We Are Home

Luckily we got to go home last night. Since Tyler tested negative to RSV and pneumonia and the nebulizer eased his breathing they didn't need to keep him. YEAH! Tyler was even able to sleep in his own bed last night for 3 hours and then 4 hours before needing to eat. I had to hold him all day yesterday on my shoulder. Ben or my Mom wasn't good enough, he screamed when I wasn't holding him. Made for a long day. So I'm ecstatic that he allowed me around 6 hours of sleep. He still is very nasally sounding to me, but he is sitting happily in his bouncing chair. We go to see the peditrian at 11:30 this morning.

Accused of impersonating medical personnel. Again...

I'm writing this from the ED(Emergency Department) at Southern NH Med Center. Tyler has been congested for a few days and it came to a head today. He has been getting more fussy by the hour, sleeping and eating less. Today Sharron called the pediatrician and they told us to come in and get him checked out.

We have been here for about an hour and have already been through triage, where we caught the nurse off guard with an acronym that she didn't know. (PIE =Pulmonary Interstitial Emphysema).
Tyler's abridged history takes about 10 minutes and most of that time is the poor triage nurse typing. Then a new set of chest X-rays, where we were asked if we were professional X-ray techs.
We can't forget all the nurses who came running to see him. Apparently nurses can smell a cute baby from about 20'. We expect someone to come draw labs and most likely see how he does with a nebulizer treatment.

We're hoping it is not Pneumonia or RSV (this is where you knock on a nearby wood product). Either one would very likely put us back in the inpatient column. It's pretty clear that he is congested but overall his numbers aren't that bad. Hopefully we'll have some answers soon.

RSV and Tyler

Today Tyler had his first round of shots for RSV. RSV is a respiratory virus that is very dangerous to preemies. Most full term kids gets sick with RSV within the first 2 years. Most times these kids just have a really bad cold. Their lungs are strong enough to handle the virus and usually doesn't need more than Mom and Dad's supportive care. Preemies and other babies who have chronic lung or heart problem have a difficult time with RSV. Their lungs are not as strong as a healthy full term baby even if the preemie is strong and looks normal. Lungs develop much slower and are very prone to complications. A preemie with RSV will most likely need to be hospitalized. Pneumonia and death is extremely high in preemie's with RSV. So Tyler gets a $3K shot every month from November to March or April depending on the season. RSV has seasons up in New England just like cold and flu. RSV is very contagious and can be spread by sneezing, coughing, and will live on surfaces for over 6 hours. That is why you see our hands are very chapped at our house. This shot will not decrease the severity of RSV if he comes down with it. Instead it makes it harder for him to contract it. We still have to be smart with him. So we stay away from malls and busy shops. We all wash our hands nurotically and we use purell like it's going out of style. We also ask people to stay away if they are sick or have been exposed to someone who is sick. Since someone with RSV looks like someone with a bad cold, there is no way to tell if Tyler is being exposed to RSV.

We had excited neurosurgery news last week. Tyler's MRI looked "Fantastic"! The cyst that had holes poked into in August is barely seen on Thursday's scan. The shunt is draining that off relieving any pressure on the brain stem and the cerebellum area of the brain. This is one of the area's that could continue to give Tyler a hard time to develop properly. With the cyst going away...well it's awesome news for us. The weird area in the front right ventricle where we were concerned another cyst was forming has also cleared up. His over all ventricle size is slowly equalizing to were they need to be. It was an a huge day for us. And the icing on this cake is we don't have to see neurosurgery for 3 months and don't need another MRI at that visit unless he starts to act funny.

Tyler is doing beautifully to go along with this news. He smile and giggles all the time now. He is hitting all his developmental milestone appropriately for his corrected age. We are helping him out with some stretches to be able to move his head better because of the shunt. The shunt and "bump" stick out of his head on the right side making it hard for him to turn his head up and over it. Over a long period of time fat deposits and scar tissue will minimize the bump the shunt causes but for now it kinda sticks out like a sore thumb. I've had more little kids come up to Tyler fascinated by the shunt and ask questions about it while the parents take one look at him and avoid us like the plague.

Over the last two weeks, we've seen him gain more head control and is starting to raise his head off the ground when he is on his tummy. This has been the hardest milestone for him to hit. With the shunt, his tummy hurt for a while after the surgery making it hard for us to put him on his tummy. We are even seeing him being able to sit for a few seconds before crunching over. Then he will straighten up for a couple more seconds before he is too tired to sit. We are hitting the really cool stage where we see changes from little baby to big baby.

Tyler had is weight checked yesterday and weighted in at 12 pounds and 4 ounces. He grew a pound in just about 3 weeks. He is getting so big when I tell people he's 5 1/2 months they accept it. I don't get, "but he's so small" anymore. He is such a happy little guy to boot.

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5 Months Old

Tyler is 5 months today! Time in one sense has flown by and in another I can't believe he already 5 months.

We've had another full week of appointments last week. We saw his development Dr, neonatalogy, and audiology on Thursday. All went really well. We spent about an hour with development having him sit up, lift his head, turn his head, move his eyes in all directions. She did ask if there were any learning disabilities in the family and Ben and I just looked at each other and giggled. We told her Ben is visually dyslexic and ADD while I'm most likely audio dyslexic. Her respond was "you didn't give this child a chance did you!" Over all she was pleased with his development. So far he is hitting all the mile markers for a 2 month old baby, which he would be if he didn't come early. She did notice his neck being a little floppy and not holding his head up quite as nicely as she'd like, but isn't too concerned about it yet. An hour after she said this to us, Tyler held his head high for the neonatologist. Once again we are reminded everything is done on his terms.

It was a whirlwind visit with neonatal. The biggest thing is all the oxygen tanks and monitors are going back. We haven't used oxygen since the first week of August and we got fed up with the monitor alarming because Tyler figured out how to get the sensor off. Since August his oxygen saturation is between 97 and 100% so it's time to get rid of it. If he needs it again at this point he needs to be in the hospital because something is seriously wrong. One less thing to trip over in our house.

Our last appointment was with audiology to recheck his hearing. In the ICN his left ear referred meaning it needed to be tested again. So after an hour of quietly sitting in the dark rocking him, changing out the normal EEG pad for super sticky ones that need adhesive release to get them off, and holding the ear phone in his ear Tyler fell asleep for the test. Both ears can hear all the pitches and volumes. There is nothing wrong with his hearing. The ear drums react the right way and there is the right echo in the middle ear. We don't need a hearing specialist!!! We don't have to go back to audiology unless we think something is wrong down the line.

Early Intervention also came back out and was finally able to play with him. So far it's been a whole bunch of paperwork for the state. He was in a good mood for her and showed the therapist that he can do all the 2 month old milestones and is well on the way to mastering some of the 3 to 5 month milestones.

Over all things are going quite well and I'm hoping to see a slow down in the amount of Dr trips especially over the holidays. It will be nice to slow down some. We've been enjoying a lot of smiles, giggles, and cooing from Tyler the last couple of weeks. He is a very happy little baby despite always seeing a doctor. He keeps amazing us. (His sister is just as amazing to put up with all this.)

A Long Week

This has been a long week full of ups and downs. Everyone seems to be slowly recovering from colds. Thankfully Tyler never seemed to have more than a sniffle, especially amazing since I had bronchitis.

We had some good news on Tuesday from the neurosurgeon. Tyler finally has a normal feeling baby soft spot. His post surgery emptiness finally filled in last weekend giving him a nice round head with a slightly sunken fontanel. The MRI showed his ventricles and cyst are smaller. The only thing odd we saw was a pocket in the right upper part of his ventricle which hasn't shrank in size. We don't know if that is another cyst forming despite seeing no evidence of bleeding in Tyler's post surgery CT scan or if it is still a pocket of air trapped from surgery. If you line the weird spot up with the CT scan the air pocket is in the same place as this abnormality. So we wait a month and have another MRI. Worst case it's another cyst that they will need to fenistrate. They would go in the same place they have in the last 2 surgeries and if it's a cyst it's much easier to get to this one. If it's air we should see it dissipating over time. The surgeon keep commenting on how good Tyler looks. He was awake and alert for her, talking to her, and just looking around.

The other appointment we had on Tuesday was a meet with lactation to see if we can teach him to nurse. I haven't really tried over the last 3 weeks because he was rather bad before surgery and then there was so much post surgery pain I didn't want him to associate nursing with his tummy feeling bad. It took a solid 2 weeks for his tummy to recover. They moved his innards around to make room for all the tubing for the shunt and that tends to irritate the bowel. My little superstar latched on right away and really for the first time took a full meal at the bar. Since Tuesday, he's taking close to 75% of his feedings at the bar. In the late afternoon if I don't catch him early enough he's too fussy and wants a bottle. But all said and done I've been able to cut down to only 5 pumps a day instead of 8 and will be able to continue to drop pumpings over the next couple of weeks. I get around 3 hours of my life back!!!

We also met our new eye Dr this week. Thankfully we don't have to go to Dartmouth for this one. She took another very thorough look at his eyes with all the torture devices previously used on him. He screamed but overall allowed her to see what she needed. The first thing she said was he has huge symmetrical optic nerves. Going on to say it could be swelling from the hydrocephalus. It may go down now that the shunt is in. She also said large optic nerves can be a sign that a shunt has malfunctioned quickly saying that she doesn't think this is the case here. My reply was he could also have his mother's eyes with abnormallyy large optic nerves and will soon become a glaucoma suspect. Unfortunately, she agreed that could also be the case. As for this slightly wondering eye, that could just be he is only 2 months corrected age and the muscles just haven't developed enough control yet. We go back in a few months for another exam. Overall his eye look really good and we just monitor him and see what the wondering eye does and watch his optic nerves.

We also seen Early Intervention. A physical therapist and speech therapist came to see him. He had one of his great alert times for them and was cooing up a storm. The speech therapist was very excited with the amount of noise he made and how expressive it was. Tyler is able to move his arms and legs very well and equally. He can also move his neck the full extend despite having tight muscles. We have a simple stretch to do for him to help that. They did see his wondering eye and will recommend the MICE program for him. This program offers specialist therapist for seeing and hearing to come out with the regular physical therapist. At the end we heard that Tyler is displaying all the correct cues expected for a 1 month old baby. Hooray!!!

I'm hoping to relax a little this week. So far we only have one Dr appointment scheduled and that is another day up at Dartmouth. We see a development Dr, Neonatology, and Audiology all on Thursday. Now if only I can get Zoey (the dog) to get well again so I don't spend all week at the vet's.