Wednesday, April 29, 2009

Feeder and Grower

It has been a pretty quiet week here at St. Joe's. They have officially labeled Callie as a "feeder and grower!" We used to look at the feeders and growers in envy, and now Callie is one of them!! It is just nice for her to have a less critical status!

Callie had a minor setback this week. After an eventful weekend with many changes, she just decided she had had enough. They had increased her feeding volume and she was trying to take them all by bottle and she was just getting really tired. So they have taken her back to every other feed by bottle and she is doing great with that. Her doctor says that he will try her again at every feed soon. But until then, they are happy because she is gaining weight and doing well with the bottles she takes.

Saturday, April 25, 2009

New Bed

We have exciting news...Callie is out of her isolette and into a bassinet!! They made the move yesterday morning and so far she has been able to maintain her body temperature and continue to gain weight. She is currently 3 1/2 lbs!


The other exciting news is that Callie is now eating all of her meals...no more gavage feeds through her NG tube!! They have increased the amount that she gets and have spread the feeds to every four hours. This is so that she can get more rest in between and start preparing her for home!


For the first time since Callie was born, her doctors and nurses are actually talking about her coming home! It will probably still be several weeks, but just the fact that they are discussing it is a dream come true!!

Thursday, April 23, 2009

Baby Steps

Callie has had a good week with lots of changes. She is now wearing clothes in her isolette! Since she is getting bigger and older, she is now able to maintain her body heat better, so they have decreased the temperature of her bed and they are dressing her. They say that if she keeps it up, she could be in a bassinet within a week!

Callie is also eating better. They have increased the size of her feeds to 25 cc's and she is now able to take two bottles a day and breastfeed once. She has now, on two occasions, drunk her entire bottle!


The other major change is that Callie is completely off oxygen support! When we got to the Hospital today, they had taken off her nasal cannula and she is completely breathing on her own! They said we should not be surprised if she has to go back on it at some point. It is just so amazing to see her face and chubby cheeks without so many things taped to it!


Monday, April 20, 2009

Back at St. Joe's


Thank you everyone for your prayers for today's journey back to St. Joe's. Callie is back safe and sound. It was hard to say goodbye to everyone at Johns Hopkins, they took such great care of our little Callie. But, at the same time, it is exciting to go back and see all of our old friends at St. Joe's. Plus, it is nice that they think she is well enough to make the transition. The immediate plan for Callie is to let her settle in for the next day or so and they will take it from there. We hope that each day she gets a little bit bigger and stronger!

Going back to St. Joe's

Callie has been cleared by everyone at Hopkins and will be transporting back to St. Joe's sometime this morning. We hope for a safe and uneventful transfer on this rainy day. We will update and again sometime today once she is settled back in. Please pray for her transport team for a safe journey across town.

Thursday, April 16, 2009

3 Pounds!!


Our little girl has reached 3 pounds!! She is getting bigger every day and acting hungrier with every meal. She has had some increased events (Bradys) over the last few days, so they gave her some more of Daddy's blood today and she already seems to be acting better. They are happy with her progress and are looking to transfer her sometime in the next few days.

Wednesday, April 15, 2009

Video

The past two days have been pretty uneventful, which is fine by us! So, we thought we would post a short video of Callie with her pacifier. She absolutely loves it! She continues to gain weight and they are steadily increasing her feeds. We get to feed her once a day now, which is a lot of fun! And they are talking again about a possible transfer to St. Joe's. We will let you know!


video

Sunday, April 12, 2009

Friday, April 10, 2009

My First Bottle!!

Callie had her first bottle today!! It was so exciting! Yesterday, they extubated her midday and she had a relatively rough afternoon with Bradys, but that is to be expected the day after surgery. They started her on small feeds last night and put her back on full feeds today. She rebounded faster than we could have hoped for! This afternoon they decided to try her sucking on a bottle. It is very common for preemies to have issues with sucking, swallowing and breathing all at once and can take them several attempts before they get the hang of it. Our little Callie surprised everyone again. She had no issues with the bottle at all. They were hoping she would be able to take 5 cc's from the bottle and when we checked it, she had drank 7 cc's and wanted to keep going! We are so proud of our little girl! At this point, they will feed her this way pretty infrequently because preemies use a lot of calories sucking and she needs as many as she can get to grow. But this is a great sign of things to come! Also, Callie has officially doubled her birth weight...she is now 2 pounds 11 ounces!

Wednesday, April 8, 2009

Another Successful Surgery!

Callie is back in her bed and resting comfortably. She had the resevior replaced this afternoon, evidently the first catheter was blocked from a clot of blood from her bleed when she was born. When the surgeon put the new one in he said the fluid was clear, which is a good sign. The first time the fluid was very saturated with blood so we are happy to hear the bleed has been absorbed. Thank you all for your prayers.

Tuesday, April 7, 2009

Today's Update

Well, unfortunately, we don't know much more than we did yesterday. We are being told that Callie is on "standby" for surgery tomorrow. Our understanding is that they will repeat a head ultrasound tomorrow morning and if it is still not draining, they will go ahead with the surgery. At this point we don't have any idea what time that will be, but from the feel of her head, she will be going to surgery at some point. We still haven't spoken with anyone in Neurosurgery today, but her Neonatologists are going to start preparing her for surgery at midnight. We did get some good news; the issue with her reservoir is not a new brain bleed, which was one of our initial concerns. From what we understand, it is either a blockage in the draining catheter or the device is just broken. We are just frustrated that she has to go through this again. Part of surgery is that she will have to be put back on the ventilator and her feeding will have to be stopped, which means she will probably lose a little weight. We do know that this surgery most likely necessary and we have faith she will come out of it stronger. We are just praying for a complication free surgery and a quick recovery for our Callie.

Here is a picture of our big girl from last night. She is now up to 2 pounds 9 ounces and she has moved up a diaper size to Preemie smalls!

Monday, April 6, 2009

Surgery on hold

After a scare this morning a repeat ultrasound showed that Callie's ventricles are not decompressed anymore. At the current time they are slightly larger than what they typically should be. That's the good news (they are not to far beyond normal), the bad news is that there still is something mechanically wrong with the reservoir and it needs to be fixed. Neuro will be watching her over the next 48hrs with repeat ultrasounds and most likely operate on Wednesday, maybe sooner if Callie becomes symptomatic. Thank you for all of your support and prayers, we will update again when we know more!

Surgery, again...

We found out this morning that Callie's reservoir is not working. We noticed that her head looked a little fuller yesterday and unfortunately, we were right. We spoke with Neurosurgery this morning and they will be operating on Callie sometime this afternoon. They are not sure what happpened or what is causing the device to malfunction, but they will figure that out when they are in the OR. We are trying to stay strong for Callie, and trust in God that she will come out of surgery stronger and healthier. Please keep Callie and her medical team in your prayers today.

Sunday, April 5, 2009

Big Yawn!

So Callie has had a rough couple of days. She started having an increased number of Bradys again. All of her blood work was good, so they now attribute her setback to reflux. She was having the majority of her episodes during her meals. So they are now extending her feed out over an hour and a half and that seems to be helping. They keep telling us that Bradys and Desats are all apart of being premature, but it doesn't make it any easier to watch her go through.



On a fun note, Callie rolled over on Friday. We had her on her back for her cares and she rolled herself over to her belly! She is such a strong little girl and she loves being on her belly!

Thursday, April 2, 2009

The Latest

So it has been a pretty quiet week here at Johns Hopkins. The only change is that they have increased Callie's feedings again based on her current size, 2 lb 5 oz!

They were actually thinking of transferring Callie back to St. Joe's this week, but we decided to hold of until she is a little more stable. We found out that the transfer ambulance does not have the type of nasal cannula that Callie is on, and she has not been fond of changes lately. The transfer is stressful on the babies to begin with, without having to switch oxygen support. Our hope is that she will be bigger and stronger next week and able to reduce her liter flow on the cannula. Then, hopefully, St. Joe's will still have a bed for Callie and we can transfer her back then.