Lincoln's New Face

Lincoln's extubation yesterday was a success and he has been doing well off of the ventilator for almost 24 hours now. I was able to be in the room when they took his ET tube out and he made his first sounds! They were quiet and scratchy. His throat is really sore from the tube being in so long. I took video so that Dan would be able to enjoy the moment, too. He is now on high-flow oxygen through nasal cannulas. Lincoln looks so different without the tape across his upper lip! He is even more handsome now. I just vaguely remember that face from the delivery room. From that point on, he has always been on a ventilator and taped up! He was even switched to a big boy crib yesterday, so now there is even more space in his room. Little by little, the equipment is being taken away. All of the doctors and nurses are very happy with his progress. They say the next step is learning to feed. Since Lincoln is a month old now and has never taken anything by mouth, he may not have the instinctive coordination to suck, swallow and breath. With help from speech therapy, he will have to learn without the reflex most babies have. How fast he learns to feed will indicate when he can come home. As it has been from day one, it's up to Lincoln. We are on his time.

1 Month

Lincoln is one month old today. So much has happened in one month I can hardly believe it! The nurse weighed Lincoln tonight before Dan and I left to go home and Lincoln is now 7lbs 7oz! He really is growing up. He is now wearing size 1 diapers, too. He still isn't able to wear clothes, but I suspect his newborn clothes would be getting tight. I don't know that his feet have grown any though, but it is hard to tell since I see him everyday. Dan and I were able to hold him again today. It is still just was wonderful as the past two days!

As far as a medical update:
Lincoln is taking 5 mL of breast milk every 3 hours through his feeding tube, and he still has his TPN through IV for nutrition.

His sedation has been turned down a little. They will wean his narcotics very slowly so as not to trigger withdrawal symptoms. He has been on them for nearly his entire life, and has grown dependent on them.

His ventilator was set to 30% oxygen at a rate of 22 breaths per minute when Dan and I left. His wean of the nitric oxide was a complete success and was turned off completely at 7pm! The doctors want to give him some time to be sure he is stable so they will watch him over night. His rate on the ventilator will be turned down to 20 breaths per minute around 11pm. At that point all the settings are in place for Lincoln to be extubated tomorrow morning! I absolutely cannot wait to hear him for the first time! The milestones just keep coming! The plan is to switch out Lincoln's endotracheal (ET) tube for a high-flow nasal cannula system for supplemental oxygen. His oral feeds will have to stop for a few days to be sure he is doing well on the high flow oxygen.

Assuming his extubation happens according to plan and he does well with the high flow, the main requirement for discharge is to get Lincoln to take food orally (not through a feeding tube as he is now) and to have him eat 120 cal per kilo of weight every three hours. The amount of time he has left in the NICU just depends on how quickly he can increase his feeds and gain the proper weight the doctors are looking for. Learning to feed is what takes the longest as far as CDH recovery. Lincoln will start speech therapy soon to aid in his oral feeding (in addition to the physical therapy he now gets due to him being sedated and having limited movement.) Getting his first pacifier was a start in getting him interested in sucking, which he is doing great so far!

Lincoln has been through so much already and beaten so many odds. 1/2500 babies are born with CDH, of which only 50% survive. Of those 1/2500, only 10% are born with Right CDH. Being a male with right CDH is even more rare. Only 50% survive beiSng put on ECMO. Lincoln is truly a miracle. He continues to amaze me every day. Even though he is still very touchy and fragile, I feel like he is in the home stretch now!

Picture Post

Here are some more pictures from the past month. Enjoy!

Lincoln - 2 days old. He was so small!

When Linc was put on ECMO, the surgery was performed right in his room at his bedside. The section of the NICU was closed to outsiders and the hallway was blocked off. Nurses, doctors and students were crammed into Lincoln's room as Dan and I waited in a conference room down the hall.

This is what the ECMO machine looked like. The red tubes on the far left are what connected Lincoln to the machine and carried his blood. 

 As Linc became more active as his body rested on ECMO, he began to grab his ET tube frequently. 

He soon found his mouth after discovering his ET tube. I would find him sleeping like this.

Linc the day of his hernia repair surgery - before (Sorry the picture is so dark. The lights were off to minimize stimulation for Lincoln.)

The glowing lights on Linc's wrist and foot are pulse oximeters to measure his oxygen levels. The glowing monitor on his chest is for CO2. He also has ear muffs to keep things quiet for him. His left foot has an IV line, so it is taped to a padded board.

And after...

After being on ECMO for 12 days and waiting 4 additional days before repair surgery, Lincoln's head was finally moved to his other side. He had a huge flat spot that has since gone away. He also made painful faces when the nurses rotated his head for the next few days. Poor baby!

 

Lincoln's first "toy." After surgery, Lincoln was paralyzed, so the nurse made this for Lincoln to hold to keep his hand in a natural position.

Lincoln's equipment - (Left to right) Nitric oxide, Tcom (reads CO2 levels), ventilator monitor (by his bed), monitor for vitals (mounted high on the wall), open top bed with radiant heater, tower of pumps with various IV medications and fluids

The entourage of nurses and doctors that took Lincoln to the OR for his repair surgery, including all of his equipment in the above photo.

 Lincoln's first swaddling. (The nurses always make sure his froggy is sleeping with him! Thank you cousin Layla!) 

Sleeping with his oak tree blanket.

Loving that binky! The nurses say that not many babies can keep a pacifier in along with an ET tube! Lincoln is so tallented.

Mommy holding Lincoln on his 1 month birthday

Mommy Milestone

Well, actually it's a milestone for Lincoln, Mommy and Daddy...

Friday, Lincoln was doing so well with his weaning and keeping his saturation levels up that all of his doctors agreed that he was ready to be held! After waiting 29 days, we were able to hold our son for the first time. We were not absolutely sure how well he would tolerate being held, so I waited to get him up until later in the afternoon so that Dan would be getting off of work and arriving soon. He is still on the ventilator and several IV medications so it took some coordination to get him out of bed and into my arms. Once he was there is was wonderful! I ended up holding Lincoln for a full 2 hours! I instantly had tears in my eyes. My baby was finally mine. He was very alert for most of his time with me and only fell asleep for about 30 minutes. Holding Lincoln gave me a sense of completeness that I have been lacking since giving birth to him. We were apart for far too long!

Mommy and Lincoln
together at last

Linc tolerated being held very well and was able to be handed off to Dan when he arrived at the hospital. Since Dan has had to go back to work these past three weeks, this was his first real bonding moment with his son. Lincoln fell asleep soon after being in Daddy's arms.

Family Photo :)

Since Lincoln did so well being held, Dan and I will be able to hold him every day that his numbers are looking good. I was able to hold him again today. (For three hours this time!) I cannot wait until tomorrow!

Little Rockstar

Lincoln is doing very well. His night nurse keeps calling him a "rockstar." He has handled the weaning very well since they resumed. Yesterday they started to wean his nitric oxide. They turned it down by 5 every 12 hours. They have been able to wean three times now, getting him from 20ppm to 5ppm. They are continuing to wean his oxygen every few hours as long as his saturation levels are close to 100% according to his pulse oximeter. He is currently down to 28%. (Remember, 21% is what you and I breath.) Lincoln has been breathing over the ventilator a lot too, meaning he is taking breaths on his own instead of letting the vent breath for him, so the doctors also were able to wean his breathing rate twice. From 50 breaths per minute to 46, and then to 42. Linc seems to like the lower rates. He seems to be more tolerant of lower nitric and oxygen as the rate decreases as well.

I also think that starting feeds has helped him too. He is now up to 3mls of breast milk every 3 hours. He is still getting the rest of his nutrition from the TPN and lipids. They were able to switch him to oral Sildenifil yesterday too! So, that's one less drip on his IV. His tower of meds is slowly decreasing. We are so proud of Lincoln! He turned four weeks old yesterday. He's growing up and learning to breath on his own! When I arrived this morning, his linens had been changed. They placed his oak tree blanket on him that was a gift from Ron and Abby, symbolizing his strength and longevity. How fitting!

The surgeons used to round every morning in front of Lincoln's room. They would start with him and another child with CDH, and then talk about the other patients in the NICU. Since Lincoln's surgery last week, they have moved to round somewhere else. I asked the nurse about this, and she told me that they round in front of their most critical case. In the past weeks, I often thought about whether Lincoln was the sickest baby in the NICU, but I didn't want to ask. It is comforting to know that he has moved off of the front burner in their eyes.

Moving On

Yesterday afternoon Lincoln showed signs of leveling off from the stumble he had Monday. His oxygenation saturation started to return. His cultures have come back negative for infection, except for his nasal swab which showed MRSA present. As long as it is not in Linc's blood, it is not super serious. His antibiotics they started him on Monday will treat it and he gets a nasal swab of bacitracin twice a day. We now have to wear gowns when around Lincoln to prevent spreading the bacteria to other patients in the NICU. His heart rate is still somewhat elevated, but it is in the normal range for an infant. Since the doctors have looked into infection, checked for fever and checked for dehydration, they are going to not worry about his heart rate. He is more alert now and being asked to do more work on his own than at any point in his life this far, so a slightly higher heart rate is understandable. They just wanted to be sure it wasn't a symptom of something else going on.

They have begun to turn down his oxygen percentage on the ventilator again, but are not going to turn down the rate of breaths per minute or the nitric oxide just yet. They don't want to change things too quickly and have a repeat of Monday's drop in saturation. Lincoln's blood work is still showing a slightly lower oxygen number, but all of the other signs show us he is being saturated well enough, like his good eye coordination, skin color, and urine out put. His body is adjusting to life with less oxygen and healing from major surgery on top of that! So the doctors are going to accept the lower number for now.

Lincoln had a repeat echocardiogram this morning to continue monitoring his heart function now that he is post surgery, is not on medication to help his heart pump and squeeze, and to check on his pulmonary hypertension. The results showed that there is improvement in his hypertension and his heart is still functioning properly, although some of his chambers are slightly enlarged due to the increased work they are doing now that Lincoln is off of ECMO. The doctor was happy with the results. Since his heart got the all clear and he has been pooping, the doctor put the order in for Lincoln to start feeding today! Until now, Lincoln has been getting his nutrition through his IV. He gets a special mix of amino acids and minerals called TPN and lipids, or fat. They will start him on oral feeds of small amounts of breast milk through a feeding tube (1ml every 3hours) to see how he responds. If he does well, they can increase the oral feeds and decrease the TPN. They can also switch his Sildenifil (med to help his hypertension) to oral too.

The doctors are pleased with Lincoln's morning x-rays still. His left lung is T8, meaning it extends to the bottom of his 8th rib, and his right lung has expanded to T7! It is really incredible the amount of lung tissue our little man has! The x-rays do show some mucus build up and some stress from being on the vent for so long (another reason the docs are accepting his lower blood gas numbers and continuing to wean off the vent). The docs started chest physiotherapy every 4 hours to help break up some of the mucus in Linc's lungs. The nurse uses a small vibrator to gently shake his chest and lungs to loosen the mucus and then suctions them out. This, along with more diuretics to reduce body edema, will hopefully help Lincoln to breath easier, and oxygenate himself better too.

Since Lincoln is waking up more (and will be even more awake in the coming days as his sedation medicines are reduced) the staff is trying a few things to help keep Lincoln calm as he becomes more fussy and needs to do more breathing for himself. He now has soft music playing in his room. He was swaddled for the first time today and he loves it. He also now has his first pacifier to help him self sooth. Lincoln's doctor said she wants to be more aggressive with moving forward in the coming days, so they are giving him every tool they can to help him succeed. We know he can do it!

Stumble in the Night

So after I posted last night, Lincoln had a low blood gas meaning he was not getting enough oxygen into his system on the lowered ventilator settings. The doctors turned his nitric oxide back up and his oxygen percentage back up to 50. They also gave him some fluids due to his heart rate being high and blood pressure being low.

By the time Dan and I arrived at 6 this morning, Lincoln still had a high heart rate, but was not agitated. His hemoglobin levels have been slightly low for two days, so the surgeons want to try giving him some blood to help both his hemoglobin levels and bring his heart rate down. They are also suspecting a possible infection for the culprit of his higher heart rate and decrease in urine output. He also has a mastitis, or inflammation of his right breast. This can happen in babies due to the mothers hormones during pregnancy and birth. This morning, the nurse is getting a bunch of cultures and starting Linc on a round of antibiotics just to keep any infection under control. For now, they are not going to wean Lincoln's ventilator anymore until he is negative for cultures after 48 hours. The surgeon said that this is not a step backward, but more like a stumble along the way.

More Weaning

Lincoln has been doing really well after his surgery. The doctors have been weaning his ventilator oxygen again over the past few days. When Dan and I left for home tonight, Linc was down to 44% oxygen. His nitric oxide has also been weaned once. He is no longer on his blood pressure medicine (dopamine) or his med to help his heart work efficiently (Milrinone). He is only on one med to help his blood vessels relax in his lungs (Sildenifil), which he has been on from the beginning. He has handled all of the weaning very well. His sedation was reduced a little today and his paralysis was lifted yesterday, so he is somewhat active again. We are still not wanting him to get too excited at this point, so I cannot yet read to him or hold him yet, but I do a whole lot of gazing and hand holding! Once Lincoln can get down to 21% oxygen (the amount that is in normal air) he will be ready for extubation!

Trip to the Operating Room

Yesterday, on Lincoln's third week birthday, he made a trip to the OR for his diaphragm repair surgery around 12:30pm. (The OR was busy so his surgery was pushed back to the afternoon.) All of his equipment went with him, including his ventilator, oxygen and nitric oxide tanks, his bed with him in it, monitors for his vitals, and all of his tower of IV pumps. It took the coordination of about seven doctors, nurses and respiratory therapists to get everything out of his room, down the hall, in the elevators, up to the 6th floor, and out to the OR. They all did a great job moving Lincoln. His heart rate never even went up. Dan and I were allowed to follow and ride up in the elevator with Lincoln and the whole team. We gave Lincoln a kiss just before he went back to the OR and Dan and I went to the waiting area.

While Dan and I waited, the nurse in the OR called several times to give us updates on how things were going. At 5:00pm, Lincoln's diaphragm repair surgery was complete. The surgeon came out to talk to us, and told us that everything went fine and Lincoln was doing well. His hernia was 5 cm big, with the midline of his diaphragm intact and some diaphragm in the front and back on his right side. Almost his entire small intestine, some of his large intestine, and most of his liver were herniated into his chest. She did not have to use any patches to close the whole in Linc's diaphragm, or to close the incision site. She said it was a tight squeeze, but she avoided using patches to reduce the risk of infection. There is a risk of hernia recurrence whether or not a patch is used. With Linc's hernia being on the right side, his liver sits right under the closure, acting as an additional barrier between his chest and abdomen. If Linc does have a recurrence, we may never know due to his liver position, which is good. The whole idea is to keep the bowel out of the chest.

They are keeping Lincoln paralyzed for at least 24 hours so that he does not pull any sutures or strain his super tight diaphragm. He is, of course, heavily sedated and has plenty of pain medicine to help him during the healing process. The doctors will be watching his urine output as an indicator if his abdomen is too tight. If his kidneys are being squished, they will not produce enough urine, and that is an indication that everything is squished. In that case, they can open his incision again and put a temporary patch on his abdomen to allow more room for a few days until his skin stretches. Hopefully he won't need that though. They also are watching his edema. Sometimes the empty space newly created in the right side of his chest can fill with fluid before his lung expands. So for now, they are letting his rest and allowing the ventilator to do all of his breathing. His settings were turned back up after the surgery to 100% oxygen, and so far he is oxygenating very well. The next steps are to heal from surgery, then start to wean some of his support. Hopefully, Lincoln heals quickly without complications and is accepting of his weans. Who knows, we may be able to hold him in a few weeks.

Almost Ready

Lincoln has been tolerating his oxygen being weaned very well. He will meet the surgical team's requirements for surgery by this evening, so the surgeons went ahead and scheduled his repair surgery for tomorrow morning! They ordered another echocardiogram to double check the condition of his heart before surgery. His last echo showed some fluid in the sac around his heart and one of his atria was collapsed. The doctors suspected these things to be due to being on ECMO at the time the echo was performed. The echo today will be a more accurate depiction of Lincoln's heart function. The surgeon told us yesterday, that she can already tell from his performance and stats that his heart is healthy, but they just want to be sure before tomorrow am.

For several days now it has been nothing but good news. It is wonderful to have every one excited about Lincoln's progress. He has come a long way already and has far to go but he is moving right along now! I have actually begun to think about what it would be like to have Lincoln home with us and be a family. I wasn't allowing myself to daydream the past few weeks, not knowing what would come. It has been so strange to have carried him for 8.5 months and give birth, and then go home every night without a baby. To be thin again and home with only Dan, sometimes it all seems like a dream. I am still unsure of the future, but it is looking better and better with each day Lincoln does well. I am looking forward to it.

Surgery Preparation

Lincoln had another good day yesterday. The doctors are slowly weaning him of his oxygen through his ventilator. They turned up the oxygen percent to 100 just before his surgery to come off ECMO to give him extra support. He is now at 82, and doing well. Every two hours they turn it down by two percent, as long as his stats stay where they want them. They are continuing to check the amount of gases in his blood every 6 hours in addition to the sensors attached to his skin to be sure he is getting enough oxygen. The surgeons would like his oxygen support to be around 50 percent before doing his diaphragm repair surgery. If things keep going well, they are shooting for Friday to perform the surgery. They are also trying to wean a few meds before surgery. They just want Lincoln to be on as little support as possible at the time of surgery so that afterwards, they have room to give him more if he needs more support. They also are watching his edema, which is minimal now that he is off of ECMO. They still want him to be skinny for the next surgery so that it is easy to close his incision. Since his abdomen will end up being stuffed and stretched when they move all of his bowel and liver down, they don't want edema to be one more obstacle.

It is really amazing to watch the team of doctors and nurses here at Children's Hospital. The knowledge and experience they have about CDH is incredible. They have been able to give Lincoln so much support and care over the past 19 days, and have already saved Lincoln once with ECMO. I know they will continue to perform miracles for him every day. I cannot put into words the extent of my gratitude for every thing they are doing to save my son.

More Pics

Even though he is always in the same position, I can't get enough of this little cutie!

No more cannulas (After ECMO)

"Perfect ECMO Patient"

Lincoln's surgery to come off ECMO was a complete success today. There were no complications during the surgery and Lincoln was off by about 1pm. His stats are good and his oxygen saturation is 100%. The doctors needed to turn up his ventilator settings just before the surgery to give Lincoln a little more support during the surgery. They are going to watch him overnight and not make any changes. He has had a big day! The nurse said that he was the "perfect ECMO patient," meaning he was on for about 2 weeks (the average time) and he was able to wean without any issues. They only needed to add one medicine to help Linc's heart work more efficiently in order to wean. (Compared to the nine meds he was on before ECMO support!) He responded just as they anticipated while on ECMO, for the most part.

The goal for diaphragm repair surgery is to get his vent settings lower (Linc being more stable, needing less support). They anticipate him being a little sicker after the repair, so they want to be able to go up on the vent to help him oxygenate his body. Moving all of his bowel and liver down to it's natural position in his abdomen during the surgery will push his diaphragm up into his good left lung, making it difficult for him to breath. As his abdomen stretches to accommodate the new contents, breathing will get easier for him. The doctors expect it to be a few days until Lincoln is ready for his repair surgery. It is so wonderful that Lincoln is progressing in the right direction. He has been through so much in his short first two weeks of life. He is the strongest little man I know!

The End of ECMO

Lincoln did really well yesterday and through the night with the ECMO weaning. Early this morning they tested him to see if he is ready to come off of ECMO by clamping the lines to the machine for 15 mins, simulating what it would be like if he were taken off, letting his body do all of the work to oxygenate his body. They then tested his blood for an oxygen level. He passed with flying colors so the decision was made to take Lincoln off of ECMO today, after having the support of the machine for almost 13 days. He is heading in the right direction to have his repair surgery later this week. The doctors said they will need to monitor Lincoln for a few days after taking him off of ECMO to be sure he is stable enough for his surgery to repair his diaphragm. There is a chance that his pulmonary hypertension can return once off of ECMO, since his body will be working so hard to oxygenate his whole body with only one lung. They will have all of the medicines he was on before ECMO available to help him and also two types of ventilators if he needs them, but he cannot be put back on ECMO if he gets really sick again. Due to the placement of the lines with ECMO, the patient's veins can only handle it one time. Lincoln is such a little fighter and have faith that he will not get as sick as he was on May 31st (the day he went on ECMO).

The surgery to take him off today will only take an hour or so. Afterward, Linc's environment will go back to minimal stimulation, so that he doesn't get too excited and cause his hypertension to return. The nurses warned us of this last night as they were weaning, so we got in a lot of talking and kisses. It may be several weeks before I can read to Lincoln again but soon enough I will be able to read him a good night story every night, as soon as he is better.

ECMO Wean Attempt

Lincoln responded well to the changes the doctors made yesterday. They were able to wean him every hour from 8am until 3 pm, when he hit a plateau. He was still doing well, but his stats had begun to drift down, so the docs decided to just hold steady through the night. By morning, Linc had brought his numbers back up. His morning x ray looked great. He even has breath sounds on the right side too now. So the plan for today is to continue the wean as long as Lincoln can tolerate it. Undersandably, he has been pretty sleepy yesterday and today, but that is a-okay. He is doing a great job!

Happy Friday

Lincoln had a good night last night. His x ray this morning looks about the same as yesterday afternoon ( still the best since being put on ECMO), but his breath sounds are improved from yesterday meaning his lung is opening more. The doctors want to challenge him this morning by making changes to push him toward getting off of ECMO. They are going to turn down the flow on the machine slowly and increase his ventilator settings to see if he will he able to oxygenate himself more using his lung, instead of the machine. They are also going to bring back the nitric oxide he was on before ECMO, which helps him to absorb the oxygen they are giving him. He will also go on a med to help his heart work better as they make his body work harder. It is great news that Lincoln is doing better and the docs feel comfortable making changes. Of course, it is a little scary too since he has been so stable the past few days on the same settings, but he has to work towards coming off if he is ever going to come home! Hopefully Linc will remain strong and be accepting of the changes this morning. We are cheering for him with everything in us!

ECMO Day 9

Linc has been very stable the past few days on ECMO. The doctors have not needed to adjust any settings in order to get the good vital numbers they watch for. Lincoln's morning x-ray today showed a small portion of this left lung had begun to "open up" and the docs could hear breath sounds in Linc's left lung, which is great news. We saw similar results Monday, only to find a closed lung again on Tuesday. Since Linc is coming up on the 2 week mark for his time on ECMO, the doctors decided during rounds that they would make a small change on his ventilator settings and change his diuretic meds to try to open his lung a little faster. They gave him a few hours to adjust to the changes, during which he slept mostly. Around 3 pm, they repeated the xray and saw even more improvement in his left lung compared to earlier in the day! The changes had worked and Lincoln did a great job resting to allow his lung to open up! The doctors are all very pleased with the x ray and plan to leave his settings as is and get another xray in the morning. Hopefully his lung will be even more clear in the morning!

2 Weeks Old

Today, Lincoln is two weeks old. We are so proud of him. He is such a strong fighter. The nurses surprised me with a gift to mark the occasion today. They had a book for me and ink stamped Linc's foot prints on the back. I helped by holding his heels. He did a great job. (practically slept through it!)

The nurse also put Linc's foot prints on a 3x5 index card for Dan to carry in his wallet. (His feet were almost too long!)

 A few more pics of the "birthday" boy! He has really lost a lot of the fluid retention. He is looking skinny again!

 One of Lincoln's favorite things the past few days is to stretch his legs out and hold them for a minute or so. He is so cute!

ECMO day 8

Lincoln's morning x-ray showed no improvement from yesterday. We are still waiting for his lungs to clear. The repeat echocardiogram done yesterday showed that Linc has some fluid accumulation around his heart. The surgeon said that it was expected since he is accumulation fluid all over. He said it will be something to watch, but no intervention needs to be done now. Too much fluid around the heart can make it difficult to beat, but since Linc is on ECMO, his heart doesn't need to work that hard anyway. Once they start to wean him, they will reevaluate it then. Lincoln also got an ultrasound of his head to check for bleeding. Linc has to be on blood thinners while on ECMO, so he is at an increased risk of bleeding. The results showed no signs of bleeding. So for now, "stay the course" as the docs say. "An uneventful day on ECMO is a good day."

Nursery Update/ Lincoln Update

Treasure Rooms finally got in the extra crib parts and came to the house to assemble the crib. Kathi was kind enough to be there for me so that I could stay at the hospital with Linc. So now Linc has a bed at home! As soon as I get everything in place in the nursery, I will post pictures. We still need to get a matress and wash all of his bedding and put up his valances. Now, Linc just needs to get well so he can see his room too!

As for an update on Lincoln himself, no changes today. His morning x ray showed no improvement, so no changes are planned for the day as far as his machine or ventilator. The NICU and surgery teams requested cardiology come take a look at Lincoln again sometime today. (He had an echocardiogram done last week that yielded normal results.) The docs are looking for some explanation for some anomalies seen with Lincoln's numbers. He is still doing well on ECMO, but they would just like to get cardiology involved to help better understand Linc. Every one keeps saying that every baby is different and Linc has his own quirks that the docs have to figure out.

ECMO day 6

Today is Dan's first day back at work, so I will be hanging out with Linc at the hospital by myself. At least Dan doesn't work very far away, so he was able to come with me to the hospital this morning to see Linc and he can visit after work too. (We had perfect timing this morning, as Linc had just woken up when we arrived.) It is also comforting to know I can call him anytime to come up during the day if anything should happen to Linc. Of course, the rest of our family and friends are close for support too, so I don't have to fear being alone.

Today is Lincoln's 6th day on ECMO. The past days have been filled with little news and not much change in Linc's condition. The docs have just been keeping Linc comfortable, and helping him pee out the extra fluid his body accumulated from being put on ECMO. Even though the docs have had to increase his flow on the machine to keep his stats up, he has been doing well with his urination, and today his morning x-ray showed signs of improvement! There is slightly less fluid in his left lung and his diaphragm line is visible. Wonderful news after 5 days of no change! His fluid between his body wall and chest is reduced as well! Having extra fluid in his body wall makes it harder to breath because it's like having a weight on his chest, so the less fluid, the easier it will be for him to take a breath. He is taking baby steps in the right direction. We are so proud of him! We know how hard this is for him, but he is a strong little boy and we are here for him!

Lincoln is very awake this morning!

Waiting Game

Today starts the fourth day Linc has been on ECMO. The machine is oxygenating and pumping his blood for him so that, hopefully, his pulmonary hypertension will subside. Today the docs tried to wean his flow rate on the machine a little, and Linc's vitals suffered a bit. So they went back up to the original rate. It seems like he is not too fond of fast changes, but that's ok. We just want him to be able to come off sometime. We don't need to rush him at this point.

One of the side effects of ECMO is edema. Linc is slowly getting more swollen everyday. His kidneys also are not getting the natural signal from his heart to trigger urine production, so the docs are giving him something to help him pee, which has been working but he still looks puffy. Even though he looks uncomfortable, we know he isn't feeling pain.

It has been bitter sweet having him on ECMO. We know that he is very ill, but we love the fact that we can interact with him now. I have been able to change three more diapers so far. Two of which were poopy! (I never thought I would be so happy to change a poopy diaper!) Knowing he hears and sees us is a wonderful feeling. For now, it is mostly a waiting game. The docs will make small tweaks, but overall we are waiting for Linc's daily x-ray of his lungs to clear. That will be the sign the docs look for to let them know Linc is ready to wean and start doing more of the work himself. In the mean time, we are trying to rest more ourselves and enjoying being with our son.

Pictures of Lincoln!!!

Here are a few pictures, as promised!

First night

Linc has Daddy's big feet and long toes!

Ear muffs and a cloth over Linc's face keeps him calm so he can rest. We were not able to touch Linc at this point, but  we could stare at him for hours!

Linc was moved after his first night in the NICU to his own private room!

 After Lincoln was put on ECMO, he no longer needed to be so heavily medicated and sedated, with minimal stimulation. Dan and I were finally able to touch our baby after 5 long days!

Daddy putting socks on!

So cute!

Tiny hands!

Sleeping with his new frog from cousin Layla! So precious!

After reducing some sedation meds, Linc was able to wake up and see us!  He has beautiful eyes!

Mommy and Daddy's first real chance to interact with Linc! (Day 7)

Linc on ECMO