Squash Smoothies

It's been a very emotional couple weeks for me as a mother.  I can say that at a moment when you feel like everything is on the upswing, everything can change in a quick moment.  Baby GL is doing great, no worries there.  We did have a couple clinic visits last week that created a lot of stress, so much so that I actually got a spring cold that I'm still trying to recover from. 


Our first clinic was the eye clinic.  Last time we visited was when the doctor cleared Baby GL for ROP, meaning no need for laser eye surgery.  That alone was great news.  This visit was actually quite promising, also.  The doctor confirmed that Baby GL will probably need glasses.  However, she won't need to see him now for a year.  Between ENT and the eye clinic, that's 2 less clinics we have to put on calendar for now.  Our next clinic visit was a whole another story.


We had our routine visit to GI, Gastroenterology.  I usually feel pretty stressed at these appointments, but this time it just broke me down completely.  First we spoke to the Nutritionist.  She said Baby GL is gaining weight, average 12 grams a day, but it's not quite as much as they would like to see.  She asked me questions about his feedings and as I explained our routine she just gave me this look of disappointment.  Why didn't I have a better schedule?  Why wasn't I fattening him up with proper amounts of vegetable oil?  What a terrible mother! That wasn't even compared to the way the doctor made me feel.  He came in again with the look of disappointment because Baby GL is well below average on the growth chart.  He wanted me to give him our daily routine broken down to the hour.  How much he eats, what he eats, how he eats.  He's a baby.  What baby is on a routine hour by hour unless he's hospitalized.  Baby GL is 13 months old.  He bounces, he plays, and we feel lucky when we are able to get food into him and then follow up with a dirty diaper.  Well, apparently that's not good enough.


The GI doctor is still very concerned about Baby GL aspirating on his feedings.  To my understanding, after speaking with our Pulmonologist, there was no sign of residual food in his lung seen by his CT scan so we should keep feeding as we've been doing.  Well, once again I am a terrible mother.  The GI disagreed.  He said there is no way to tell if the aspiration is doing permanent damage.  So I ask what was the purpose of the CT?  My understanding was that we did the CT to see if the aspiration was an issue.  Again, I must be wrong.  GI believes that we need to be primarily G-tube feeding Baby GL.  Even consider going back to the G/J-tube that caused so many problems back in the fall.  He had the audacity to talk to me about surgery on his stomach.  So what do we do?  Do we continue to risk damaging our son's lungs which in the future could mean a lung transplant, according to the GI?  How do you tube feed a child that, when awake, is in constant movement.  It's a battle.  The more we tube feed the more he vomits.  So that brings the idea back for the G/J-tube that feeds him directly to the intestine, bypassing the stomach completely as well as avoiding oral feeding.  Baby GL is not a vegetable.  He recognizes a bottle and reaches for it when he's hungry.  How do you take that away from a child?


So now I struggle with the choice of what to do.  How do you choose?  We've been making great progress with our array of therapies and the GI doctor wants us to move backwards.  Well, his treatment was to tell us that Baby GL must take in 21-24 ounces of formula a day.  That is quite an increase from what we've been getting into him the last few weeks.  We can't go back to overnight feeds because then he doesn't sleep.  Luckily, Baby GL has been hungry lately and he'll take 12-15 ounces orally.  However, is that too much orally?  He doesn't sleep enough for us to tube feed more than maybe 10 ounces.  His naps are not very long and he'll wake up when he feels the sensation of food entering his tummy.  How do other parents do it?  They manage to feed their babies when they're hungry and naturally they decide to agree to spoon feeding.  Why do we have so many problems?  Not all parents have swallow studies so how do they know if their children are aspirating?  I guess they wait until their child gets sick.


I got angry.  I decided to prove that GI wrong and get Baby GL to grow.  So now I mix squash smoothies.  Surprisingly, squash and sweet potato will smoothly mix with formula so that it can be given out of a bottle.  It also is smooth enough to be fed through the g-tube.  I am determined to give my son the nutrition he needs and get him to grow to prove to that GI that I am a good mother and we can do things without cutting my son's stomach open again.  He already has 2 scars on his tummy and a third once the g-tube is removed.  We'll continue to mix these "smoothies" until Baby GL agrees to feeding him by spoon.  He will sit and eat the food off his toys and use the spoon himself, but it's never enough.  So until he takes a spoon from us he'll get it in any other way we can give it to him.  What do other parents do in this situation?  Maybe these situations aren't common.


This week we saw the Cardio clinic.  I had prepared myself for a cardio catheter, but I guess I misunderstood. We actually ended up meeting Pulmonary Hypertension doctor. Apparently, the cardio catheter is very invasive so it's not something they will do right now.  The doctor basically explained that the echo shows signs of increased pressure due to the ASD, hole in his heart.  Without the cardio catheter he can't say how much pressure is present.  The pressure can actually cause Baby Gl to not grow productively so that could be one of the cause of his slowly growth.  He also saw the CT scan and there definitely is evidence of scarring on his lungs.  Its difficult to say if any of it is permanent.  Unfortunately, he agreed that the aspirating can continue to do more damage, which I know, but we still are unclear what we should do.


His treatment is to remain on the O2 and he wants to add some meds.  The meds have some side affects that could cause some issue with his surgery coming up in June.  One of the side affects for boys is the possibility for erections.  Well, starting in May Baby GL will be getting 2 rounds of testosterone in preparation for his surgery for his hypospadias, which is on his penis.  Due to the fact that we don't want to cause our son to have a 6-week erection with all the meds stacked on top of one another we're waiting to hear back from the doctor before we would start any new meds.  I know in years to come Baby GL will be yelling at me for discussing this via the web.  Oh well, it's the joys of being a parent, embarrassing stories about your child.


Baby GL's most current weight is 13lbs 13oz, length was about 25.25 inches.  The length is never very accurate due to each clinic doing measurements using different techniques and Baby GL being finicky about straightening his legs to get measured.  Baby GL's corrected age is 10.5 months.  I know he's small for his age, but I think any growth at this point is a huge accomplishment from his frail 1lb body he began with.  We will continue to do what we can as parents. 

One warm day

This week has been Baby GL has been making great strides in therapy.  Speech therapy has been giving me ideas on how to get Baby GL interested in eating.  So we have taken some time to cover the floor, put on the bib, and sit in the Bumbo chair.  With a plate filled with baby food I put a spoon and some teething rings.  It seemed to work well.  Baby GL put the baby rings and spoon in his mouth and he had no choice but to get some of the food in there, too.  I expected a puckered face and some gagging, but it did it very happily to my surprise.  We've tried it a few times and it seems to be getting better each time.  Last time I tried to add in some spoon feeds by me but was stopped by Baby GL's hand grabbing the spoon. He actually put the spoon in his mouth then and it was the correct end of the spoon not the back end of it.  It will take time, but I'm seeing progress.


Physical and Occupational therapy has seen some progress in his stiffness.  Even I have noticed a lot more mobility in his torso.  He has been sleeping more on his side now, which normally he'd sprawl out, arms wide, in his crib.  He twists and turns more freely and shows more interest in reaching forward and sitting up.  We're working on getting him comfortable on his tummy still.  The therapists usually put him on his hands and knees and have him rock back and forth.  He seems to tolerated it really well.  Once he's done the head hits the floor and he looks like he's about to hit a head stand.  Baby GL just shows us, daily, how he's taking everything at his own pace.


We've made huge strides with my husband.  We actually went out to dinner as a family last week.  He's been the one to really be afraid of taking Baby GL out into public places so I was very proud that he wanted to go out.  It was really nice.  We attempted to get him in a high chair but he wouldn't stay in it.  He prefers to be in our lap, anyway.  He'll actually sit better in our lap.  In the high chair he just slid forward and arched his back.  The high chair cover was no help.


Our only clinic visit last week was to the Ear, Nose and Throat doctor.  He reminded me of something I had completely forgotten about.  Baby GL has a cyst removed from his vocal cords months back.  He was talking about it and it sounded to foreign to me.  I couldn't believe I had such selective memories.  It wasn't even an issue, but it was brought up.  The doctor actually let us off his service at this point.  There are not concerns so he feels there's no need for the follow-ups.  One less clinic to try to keep track of.  Makes my scheduling easier.

We had another first this weekend.  Baby GL finally got to play outside.  We put his bouncer on the patio and he played in only his onesie and pair of socks.  The socks would be due to his father. He just can't get to the socks being off yet.  When he's not looking I usually take them off.  The weather was perfect for him.  He bounced with a gentle wind blowing in his hair.  Just can't wait until summer when we get to go out everyday for walks and maybe even try swimming!

A mother's courage

There hasn't been anything crazy exciting happening this last week.  My husband returned form his trip and I think Baby GL really missed his father.  Baby GL ha really taken to talking on Skype with family. He is so entertained by the computer.  We put his Baby Signing Time video in the computer for him to watch from his chair.  My parents get such a kick out of watching his reactions.  My father has actually given him a nickname.  He calls Baby GL "Goober".  I guess it's a kind of peanut.  Who knows.  The funny thing is that Baby GL actually responds to "Goober"  and just shows a huge smile when my father talks to him.  I'm still not sure how to feel about that.  I am excited to see my parents take such a huge role in his life.  My mother is actually picking up the sign language and attempting to teach my nephew some signing.  

So I discovered that once you find yourself having a child born to the NICU doors open to other families going through very similar situations.  I came across a mother who just recently lost her son to a year long battle with the same issues Baby GL had.  The same only in the sense that both her son and Baby GL were born with Intrauterine Growth Restriction.  The doctors begin to talk to you about chances of life and disabilities that could occur as early as birth.  So far, Baby GL has been successful is beating many major issues thus far.  My heart goes out to the many families that have to endure the heartbreak of losing a child.  This mother wrote so honestly and with so much courage and so I want to share a piece of her latest entry.

"There is a strange part of me that feels like the last year was just one big nightmare that I finally woke up from. I sometimes feel like none of it really happened and that I am still 20 weeks pregnant looking forward to the future of my second baby. Unfortunately, when I look down I am not pregnant, when I look up I see my son's picture on the mantle with his ashes and I have to accept that it was our reality. Every day since he was born, to cope with him being away from me in the hospital, I have always brought him with us. I carry him in my arms while he is nursing, I pick his car seat up and put him in the car, I place him in the bathtub next to Viola, I put him in the grocery cart next to Viola and tell them to stop picking on each other, I lay him down beside me every night and wake up with him every morning.....Every single day I have lived in this alternative reality, even more so now that he is gone. I am sure I will be grieving the rest of my life, but I also remind myself that I have so much to still live for, to be grateful for, and although I will never be the same, like I taught Viola a while ago when she used to fall down, I am ready to "take a deep breath, pick myself up, dust myself off, and start all over again".............." -Donna Mossholder, Mi-cro called life