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:

• Hypoplastic Tricuspid Valve and Right Ventricle (good info available here: http://www.mountnittany.org/wellness-library/healthsheets/documents?ID=7292 )

to include:

• Coarctation of the Aorta (http://www.mayoclinic.com/health/coarctation-of-the-aorta/DS00616 )
• Transposition of the Great Arteries (http://www.mayoclinic.com/health/transposition-of-the-great-arteries/DS00733 )

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 :)