Thick-it

Sydney's stay in the NICU has been a long one. She has been there for 18 weeks, we have seen three seasons and six different attending physicians. We are hopeful to not be there for the summer.

The month of March was an interesting one. Syd started it out by getting a virus. This stomach bug made her very tired, and she had a hard time keeping her food down. Luckily she was able to kick this bug and after a couple of days she was back to herself again. This really showed us how weak her immune system really is. Once Sydney comes home we will need to be extra cautious about her being around germs.

Once she got over being sick it was decided that Syd would benefit from bringing in the feed team from Children's Hospital of Boston. This team of specialists watched Sydney eat from a bottle. They did not like what they were seeing, so they arranged for her to go to Children's for a swallow study.

The study involved an ambulance ride down the street to Children's Hospital. This marked Syd's first road trip, although not a fun one. Once there she was put in a chair and a dye was added to her food. Using a ultra sound device they were able to see what happens when she sucks and swallows. Syd had a very uncoordinated action that resulted in milk getting into her nose when she tried to swallow.

The feed team decided to add a thickening agent to her milk and change her bottle. This was done to slow down the milk, and prevent the reflex that was causing the liquid to get into her nose, and make her choke. Immediately a change could be seen with the thicker milk, and change in bottle. The milk now began to go the right way, and Syd could eat without much incident.

Since using the additive "Thick-it" Sydney has been able to handle more and more of her eating responsibilities. Just yesterday we reached a large milestone when her NG feed tube was removed, and she ate orally on her own all day. Syd now just needs to show that she can keep this up, and gain weight. Once she does that, it wont be long before she is discharged.

40 weeks

Sydney reached her due date on Wednesday February 27th, 40 weeks gestation. This date also marked her 14th week in the NICU. Syd has continued to make good weight gain and is now 6lbs 7oz. She has also become very active, just like any full term baby would be.

Sydney knows what she wants. She will not hesitate to let mom and dad know that she wants to be held, or fed. She is very eager to feed, however it is still a difficult task at times for her. Her prolonged intubation makes it dificult for her. She is still working to build strength and stamina.

We were surprised this morning when we arrived at the NICU. Syd was out with her nurse at the main desk on a portable oxygen tank. Just sitting with her primary, content to be with her friends. She also now has a radio in her room. Sydney likes to listen to classical music when she is reflecting on the days events.

Sydney still has ups and downs, good days and bad. Through all this she continues to grow, and gain maturity. Her little personality is very evident. Her fiesty attitude continuing to push TeamKatz along.

Five Pounds

Sydney reached five pounds on February 1st. She has continued to have good weight gain. Syd has a good appetite, and has now started feedings without her feeding tube. For now twice a day and they will slowly bring it up depending on how Sydney handles it.

The doctors have also began to take her off supplements. They stopped her diarel and pottasium supplements this week. Soon they will take her off the caffeine supplement.

Sydney has also continued to get more coordinated. She holds her pacifier, and will grab at her feeding tube. She knows her mother and fathers voice, and loves to hear them read stories.

Nasal Cannula

Sydney was placed on nasal cannula on Monday the 28th of January. The big difference between cannula and CPAP is that there is no pressure helping to keep Syd's lungs open. She has to do all the work on her own. She gets a constant blended mix of oxygen. The Dr's and respiratory therapists will continue to ween her off of the oxygen as she grows.

This change officially marks Sydney being downgraded to a level two baby. She can be held at anytime now. Sydney will be able to have baths more frequently and go in her bouncy seat. These changes will mean pretty soon Sydney will be moved to another room. The rooms in the middle of the NICU are usually reserved for the less stable level three babies.

The move to the cannula also was the last step in the way of her beginning to bottle feed. The NICU staff will let her try this at the end of the week if she continues to behave herself. Feeding is a lot of work for preemies, so they will take it slow. Starting out with once a day and gradually working up to every time she has a feeding. Syd will have to show that this does not drain to much energy, and that she can maintain her breathing.

Two kilograms

Sydney is now 35 weeks, 4lbs 6.9 oz (2010 grams). Her sucking instinct is very strong now. She will have to wait to feed like a big girl until she graduates from CPAP. She is also getting much more coordinated. Syd will grab her CPAP and hold onto it. She also holds her pacifier while sucking on it.

The diuretics she is on cause her to loose some vitamins, minerals, and electrolytes. The Dr's continue to try and balance out her supplements. Her sodium has been cut back to try and keep her from retaining fluid.

Even though this balancing act with her supplements continues Sydney is very stable. She is gaining weight, and the instincts necessary for her to breath on her own are strong now. It wont be long now until she graduates from CPAP to the nasal cannula.

C.P.A.P.

Sydney was extubated and placed on continuous positive airway pressure (CPAP) on 1/16/2008. She was exactly 8 weeks old, 34 weeks corrected age. The CPAP looks like scuba gear. It has two prongs that are placed in the nose. A hat with a strap is used to help keep the hoses in place. This is attached to the ventalator. The major difference with CPAP is that it does not breath for her, it only applies a small amount of pressure to help keep her lungs open.

With her extubated Sydney can now be heard when she cries. Her vocal cords are sore though from the tube. She sounds horse and scratchy as she lets us know that she is unhappy. With the CPAP in her nose, they move the feeding (OG) tube to her mouth. She will need this until the CPAP is removed and she starts bottle feeding.

On the same day that Sydney went on the CPAP she also got a crib. Syd's nurses have continued to ween her heat in the isolette down. Eventually they turned it off completely and monitored her body temperature. Once they felt comfortable with her ability to maintain her temperature they made the switch.

The crib makes it much easier to change and interact with her. She can use her own sheets, and decorate it with toys and pictures. Soon she will have a bouncy seat to sit in and look around. She likes stimulation a lot now. She listens to you when you speak and likes to have her head rubbed.

Three Pounds!

Sydney weighed in at 3lbs 1oz (1390 grams) tonight. Her increased weight helps her maintain heat better. She can now be swaddled, and her isolette has been changed to help get her ready for a crib in room air.

With Sydney swaddled she can be held facing you, it is a lot easier to see her this way. She enjoys looking at her mother, and listening to her voice. Sydney still enjoys to kangaroo, so we try and switch up how we hold her.

Sydney is still on the ventilator. She is more stable, and requires less oxygen then she has in the past, but it is still a struggle for her. Within the next few weeks as she has more weight gain this will help her get stronger to be extubated to get on the next step CPAP.