Day 33

Surgery went very well. The surgeon didn’t find anything that he didn’t already know about (thank goodness). It started right on time & she was back in NICU 2 hours later on her way to recovery. She had no problems tolerating the anesthesia either. It was quite upsetting to see her at first; in fact I had to sit down. She was paler than usual & looked to be in pain. That was heartbreaking. They gave her some paid medication, but you can tell that she is uncomfortable when the paid meds start to wear off.

Today her color was much better. The surgeon was there checking up on her when I got there. He is very pleased with her recovery so far. Unfortunately she isn’t able to have the Topomax medication for another 48 hours because it’s not an IV & she can’t have anything going into her stomach. I sure hope her seizures don’t get out of control again during this time.

She opened her eyes and looked at me for a while. She looked sad to me. I really wanted to pick her up & hold her. Boo hoo. Anyways, had a little release last night & cried my eyes out while visiting my Mom & Dad. That made me feel a lot better. My mom said that I needed to quit nursing & go get really drunk!!! Boy I would feel a lot better then!

Well I think that’s all the news to tell. Thanks for all of your support through this trying time for us. It really means a lot to us.

Day 32

Today is surgery day. The results of the upper GI came back yesterday & it's a good thing we did that. Come to find out a 1/3 of her stomach is in her chest (hyatal hernia (spelling). This could be contributing to her breathing issues & eating issues. Here's hoping anyways. Doctors say it's a good chance that's what has been causing it, but because of her central nervous system issues, that may still cause it.

So the surgeon will be fixing that, inserting a G-Tube, & fixing the valve to the esophagus because it tends to be weak so might as well fix it while he is in there.

Kevin & I are getting pretty impatient. We are definitely starting to lose a little strength. Hopefully it will pass & we will stay strong. We are pretty irritable right now. Luckily we aren't venting AT one another, but rather WITH one another. That's all we need right now, is being at each other's throats!
It's getting tiring that's for sure. Especially when there is more bad news to be told.

We have however received all pending test results & they have all come back negative. YAY!! I am grateful for that, but at the same time, I just wish we had some answers.

Say some extra prayers today for all of us. Her surgery is at 3:00 pm EST. I'll let you know how things went.

Day 30

When I got to the hospital this morning, there was a bit of bad news to be told. Brianna started having seizures again. She had had one just before 8:00. And had a drop in heart rate about 8:10 when I was there. Spoke with Dr Davis, the last Phenobarbital check was the 30th, they are going to run another one today. He’s not so sure they were really seizures as she is very calm now. Going to hold off assuming that it’s because of them stopping Dilantin, as its too soon for the medication to have worn off completely. I’m just getting back to work at 10:30 & she didn’t show any signs of seizures from 8:10-10:20, so that is a good sign. He also said that if all goes well with the surgery & she continues to be stable (aside from this morning) he suspects she will be able to come home within a week and a half or so.

Dr Jolley came & spoke with Kevin & I about the G-Tube. He agrees with the neonatologists in that her feeding issue is probably long term (months to a year at least) & that the G-Tube is really the best thing for her. He also said that sometimes having the tube through the nose can be a factor in her not swallowing, because the muscle in the esophagus contracts & can cause issues.

They are going to do an Upper GI at 11:00 this morning. This puts fluid down her throat & they take x-ray pictures as it goes down. This will show them if there are other issues that may be causing her not to suck/swallow, like a blockage in the esophagus. He was very informative & we have a meeting scheduled for Noon tomorrow to discuss in detail what her needs are & what side affects may pertain directly to her because of her condition.

If everything checks out ok she will have the surgery Thursday morning. The surgery is considered major & she will be under general anesthesia. The surgery takes about 1 ½ to 2 hours & then she will spend 2 hours in surgery recovery before going back to NICU.

We did not attempt feedings this morning because of the Upper GI test. She will not be fed until after the test.

Day 29

Spoke with Dr Jacob today, we have received some of the results from the lab work they sent to Seattle 3 weeks ago & they are negative! YAY!!! He is going to call Seattle again today to find out if they have looked at the Video EEG. He also took her off of the Dilantin this morning & increased the 3rd medication (Topomax). They are getting more comfortable that they have her seizures under control & Dilantin isn’t a take home drug, so they want to see if Topomax will fill in for it. If that goes well than they will remove the IV. We are really getting closer to discharge. I just hope we don’t have another setback. Dr Jacob also spoke with Dr Jolley (the surgeon) to set up a time for us to meet with him & discuss the G-Tube.

Day 28

Today is her 4-week birthday. My Mom & Dad came to the hospital this morning to take some ‘birthday’ pictures. To see them go to http://www.camalaska.com/brianna/brianna/htm. She is so incredibly cute! Not much success on her feedings today, but that’s ok. Everyday we are one step closer to bringing her home.

Day 27

Of the 83 cc’s she is getting, Brianna took 45 cc’s in 30 min at her 4 am feeding! We were all so excited! Unfortunately she hasn’t been very consistent. Her 8 am feeding was only 20 cc’s. But it’s not always the amount that she takes, it’s the effort.

The nurse discussed getting a gastrostomy tube put in her stomach. She feels that it will be a while before Brianna is taking full feedings on her own. We are getting closer to her coming home & having the surgery will cause her to stay in the hospital for another week. So the sooner that we decide to do it we will be one step ahead when she is ready to come home. After seeing her progress quite a bit this weekend I was a little hesitant on doing the surgery, but since she isn’t consistent, it just might be the right thing to do. Then I can work on her feedings on her own schedule (when she is hungry) rather than their schedule.

Clipped her fingernails for the first time.

Day 26

Had a little progress this am feeding her. She seemed to be swallowing a little better & wasn't so congested. Only took about 8-9 cc's though. Turns out there was some irritation, when they checked to make sure all of her food was digested before her 8:00 pm feeding, they pulled old blood out of her tummy. We are guessing that happened when they put the catheter down her throat to suction out some of the mucus on Wednesday.

It also dawned on me last night, that what she has is probably a cold! I had one last week, started about Tues/Wed, Kevin started showing signs of the cold about the same time Brianna started having congestion. So that's probably all it is! And since today was better in the amount of congestion, she may be getting better! Here's hoping anyways.

Talked with Prick Doctor last night. He spoke with Seattle about her MRI & EEG yesterday afternoon. They aren't so sure that there is a good amount of blood flowing through the blood clot that she has in her brain, they (Seattle) are going to look at it a little closer. They also agreed that her brain is smaller than normal. I asked if the brain could catch up to her, Dr Jacob said if her head continues to grow along with her body than that is a very good sign. It had grown .5 cm within a week & he wants to wait & see what it measures next week. If it grows .5 cm every week, then he would be very happy about it. So that is what we are striving for!

They (Seattle) have only looked at the EEG prior to the Video EEG (also prior to the seizures kicking in full blown again). They didn't see any seizure like activity on that one (nor did the folks here). It wasn't until the Video EEG, that the movements were determined to be seizures. Seattle hasn't taken a look at it yet, hopefully they will today.

She weighed in at 7 lbs 6.5 oz last night! Growing like a weed!