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!