Elliott Hampton

Elliott Hampton
Elliott Hampton

Thursday, June 30, 2011

'twas the night before surgery

As many if you know, this has been a particularly arduous day. I know many are very worried, and I wish I could say something to assuage your concerns. Unfortunately, I cannot. I can only say that Elliott is a fighter. He is presently stable, as the ventilator is breathing for him. He is sedated, his pain is managed.

He has a (new to him) night nurse, which, frankly, makes us uneasy. Surely she is good at her job, or she wouldn't be at TCH.

We will be there in the morning to visit with him before surgery. Surgery will last approximately 8 hours. It is a VERY complex set of procedures. The surgeon actually rated this surgery as a 9 on a 10 point scale of complexity. The positive news is that at TCH, 95% of these surgeries go well without any major complications. There is no reason to believe that there will be any complications. As I mentioned earlier, Elliott is presently stable. His blood work has all returned with good results. His saturations are good. His brain MRI was normal. These are all good prognostic indicators. Let's cling to these facts.

Tomorrow will be the longest day, and the next week will be extraordinarily taxing, as we await his recovery step by step. Please keep our sweet Elliott in your thoughts and prayers as he embarks on a battle of monumental proportions.

I cannot thank you enough for your words of support, and your thoughts and prayers. We are truly fortunate to have such an amazing support network of people in town, and out of town. We relish each text, comment, and voicemail, although we don't often reply. Please keep them coming.


- Posted using BlogPress from my iPhone

Guess How Much We Love You

Dearest Elliott,

Daddy and I stopped by to tuck you in and read a bedtime story. We chose "Guess How Much I Love You" because that is a game your daddy and I have played with each other for years and we look forward to playing it with you very soon, little nutbrown hare. We didn't want to bother you too much, since you need your rest. We held your perfect little toes, kissed your sweet little knees, let our fingertips feel your precious chest rise and fall with each breath, stroked the bridge of your adorable nose, and rubbed your your soft little forehead.

Sleep well, little man and gather your strength for tomorrow's adventure. We will be there by 6am to see you before they whisk you away at 7. One of your surgeon's nurses will update us every hour on the progress of the adventure. Dr. M believes you will complete your adventure in about 8 hours. Daddy and I will be there to shower you with toe hugs and knee kisses just as soon as we are cleared to do so!

So goodnight, my love. Sleep tight. Don't let the bed bugs bite. And remember: we love you to the moon...and back.

- Posted using BlogPress from my iPhone

Just breathe

You gave us quite a scare this morning. Your superhero nurse tells us that you are resting comfortably with sedation. You have a tube to help you breathe, so you don't have to worry about expending energy on that. You also have a tube that goes down to your tummy to let out any air that got in there when they were bagging you. Don't fret, the tubes will be gone after one more little procedure. Daddy, Nana, Peapaw, Aunt Amanda and I are here with you, and Grandma Sharon is on her way. You have so many people who love you, can't wait to meet you and who pray for your speedy recovery. In case you are wondering how much we love you, we love you to the moon and back.

- Posted using BlogPress from my iPhone

A new brand of fear

Elliott had a brain MRI with a light dose of anesthesia this morning. When he returned from the MRI, he was resting comfortably. He cuddled with his momma, and his daddy took lots of pictures of his sweet face. Then the respiratory rate alarm sounded apnea and instantly, James (his superhero nurse) calmly asked me to lay him in bed and step outside to call another nurse. Dr. R (cardiologist) and Dr. S (Fellow) responded and immediately began bagging (like a manual ventilator with a face mask) Elliott. I wish I could say it was all a blur. It is very clear. Mark and I stepped to the corner of the room as it filled with staff to keep Elliott breathing. They collected a heel prick sample for blood gases, put him on oxygen, and Dr. R continued bagging, while Dr. S stimulated Elliott's extremities. Finally, Elliott began to move his arms and feet. I thought, "Oh good, now he will be awake enough to breathe on his own!". But, no. Dr. R ordered Elliott be intubated and the crash cart immediately appeared. We were ushered to wait in the chairs by elevators until the intubation was complete.

So we sat. We talked about taking Elliott to the zoo in the BabyBjorn, for bike rides in a tandem bike trailer, for walks around the pond in Northampton. Each time we heard the heavy CVICU doors swing open, we shifted to the edges of our seats, sighing with anxiety when the person walking through them was not our messenger.

Finally, a nurse came out and said the intubation went well and that we could rejoin our baby after the X-ray (to verify the tube placement) was completed.

- Posted using BlogPress from my iPhone

One week old today!

Elliott had a good night. Since he was scheduled NPO after midnight, his nurse fed him a bit extra- he ate 18cc of breast milk!

This morning we signed forms granting consent to anesthesia during a brain MRI. We were able to spend about 30 minutes with Elliott before they wheeled him away.

Here are a few pics:

Posted using BlogPress from my iPhone

Wednesday, June 29, 2011

It's official- surgery on Friday, July 1st

Pretty exhausting day. This will be short. I'll add pics from today tomorrow.

We have to be at TCH at 630am tomorrow to consent to anesthesia for a brain MRI. Hopefully, we will meet with the surgeon sometime in the morning. I will have details of surgical plan afterwards. We have to be at TCH at 6am on Friday for Elliott's surgery.

I cannot begin to quantify our fear and anxiety. I can say that we have one amazing strong little boy and we are certain he will prevail through this trial.

So, here's a funny story: the CVICU bed alone is $6600/ day. The hospital bill for the past 5 days (today won't be added until midnight) is $75,000.00-our sweet man is worth every penny. I am so grateful that we have insurance. Any bets on how much the surgery will cost? It's almost comical that we complain about affording the astronomical parking rates at the hospital!

Thank you all for your words of support and encouragement, they really help us keep our strength. Much love to each of you.

- Posted using BlogPress from my iPhone

Pictures of the Day

Here are a few pics taken on Elliott's 6th day in the world.

- Posted using BlogPress from my iPhone

Tentatively scheduled for surgery on Friday

We just spoke with Dr. Samuel. She stated that the tentative plan is for Elliott's surgery to be scheduled for this Friday, July 1st. We should hear from the OR scheduling nurse and surgeons within the next 24 hours. We will let you know as soon as we receive further confirmation.

- Posted using BlogPress from my iPhone

Morning Report

Elliott had a good night. Bilirubin is at 13, but they are comfortable with that, so no more lights yet. No firm surgery date yet. Will update after speaking to docs. In other news, I took a shower by myself!

- Posted using BlogPress from my iPhone

Tuesday, June 28, 2011

Surgery likely next week

As the headline states, the latest news is that Elliott's surgery will likely be next week. There are several reasons for this decision. First, Elliott is presently stable. His O2 saturations are good both pre and post ductal. This means his organs are receiving adequate blood flow. Secondly, this gives him additional time to grow. He was 5 lbs 1.7 oz at birth. Babies typically lose a bit of weight after birth. At his weigh in lay shift, he weighed right at 5 lbs. Not bad for a kiddo on primarily IV nutrition. Thirdly, stronger pre-op= stronger post-op= better outcome. I am 100% in favor of doing whatever we can to tweak that formula and increase his outcome.

We plan to be at hospital early in the morning to catch the docs during rounds.

Such a stylish daddy!

- Posted using BlogPress from my iPhone

Brief update: sunbathing over

Bilirubin levels down to 12. He's finished sunbathing for now. They will keep checking to be sure. Nurse said the OR scheduling nurse is working on getting surgery scheduled. Will keep you posted. We just ran in to Dr. Altman in elevator. She said that she is pretty sure Dr. Mackenzie will be the surgeon. He is the surgeon that I met with previously. No info on date yet. Will let you know as soon as we hear something. Likely will be at hospital this evening. Left to run to pick some things up at Target and maybe take a nap,then headed back

- Posted using BlogPress from my iPhone

A few more pics

I'm hungry! Do I have to just get it myself?

Last night's tropical excursion

See Cortny, your gift is so handy when pumping! I LOVE it!

Check out my sweet hat and iron on labels!

Side sleeping. It feels good to change positions. Mr. Owl keeps a very close watch over his dear friend, Elliott. Monkey is there for muscle in case Elliott runs into any trouble.

Don't mind my droopy eyes, I'm still taking the "good stuff" despite my attempt to ween myself off of it.

Look at that proud daddy! He is taking such good care of little Elliott and me.

Posted using BlogPress from my iPhone

Bilirubin levels within range!

We are elated to see Elliott's sun tanning session is over. They removed the lights this morning and he is a happy baby now that he is snugly swaddled.

Posted using BlogPress from my iPhone

Daddy's 1st Diaper change

Mark is pretty proud of the fact that his very 1st diaper change was on his very 1st little boy. He says, "I saved myself for him!" I love my husband.

Enjoy the photographic retrospective.

Warning: does contain graphic images.

"Okay, let's do this. Little man, please try not to pee on me. If you do, it's okay."

Mark is receiving step by step instruction from Elliott's girlfriend, Michelle (she's his awesome day nurse).

Prep work.

Opening the special present...

"Am I doing this right?" Mark is a very conscientious student.

"This stuff really sticks to his skin!"

Hmmm... This may be blackmail material later...

"That's it? I always thought diaper changing was so complicated!"

Posted using BlogPress from my iPhone

Monday, June 27, 2011

No news on surgery date

Today was a busy day. After a good night sleep at Nana and Peapaw's (dad, I'm calling you that until Elliott decides on a name), Mark and I headed to the hospital.
We talked to geneticist first. Dr.U officially diagnosed Elliott as a beautiful baby and said he exhibits no physical indications of genetic anomaly. However, standard protocol with CHD babies is to run a micro- array analysis. Baylor has the best genetics lab in the country, possibly the world. Their micro-array analysis is the most advanced in the world. If there are genetic additions or deletions, they will identify them. There is no cause for concern other than this is standard protocol with CHD babies. The test was sent a few days ago and we should have results in a few weeks. Dermatology came in next and agreed that spot on head is birth trauma. Thank you! We spoke with another Cardiologist who reiterated the same info as other cards. Also, despite amazing leaps in feeding volumes, they decided to pull back to 6-8 cc per 3 hours and reintroduce TPN (IV nutrition). The reason for this is related to his "blue blood" heart condition. They are concerned that he may have less than ideal circulation of red blood in his intestines. If they are taxed too much, it can result in a more serious complication. So we are happy about this change. Thanks to my hard work, he has been enjoying breast milk exclusively today! Renal also consulted today. In concordance with his Nana and Grandma Sharon's assessment, his bilirubin levels were a tad high (14 is reference and they were 16). So, he is now sunbathing comfortably.

He was placed under the lights at 4pm and by 7pm his color was much better! They drew labs just before we left tonight, so I will call shortly for the results.

Apologies for leaving you all hanging. Mark and I are so touched by Elliott's strong following, and grateful for all of you thoughts and prayers. I will likely start a routine of updating the blog at night, unless I have a few minutes in the day to do a quick short post.

Love to you all!

Posted using BlogPress from my iPhone

Sunday, June 26, 2011

I'm home

Today was bittersweet. I think I will write a +/- list.

+ I was discharged from the hospital. Evidently, I'm medically stable. It's really amazing to think that after only three days I had staples removed and strips of tape are enough to keep my internal organs from escaping. I know they have stitches on the inner layer. Still, it's amazing that the human body is capable of healing so quickly. Oh! Since I haven't had a chance to finish the birth story, I am compelled to brag that I actually experienced the best of both worlds- full dilation and effacement, as well as 2 hours of pushing while the doctor attempted to rotate Elliott from sideways presentation. More on this later.

- I was discharged today. This means that I am no longer a three minute walk from my sweet boy. This is hitting Mark and I really hard today. I know he is well taken care of and We are doing all we can for him by bringing him to the best doctors, living separately so Mark can maintain his job and insurance, and pumping milk. Leaving him today was awful. Leaving him is always awful, but today was particularly painful.

+ Elliott had several successful feedings. He started the day off with 14cc and ended up with 25cc! I am so proud of him! Included in that count is 0.5cc of fresh breast milk! He is learning so quickly!

+ Breast milk is coming in! First harvest was 0.5 cc, 2nd was 1.65 cc and the third was 2.1 cc!

Okay, that was therapeutic. The + entries clearly outnumber the - entries.

Tomorrow is a big day. Elliott's case goes before all of the surgeons and decisions regarding his surgery will be made. I hope sleep is easily found tonight.

- Posted using BlogPress from my iPhone

Welcome to the land of milk and honey

Elliott ate another 6 cc of formula last night and 14 cc this morning! His goal is 18 cc every 3 hours. He's on his way!

In other news, his next feeding will include a special treat: breastmilk! I'm elated!

Last night, Elliott was content after having eaten a big 6cc snack! He awoke voraciously hungry thus morning and ate 14cc of formula! He has a special surprise for his next meal- 0.5cc of breast milk!

A very proud daddy and husband brandishing a syringe of liquid gold!

Posted using BlogPress from my iPhone

Saturday, June 25, 2011

The latest news

I will do my best to complete this update, and will work on catching you up on details later.

I feel comfortable sharing Elliott's latest condition now that we have met with 2 cardiologists on separate occasions with similar opinions.

Here we go. I will do this in list form. Refer back to the links in previous posts for more detailed info on the specific defects.

1. Hypoplastic Tricuspid Valve- not as severe as thought when dx (diagnosed) prenatally. New Dx: tricuspid stenosis- mild. This is good news.

2. Hypoplastic Right Ventricle- not as severe as thought when dx prenatally. New Dx: right ventricle is mildly small. This is excellent news! This means that Elliott may be able to have full function of both chambers! 

3. Transposition of the Great Arteries (TGA)- this dx was confirmed. Essentially he has a closed loop of oxygenated blood from and to the lungs, and a closed loop of oxygen poor blood from and to the body. This issue will be addressed during open heart surgery (ohs) next week. (http://www.mayoclinic.com/health/transposition-of-the-great-arteries/DS00733 )

4. Coarctation of the Aorta- this dx was also confirmed. This is the most critical feature to correct. This will also be addressed in ohs next week. (http://www.mayoclinic.com/health/coarctation-of-the-aorta/DS00616 )

5. Atrial Septal Defects (ASD) and Ventricular Septal Defects (VSD)- Elliott has several holes between the atria and ventricles of the heart. Currently, those defects are ones to be thankful for and are related to his amazing ability to keep his O2 stats up. These will also be addressed during next week's ohs. (ASD- http://www.mayoclinic.com/health/atrial-septal-defect/DS00628  VSD- http://www.mayoclinic.com/health/ventricular-septal-defect/DS00614 )

Elliott's case will be presented during the Cardio conference on Monday and a more specific plan will be devised.

Yesterday was a very long day for our favorite little guy. The infectious disease team was dispatched to take a look at a spot on his head. I had understood the "spot" was a hematoma and blister from birthing (I pushed him for two hours!). Anyway, the physician (Dr. Lucy Marquez, a fellow class of 1997 Klein Oak grad), collected samples from Elliott's scalp, mouth, bum, eyes, ears, and spine. Yes, my little boy had a spinal tap. He was so much tougher than his momma! Next, he had a lung x-ray, and ultrasounds of his kidneys, lungs and skull. I was able to caress his scalp and he gripped my finger tightly during the ultrasounds. His least favorite part was when the sonographer used a rough terrycloth wash rag to wipe the gel off his skin. He was pretty angry that she didn't think to use a soft cloth on his tender skin. Good thing I was there to take over with a soft kleenex. Then, the vascular team came along to put in a PICC (peripherally inserted central catheter) line to allow better access for blood draws, medications, etc. We left as the vascular team was setting up (about 830 pm). Elliott's CVICU nurse called us with updates every hour, and we were finally able to go back in to see him at 130 am this morning. He was resting comfortably and responsive to our touch and coos.

- Posted using BlogPress from my iPhone

Our 1st night

So much has happened in the past few... I've lost track of time. Let's say so much has happened since entering the hospital. I promise there is a blog post in the very near future. I am presently lacking the presence of mind to scribe a proper account of the past week, and current status. However, I will attempt a brief synopsis of the latest.

Oh here is dr. Ivey. I can hear him in the hall.

- Posted using BlogPress from my iPhone

Wednesday, June 22, 2011

Things are moving along!

The latest news is as follows: I'm 100% effaced, 2 cm, and E is at -2. I've been jail broken from the monitors and IV for the next hour or so! Woohoo! Shower and supper, here I come!

- Posted using BlogPress from my iPhone

Looks like Thursday

We finally settled into L&D Room 10 at 3:30 this morning. Mark, Sharon, and I hauled our gear, like vagabonds, through the desolate med center streets. It only took 10 minutes to waddle from the hotel to the hospital! My parents met us here shortly after.

One note- we have no cell phone service whatsoever- only wifi access in the hospital. So, contact us through email, Facebook or the blog. If you have had difficulty commenting on blog posts, there is a glitch. You have to be certain "keep me signed in" is NOT checked when signing in through your gmail account.

My fears of a rushed induction were laid to rest. Dr. I came into see me last night and said they were planning to take things very slowly, and anticipate Elliott will join us tomorrow (Thursday) afternoon.

Let's see... What news do I have? Elliott's heart rate is good, and I've been having irregular, light contractions since my arrival.

Elliott's heart tones were the perfect lullaby to coax Mark and I into a couple of hours of precious slumber.

They administered 25mg cytotec at 5:15 this morning. At that time I was 50% effaced, 1 cm, and E was at -3. At 10:00, they administered another 25 mg. At that time, I was 70% effaced, 1 cm, and E was holding at -3. He needs to start heading for the exit. I will have to get Mark to talk to him about. He listens to his dad. The plan is that we will likely stick with cervical ripeners today, and see what happens.

My day nurse is fantastic. I mean, she is truly great: hilarious, helpful, supportive, attentive.

If you're in town, feel free to stop by!

- Posted using BlogPress from my iPhone

We're en route!

Mark called the charge nurse and an hour later she called back with a room.

We are on our way!

- Posted using BlogPress from my iPhone

Tuesday, June 21, 2011

Don't call us, we'll call you

My 2nd phone call to L&D led to a 3rd at 11:30. My 3rd phone call was answered with a suggestion that I leave my number and they will call me when a room opens. No estimate of timeframe.

This is extraordinarily frustrating. But, like the preceding 7 months of my roller coaster ride since finding out about Elliott's issues, this situation is completely out of my hands.

After closing down Brasil's, the labor party dissolved. My parents and sisters returned to Spring. Mark and I are pontificating with my in laws at their med center hotel.

Sleep, though necessary, seems a distant goal. Despite a full day, and a relaxing foot massage from Mark, adrenaline continues to pulse through my veins.

Let me be clear. I am not frustrated about delaying Elliott's entry. Every minute he is in the womb, is another minute he has to develop and grow without wires and machines. I am frustrated- no terrified- I am terrified that I will not have the time to labor with minimal intervention. I am also concerned that I will wind up delivering with a doctor other than my own.

C called me today, before I called L&D the first time. She assured me Elliott's team is ready for him. There are beds available in both NICU and CVICU. Elliott will let us know which suite he will occupy when he arrives. C likened my situation (pre- L&D snafu) to my wedding day. She was right. I was a wreck, anxious, excited, overwhelmed, and continually adding to my tattered "to do" list, not unlike my wedding day. I feel I've been left at the alter. I realize I have not been deserted in perpetuity, but I feel a deep pang disappointment.

I think the suspense is too great for Mark. He is going to call L&D.

Elliott, we are so eager to meet you.

- Posted using BlogPress from my iPhone

Update on E Day Eve

Well, the summer solstice is a popular day for birthing. We are in a holding pattern until 10 pm. I'll call L&D after 10. On the upside, I will thoroughly enjoy (and digest) the Neapolitan- style pesto chicken pizza and Mediterranean salad I just ordered.

- Posted using BlogPress from my iPhone

E Day Eve

He's almost here. Mark and I have been busy crossing things off our pre- E to do list. Curtains are hung. Holes have been drilled for the mobile. Bottles are sterilized. Diapers are washed and stacked neatly. Quilt is completed and hanging on the wall. Crib mattress is on it's way. There are many other tasks on the list that were not accomplished, but now it is time to focus on the most important item on the list: Elliott.

I called Labor and Delivery this afternoon, as instructed, to confirm my arrival time. Unfortunately (or fortunately), there was a small issue. I was not actually scheduled to come in today. Evidently, there was a computer error. I am to call back after 7 pm to get an estimate for when they will take me tonight.

We are in the car, headed to meet my in- laws at D'Amico's for a light pre-birthing meal.

It's after 7pm. I suppose I should call Labor & Delivery now.

- Posted using BlogPress from my iPhone

Wednesday, June 15, 2011

The last Baylor Clinic appointment

Well, that was it. My last appointment before E's arrival. Dr. I was out of town, so I saw Dr. V. For the first time in a while, my blood pressure was normal (which for me is a tad low). My Elliott bump measured right at 38, which Dr. V said was an indicator of good growth. The belly measurement is probably the least scientific measurement, but I will take the positive spin. Dr. V then described the induction process. I have to admit, I did watch an episode of "A Baby Story" on TLC before my appointment today. I will also admit that it was not a wise decision. That said, I literally teared up when she mentioned pitocin. Then she asked if I was okay, and the tear dam flew open. I am dramatic, always have been, but this was ridiculous. She was so compassionate, and said "We will just see how it goes, and you may not even need the pitocin! Every birth is different." Instant tear drought, "Really? That would be terrific," I said. Dr. V immediately regretted her previous statement and said, "Well, it just depends on Dr. I's assessment of the course of your labor."

I know, I know. This is not the birth plan I wanted in a perfect world. Then again, in a perfect world, my sweet son's heart would have formed correctly and he would be coming home with my husband and I straight away, a healthy normal little boy. A lot of things would be different in a perfect world.

In this world, I have to accept that Mark and I had no control over Elliott's heart, and do have control over getting him the best medical care possible, which we have done. We do have control over providing the best, loving home and family for him, teaching him all we know, and encouraging him to learn so much more. I loved him before I knew him, and I love him and his daddy more and more with each passing day and each little kick. I love feeling for his little feet and knees, and I am excited to be able to hold his little fingers in just shy of a week.

- Posted using BlogPress from my iPhone

Monday, June 13, 2011

The 8 Day Countdown

Eight days until we check into the hospital (of course, unless Elliott decides he's ready to make an earlier appearance). There is so much left to accomplish in preparation. Cleaning, laundry, and sewing each have a spot on my agenda.

I have been working on arranging to meet with a pediatrician. My nurse case manager, C, at Texas Children's recommended a group near the medical district and I called last week to set up a consultation. What a disaster. The receptionist told me my first pick was not accepting patients and the second pick does not offer consultations, but I was welcome to list her as the doctor. I briefly explained Elliott's complicated CHD (congenital heart defect) situation and said asked if an exception could be made, considering the circumstances. The receptionist cut me off and said I should call back Monday to leave a message for the doctor. I asked if she could just leave a message today, since I had just explained it all to her. She refused, stating that she will not leave a message for the doctor over the weekend and I would have to call back. I thought- oh! Perhaps, I have reached the answering service. I asked if that was the case, it was not. So, I politely said thank you for your time, and that was that. Now, I will readily admit that I can be abrasive. However, I have a very reliable witness whom will attest to my calm and pleasant demeanor throughout the conversation. It was not until I hit end, and took a deep breath that I began to unravel. There are many ways a more pragmatically (socially) aware person on the other end of the line could have handled that situation. For instance, using a professional register, rather than a condescending, scolding one. Additionally, one would expect that all levels of medical personnel would have theory of mind to take the perspective of others and at the very least offer a shred of compassion during such an interaction. As I felt my blood pressure elevate, my throat constrict, and my hands shake, I called C. She is amazing. In less than 30 seconds, all systems were back to normal (whatever that is at this point in the game). She immediately put my mind at ease. She emailed the pediatrician and said she would call me Monday with a meeting time. So, today is Monday and C just called. The pediatrician, herself, will call me this afternoon and together we will work out an appointment time. Relief.

- Posted using BlogPress from my iPhone

Location:Houston, Texas

Thursday, June 9, 2011

Testing 123

Testing posting using Blogpress app.

- Posted using BlogPress from my iPhone

The latest curve ball

While I am still working on the beginning of Elliott's story, I think I should provide information on the latest news to catch you up on our current situation.

Last Friday, Elliott and I went for his final prenatal echocardiogram. Elliott's diagnosis amended from:

to include:
Dr. Altman was not 100% certain of her latest suspicions, but felt she had enough evidence to warrant making some changes to our plan for Elliott's arrival.

The "plan" is now as follows:

1. Induce labor 6/21-6/22 to have as much control over the situation as possible (e.g., neonatology, cardio, and surgical staff present). While this is not the birth plan of my dreams (I truly hoped to have a natural birth, no epidural, no IVs, no pitocin, etc), it is just one of the many sacrifices a parent must make for the benefit of the baby. It is simply not safe for nature to take its course in terms of my labor, Elliott has too much at stake and will need immediate life-sustaining intervention.

2. Immediately put in a central line through his umbilicus for monitoring and one for delivering PGE (prostaglandin, to keep the PDA-patent ductus arteriosis- open to allow good blood flow to continue through aorta).

3. The Neonatologist will assess all other functions and provide intervention as necessary.

4. Elliott will be returned to me, briefly, for pictures, hellos and goodbyes and then Daddy and Elliott will travel to the Cardiovascular Intensive Care Unit (CVICU) for ECHO, and further assessment.

5. He will receive a Nasal-gastric Tube (NG Tube), and will be syringe fed through the tube. I will utilize the hospital milk bank to pump for Elliott for the duration of his hospital stay. This will allow the team to closely monitor input and output, while reducing Elliott's workload (nipple and bottle feeding are very taxing for these little guys and he will need maximum nutrition with minimum effort-- thank you, Renee Bogschutz for that grueling semester of Dysphagia :) ).

6. Currently, the surgeon estimates that Elliott will be in CVICU for 4-6 weeks. Based on the ECHO, a more solid surgical plan will be developed. We will meet again with the surgeons and he will have his first open heart surgery (which means they will go in through the chest wall and separate the breast bone to access the heart, and Elliott will be placed on the heart and lung bypass machine). Preliminary findings indicate that the primary goal will be to correct the Coarctation of the Aorta, and then band the pulmonary artery to ensure adequate blood flow to the lungs. They will also assess the feasibility of continuing to use the right ventricle as a functional pumping chamber. Of course, all of this is really contingent on the postnatal ECHO.

7. Mark will be in Houston for two weeks, then he will return to the back and forth routine. For those of you who don't know, Mark is maintaining his job in Lubbock, and completing his final quarter of clinical practicum/ internship for his Masters in Counseling degree. I am so proud and grateful for all of his hard work during this very difficult time.

8. While Elliott is in CVICU, we can try to get on the list for the on site Ronald McDonald House, however CVICU has one bed and it is reserved for the family of the sickest baby. As my nurse coordinator said, we don't want that bed. We can also stay at the off site Ronald McDonald House for $35-40/day. My dear friend, Munah, has also offered her spare bedroom to us (she lives about 2.5 miles from the hospital).

9. Life in the CVICU is unnerving for moms, dads, families, and friends. Elliott will have tubes and machines connected, and it will be difficult to take in. However, I aim to educate myself as much as possible to slowly chip away at my fears. We are able to visit him anytime 24/7 and may have guests (over the age of 12), as well.  Each of Elliott's visitors must have a recent pertussis vaccine, as there is currently an outbreak of pertussis. Also, please send your love and best wishes from a distance if you are not feeling well. The fact is that Elliott can get sick, and will not be able to tolerate illness (especially respiratory) as well as other infants. We would love to see you when you are vaccinated and feeling at 100%!

10. While in CVICU, we can provide Elliott with caps, booties, and receiving blanket. All items must be labeled with iron-on labels. If anyone knows of a great place to order super cute iron on labels- let me know!

11. Please don't hesitate to post comments, text, email, or call. But, please understand that it may take us a while to respond. Also, I know this likely goes without saying but please keep negativity, and criticism to yourself. I understand, I am a chronic cynic. However, this journey has been excruciatingly taxing and I am struggling with checking my cynicism at the door. Any help you can provide with this will be most appreciated :)

The Beginning

Where to begin? I suppose I should begin in the beginning.

We were in our last year of graduate school when we decided it was time to take the plunge and start a family. Clustering major life changes together (i.e., establishing new careers, possibly moving, having a baby) sounds like a great idea, right? In light of the chaos that had been the first year of graduate school, we decided that we were ready for more and would handle it with grace.

October 19, 2010. 4 weeks/ 0 days. The first round of drugstore early pregnancy tests, taken several days before, yielded negative results. I had plans that evening to share a bottle of wine with Ann and Timothy before heading to the annual departmental Hot Chili Nights event. On the drive home from class, Erin decided I needed to test one more time before indulging in any vino. She had a sneaking suspicion that my latest obsession with the hospital cafeteria pudding was not normal. Three EPT tests later, I hollered for Mark. We embraced, teared up, I left for the chili party, and he left for the ceramics studio. I began to develop an acute awareness of my middle section, imagining the tiny pin point of an embryo floating around. I beamed with pride, thinking of our future mini Mallory and all that we would share with and learn from him or her. I drove straight to the ceramics studio after the chili dinner. Mark was waiting for me outside. We hugged and talked about our hope and fears. It was a beautiful night.

November 5, 2010. 6 weeks/ 3 days. Our first doctor's appointment and sonogram. We had named the creature of the womb affectionately, peapod. Peapod's wide screen debut was orchestrated by a large goofy sonographer, who resembled Gene Shallot. Peapod was rather elusive, and Mr. Shallot had a difficult time registering a heartbeat. Mark and I squinted anxiously at the screen, searching through the gradations of black and gray for some semblance of our Peapod. Finally, we were able to discern a blinking dot and confirmation was complete: we were officially pregnant, and we had a grainy photograph to prove it!

December 20, 2010. 12 weeks/ 7 days. Having learned about the spectrum of catastrophic congenital anomalies in grad school, Mark and I opted for the ultra-screening ultrasound. We waited in a room full of pregnant teenagers wearing pajamas and slippers. And waited. And waited. And waited. Finally, we were ushered into a large room with 2 wall-mounted 52" TVs. The sonographer was apologetic for the wait, friendly, and chatty. While she scanned my uterus, she narrated. Abruptly, she clammed up, offering only a periodic tight lipped smile with sad eyes. She stepped outside the room and few moments later returned with another sonographer and two Maternal Fetal Specialists. She continued to scan, and the four of them conferred, exchanging knowing glances and hushed acronyms. All the while, I had ceased watching the TVs, instead focusing my attention on the foursome. Mark gripped my hand tightly. What followed is blurry. Dr. Hales asked us to join him in his office, where he apologetically admitted that he had bad news. Our little peapod had bilateral cystic hygromas (fluid filled pockets on both sides of his neck). He pulled out flip books with illustrations of chromosomes and explained that he felt the anomalies indicated on the ultrasound were likely consistent with a chromosomal issue. He suggested we schedule an amnio and provided the early age of the baby, we would have to wait until January 6th. In the meantime, he cautioned that the worst of these babies do not survive, but our baby's issues were not necessarily the most severe. All the same, we were devastated. Friends and family provided invaluable support and Mark and I clung to each other. And the frantic internet and scholarly journal research commenced.

January 6, 2011. 15 weeks/ 2 days. The three of us made it through Christmas, and finally we had another chance to get a glimpse of our peapod. We hoped that having put the tragedies of 2010 behind us, we could begin 2011 with refreshed spirits and great expectations. Our amnio ultrasound provided us with the miraculous news we so desperately longed to hear: peapod's cystic hygromas had completely resolved! Waiting for the initial results of the amnio was grueling. My comprehensive exams began the day the initial amnio results would be available. I was very fortunate to have outstanding support from friends, faculty, family, and most of all, Mark. Concentrating on my exams was mildly successful as I waited for the call. Finally, my professor motioned to me that I had a phone call and I sprung from my seat and out the door to hear the news. The initial results indicated peapod was a boy, which ruled out Turner's Syndrome, and that the initial study of the chromosomes indicated no anomalies. I was elated, with a healthy dose of caution, as the official report would not be available until later in the week.


Welcome to Elliott's blog. I am going to to do my best to keep everyone updated on Elliott's progress through this blog. Please feel free to check back often, and leave comments. We love to hear positive bits from friends and family!