Everybody's Favorite

Pictures from the last weeks...

Meeting cousin Layla...

 ...and Aubrey for the first time.

(Aubrey and Linc are only 3 months apart!)

Lincoln and Aubrey hold hands!

Go Cards!

(It's hard to see, but this is Linc's "Rookie Player" Cardinals shirt)

 Another pic of Lincoln's scar from his diaphragm repair surgery.

 Yum Yum

 

Watching his mobile in bed.

Lincoln is just adorable in "big boy" clothes!

Working on head control.

His activity mat has many interesting colors and shapes to look at!

Handsome boy!

He's so big!

Look at that concentration!

 

Birthday Bath Time

Lincoln is 5 months old! I can hardly believe it! He has now been home for half of his life! Since Lincoln no longer hates bath time, we "celebrated" with a bath before bed. I have never posted about bath time before since Lincoln always cried through the whole thing and it doesn't make for great pictures. It's great Lincoln is beginning to enjoy things more. He still doesn't get what I would call excited for a bath, but he does seem to like it and kicks his legs a little in the water. He only cries when I wash his hair. He has even begun to enjoy lotion application / massage afterwards!

 Relaxing...

(Linc's scar looks great. You can just barely see it where his bottom rib would be on the right. It almost looks like a wrinkle.)

 Kickin those legs

 I love that smile!

Since it has been a few weeks since Lincoln has been to the doctor, I measured him at home for a quick check.  He is over 12 lbs and more than 24 inches long. His eyes are still a strange color that Grandma has come to call "mystic." It's kind of a dark grey with brown and blue mixed in. Very unique. I'm hoping they stay that way. Lincoln is now in 3 month tops (but they are getting snug) and 3 month bottoms could probably fit, but he is still wearing 0-3 most days on the bottom. (He has the tiniest waist!) But he is on 6 month socks! He has also graduated to size 2 diapers. Lincoln has started to suck his thumb but still likes to chew on his pacifier and needs it to get to sleep. He seems to be off and on teething too, with so much drooling! He is sitting pretty well with assistance, and has begun to tolerate some tummy time (Finally, yay!) but still has a long way to go with head control. He has strong legs and loves to stand with help!

Lincoln is still waking twice most nights to eat. He actually has not been eating too well ever since I posted last. (I think I jinx us.) I called Children's last Friday to let them know that his feedings had increased for a few days but that they were back down again. At Linc's last Newborn Med visit, his doc asked me to call if his feedings did not improve within 2 weeks. They said they would be happy to see him in clinic if his respiratory status worsens (like increased wheezing which Linc does from time to time or desaturating) or just if I become concerned for any reason. At the time, Lincoln was not extra fussy or showing many other signs of distress besides his feeding volumes decreasing. They did change Linc's reflux med at my request to see if that could help his feedings. They said that the volumes he is taking (about 580 ml per day) should be enough to keep him hydrated, but if things get worse to give them a call.

Since his med change, Lincoln seems to be a little worse, which I expected since it takes a few days for the med to work, but man, has he been fussy! He doesn't seem to have symptoms of a cold or anything, besides some residual coughing and sneezing, which could be reflux and allergies. I'm going to try to give it a few more days before calling the doc again. Plus Linc will be going to see the pediatrician next week for his first Synagis shot, so I was hoping to hold out til then to express my concerns. Since I don't feel this is an emergent situation, I didn't want to make two trips to the doc, for probably nothing. I know it's better to be safe than sorry, and everyone one says to trust your instincts with CDH kinds, but I hate to make a trip for nothing. If things worsen before the ped appointment of course I will be calling / taking him in. I think we have only had one week home without some small complications, especially with feedings.

Overall though, Lincoln is just a different baby compared to when we brought him home 2.5 months ago. He has begun to play more with toys and is just so social. He love to smile and coo at anyone! Even strangers! He does seem to enjoy life when he is feeling well and does seem to be growing quite well overall despite his feeding hiccups. His OT has helped him tremendously with tactile desensitization. Like I said above, he actually enjoys bath time and lotion now. He also doesn't mind a diaper change, and can be put down for up to an hour to play by himself! We are working on sleep habits now and self calming to get back to sleep on his own. He does sleep in his crib in his room at night, but wakes at least twice (sometimes more) and has difficulty getting back to sleep. When Lincoln gets his feedings back up, I will work on getting him through the night without feeding every time he wakes. As of now, though, I gladly take the opportunity to give him some extra calories.

Lincoln was evaluated this week for the Missouri therapy program. I have not heard back about if he qualifies or not. The evaluation was basically a therapist sent to our house by the Missouri program who filled out five questionnaires in different developmental areas. Lincoln slept through most of the visit, so the questionnaires where completed by parent report, which the therapist said was fine. The coordinator is supposed to call me soon to let me know if Linc got in. I started this process just in time. His OT through the private agency was denied by our insurance, so as of now he is only getting physical therapy once per week. It is not too hopeful that Lincoln will be accepted since he is not that far behind developmentally. Which is great. It will be nice though if the MO program could work out though just to help Lincoln along and be sure that he catches up completely.

P.A.T.

Today was our first Parents As Teachers home visit from Mrs. Castello. I have known about the program since before Linc was born and thought that it couldn't hurt to have another person helping Lincoln develop to his full potential. I wasn't sure if starting P.A.T. now was the best idea since Lincoln already gets therapy from the private agency the hospital set us up with, but Mrs. Castello said she would come give me some info and talk and see how things went. I had spoken to her over the phone a little about Lincoln's condition, but I'm still not sure she was prepared for our visit today. She didn't understand at first my requirement of using hand sanitizer and never did end up using it, so I did not allow her to touch Lincoln. I don't think she was prepared to really work with him anyway.

She just watched me handle Lincoln as he fussed for a bit and then calmed down to play with a toy on the floor. She asked a few questions about his care, "Is he on oxygen all the time, like 24 hours a day?" "How long will he be on it?" "He seems fussy. Do you think he will go to sleep if you feed him? I know it's easy to get stuck in a routine." I explained that he is on oxygen until he is able to keep his blood saturated on room air, and that could be until after his first birthday. I also told her that gaining weight is a challenge for him (she had commented on his small size) and that his docs don't want him to eat too frequently because he will burn too many calories. Plus, he has just eaten 30 minutes before. I told her how he is very particular about what he likes as far as touch and motion and that he is just sensitive. It's always difficult getting someone up to speed on Lincoln's life who has never met him before.

Mrs. Castello asked about some of the things he is able to do since I was not able to show her everything and she was also impressed with his progress considering his 2.5 month stay in the hospital. She said that he is doing a lot of things he is supposed to like putting toys in his mouth and holding his feet up while on his back, but that his head control is a bit lagging and that his tone when he is upset seems rigid (which is often seen in preemies). She didn't really have any new recommendations for tummy time and kept saying that she didn't want to tell me something that would go against his doctors wishes, like letting him cry too long during tummy time etc. I reassured her that I totally understood that she is just giving suggestions and I am fully aware that Lincoln's situation is not completely "normal" so his doctors are very involved in his development. She did stress that I need to take time for myself more and try to not worry about getting everything done all the time. She knows it's hard being a full time mom for anyone and Lincoln is requires a little more attention on top of that. She told me not to feel guilty about anything, which is really hard.

Over the phone, Mrs. Castello had recommended I contact the Missouri First Steps program to try to get Lincoln's therapy through them. I told her that they plan to come evaluate Lincoln on Monday next week, so she was giving me some pointers on what to emphasize and said I should let the evaluator know that Linc is enrolled in PAT and to drop her name. Apparently if Lincoln is accepted to the Missouri program, he would need to be enrolled in PAT anyway. That way as he ages and doesn't need therapy anymore, they can transition into just PAT visits. She said she would call to check on us to see if Lincoln is accepted into the Missouri program, and we made an appointment for her to come back in December. She also left some literature for me to read on child development. Overall it was good to get an intro into the program, but I think P.A.T. will definitely be on the back burner for a while.

RSV Season

I know I already posted about flu season, but I wanted to give a bit more info on RSV and why we're being so cautious this season with Lincoln. I want every one to understand that I am not trying to be overprotective or rude to guests in our home this season. Here is a post that almost all CDH parent have provided to their readers...


The doctor's office is working on getting approval (insurance) for the synagis antibody shots to prevent Lincoln from contracting RSV this season. He will get one shot per month through the season. Linc is too young to get the flu shot this year (6 months and up only.)

Some information on RSV and why we're being vigilant to protect Lincoln:

Nearly every child has had the RSV virus at least once by age two. For babies born full-term and without complications, it is typically a bad cold. But, the highest risk factors for contracting RSV and developing complications like pneumonia, bronchiolitis, and other sometimes fatal complications are: being born premature, being born with a lung condition, or being born with a heart condition. Lincoln is definetly at a high risk.  Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Lincoln home and safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands, and up to twelve hours on objects. If Lincoln contracts RSV he will likely be hospitalized. Last year alone, over 125,000 infants in the US were hospitalized due to complications from contracting RSV.

At our house, please be prepared to take off your shoes and wash your hands upon entering our home through the RSV season. Use the antibacterial hand gel frequently also. Please refrain from coming over if you are currently experiencing any illness symptoms, or have been in close contact with anyone showing symptoms. Also, please refrain from bringing small children into our home, as they are most likely to spread RSV.


Please do not let these precautions frighten you or stop you from making contact with our family. They are simple precautions that every loving parent with a fighter like ours must take during this season.

THANKS!

A Week of Accomplishments!

This past week Lincoln has been doing great! Three major accomplishments I want to make note of are...


1.  Lincoln is finally off of all narcotics!! This past Monday was Lincoln's last dose of morphine. He had been on a very small amount (0.1 ml every 4 hours) since about 2 months of age. He was initially put on morphine to prevent withdrawal of his discontinued Fentanyl drip while still in the hospital. The plan was to wean Lincoln of the morphine within 10 days, but he became dependent on it very quickly and had trouble weaning while he was still admitted. After three failed attempts, his doctor decided to send Lincoln home on the morphine and let him out-grow the dose. Over the past month I weaned his dose to every 12 hours, then once per day, then once every other day, then once every three days. This week Lincoln has been a bit more irritable, but he hasn't shown any major signs of withdrawal so I pushed ahead with the wean. I'm so proud of him! He kicked his habit! I will still be watching him closely for about a week before I get rid of the morphine, just in case!

2.  Lincoln has been doing much better with his feedings. ( A good sign that he is feeling better.) Yesterday he ate 830 mls! (His goal is about 840.) Aside from his short growth spurt just before his oxygen wean, Lincoln has never eaten so much! I am hopeful that Linc will continue to feel well and eat well. If he keeps it up, another oxygen wean will be in the near future!


3.  Lincoln is now able to roll from tummy to back! The other day I was doing tummy time with Lincoln (which he still absolutely hates!) and he was so angry that he pushed himself all the way up and he was so stiff that he just rolled over onto his back! I thought it may have been a one time thing, but he has continued to do this at several tummy time sessions. He only does it one way so far, to the right, but I am ecstatic none the less. Lincoln is struggling with tummy time and is beginning to fall behind on his achievements in therapy. Tummy time is the major hurdle to conquer in therapy since it leads to all other milestones, so it is just wonderful to see Lincoln accomplish rolling! It was not even on his list yet of goals for physical therapy, but his therapist quickly made note of his new ability! He was not able to show her yesterday, but she was able to see him roll to his side to reach a toy. Another big step for my little guy just this week!

Newborn Med / Genetics Appts

Yesterday was Lincoln's third follow-up appointment with Newborn Medicine at the hospital. My mom came with us again to help out with keeping Lincoln happy during the car ride. Lincoln actually did much better in the car than he ever has! He only cried for a few minutes at first but was ok for the rest of the ride! Actually his demeanor for the whole trip was much improved compared to last time. I'm so happy he is getting better.

Lincoln was weighed and measured when we arrived. He is now 23.5 inches long (1.5 inches longer than last visit), 11 lbs 3 oz (4 oz up), and has a head circumference of 41.5 cm (almost up 1 cm). The doctor was very pleased with Lincoln's progress considering the challenges of the past two weeks, including Linc's cold symptoms, decreased feedings, and mild jaundice. She said it was great that Lincoln was able to go through all of that without desaturating. She told me that a lot of times a catching a cold for a child with CDH means re admittance to the hospital because the child cannot make due with the support provided at home. She are pleased to see that Lincoln's cold symptoms have already cleared, for the most part, and that he had managed to maintain his weight (and actually gained some too) over the past two weeks.

The doctor looked Lincoln over and listened to his lungs. She said she can still hear a difference from the left to the right lung, but that both sound very clear. She was happy with his improved muscle tone and temperament. She also watched as I fed Lincoln a bottle. Since he was hungry, and he has had trouble finishing bottles, she took the opportunity to check his work of breathing during feeding. Lincoln has always gotten a little winded while eating and needs breaks throughout feedings, even when turned up on his oxygen flow. The doctor was happy with the way he ate, and said that his feeding problems lately are most likely due to him having a cold. She expects he will continue to take bigger volumes per feeding as he feels better, and should be back to full feeds in a week or two. If not, I should call her. She thought his jaundice was mild and needed no further attention.

The doctor did not make any changes to Linc's meds or oxygen. So he will continue to be on an oxygen flow of 0.8 liters per minute (or approximately 0.75 since I cannot set his meter to exactly 0.8) and turn him up to 1.25 for feedings. He will also continue with pepcid for reflux, sildenafil for pulmonary hypertension, and morphine which is almost weaned. She reminded me to watch for withdrawal symptoms for up to a week after discontinuing the morphine (loose stools, fever, vomiting, shaking). To help Lincoln get over this hump and back on track with weight gain, she suggested keeping Lincoln on the beneprotein supplement until we run out of the powder and to also mix his formula to a 24 calorie per ounce concentration. This way Linc can get more nutrition with the smaller volumes he is taking right now. She also suggested going up on the nipple flow so that Linc doesn't have to use so much energy to eat. She will reevaluate his diet next month when we see her again.

On a side note, I have switched Lincoln to a diet of all formula. It was too much to try to pump after feeding him, and I didn't want to risk him loosing weight during a period where we work on his latch for breastfeeding. I actually did breastfeed the first week after his oxygen wean, which is what I believe led to his jaundice. When he started having trouble finishing his supplement bottles that week, I decided it was time to throw in the towel. I am happy Lincoln was able to have breast milk for the first three months that he has been eating. 


The doctor was able to show me Lincoln's x-ray from the 19th, and we also discussed Lincoln's overall expectations. I was happy to see Lincoln's right lung was the same size as his left and there is no sign of reherniation, which I had already been told but it was nice to see the xray. His heart is still pushed a bit to the left, but the doc said that was just fine. She told me to view Lincoln's oxygen as a medicine that he is on to help him develop normally, and not as a sign that he is ill. He just needs some assistance to be able to play and do his therapies until he can grow more healthy lung tissue. She said that some very premature babies that are on initially on a ventilator for several months may need oxygen support until 1.5 - 2 years of age. Lincoln was very sick while in the NICU, so his needed support is expected. She expects Lincoln to catch another cold throughout the winter and it will be challenging for him to wean. She will be happy for him to get to a baseline of 0.5 liters by the end of the season. She reassured me that both Lincoln and I are doing great.

Lincoln also had a follow-up with Genetics. This was just a formal follow-up for the tests that were performed while Lincoln was in the NICU (similar to his Endocrine visit). Since Lincoln was born with two abnormalities (CDH and Hypospadias) the geneticists ran additional chromosomal testing to look for a link. All of Lincoln's genetic testing came back normal and so they do not have a genetic explanation for his conditions. Since so much research is being done currently on CDH, they would like to see Lincoln again in two years to check in on him and to let me know of any genes that have been identified as linked to CDH that they could test for.

After Lincoln's appointments, we headed upstairs to visit Lincoln's favorite NICU nurse and OT. It was nice to see them and they were so happy to see Lincoln and that he is doing well. They told me that in the two months that Lincoln has been discharged, they have had two CDH babies who both passed away, one of which was on ECMO for very long. They now have a third baby that is less than a week old. It is amazing how quickly I had begun to forget how close we were to losing Lincoln. I tear up now remembering those days in the NICU of the ups and downs and thinking of the other families going through it now. I can only imagine the pain of those two families whose children didn't make it. I wish the best for the CDH baby fighting for his life now and the families will be in mu thoughts. I'm so grateful to all the doctors and nurses and staff that had a hand in seeing Lincoln through, and especially all the support Lincoln received from family and friends. I may not be especially religious, but I definitely believe in universal energy and the impact of positive thought. This year has been such a challenge for my family, and it is just wonderful to stand back and see where we are now...together.

Cutie Pie!

Lincoln's cold symptoms seem to be getting better over the past week. He has developed a bit of jaundice from not eating very well lately, but seems to be improving. We go to see Newborn Medicine Wednesday this week so check back for an update later in the week. Until then, here are some pictures from the past week...

Getting in a few walks before it gets too cold

I'm starting to put everything in my mouth!

 Snuggling with my bear-My favorite! (thank you Wendy!!)

 Playtime with Daddy

My "other side"