3 Months!

I cannot believe Lincoln is three months today! I am so incredibly happy that he has "made it." He is a survivor and is at home with Mommy and Daddy! He is overcoming so many hurdles presented to children with CDH. Lincoln is eating without a feeding tube and gaining appropriate weight! He does not appear to have hearing or vision loss, which is common from all the support he needed early on (ECMO and ventilator). Lincoln does not show any developmental delays so far despite the fact that he was sedated for the first  month of his life. He is starting to grasp at toys and really enjoys studying faces. He has also "found" his hands and enjoys putting them in his mouth. Lincoln's neck muscles are getting stronger and he is able to hold his head and chest up when he is held upright. We are still working on lifting his head and chest during tummy time. He also is beginning to bear weight on his legs when we hold him up on our lap. He is now wearing size 0-3 months on top but still in newborn for bottoms.

Life at home has gotten better for all parties. Lincoln is sleeping better at night. He slept in his crib for the first time last night after I worked with him for an hour. He probably wont spend every night in his room, but it is nice to get some use out of his beautiful crib. Plus, that is where his beloved mobile is located! He is still getting up to eat once in the night, but is sleeping pretty well between feedings. We are beginning to fall into a routine and it is becoming more and more fun.

Newborn Medicine Clinic

Yesterday was Lincolns first follow up appointment at the Newborn Medicine Clinic at Children's Hospital. Learning from our last trip out to the pediatrician, my mom came along to help with Lincolns equipment and to keep him happy in the car. I didnt want to risk him de-saturating due to crying since this trip would be more like 35mins vs the trip to the pediatrician that was 10. His discharging attending neonatologist saw him a week early per my request due to Lincs fussiness and general irritability at home. (which has since gotten better. Thats always the case. As soon as you make a appt to see the doc, your symptoms improve!)

The doctor looked Lincoln over and asked me to describe my concerns. I told him about Lincs crying spells that last for 30 mins to several hours throughout the day, especially after feeding, and that I was not able to console him. This was not his usual behavior as compared to when he was in the NICU. Lincoln was also taking less milk at feedings. I had brought this up to Lincolns pediatrician at our first visit and she said he could be refluxing. Even though he is not spitting up, it may be enough to hurt and cause him to cry. She recommended a prescription that could increase the pH of Lincs stomach acid. The medicine will not stop him from refluxing, but when he does, it shouldnt hurt. I hadnt given the med to Lincoln though. I wanted to see the neonatologist first.

The doctor said Lincoln looks great and he is really happy with his weight gain. Lincoln has gained an average of 17 grams per day since being discharged from the NICU. The target is between 15-30 grams. Lincoln weighed 9-9 and measured 22inches long, with a head circumference of 40cm! The doctor said Lincoln doesnt appear to have any infection and that it does sound like his discomfort my be feeding related, as opposed to narcotic related. He said it was ok to try the med given by the pediatrician to see if things improve. Basically, "sorry he is so fussy, but he looks great and your doing fantastic with his feedings." Being fussy by nature is just fine. I just had to be sure nothing more serious was going on. The doctor did not make any changes to Lincolns meds or oxygen since the meds are more controlled by the surgery team and Lincs feedings are in question so he didnt want to wean his flow just yet. We go back for another follow up with Newborn Medicine as well as Surgery on Sept 19th.

The Home Life

Lincoln has been home with us for 6 days now. It has been a huge adjustment for every one that we are still working through. Linc is on one liter of oxygen support, two meds, vitamins and protein supplement. He also now recieves home nursing visits twice a week to monitor his growth and occupational therapy once a week to help with his development and feedings. It is a lot of work round the clock caring fr Lincoln, but it is wonderful having him home and all to ourselves! Dan is back at work, so I am home with the little guy during the day. I have 6 weeks off from work with no solid plan for day care there after. Lincoln will probably still be on oxygen at that point and is vonerable to infection. Even though he is home, he is not yet well, and won't be for quite some time. Minimizing Lincolns exposure to germs is very important since his lungs are not very strong and a small infection could turn into readmittence to the hospital.

Lincolns first pediatrician appointment was last Friday. I took Linc by myself, and let me tell you, it was intense. Lincoln was not happy and desat'ed on the way to the doctor. He was turning blue so I had to stop the car to turn up his oxygen and get him out of the carseat to calm him! We were a half hour late, but everyone understood. He was upset again at the docs office when they had to get him naked and weigh him. (9lbs 4oz - less than 5th pecentile for weight and length). He got one more vaccine (he had five others at the hospital on his 2 month birthday) and we were out of there. I learned a lot about preparation for taking linc out. It will get easier as we go to the doctor more. He has a follow up appt with his NICU attending this thursday. Linc was originally scheduled for next week, but I am concerned with Lincolns fussiness and inability to be calmed, so I called today to move the appt up. It could be nothing, but I want to be sure he is not refluxing or having withdrawal from out growing his morphine dose. I thought it was just his adjustment to being home at first, but he does not seem to be any more comfortable after 6 days. Linc is awake and happy once or twice a day, so we do get opportunities to have some quality time together to play.

The home nursing visits have been fine. The first was last thursday and we had one today. Lincoln gets his vitals taken and weight and any concerns I have are noted and advised. The visits are relayed to the hospital docs and Lincolns pediatrician. Linc is gaining weight nicely. Today he was up to 9-9! He has only had one OT appt so far, and he was fussy and went to sleep soon after his therapist arrived. She was able to evaluate him and we talked about working on his feedngs (shortening them and getting him to burp and be more comfortable), getting linc to tolerate diaper changes (he currently gets so mad he desats and turns a little blue, so you have to be quick!), and tummy time and reaching for objects. Lincoln is on track as far as development for his age. He is starting to hold hid head up nicely when being heald upright. He also is smiling and tracking objects with his eyes. Our next therapy session is TBD as insurance gets back to the therapist (go figure!).

As far as lincolns equiptment at home, it is similar to what he was on at the hospital. He has an oxygen concentrator that he breaths from most of the time. It takes room air and cncentrates the oxygen level to be at least 85% or greater. We also have portable tanks of compressed oxygen for trips outside. The portable tanks can last for about 10 hours on Lincs current liter flow. Both the portable and concentrator have regulators where we can turn up linolns flow for eating, or if he is in trouble (like on the way to the doc!). He also is hooked to a monitor that tells us his blood oxygen saturation in a percentage ans his pulse. Te monitor is not as good as the one he was on in the NICU and it give a lot of false alarms, but it is good to have while we are sleeping. Otherwise, we can just look at Linc to know if he needs more Os.

Hopefully Lincoln becomes more confortable at home and we will see what happens at his appt Thursday. It is just still amazing he far he has come and that he is home!

Update! FPU!

OMG! Finally, a much needed update on Lincoln's progress!

Lincoln has gotten so big! He was 8lbs 12 oz on his second month birthday! (tenth percentile for weight, length and head circumference, but he is steadily gaining.) He is just ovevr 9lbs today! He Is getting chubby cheeks and fulling out nicely. He looks healthier everyday. His incisions are all fully healed from his ECMO and his hernia repair surgeries.

Lincoln continues to do well with bottle feeding. He started taking his full volumes by mouth And was gaining good weight, so the docs allowed him to feed on demand via breastfeeding ( without supplementing via gavage) while I was at the hospital. After a few days, they also switched him to on demand with bottles too. Once the docs saw he could eat like a champ, they removed the feeding tube!

At the begining of August, Lincoln was switched to be under the care of the Red Team (there are three other teams of docs as well, blue, green, and yellow.) The red team is also known as the "Discharge Team!" We were very excited to hear this because it meant Lincoln was doing very well! The red team is very oriented towards going home and helps streamline everything needed for that to happen. It is run mostly by nurse practitioners with an attenting neonatologist overseeing everything. The approach is more laid back since the patients are typically doing very well and need less attention. The team told us they would be relying on our input since we know Lincoln the best.

With the switch to the new team, things took off. Last Saturday Lincoln's oxygen flow was turned down to 1.5 liter at 30% oxygen. This was a huge step, since any flow under 2 liters is considered "low flow" and does not reqiure high humidity. (This was a requirement for discharge. Lincoln had to be off of the high humidity since no equipment at home can offer that.) Linc was doing great for about two days and then his feedings began to decrease. He got down to taking only half of what he normally does and since he doesnt have a feeding tube anymore, he was just missing out on calories. The nurse practitioner suggested going back up to 2 liters on high humidity. She said his inability to eat could be a sign that his body is working too hard to oxygenate itself and he needs more support.

I was crushed by all of this. I didnt even realize how excited I had gotten about Lincoln's latest oxygen wean until someone mentioned that he may not be ready. Since it had taken three attempts to get Linc off of the high flow, I really didnt want to put him back on it. I asked if we could try to keep him off the high humidity and only turn up his oxygen to 2 liters at 50% while eating only to see if that would be enough support to get him eating again. It took a couple of feedings to see the change, but it worked! I was so pleased Lincoln making good respiratory progress. He had already done so well with advancement on feedings.

Then, last Wednesday (two days later) Lincoln's surgeon thought he looked great when she did her morning check up at his bedside, so she turned his flow down to 1 liter (the final requirement for discharge)! He was switched to 100% oxygen since that is what is available at home. (100% at a low flow of one liter is about the same as breathing 30% as compared to 21% room air. Since the flow is so low, linc just gets a whiff of the Os through his nasal cannulas.)

That evening at the hospital, Lincoln's nurse said that he had passed his hearing test ( another great accomplishment for a baby that was on ECMO!) and that we should bring in his car seat since it didnt look like he would he here long! She also asked if Dan and I would like to stay with Lincoln for 48 hours in the Family Participation Unit (FPU) on Sunday and Monday. The FPU is a room in the NICU with a bed, bathroom, tv and microwave. The FPU is a place for parents to practice caring for their little one before going home, with the equipment and med schedule they will be on at home, too. So Dan and I spent the night with Lincoln for the first time together last night. Things are going great in the FPU. It was an adjustment, and will be again at home, but we are getting along just fine. The nurses just bring Lincoln's meds when we call for them and get anything we may need. Dan and I are on our own from now on!

My, how things change so quickly! Just Monday the nurse practitioner was talking about going back to high humidity, and now Dan and I are just one night away from bring home our boy! At last after 81 days in the NICU!