Crawling and Bawling

That's what happened today at therapy. Randy crawled and I bawled!

Maybe I am exaggerating a bit. He did not crawl in the way you are thinking. He was not up on all four and move alternating arms and legs. Actually he was laying on his belly and his dug his toes into the mat and pulled himself by both elbows at the same time as he pushed off on his toes.

But for me, he crawled. And I bawled!

Ok, maybe I did not bawl. But there were tears in my eyes and they were pushing against my eyelids. And every so often one would fall. The OT said, "Mom you are going to make me cry too."

Randy crawled and I bawled!

These were certainly tears of joy. He has overcome so much. He is so determined. He has worked so hard to do things like eat and play and sit up and grab toys and roll over and see and hear. Today was a major victory!

Randy crawled and I bawled!

I bawled for the baby that the OB said "I'm not sure if this is really a baby; don't celebrate" because my hormone levels were out of whack.
I bawled for the baby that I laid in the bed for three weeks and tried to keep him in my womb.
I bawled for the baby that took 20 minutes of tugging and pulling to get out of the womb because he was trapped by those awful fibroids.
I bawled for the baby that was given a 50/50 chance on his first day of life.
I bawled for the baby that suffered grade III IVH (brain bleeds) on his fourth day of life.
I bawled for the baby that contracted MRSA and meningitis.
I bawled for the baby that has had 10+ brain surgeries in the first nine months of his life.
I bawled for the baby that spent more of 2008 in the hospital than out.
I'm bawling now because I am in awe of my little man.

Randy crawled and I bawled.

19!!

That is the number of ounces of formula Randy drank today. Randy has drank less than 13 oz per day since the beginning of May. I was worried. The feeding team was worried. His OT was worried. We tried every cup known to man; different ways to support his chin. Nothing was taking him over that 13 oz mark. And actually he was averaging only 10 oz.

Well since his revision last Friday, each day he has drank more milk. He drank 13 oz on Monday, 14 oz on Tuesday and Wednesday, 15 oz on Thursday and Friday, and today.....!!! Could it have been the shunt? Did he have pressure in his head that made drinking uncomfortable? I do not know. But if it was the shunt, then I know to pay attention to even the smallest changes. His neurosurgeon and I were puzzled why he was not acting sick. Maybe he was; it just was not as drastic as expected.

"The signs and symptoms of shunt malfunction, are the same as for hydrocephalus itself, headache, nausea, vomiting, irritability, change in behavior or intellectual performance, etc. "

I guess I was expecting more drastic symptoms from him. Now I know better.

Randy's Adjusted Birthday

Today would have been Randy's first birthday had he made it to his due date. It is amazing how different I feel this day than I felt on his actual birthday. On his actual birthday I was a ball of emotions ranging from grateful to angry to sad. I was not able to have a party for him because his sensory issues were bad at the time and he would whine and vomit when he was around too much commotion or too many people. And it was still RSV season and I did not want him to get sick. Today he still does not like a lot of commotion; but he is soooo much better. He may whine a little, but he no longer vomits from the over stimulation.

I had seriously considered having him an "adjusted birthday party". But as time got closer, I decided against it. Now I know I have to adjust for medical reasons and to get a better estimate of where he should be developmentally, but I need to being to mourn the notion of when he should have been born and accept that he was born 3 months early. I feel that this is an important step in me stopping all the "what ifs" in my head. So instead of thinking if he had been born this day he would...

• be standing and/or walking
• not have hydrocephalus
• not have a shunt
• not be delayed
• ready to move to cow's milk
• drinking from a sippy cup
• drink more than 12 oz per day
• not have spent months in the hospital
• have good vision
• have good hearing
• not be "special needs"

I am focusing on his strengths. He is:

• charming
• sweet
• able to sit, scoot, and pivot
• can say ma ma, da da, bye bye, hi, and la la
• strong
• determine
• loving

His prematurity affects who he is, but it does NOT define him.

#1 Wins!!!

We are going home. He will get a follow up CT in 1.5 weeks and see the neurosurgeon.

The possibilities

The attending pediatrician stopped by and said there are three possible outcomes once the Neurosurgeon reviews the CT scan:

1. Send Randy home and follow up in two weeks
2. Observe him and order another CT/MRI in a couple of days
3. Take him into surgery today - X

We can mark off #3 because they allowed him to eat!

Maybe?

The CT results are in. The nurses from neurosurgery say that it looks pretty stable; but the final word comes from the doc and he is surgery right now. Randy wants him to make a decision so that he can eat.

A little more detail

Right now Randy is resting comfortably. He was a bit groggy (more than normal) after surgery yesterday, but had perked up by 2 am when it was time for his CT scan. Thankfully his nurse let me off the hook and went down to the scan with him so that I could get some sleep on this wonderful pull out (did something drip on your screen). The neurosurgeon on call this weekend (she knows Randy well too) said that the left ventricle is slightly smaller, but the right is larger. She wants a repeat scan on Monday. So no Sunday discharge like we hoped for.

After surgery yesterday, Randy's neurosurgeon said "I have good news and bad news". Of course my heart stopped beating instantly. I am going to try to explain it the best I can.

Background info: Randy has one shunt with two catheters attached; one that goes into the right ventricle and one that goes into the left ventricle. The left ventricle is the one that is greatly enlarged over his baseline. It is like 5-7 times bigger than his normal. The right ventricle was only slightly larger than it has been in the past. His neuro was amazed that he was not presenting symptoms. He does think that this has been slowly building up and within a few weeks he would have been symptomatic.

Good news: Both catheters were clogged and would not flush at all. He was able to clear the left catheter (the larger side) and get it flowing. I can't remember if he changed the catheter, but I'm pretty sure he did. He also said that the left and right ventricles appear to be communicating (fluid flowing back and forth).

Bad news: The right catheter is tangled in blood vessels. It would be risky to try to remove the catheter. He did reconnect the catheter in the slim chance that it started to work on its own again.

So what does this all mean? Well, if the ventricles continue to communicate then the left catheter will work just fine. If not, then he will have to endure another craniotomy and go in and create a path for them to communicate. I do NOT want him to have another craniotomy. It is a big surgery. He has had one before. It took him a while to heal, and he lost so many skills after the surgery.

Pray for my baby.

Surgery....

Surgery went ok. Randy is now in recovery. He will get a CT scan in 6-12 hours and another one on Sunday morning. If all goes well he will be sent home Sunday.

Randy's in surgery

He just went in at 3:30. I just typed a long and detailed post and this hospital computer deleted it. I don't have the energy to type it again. Maybe later. Pray that all goes well.

Randy at the hospital

Everything is happening really fast. Randy's MRI from yesterday showed that his ventricles are significantly larger than his last exam and larger than they should be. He is all checked in and has had x rays of his shunt. The IV team is on their way to put in a line and draw labs. I refuse to let a floor nurse put a line in him. And they know him well enough that they don't want to. He has a CAT scan scheduled in the morning and a revision in the afternoon depending on the results. Pray for him.

Another Hospitalazation

The nurse from the neurosurgeon's office called about an hour ago and told me to bring him in for admission. His ventricles are significantly enlarged. Indicates a shunt failure. I will update when I get a chance.

Feeding Team

I want ALL of Randy's doctors to buy the same scale and calibrate them the same and measure his length the same!

Whoo; I feel better now. Randy had his follow up with the feeding team today. This was a long appointment where they want to see him eat and he is evaluated by the nutritionist, OT, speech therapist, nurse, and GI doc. His last appointment was in February. He grew more than two inches and gained 31 ounces. His current stats are:

Weight: 18 lbs 10 oz
Length: 29 inches
Head circumference: 43.6 cm

They were not pleased with the amount of formula that he is taking in. He is drinking 8-10 oz per day, and I sneak another 3 oz in with his cereal. They want to change him to a "toddler" formula once his allergy testing is complete. It really is more like a nutritional supplement. The nutritionist wants to try Pediasure (if no milk allergy/sensitivity) or Elecare Vanilla (if there is a problem with milk). Both of these are either 30 cal/oz or can be mixed to that. His current formula is 20 cal/oz.

I also learned that an ENT is part of the feeding team. He was called in because of the fluid on Randy's ear, the failed hearing tests, the lack of interest in bottle, and the summer ear infection. He was not in agreement with the "wait and see" approach. He felt that we had waited long enough and it bothered him that Randy had an ear infection in the summer. He says that is not a good sign about the fluid build up. He wants to proceed with tubes. He does not want to jeopardize his speech development, and he feels that the feeling in his ears could be jeopardizing his fluid intake. He was an amazing ENT. He took a "holistic" approach and talked about how many of these small issues were related and the larger implication, mainly his growth and development.

He consulted with the GI (who usually comes in, but sent the ENT instead) about ruling out any medical reasons for Randy not wanting his bottle. We know that some of it is related to solids, but he wants to make sure that his anatomy is working properly and that we are adequately managing his reflux. Randy will get a video swallow study and an EGD. He will have to be sedated for the EGD, so the tubes will be put in at the same time (that was the selling point for me).

I left the two hour appointment with my head swimming and wondering if the pendulum had swung the other way and we were moving too fast. But my gut is saying to go ahead with the tubes and the EGD. I have researched them and know that even if they were unnecessary, they will not bring him fatal harm and they will fall out in 1-2 years. I cannot risk my son missing any more months of clear hearing. He has enough hurdles to climb without me not removing one that I can. I love him way too much to know do all I can for him.

Took this off a friend's Facebook...

The little cold has....

turned into an ear infection. Randy developed a cough and the slight fever lingered over the weekend. I told myself that I would call the pediatrician if he did not feel better this morning. I always second guess myself when deciding to call the doctor or not. I don't to be a frantic mom that takes him to the doctor for everything; but I also don't want him to suffer unnecessarily. And Randy has a tendency to present such slight symptoms even when he is really sick. My daughter had chronic ear infections as a baby; and I always knew. She got sick very quickly. High fever, vomiting, screaming. You get the picture. Randy just barely runs a fever and does not scream. Usually the main indicator for me is his mood. He is generally so happy, and when he is ill he gets cranky. I knew to call when he cried all the way through physical therapy today.

Speaking of therapy, the OT tried the honey bear cup with him after his PT session. She ordered him one and wanted to try it before we saw the feeding team tomorrow. The honey bear cup allows you to squeeze the liquid through a straw. He did no better with this than any other cup. He would not close his lips around the straw. She said if she has to teach him to drink from a cup, she may as well teach him to drink from an open cup. This is a link to see the cup
http://www.talkingchild.com/shop_HoneyBearCupwithStraw.aspx

Randy goes to see the feeding team tomorrow. I was nervous about the appointment since he has not been drinking very well. But I feel better because he weighed 19 lbs today at the pediatrician!

BTW-We are cameraless (is that a word)? right now, so no new pictures.

A little cold coming on

Randy starting coughing yesterday and this morning his breathing was a little loud because he was congested. It has now turned into a cold with the runny nose and slight fever. I am grateful for the Internet because I still use his thermometer from the NICU (they send you home with all the tools from the bedside). Well they use metric in the NICU. So his thermometer reads the temperature in Celsius. I cannot convert in my head, but I remember that they always said it should be no lower than 36.5 C and no higher than 37.1 C. Randy's temp was 37.6 C (99.7 F). This is nothing a little Tylenol and rest can't take care of.

Randy and Grammy at physical therapy

I had the great pleasure and honor to take Randy to have his p. t. on two Mondays. He is such a good boy but I did see his patience pushed to the limit. He also likes to do things his own way. Randy moves to his left side very well. His therapist is working with him to use his right side also. She tells him unless he starts to use his right side as well he will continue to go in circles. She uses different toys to attract his attention and she lets him move to the left then when she wants him to move to the right she gently assists him. She also helped him stretch his muscles on the right side. She is very good with him. He responds to her very well. That is until she had him on his knees. The first week we went he screamed bloody murder when she had him on his knees. He did not like it at all. This week he seemed not to mind it quite as much. She was pleased with the progress he is making and tells him he is doing a "good job." At the end of his session this week she let him roll over until he was right by me. He lifted his arms and we left.

ENT & Allergist

It feels like I have not posted in ages. I took Randy to the ear, nose, and throat doctor because he had a failed hearing test and his tympanogram (sp?) showed that his ear drum was flat. The audiologist stated that the flat ear drum usually meant there is fluid behind the ear and referred us to the ENT clinic.

We waited a month and saw the ENT. Can you say "Waste of time?" The doctor came in and of course asked me all the same questions that I just told the nurse: "....26 weeks.... 1 lb 10 oz.....latex precautions.... failed two hearing screenings...hydrocephalus...." He then looked in his ears and said that the eardrum looked dull. He wanted him to take a tympanogram. He said if he passed it, then he would take another hearing test.

And then he tried to leave the room. Now anyone who knows me can predict what happened next. I said, "Hold up! I have a few questions." I asked him if Randy's weak suck and lack of interest in his bottle could be related to the fluid on his ears. He said no. I asked him if the fluid in his ears could be allergy related. He said it was possible, but the only way to tell was to remove the allergen and see if the fluid goes away.

The nurse gave him the tympanogram again. This time both ears got a flat reading. She then told me that I should bring him back in 3-4 months. Is your mouth hanging open too? The nurse noticed my puzzled look and asked if I wanted to talk to the doctor again. "No thanks." Can you say waste of time?

The allergy appointment was the total opposite. The nurse asked me a few history questions. The doctor questioned me too, but she did not ask the exact same questions. She probed deeper and even asked different questions. She was calm and did not act like she was in a hurry. She decided to give him a blood test instead of a RAST (skin) test. She did not want to risk a severe reaction. She has a phlebotomist in her office, but felt more comfortable sending him to children's since his veins are almost non existent. She tested for: milk, soy, eggs, latex, dust mites, and a few other things I can't remember. She said to bring him back in 2-3 weeks.

Well, today the nurse called and said that his blood test was negative for milk, but positive for egg whites. The latex test was not done (they probably ran out of blood because they did not fill all the vials. That is a long and horrible story for another day). She is going to do a skin test for the milk when he goes back. The blood test can have false negatives. The skin test can have false positives.

When she first said eggs I thought, "OK. No eggs for you buddy." Then I thought about all the things made with egg: pancakes, cookies, yogurt, ice cream, casseroles, lunch meat, some breads, donuts, muffins, chicken nuggets, etc.....