All Dressed Up With Nowhere to Go

Braden started wearing clothes last night and he is already making fashion statements in the NICU. He has several preemie outfits (thank you Gammy and Aunt Kelly) and even though they swallow him, he looks darn cute and given he just hit 3 lbs he will hopefully grow into them. The doctors are allowing clothing and blanket swaddling because his IV was removed and he needs to start to learn how to regulate his body temperature, which can take weeks to master and is a critical check box before babies leave the NICU. They do this by putting them in clothes just as they would wear outside the isolette and weening the temperature inside down more and more until it is off and he is in room air temperature without the support of the warming isolette.

Below are a few pics where daddy tried to catch his best angle... as you can see Braden loves to try to pull his cannula out of his nose and frankly he had enough of the daddy paparazzi by the 10th picture :)

A Baby Divided

Many of you know my husband is an Aggie and I am a Longhorn... well so do the nurses, and sweet nurse Lilly made him a hat to reflect the family conflict.

Braden is doing well. Funny how poops become milestones you celebrate. I am loving being a mother and overwhelmed by how amazing Braden is and how much he changes each day. Crazy to think he was supposed to be cooking another 9 weeks!! Still a tiny guy at 2 pounds 14 ounces... but hopefully growing more each day.

Progress and Plateaus

Merry Christmas to everyone! We had a great day with family and then a wonderful night with Braden. I got to do an hour long hold with him and feel him squirm to find a comfortable position while I felt his body expand and collapse as he breathed against my chest.

Braden is doing well and we are in more of a plateau phase at this point. He is 31 weeks gestational age and 22 days old. He made such wonderful progress these first few weeks and at this point the milestones are much longer and slower to show results.

On the up side Braden started feeding through a tube last week and has made solid progress in terms of volume as he went from 1cc to 22cc every three hours. Feeding is a long process and this is a great start, even if he is spitting up :) He also had his PIC line removed which means he is off IV support in terms of nutrition and getting his support through this feeding tube which includes breast milk (yes I am on the every 3 hour pump schedule), and additional vitamins.

The doctors have reassured us this is all expected with preemies and we need to exercise patience as we hope to cross the next several milestones. These markers include Braden continuing to tolerate his feedings as volume increases, meaning he keeps them down; moving his oxygen support towards 21% (room air); and reducing the flow through his nasal cannula. They also want to see his red blood cell count come up and are attempting to do this via medication in order to avoid another blood transfusion.

Braden is a popular guy in the NICU and we love that the nurses fight to care for him. We are also so thankful and blessed that our ante partum nurses, maternal fetal specialist Dr. DeStefano, and OBGYN Dr. Neyman all continue to take an interest in Braden by stopping by to check in on him.

He is surrounded by love and we need every ounce, thank you and Happy Holidays!

3rd Time is the Charm and a Visit From Santa

Well I am being discharged from the hospital for the third time. Hopefully third time is the charm and this is the last time! I am leaving without a clear diagnosis of what exactly was the issue but hopefully they hit me with enough to get me through this recovery!


Baby Braden is doing well. He has had a good run these last few weeks and while he continues to do well, he has had a tough past few days in terms of progress, which is normal for preemies, but still hard to deal with as a parent. Another reminder that progress is a positive but this is a long road ahead and ups and downs will happen.


Braden also got a visit from Santa. While he was a 140 pound guy in a suit with a questionable choice of glasses, it made for a memorable picture.

Misbehaving

Misbehaving - an endearing term my doctor uses when she sees me these days. I went home last Friday on a strong, wipe your system out, antibiotic. Now I sit, back in the hospital, attempting to understand what on earth is happening to my body after spiking a 102 fever yesterday.

While there is no conclusive diagnoses yet, the hypothesis they are hoping to prove out would mean the antibiotics worked so well they wiped out too much of my good bacteria and I have a new infection in my intestines. They are running tests to confirm tonight and with treatment I could only be in here a few more days. If that is not the case there is likely still something looming from the original infection and treating it could be a little trickier and take a little longer.

Readmission to the hospital was much easier, I mean we are pros after all :) We initially went to ER and after being told it was a 4-6 hour wait we opted to go home and work with the doctors from there. My wonderful OB got me directly admitted to post partum which was a blessing since I spiked a fever again in the middle of the night, resulting in the start of another round of antibiotics.

This situation has become really frustrating and even a little scary as far as my health is concerned but the doctors are outstanding and absolutely committed to figuring things out. I guess I can stop claiming I never get sick :) I am also likely to remain in isolation during my stay here so no visitors and no trips to see Braden, which is the hardest part since all I think about is holding him.



More importantly though is how Braden continues to progress and continues to have his doctors and nurses in awe of how far he has come in the last 2 weeks. He is putting on weight as began feedings a few days ago and is taking to them well. It is amazing to see his features change each day. He also completed his medication to close the valve between his heart and lungs. While the valve improved significantly it is not completely closed and doctors hope it will improve over the next few weeks without medication.

Hopefully this will be a short stay and I can get home for the holidays. Thank you to everyone for your help and prayers. This journey continues to have some bumps but we are determined to get healthy and work towards bringing Braden home in a few months.

Clean Shaven for the Holidays

Julia was discharged from the hospital (again) on Friday evening with an antibiotic prescription that the infectious disease specialist referred to as a "carpet bomb for every bacteria in your body". It had to be special ordered by the pharmacy, if that gives you any idea. With the infection hopefully behind us now, Julia is feeling better but is still recovering from the surgery and 6 weeks of bed rest.

Braden has also made incredible progress. While he will likely be in the NICU well into February, we're constantly reminded of how far he's come from those first 48 hours. The doctors began feeding Braden yesterday, and he is responding well. Most of his nutrition is still coming intravenously, but he took 8mL of milk today as well through a feeding tube. The plan is to increase the volume of his feedings while weening him off the IV nutrition support. This will continue for several weeks until he is ready to suckle.

It's amazing to watch Braden grow and develop before our eyes. He has dusty blond hair and dark eyes (both susceptible to change, of course) and his facial features mature on literally a daily basis. With Braden's features changing and evolving so rapidly, we decided it was time for Brian to follow suit. After 6 weeks of "Growth for Braden", the mustache has served its purpose and long worn out its welcome. The support from the campaign has been amazing, and we'd like to document it for Braden to share with him as he gets older (and for future blackmail material!). Please email Brian before and after pics. Here are his:

Kangaroo Hold

Well if you are familiar with the title of the blog then you probably figured we got to hold Braden tonight for the first time. The kangaroo hold is skin on skin in order to improve the health of baby and the connection to the mother, often used in premature babies.

It is a moment I have thought about for a long time and one that lived up to all I expected. Brian and I both held him for a few moments and enjoyed watching him sleep. He looked so peaceful in our arms and even felt comfortable enough to let out a few toots :)



This moment was possible because Braden had some huge milestones in the past 2 days including coming off respirator support. This means he is breathing on his own with the support of an oxygen line should he get short of breath.

Braden was also having trouble with his tummy and they worried there could be anatomical complications. Turns out is it just reflux and hopefully can be cleared with adjusting his position or medicine.

Today certainly marks a big step in the right direction. Largest obstacle now is getting the valve between the heart and lungs to close, a common issue with preemies that can usually be remedied with ibuprofen, however if unsuccessful, surgery is still a possibility.

We continue to live hour by hour and day by day. There are still lots of tests and steps in the future to cross but today is the kind of day to smile, not cry, and we hope there are many more moving forward.

p.s. For those of you awaiting an update on the stache growth campaign... Brian will be blogging on that soon but get your pictures ready and send them our way if you have not already.

Daddy's Wishful Thinking

Braden with his daddy's Aggie ring. Don't worry all you Longhorns... while we do not have many clothes yet, Aunt Jen already got him a UT outfit. :)

Hospital Chaos

So I decided someone could easily write books about stays in the hospital. My most recent chapter would be about my re admittance.

As most of you heard I was home 6 hours when I spiked a fever and Brian and I rushed to the ER at 2 AM. Again I picked a really convenient time to get sick :). Upon arrival we witnessed an "exchange" between Labor and Delivery and ER about who should take me. ER finally gave and as my fever climbed they got me situated. Apparently once you are discharged your slate is wiped clean and you start over... totally illogical since I had been there 6 weeks and gone only 6 hours.

Then I got transferred to a very logical (sarcasm) place... the Cardio Pulmonary Specialty Unit. Needless to say my nurse looked at me as if I had 3 heads and was completely clueless as to how to take care of a postpartum patient. The experience was less than pleasant for the next 12 hours and after being forgotten for 5 hours, no hot water, and told if I expect to be nurtured I am in the wrong place... Brian raised hell and we got moved to postpartum... where we should have been all along!

Settled in here and doing fine. Found out I have a bacteria in my blood, don't everyone rush to visit now :). It is actually not contagious at all, just very dangerous to me for obvious reasons. I am being treated and hopefully re-released in a few days. Braden is doing well but the list of obstacles is always looming. Today he will have a few procedures including a spinal tap and threading an IV to a main artery. Not simple, but necessary to determine so things to give him the best care.

We are taking pictures today via disposable camera when they do some of the standard bathing and changing. Stay tuned for pictures later.

Julia Readmitted; Braden Getting Better

The last 24 hours have seemed like an eternity. Julia was discharged last night at around 7pm, and finally saw home after nearly 7 weeks in the hospital. We were met at the house by friends who brought an amazing steak dinner, and walked into a living room that had been decorated for Christmas by a group of our best friends. Unfortunately, the stay home was brief. Julia woke up at 1:30am with a fever and chills, and after talking to our doctor, we decided to head back to the hospital. The likely culprit: the same bacterial infection that had triggered labor 5 days before. There was some confusion at the hospital about whether we should go to Labor & Delivery or the ER, since she was no longer pregnant but likely still suffering from postpartum-related issues. They ultimately decided to send us to the ER and rolled us into triage. By 5am, we were admitted into a room in the general care area of the hospital. The confusion hasn't subsided, as the nurses here don't understand why a patient still recovering from a a complicated C Section is not in postpartum. We're just hoping the fever breaks soon, and that there are no further complications. Maybe the most challenging part is that NICU policy prevents parents from seeing their babies until you've been fever free for at least 24 hours. Julia is of course antsy to see Braden, and not being able to do so has been emotionally draining (as if we need that drain to be any bigger).

After Julia was settled into the room around 5am, Brian walked down to the NICU to check on Braden. There had not been much change from the night before. Five sleepless hours later, we got a call from the neonatologist. It's always nerve-racking when we first hear from Braden's doctor, but this time she had good news! Julia mentioned a few days ago on a previous blog post that Braden had been trying to pull of the "sunglasses" that are protecting his eyes from the bili lamp. Well, last night Braden decided to pull out the tube going from the ventilator to his lungs. I'm sure it set off all kinds of alarms, but to the nurse's surprise, Braden started to breath on his own! They closely monitored him for a while, and decided to keep the ventilator and nitric support off. He's now on a device called a Si-PAP, which gives him a little extra oxygen, but he's doing the breathing himself rather than relying on a machine. This is absolutely incredible considering that only 2 days ago the doctors said they expected Braden to be on the oscillation ventilator for another 2 weeks. He is truly a fighter like mom and dad, and all of our prayers are being heard and answered. Keep them coming.

Every Little Bit Counts

Today Braden is doing a little better. After heading south quickly in the first 24 hours, the doctors were finally able to stabilize him with a very aggressive combination of machine and medicine support. He has pulmonary hypertension (high blood pressure in his lungs) which prevents blood from reaching the lungs and carrying oxygen to the rest of his body. Since stabilizing him, the doctors have been gradually weening him off of both the machines and medicines. He still has a long way to go, and will likely require breathing assistance for several weeks. The doctors also have to manage the aggressive treatment with caution as many of the things they are doing could lead to permanent damage to Braden. While these developments move Braden in the right direction, doctors are quick to remind us that he has a long way to go and is still in very critical condition.

Braden is watched closely by a nurse assigned to him 1:1 where in addition to all the important medicines and machines she monitors, she is also usually adjusting Braden's hospital sunglasses that he tries to take off constantly, even though they are there to protect him from his lights. Braden got to meet Poppa Godley today which was a nice treat for him since his middle name, William, is in Poppa's honor. He is also showing an interest in our voices and touch. When they let us open the window for a few moments to talk to him, sometimes he reaches out his hand in the direction of our sound or attempts to grip a finger that they let us place, but not move, on top of his hand.

Brian and I have aged about 40 years in the past 3 days but are definitely feeling some relief in the fact the situation is moving in a better direction. We feel every prayer coming through as does Braden. We have faith our little guy is going to continue to fight and pull through these hurdles.

p.s. As many of you know, we have made life long friends with another patient and her husband. They hit 32 weeks today and we could not be more elated that they check off another milestone on their journey. She is set to deliver December 21st and we ask you to keep them in your thoughts and prayers along with Braden.

Long Road Ahead

Well chapter 1 shifted to chapter 2 quickly and it is apparent the road ahead is going to be just as long if not longer than the previous. It is another situation where being here awhile is actually an expected, and rather better scenario for Braden.

He is on day 2 in the NICU and in the doctors exact words he is in extremely critical condition with an uncertain outcome. This is obviously an extremely scary situation for us as parents and another reminder we are all in for a long journey. I wish I could sum up one issue with Braden, but at this point the list is quite extensive from high blood pressure, to lung development, to infection, etc. This is another hour by hour situation and getting through the next few days is critical, as will be the next several weeks.

We are so thankful again to the unconditional support from all of you. It is nothing short of priceless to get your emails, texts, and word-of-mouth well wishes. We have been running one of our dearest friends Jennifer "Whatever/Whenever" Brown around town helping us with things and many of you following the blog have been instrumental in helping us get through this, thank you.

This is the best way to stay tuned in to the progression of Braden. We will likely be here through the weekend before heading home early next week once Julia has fully recovered from surgery. Braden is taking things day by day and is certain to be here weeks if not months.

Love to you all and please keep the prayers coming.

Betts Family

Braden Needs Your Prayers

Braden William Betts was born this afternoon at 2:18pm. He was 2lbs 9oz and 14.7in long - quite a bit bigger than we had expected. Julia started showing signs of an infection this morning, and after various tests, the doctors decided to perform a C Section. It was the eve of gestational week 28 (12 weeks early).

Julia is recovering now in Post-Partum, and will be fine. Her temperature has already come down from this morning after antibiotics and other meds. After Braden was born, I was able to follow him and the doctors to the Neonatal ICU (NICU) while the doctors wrapped things up with mom. Braden has developed a case of neonatal respiratory distress syndrome (RDS). It's not uncommon for extremely premature babies like Braden, but he will likely be very sick for the next several days. He will be in the NICU for a minimum of 7 weeks.

He is in great hands with the doctors here, and will benefit greatly from all of the support and prayers that you all continue to offer. We are not yet ready for visitors, but will keep you updated here.

5 Weeks Here, 4 Weeks of 'Stache

Anybody remember the old '80s tv show "Magnum P.I."? Tom Selleck played a private investigator who lived a posh lifestyle in Hawaii, drove a red Ferrari, owned a Doberman Pinscher, and sported a mustache that drew the envy of the dudes and attention of the ladies. Well, at least I've got the Doberman and 'stache. Today marked 5 weeks since we checked into the hospital and the 4th week of "Growth for Braden". If Braden stays on course, I'll be asking for some mustache wax for Christmas!

We found out last week that Braden is already an Aggie fan. While his heartbeat was being monitored, Julia mentioned that he had not been as active as normal (the doctors like to see "accelerations" in the heart rate above baseline). Half-joking, I told Julia that I thought the Aggie War Hymn would get Braden excited and kicking. Sure enough, as I started singing "Hullaballoo, Caneck, Caneck" Braden's heart rate spiked from 145 to 175 and stayed there through "Saw Varsity's Horns Off". Certain it was a fluke, Julia tried to prove that Braden was just excited by the singing rather than the song itself. As she started "Texas Fight", Braden's heart rate dipped. Startled, Julia stopped singing and Braden's pulse came back up to normal.

Guess we'll have to paint the nursery maroon and white....