark and as much quiet as possible. He's completely swaddled and covered because his body lacks the fat to produce heat and warmth.

Infection is a huge risk for Lucas because he will be less he will be less likely than a full-term baby to fight them off. I was so nervous today that I washed my hands AND sanitized them, and I didn't even get to touch him or see him beyond the glass case he was in... it's scary!

For more information on complications that happen with micro-preemies, I've found these websites very helpful (including the hospital that Lucas is residing):

http://preemies.about.com/od/preemiehealthproblems/f/veryprematurebabies.htm
http://kidshealth.org/parent/growth/growing/preemies.html?tracking=P_RelatedArticle#
http://www.bestcare.org/mhsbase/mhs.cfm/SRC=SP/SRCN=serv_detail/GnavID=68/servid=390

So... what does this mean for us? It's so scary to know that Kristen's little one is stuck in a room virtually by himself (I mean, he has a lot of support, but we can't hold him and we're being asked not to see him). Kristen's too sick right now to be able to see him. So what do we do?

Well, we have some options. I explained to Kristen that I really want to be able to see him to take some pictures so I can keep everyone updated on here. She's going to see about getting me a special pass to visit him by myself if she or Brandon can't be there. I promise that as much as I can, I'll update. This way Brandon can focus on his family, and I'll focus on the rest of us who are worried and want to know details.

If you want to give items to the family, the Methodist Women's hospital has a list of acceptable items and unacceptable for the NICU:

http://www.bestcare.org/mhsbase/mhs.cfm/SRC=SP/SRCN=serv_detail/GnavID=68/servid=392

• No stuffed animals
• No plants or live flowers
• No balloons

Appropriate gifts include:

• Books
• Baby hats
• booties
• photo frames or albums
• music cds
• restaurant gift cards
• help with transportation or home care

Kristen and Brandon are going to be at the hospital for a long time, and since baby Lucas can't wear clothes because he's technically still growing and developing as though he were inside the womb, it's probably not advisable to bring clothes or diapers. The hospital has all the equipment they need for that.

I've been reading a lot about what is awesome to provide for the parents of  a NICU baby. Kristen and Brandon will benefit from your well wishes, but they'll be making frequent trips here from home (which is a considerable distance - 22 minutes each way; about 14 miles each way). So, gas cards and restaurant cards would be great if you want to get them something.

If baby Lucas pulls through and he improves and grows, we will have a baby shower for him. Right now, the first 24 hours, the first week, the first month is critical in his development. We really just need to wait and see.

Thank you again so much for your well-wishes of support, for your prayers, and for your kindness. Please email me if you have any questions: jamie.demson@gmail.com

I will do my best to keep you updated.

Baby's here!

I've been hearing that a lot of people are following this blog. Thank you so much! Kristen and Brandon are very appreciative of your thoughts and concerns.

I talked to Kristen, and I wanted to wait until I had a lot of information before posting. So, here it is:

Lucas Matthew Sharp was born at 9:03 a.m. this morning by cesarian. He weighs approximately 1 pound, 1 ounce, and I don't know how long he is, but Brandon and I estimated he is a little longer than one man's hand (as he has a picture of the baby being held up by the doctor, which I won't post because it's bloody).

I was able to visit the NICU today and see him. It's very dark because he needs to be protected so he can grow, but he has a whole room to himself. He's sooo tiny, but his color is really good. The nurse said that he had some complications getting the tubes in, but they're in now and he's stable. He's a pocket-size little piece of adorable if you ask me.

Kristen is asking that only immediate family visit her at the hospital. She's very sore and needs a lot of rest. Plus, it's probably very stressful knowing that she won't be able to see her baby (due to having just had major surgery) outside of seeing pictures. We won't be able to hold him for a while either. She does appreciate your warm thoughts and prayers.

If you want me to tell her anything, comment on this post, and I'll make sure to get the message to her.  You can also add me on Facebook: Jamie Demson.

Here are some pictures of Lucas (and Lucas accessories) from today.

Right after he was born.

It's dark, but he's in his isolette now. You can see his fingers.

Much clearer than the first picture. The goop in his eyes is to keep them closed so they can develop.

Diane's cellphone on top of one of his diapers. The diaper fits into her hand, and it's actually too big on him!

And we wait...

Happy Thanksgiving, everyone!

Everyone is hoping that the longer we wait, the better chance little Lucas has to develop and be stronger when he is born.

This morning Kristen felt sick, and the doctors upped the amount of blood pressure medication she is on. Her body isn't reacting positively - her blood pressure hasn't gotten worse, but it hasn't gone down either. They also cautioned her about the number of visitors she's been receiving because the act of talking and having people around doesn't help her blood pressure.

She's had a headache all day.

We're not sure when the baby is going to come, but we have a feeling it will be tomorrow (last night the neonatologist said it will be tomorrow anyway). Kristen's kidneys have been tested and she has another test to go to see if it's time for the baby to come out. The test will probably be tomorrow at 7 a.m. and then they'll make their decision. We predict she will have the baby tomorrow morning or afternoon.

While we wait, I've been reading about premature birth. A baby like Lucas (last Wednesday he was 456 grams and he needs to be 500) who is born before 29 weeks is not just a preemie, but a micro preemie. He will have a breathing tube when he's born, and he'll be in an isolette for the next few months.

I also read about the March of Dimes, an organization that works to raise awareness about premature birth and to help mothers who deliver early. I found a couple websites with personal stories about babies like Lucas, and I found a cool website where this woman makes clothes specifically for NICU babies. I'll post the links below.

http://www.marchofdimes.com/
http://www.perfectlypreemie.com/catalog/

So, we begin...

Meet baby Lucas.
He is my sister's little baby boy, who has not yet been born, but he's in a precarious situation.

My sister is currently in the hospital after carrying him for 25 weeks. It started with a coincidental dentist appointment, a random "let's take our blood pressure" moment in the grocery store, and a follow-up appointment with her doctor.
My sister has preeclampsia, and although friends and family are all trying to comfort her with stories about how they've had pre-mature babies, or they've had preeclampsia, we both know that each baby is different. So we're going to focus all our attention on this little guy and pray and pray that he does okay and that he has a lot of fight in him.

We're thinking that Kristen is going to deliver on Friday, which puts her at 25 weeks. Then, Baby Boy will be spending some time in the NICU.

The more I write, the more therapeutic this feels, so I'm hoping to be updating this blog every step of the way.

If' you're reading this, your prayers are appreciated!