Busy Daddy

I have had a very very busy week. One of my customers needed help and I have been so busy that sleep became a priority and I am working on my day off. On top of that I also have poision ivy and it is very angry (big bubbles). But enough about me....it is all about Brinson!

Brinson has been doing ok. Her followup on her heart showed much improvement (no hear thickening and the ASD is smaller) Awesome!!!! Brin also is is just over 5 1/2 lbs. Unfortunately I was unable to visit with my daughter yesterday but Mommy, Meme and Nana did.

Lately Brin has developed a viral infection (maybe) that has caused her core temperature to be elevated (last night and today) up to as high as 101+ and she has red splotchy skin. The have drawn blood and taken urine...based on how she acted they think it could be a urinary infection. She is on antibiotics and is acting better than early this morning.

Mommy and Meme are up there today and I will follow after my 5pm conference call.

On a very sad note, my Uncle Jack passed away yesterday. He was in a motorcycle crash at a motor speedway. He loved motorcycles (racing, riding, buying, fixing...etc). We are so very sad and we will miss you Uncle JACK! Our thoughts and prayers are with Aunt Pat and my cousins Kathy & Jennifer.

Update on tests...

The CT was normal. The Neurologist should see her tonight and do an overall assessment.

The EKG was done, but no results yet. The echo will be done tomorrow.

The gut does show some improvement meaning the contrast on the xray shows less in the small intestines; like we have movement. Still not enough improvement to feed her and we still have to wait 3 weeks if surgery becomes necessary.

Otherwise Brinson is humming right along....her oxygen requirements have been as low as 28% today. At 400pm she was sitting at 31%.

Brinson's new digs!

Hey I am over here! (see the little dot in the middle, that is Brinson)

There she is!

Hey, Turn out those lights!No Grin!

Grin!

More information....

The gut Dr came by to see Brinson and they have decided to wait 3 weeks. No food during this time if she does not pass the contrast. The contrast is given in liquid form during the upper GI so you can see the intestines on an x-ray.

It is possible the stricture can stretch if the stricture is where the operation was.

If it does stretch and she passes all the contrast they will repeat the study to ensure no surgery is necessary.

Also the EEG came back and it was normal......YEAH!!!!

BTW Brinson is now in a crib....YEAH!!!!

Lunch update

I was able to stop by at lunch at see Brinson. She was sleeping....which is good. Dr. Hernadez was at the bedside and was able to give me a full update.

The good news first:
- Eye test had the same results. Still watching the left eye, but no changes.
- Her upper GI allowed something in her system to start moving because she had 3 diapers yesterday evening.

The not so good news:
- Even though we have movement, it is not enough and they believe she has a stricture (narrowing of the intestines). The narrowing will need to be corrected with surgery. Dr. Minkes will see Brin today and let us know how long (could be up to 8 weeks from June 3rd, previous procedure) before we can do a surgery.

They have completed the EEG, but no results yet...except that her hair is curly because it has some funky wax in it from the electrodes they put on her head. The CT of her head is at 2pm. The neurologist will come tomorrow and review all above test results and let us know his thoughts.

Brin will also have a follow up on her heart with an echo and EKG.

Big day

Brinson is having a big day today. She is getting an Upper GI test to determine if she has a stricture or blockage in her intestines and then a neuro consult.

In ~36hours prior to 1030pm last night she had not had a major episode....which is very good. The frequency seems to be slowing down. Also Brin continues to make good progress on her oxygen requirements (only 44% last night)

My take on this is, as soon as the belly is fixed and all the extra fluid is removed then the episodes will go away and we will get back on track.

Look at those eyes! At had been quite some time since we have seen Brinson this awake.

Daddy is talking to me

Mommy is talking to me...High Five!

I was able to capture this moment where Mommy and Daughter are looking at each other. Very cool!

Baby Shower

Aunt KD and Nana put on a fabulous baby shower for Mommy. There were a number of friends and family in attendance including TBFC (The Brinson Fan Club) and several mother's that Mommy met in the NICU.

The Brinson Fan Club
They had custom t-shirts on with "TBFC" on the front and web address of the blog on the back.
Thanks guys, all the thoughts and prayers are much appreciated. They also gave Mommy and Daddy shirts.
Zachary's Mom (Kim)

Mommy and Meme playing the diaper/candy game

Mom's left to right, top row first
Kim (Zachary), Lisa (Brinson), Nancy (James)
Jessica (Aubrey), Laura (Noah)

Look at the tasty cake

What a spread!

Hi Grammy!

**Also, Brinson got a mystery gift sent to the house with no name. Anyone know who the Deco Bouncer is from?**

Much better day

Yesterday was a much better day. Brinson had less episodes and no bagging lately. She has less oxygen requirements and more reserves.

They started feeding her yesterday, but I think they are still being cautious because she still has no significant poop. I just got off the phone while doing this blog and they have now stopped the feeding today because her belly is getting bigger. So they are going to do an upper GI study on Monday.

She is still having a lot of congestion and they are not sure what is causing that. They are hoping the increase in the lasix will correct that.

The ENT saw her today and she has a floppy airway, I am NOT clear on how severe it is. This can cause in issue with breathing and eating. While being scoped today to look at her airway, they discovered that her left vocal cord is not firing which could be a long term side effect of PDA surgery. Also her cords were pretty inflamed so they think her reflux is pretty severe....which is not unusual for preemies and can contribute to the episodes that we have been seeing.

Brinson is also going to see a neurologist on Monday or Tuesday because there is a possibility that the episodes are being caused by a brain issue.

Today Mommy and Daddy took a break. I stayed around the house and fixed the rocking chair Mommy got for Mother's day (the chair I was rocked in as a baby, my father gave to my mother for her first mother's day) Thanks Sami (Noah's Father) for all the help with the chair.

Mommy is taking a break at her baby shower and I am sure she is having a ton of fun.

Enjoy the pictures and video, I know we did!

Proud Daddy!

I am just surprised how awake she is.. Barbara is trying to get her bedding straight. If you are wondering about the headband ...it was a hat and we cut the top off because Brin gets hot.
This is first time we see her track something with her eyes....pretty cool

Narrowing down the possibilities...

The bad news is Brinson is still having to be stimulated for not breathing. But the good news is since the pulmonalogist and cardiologist consults they believe she does not have a serious heart problem ie no cor pulmonale. YEAH....what a relief. She still has ASD and we might have to deal with that....but not now.

They are thinking pulmonary hypertension and airway issue. An Ear Nose and throat guy is coming in for a consult today or tomorrow.

Her oxygen requirements are still high because of the unknown problem. They think her gut is ok, so they are going to try some formula on Monday (we think)

So we are narrowing down the possibilities.

Daddy has the day off today...yeah! That means more time with Brinson.

Mommy had Cooper next to Brinson yesterday while she held her and she felt so much better afterwards.

Let me tell you it is scary listening to all the bad possibilities and then feel so paralyzed....not being to help our daughter.

Let's just say it has been a long week and we are glad things seem to be moving in a better direction (forward and not stalemated)

Thanks again for all the nice comments, prayers and thoughts....please keep them coming and I will continue pictures and videos of our little princess, Brinson!

Cheeks!

Look at those cheeks, I guess the extra weight has to go somewhere. Brinson now weighs 5lbs 6.1oz. We are still waiting for the poop.

Yesterday after suctioning her and meeting with the doctor they decided on the hudson prongs would give her better flow.

They bundled her up so she would not pull off her new head rig (hudson)

She had a much better night and had no "not breathing episodes" from 1130a to 745am. They are not sure what is causing these episodes. She is de-sating regularly (from 100 down to 70's and back up), but seems to recover on her own. She still has a lot of congestion and that is definitely a factor.

Her belly is still quite bloated, but the nurse finds it better today than yesterday (maybe some gas has been relieved)

They did the EKG this morning, but it has yet to be read. We are anxious to find out how her cor pulmonale and ASD is doing? They think the nitric does not really seem to be helping, so maybe her ASD is causing all of this.