Birthday Blues

Another month has past and Lincoln is now four months old! This past week has been a bit of a challenge for feedings. Lincoln did great last Tuesday (24 hours after his oxygen wean) but by Wednesday, he was having a few bad feedings. He does occasionally have a feeding were he doesn't eat that much, so I didn't automatically jump to turn up his oxygen. Lincoln seemed satisfied by the smaller volume. Then on Thursday morning, Lincoln threw up. And I mean projectile. He had just finished eating and I was burping him when I heard a big splat on the floor behind me. It was every where. Lincoln was scared, but he calmed quickly and seemed to feel better. His therapy was canceled that day, just in case he has something. I was concerned since Lincoln has never thrown up like that before so I called one of his nurses and explained the situation. She agreed that she would wait to turn up Lincoln's Os and just watch him. If he puked again, I should call the doc.

By Friday, Lincoln was consistently eating only about 70mls every four hours (his needed calorie intake is about 130ml every 4 hours). So I decided to start turning up his oxygen support just for feedings and I called Newborn Medicine to let them know. It was so late in the day when I called that they didn't call me back until Monday. It was almost better that way, since I had a couple of days of turning Lincoln up for feeds to see if things improved, and they had. By Monday Lincoln was taking more like 100-120mls per feeding. Much better!

Lincoln has been congested off and on since his first cold a few weeks ago, but Sunday night after his bath he was coughing a bit and then spit up after his Monday morning feed. It is very unusual for Lincoln to spit up after eating (he hasn't done that since he had a feeding tube months ago). There seemed to be a lot of mucous in the spit up and Lincoln sounded congested. So I used saline and suctioned his nose. His secretions were a little yellow, which I know can mean he is sick. Because of all these signs, I called the pediatrician and made an appointment for Lincoln to be seen Monday afternoon (Linc's 4 month birthday). Even though Lincoln had just had an xray a week earlier that showed clear lungs, a lot can happen in a week. I just wanted to have Linc looked at before it got too serious. His doc looked in his ears and throat and confirmed that he is getting a cold again (or it is the same one flaring up again). She said so far his ears and throat look ok and his lungs sound ok too. She said to just watch him over the never few weeks and hopefully it does not turn into an ear infection or something worse like the flu. She said to keep him upright to sleep and use saline and suction for congestion as well as a humidifier. She also said tylenol is ok too if he acts like his throat is hurting.

Lincoln could definitely be worse off, but this time around he has more symptoms(coughing and yellow boogies) so I am more worried. I almost think it is the same cold from a few weeks ago, since I do not know anyone who is sick that Linc could have caught it from. I feel terrible that he is feeling bad but I know that I'm doing my best with screening visitors and using sanitizer all the time to minimize transmission of germs. Linc spit again yesterday AM, but has been ok today and seems to not be any worse at least! Hopefully he feels better soon!

Sitting with Assistance

This week Lincoln's physical therapist suggested starting to try sitting with assistance. I put Lincoln in the corner of the couch and got these adorable shots! He is still working on hold up his head so it didn't take long for him to rest it on the arm, but he did great for his first time.

Newborn Med/ Surgery Doc Visit

Yesterday we took a trip to the hospital to visit Newborn Medicine and Surgery for follow up appointments. My mom went with me again to help with calming Lincoln in the car. He still does not like his car seat and cries most of the time, but he is getting better. He will calm some while the car is moving now.

Lincoln's appointment with Newborn Medicine was at 12 noon. Lincoln was in such a bad mood before we even left that I didn't know if I could get him in the car without desaturating so I called the hospital to let them know we would probably be late. We ended up only being ten minutes late though. We used the stroller this time since we had two appointments to go to and would be at the hospital for several hours. Lincoln actually liked being pushed around. I think he liked being forward facing so he could see everything. With the seat on the stroller propped up, I could get his oxygen tank to fit underneath so we had less things to tote round.

Lincoln was actually in a good mood for his first appointment with Newborn Medicine. We actually saw the neonatologist that we met with way back when I was still pregnant and touring with the Fetal Care Center. Lincoln weighed 10lbs 15oz! He is now 23 inches long with a head circumference of 40.5 cm (all still <5th %). I told the doctor how Lincoln has been eating really well and I that I think he is going through a growth spurt since he is up eating every 2-3 hours even through the night! She was very pleased to also hear that he is on a wean plan for his morphine.

I told the doc that Lincoln has been doing great on 1 liter of oxygen and only desat's when he is really angry, never at rest. She said that she is not concerned with his desating during crying spells, especially since he recovers easily when he is comforted. She said she is more focused on if he has enough energy to eat and is taking good volumes, which he is. When Lincoln has his sensor on for the pulse ox (which is only when I am sleeping or out of the room since it alarms if Linc moves too much) his saturation always shows 100%. She also looked Lincoln over and did a few tests to see how well he could sit and hold his head. She asked about his therapy sessions and whether or not he was smiling and cooing yet, which he does both frequently!

The doc was very happy with Lincolns progress and decided to wean his oxygen flow to 0.8 liters as his baseline. The way his flow meter is on the concentrator I have to set him between the 1 liter line and the 0.5 liter line, but she said that is fine. She said that we should try not turning him up to eat anymore and see how he does. If he is taking less on volume or taking much longer than normal to finish to go ahead and turn him up and let her know. Her office called today to check on Lincoln and see how the new oxygen setting is working out and I let them know he is doing just fine. He has not shown any signs of distress thus far. We have another appointment on Oct 5th.

All three of us ate lunch between appointments and then went over to Imaging to get Lincoln's chest x-ray. His surgeon will want to see an x-ray at every visit to check for rehurniation. Our visit with her was brief. The doc said that she wants to wait for an official report from the radiologist, but she said she thinks Lincoln's x-ray looks good. She inspected his incision sites and generally looked Lincoln over. She was also pleased to hear he is doing well and happy to hear that Newborn Medicine weaned his oxygen. She will want to see Lincoln every three months to monitor him for reherniation. She said signs to watch for are reflux (with vomiting) and a decrease in volumes during feedings. She also said to stretch out his morphine wean a little longer just to three weeks just to be sure he does not show any withdrawal. She would like Linc to stay on his same dose of Sildenafil until he no longer needs oxygen support.

The drive home was much easier than the drive to the hospital. Lincoln fell asleep really quickly since he didn't get a nap at all during the 5 hour hospital visit. He slept in his car seat for about an hour, woke up, ate, and fell back asleep within about 15 mins. What a day for Lincoln!

Lincoln's Visitors

I just want to make every one aware that now that the season is changing and flu season is upon us that visitors are only welcome to see Lincoln if they are feeling well and are free of any cold like symptoms, including what you may think is just allergies. I would prefer for anyone that is going to be around Lincoln to have gotten a flu shot also, as long as your doctor is ok with it. Visitors will also need to continue to practice good hand washing habits as well. I just want to take these extra precausions to hopefully prevent Lincoln from catching a cold that turns to pneumonia. His doctors have been very diligent about cautioning me of this possibility and how serious a respiratory infection can be for little Lincoln. Thank you for all of your support.

Medical Update

Here is an update on Lincoln's medical status.

Medicine:
Lincoln is still on Sildenafil four time per day for his pulmonary hypertension and the plan is to stay on the same dose and out grow it. His morphine dose has been the same for months, but has now been reduced to twice per day last week and once per day this week. He has not needed this medication for pain for quite some time, but has been addicted to it. He is scheduled to discontinue the morphine all together next Wednesday! Lincoln is taking Pepcid twice per day for his reflux which has been working great. He still has the reflux, but it is less painful for him, so he is less fussy after eating.

Respiratory:
Lincoln continues to be on one liter of 100% oxygen flow as his baseline. He is turned up to 1.5 liters to feed just so that he doesn't expend extra energy to eat. He still has quite the temper and needs to be turned up on his flow when he gets too mad and desaturates. This only happens a few times a week though. He is getting better with being able to cry and not desaturate every time. Last week Lincoln did have a bit of congestion due to a mild cold, I believe, but this did not get bad enough to interfere with his breathing or eating (which is when we need to contact a doc ASAP.) He still gets stuffy occasionally and I just use saline drops and bulb suction his nose.

Nutrition:
Lincoln is taking a multi vitamin once per day in his bottle. He is also taking a protein supplement three times per day to help him gain weight. He has not been taking to the breast lately so he has been almost exclusively bottle fed and I pump after each feeding (if I can!). Lincoln still has some latching issues and does not associate breast feeding with feeling full so my hopes of breastfeeding have not come true. Since Lincoln is not feeding at the breast very much, my supply is not enough for all of his feedings. So Lincoln is taking four full bottles of formula per day along with two full breast milk bottles. He is on a formula recommended by his neonatologist that is for premature babies so it has more calories per ounce and has partially broken down protein to help with digestion.

I am not happy about giving formula to Lincoln, but he has to eat and some breast milk is better than none. All things considered, I guess I should be proud to have supplied Lincoln this far. He has been having difficulty with the transition with throwing up a few times the first week and having a hard time pooping still today. I started giving small amounts of formula to him three weeks ago to ease into the new food. With Lincoln having his bowels shifted during surgery, digestion is a real challenge for him. Lincoln is still eating on demand, but I make sure he gets in 6 feedings per day. His volumes fluctuate, from 2.5 oz to 4.5 oz per feeding.

Home Visits:
Lincoln was getting home nursing visits twice per week. His vitals were taken and his weight measured. The nurse also would report about his feedings and general health to the pediatrician. Last week the visits were discontinued by his pediatrician since he is gaining good weight and I am comfortable with his care. Between doctors visits and the home nurse visits, Lincoln has been monitored very closely this first month at home.

Lincoln also has occupational and physical therapy once per week (two separate visits). His occupational therapist comes on Tuesdays and works with Lincoln on feeding issues and any behavioral issues or concerns of mine. She is also there to help make sure Lincoln reaches his developmental milestones. We have been working on desensitization of general handling and diaper changes especially. Lincoln is a very touchy baby and can go from happy to angry in a flash. We are also working on getting Lincoln more interested in toys so that he can work on his motor skills.

Lincoln's physical therapist comes to the house on Thursdays. She visits to make sure Lincoln has full range of motion and is hitting his milestones as well for anything physical, such as holding his head up and sitting. We are working on tummy time to strengthen the back of Linc's neck and pull-to-sit to strengthen the front of his neck. We also work on range of motion of limbs and fingers. Since Lincoln spent so much time just laying in bed at the hospital, he has a habit of holding his arms and legs in the fetal position and clenching his hands tightly. He is getting better though and we do exercises daily (when Lincoln permits) to help loosen him up even more. It is so difficult to catch Linc in a good mood that his occupational therapist has only been able to work with him once and his physical therapist has never had an opportunity. So on those visits, I relay his progress and we discuss activities to work on.

Doctors Visits:
Lincoln went to see Endocrinology at Children's last Wednesday. This was just a follow up visit to discuss his lab results from testing that was done while he was still admitted. All results were normal and as of now it looks like Lincoln's hormones are doing what they should. So the doc said that unless another doctor or I feel like there is an issue in the future, they are pretty much out of the picture. Great news!

Monday we went to the pediatrician for Lincoln's 4 month vaccinations. It was two weeks early, but it had been long enough since his 2 month shots. Linc's pediatrician wanted to keep a close eye on him for the first month at home, and this was the first week we didn't have another appointment, so she asked us to come see her. Lincoln got four shots, two in each thigh. We will need to go back for one oral vaccine that it was too early to give this visit. Other than that, Lincoln is good on shots until 6 months.

We talked about Lincoln's feedings and how the Pepcid is helping. Lincoln is still fussy and having difficulty eating sometimes. Some of his issues are due to the transition to formula so the doc suggested giving it a few more weeks and trying to add some prune juice to his bottle if he is constipated. She also gave a sample of another formula that is broken down even more that we can try if things don't get better in a few weeks.

Lincoln weighed 10lbs 6oz. The doctor was pleased and wasn't concerned with Lincoln's off and on feeding troubles just yet, since he is still gaining weight. He is still taking about the same volumes per day that he was  one month ago though.

Our next appointment is on Monday at the hospital. We actually see two doctors - newborn medicine and surgery. They are controlling Lincoln's meds and oxygen support so there could be some changes next week.

First Outings

Last weekend, the weather finally let up enough for Lincoln and me to go for his first walk around the neighborhood. It was about 75 degrees and overcast, perfect for taking an infant out. So, I put Linc into the Moby Wrap carrier and switched his oxygen to a portable tank and we were off. We walked around our neighborhood for about 30 mins. I think Lincoln enjoyed the fresh air and he was sleeping withing a few minutes. It was really nice to get out of the house for me too. Weather and Lincoln permitting, I think I will try to take him out more before it turns too cold. I have yet to use the stroller because it us just one more thing for me to lug around. With Linc in the carrier, I can pull his oxygen tank with one hand and still have one hand free. Unfortunately, I didn't take a picture since I was by myself, but it looked something like this...

Last Saturday, Dan and I decided to take Lincoln out to the grocery store. This was his first time in a public place, besides doctors offices. I held Linc in the carrier again and just followed Dan around the store as he did the shopping. I wasn't any help and would not be able to go to the store by myself with Lincoln, but it was nice to get out as a family. Up until then, Dan and I had not gone anywhere together since Linc had come home. Normally one of us stays home with Lincoln while the other runs out. It was nice to take Lincoln out a little to get him used to going places, but we still have to be cautious about exposing him to illness, so I had the hand sanitizer handy!

Photos - Home

A few pictures from the first weeks at HOME!

In the car for the first time

(This was the only time so far that Lincoln was happy in the car!)

Playing in the bouncy seat

Lincoln loves his rock n play!

Sometimes a hand is better than a binky

Daddy made Lincoln this balloon toy with giant eyes. Linc would look at it for hours.

Linc is ticklish!

Lincoln is starting to like his activity mat more

 I was going to wash some berries one night and thought this colander would make a great hat for Linc! He didn't mind!

I don't know if this blue rattle ball is really Lincoln's favorite toy, but it is the easiest for him to hold so he plays with it a lot!

Photos-Children's

Here are some pics from the last few weeks at the hospital...

Daddy and Linc hanging out in the FPU at Childrens

Lincoln's patient room sign moved to the FPU door!

Unsure about having physical therapy...

Had enough therapy for today!

Looking cool.

and awake too!

The nurses made this sign for Lincoln's 2 month birthday. They are so sweet!