I just wanted to send you a quick note & let you know that Brianna IS HOME!! We arrived at home about 8:00 Saturday night. She is doing very well & I think she really enjoyed sleeping in her own bed! She slept all night long – WAHOO! She got her first bath at home today and I think she liked it! Now is the time to come see her…she’s all clean! HA HA HA!
Thank you to all of you for saying prayers for us…looks like they did wonders. I’ll email again later.
I was very pleased with his response & forwardness. He also mentioned that a trip to
One of the side affects to the B6 is sleepiness & she could stop breathing...so because of that they are going to keep her until at least Saturday. They are giving her 3 days on the B6 to see if it makes any difference.
We did room-in with her last night (how great that was). She passed with flying colors, (so did mom & dad!).
Anyways, I will keep you posted. So now we are shooting for Saturday (which is still the end of the week, LOL!)
Thank you again for all of your prayers!
I have some GREAT news! Sorry that I haven't written in a few days, I was making sure that the 'good news' kept coming before getting my hopes up! Brianna hasn't had any apnea spells for over 48 hours. She had another MRI yesterday & the blood clot that was originally there, is COMPLETELY GONE! Her brain however has not grown in 3 weeks, so there is some concern there. They tried taking her off of the nasal cannula (oxygen) last night, but she didn’t do very well, so they put her back on at ½ the strength that is was on to see how she handles it.
We are still meeting with the pediatric neurologist from
The best news that I have to tell you at this point is --
If we can get her off of the canula, it looks as though we will be rooming in with Brianna in a room to ourselves Wed night & BRINGING HER HOME ON THURSDAY!!!! She will be coming home with an oxygen tank & a saturation monitor, so that we can monitor her better & provide oxygen when she needs it. She will not have to be on this 24/7, only when she isn’t being watched (sleeping).
Please continue to keep us in your prayers, as the next couple of days are going to be the most important. Stay stable Brianna so that we can bring you home!!
I will keep everyone posted!
Well, I’m not sure what to say. Brianna is tolerating breast milk just fine & is getting 60 cc’s every 3 hours thru the G-Tube. That’s the good news. The bad news…ever since the night of the 11th, she has been having apnea spells. She quits breathing & has to be stimulated to start breathing again. She had 8 in a half hour the first night. She went all day yesterday without any problems until last night. She started doing it again. This time, it has continued through the night & is still continuing now. The only thing that can be done about it at this point is play with the medication to get it to work right for her. They are going to increase the dose of Topomax & give it to her every 8 hours instead of every 12 & see what happens. The reality that we may have to face is that medication may not stop what is happening; only time will tell.
We are still waiting for
Dr Pollack’s opinion on what is happening:
The insult to the brain is not getting worse, but rather her brain reacting differently as she is getting older because she is trying to process more information now & her brain just isn’t handling it, therefore causing more seizures.
She was awake & alert while I was there this morning & was even talking to me. I just wish she could tell me what was going on. Dr Pollack even mentioned that as he was leaving. He was also showing many signs of sincere condolences. Basically telling me to be patient & that he is sorry for what is happening; without saying a word to me. It was comforting. The doctors have been reiterating a lot lately, that nothing that I did during pregnancy caused this. I guess they feel that I still might be blaming myself. I am past that now. I just wish I could step in & take this away from her.
Brianna is doing great! She has only had a drop in oxygen/heart rate ONCE since BEFORE surgery! It happened last night just after they inserted a new IV, so they are relating it to that. They started giving her medication through the G-tube last night. They have also taken her off of the Dilantin & resumed Topomax. They substituted the pain medication she was on with Tylenol & she is tolerating that just fine.
I spoke with Dr Davis last night & I asked when it looked like she might be able to come home if she tolerates feedings & doesn’t have any more drops in heart rate/oxygen…he said “we hope within 7-10 days.”
Dr Jolley (surgeon) was there when I got there this morning. He is still very pleased with the progress that she is making. They are starting her on Pedialite today. She will be fed every 3 hours & the first 4 feedings will be 20 cc’s, then they will give her 40 cc’s twice. If that goes well, they will start giving her breast milk & will gradually increase her feedings back up to 85 cc’s.
Kevin & I will also be meeting with Dr Brennan today or tomorrow, to discuss other possibilities that could be causing the seizures. Speaking of seizures, she didn’t have anything but mild twitching of her wrist when I was there this morning (since Topomax was started again!) We are pending the results of the Phenobarbital level check. Want to make sure that doesn’t drop again.
The only disturbing thing this morning, was there was nowhere else to put her IV (hands & feet have been over-poked!) So they had to shave part of her head & put a short-perk there L. She won’t be getting any medication through the IV so it shouldn’t cause any bruising like it did last time. They did however save the hair for me to put in her baby book! I joked with the nurses & said they were just trying to make her look more like her daddy!
I don't have much news to give everyone right now (I guess that's a good thing!) Brianna is doing very well. She is VERY stable. She hasn't had any breathing or heart rate problems since before surgery. She is completely breathing on her own & she no longer has any tube in her nose!
I just called the hospital & she is wide eyed & being very social. I am going to take in a mobile for her to look at. I have one of those butterfly developmental things that is attached to the side of the crib already there...but she can only look at that when she is on her side & she loves it. Don't know why I didn't think of bringing in the mobile earlier. DUH!
Anyways...they are keeping up on her pain medication now & she looks MUCH better.
I must say...I got a feeling yesterday afternoon before seeing Brianna last night. Must be my maternal instincts. I feel like she is going to pull through all of this & be just fine. I haven't felt this way the entire time...so it has to mean something. When I saw her last night, my feelings proved to be true because she looked great.
Keep those prayers coming...I believe they are working!
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.
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.
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.
Spoke with Dr Jacob today, we have received some of the results from the lab work they sent to
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.
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.
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
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.
She weighed in at 7 lbs 6.5 oz last night! Growing like a weed!
