So much has changed. So much new information has been presented. I have been sitting here trying to formulate a way to bring it all together but I fear my thoughts resemble that of a kaleidoscope.
Last week was hard. The concern was presented to me that Dalley is presenting some behaviors that are sometimes indicative of Cerebral Palsy. The information was not given to scare me or cause me to worry anymore than I already do. It was given to me in love. To prepare us for Dalley's potential future.
We have known from the beginning that this was a concern. When I was admitted into the hospital at 23 weeks... at the point that I was CERTAIN I would not be delivering our baby anytime soon, the Neonatologist team came into my room and laid it all out there for me. They told me the risks that are associated with such an early birth. Blindness.... deafness....developmental deficits......infections......cerebral palsy.......death. They had to tell us this information so we could be prepared and so we could make the best decision for our family and for our baby. All we had to do, was tell them that we didn't want them to intervene. That when she was born... we would choose to hold her in our arms and be with her as she passed away.
Adam and I had already discussed it. We had made that decision with the triplets. We didn't feel it was our decision to make..... to say whether we felt she should live or die based on a 'possibility' she could have a serious problem. It wasn't our call.
But..... as it was being presented to us that day, there was a brief moment when I thought, "What kind of quality of life will she have? Is it selfish of us to choose this life for her?"
The moment was brief. We knew what the right decision was for US. We would give her every fighting chance at life and we would deal with whatever came as a result. We would give her the best life we possibly could. A shortage of love would never be an issue.
Up until the past few weeks, it seemed as though the main focus has been survival. "How can we make this baby live?". This has been the driving force. Now that we are mostly confident she will come home with us..... the unknown future and all of the potential issues have been regurgitated.
When the idea of cerebral palsy was mentioned, I fretted for days. I would cry in trepidation anytime she would exaggeratedly arch her back for an unknown reason....or when her hands would shake uncontrollably in front of her. The fear was consuming me.
But I HAD to change my mindset! I
Nothing had changed. If she ends up having cerebral palsy... then she has cerebral palsy. Worrying about it won't fix anything. I tried to take the information as it was intended and use it as a tool. I have been working with the Occupational Therapist, Chris (who is AMAZING) every single day. She has been teaching me exercises to do with Dalley.
If she has CP.... it will be caught early... and we are already working to minimize the severity of it
IF it presents itself. Right now, we can't waste any time worrying about a disease she may or may not have. If she does have it.... we will be prepared. Nobody wants their child to be sick. I don't WANT Dalley to have CP... But nothing about our love for her will change if she does. She is amazing and I am in awe of her every single day.
I had to do a complete 180. Once again... she deserved my unconditional faith in her.
I set up a bet in the NICU. Pick your date.... the person who picks closest to the actual day we leave will win a prize. What that prize will be... I'm still not sure... but it will be cool. Maybe a cupcake and a Diet Coke. My luck.... the winner will hate cupcakes and Diet Coke and will give it back to me.
Friday night we had a care conference with Dalley's team. We met with doctors, nurse practitioners, primary nurses, respiratory therapists, and social workers. They had set the stage for what needed to happen before Dalley could come home.
1. She needs to be on low flow oxygen. This is a level of oxygen that she can go home on.
2. She needs to be eating or we have to decide which kind of feeding tube to send her home on. An NG tube (feeding tube through the nose) or a G tube (surgically inserted into her stomach).
3. Her eyes have to be cleared from progressing ROP.
4. Consult with the neurologist about her lack of eating by mouth.
5. Consult with ENT and make sure she has no vocal cord paralysis.
6. Consult with the gastroenterologist to make sure her stomach is working adequately.
There was so much listed that I thought we had A LOT more time.................
I MIGHT BE WRONG.
1. She is going on low flow oxygen tonight.
2. I put in my first NG feeding tube today.
3. Her eyes were cleared (for the most part) today. The doc says she now has mild ROP that he believes will fix itself.
4. Neurology came today. They may do an MRI next week, but clinically he didn't see anything concerning to him. He couldn't diagnose CP because that won't be completely diagnosable for several months...maybe even years.
5. ENT consult this morning. No paralysis!
6. Trip to Primary Children's last week that showed no pyloric stenosis. Yay!
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Road Trip!
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It was suggested today that we may be going home even sooner than expected.
I have so many emotions right now. Panic. Unpreparedness. Excitement. Anxiety. Survivor's guilt. Dread. Gratitude. Anger. Love.
I'm swimming. I can't make sense of so many conflicting feelings.
I feel so broken in so many ways.
Spiritually I feel like a glass table that has shattered. I have no idea how to put the pieces back together. I don't even know if it's possible.
Mentally I am apprehensive to feel excitement. Anything could still happen.
Physcially I feel exhausted. I can't believe this has been my life for almost 5 months.
Emotionally I feel guilty. I don't know how to feel joy for our situation when so many people I have come to LOVE dearly are still in turmoil.
I feel broken. But for the first time in a long time... I am okay with being broken. I feel the pressure lift to try to have all of the answers or to figure everything out. What a journey this life has been.... and continues to be.
On Friday we met with Dalley's Neonatologist, who also specializes in infectious diseases. He let us know the danger behind her getting sick... and strong emphasized our need to advocate for our daughter. She isn't like a normal...healthy full term baby. The concept of "she needs exposure to build immunity" doesn't work the same for her. She is fragile. Her lungs are sick. A simple cough or sneeze from a health person, could be a deadly disease to her. We have to be careful about who and how many people we let see her. Holding her will be even riskier. We mean no offense. We just have to protect her.
Adam wrote a write up that clearly explains our opinion on immunizations. We are not asking anyone to change their opinion to match ours, but this is our opinion as far as care for Dalley. We love you and thank you for understanding.
Hi everyone. We just wanted to give you an update on Dalley. She is doing great. In fact, we met with her care team of specialists to plan for her to come home. If she continues to make the improvements she is currently making, we should plan on bringing her home within 1-2 weeks. We are so excited! As we gather the necessary stuff she’ll need, ie crib, clothes, etc. there are other things she will need--lots of love from her family. She is so excited to meet all of her loving family and friends and thank them (in her own special way) for being there for her through the extremely difficult journey of being a micropreemie. She can’t wait to be held and loved by you all. Her team consisted of: Neonatologist, Perinatologist, Cardiologist, Nephrologist, Ophthalmologist, Neurologist, Pulmonologist, Gastroenterologist, ENT, Occupational Therapist, Social Worker, her Loving Nurses, and Infectious Disease Specialist. Little Dalley is more than likely coming home on Oxygen because her lungs are so FRAGILE. In fact, she has Chronic Lung Disease that is going to take her several years to overcome. So she needs your help. If you haven't already, please get current on your vaccinations--specifically Mumps, Measles, Rubella (MMR--good for life if you’ve had the vaccine; if not sure, please get a titer and appropriate vaccines), Diphtheria, Tetanus, Pertussis (T-DaP--new evidence shows only good for 6 years; please get titer or booster), Influenza (must be done yearly to prevent ever-changing strains of viruses). THESE are SERIOUS, LIFE-THREATENING diseases to Dalley. But we can help prevent her from getting them by being vaccinated because these diseases are preventable (polio and smallpox were eradicated due to vaccines). As her Infectious Disease specialist told us, without a doubt any of these diseases will kill her. If you aren’t sure if you have immunity to these diseases, please go to your Primary Care Provider, ask them to draw a Titer of Blood to check your immune status. Based on the blood results, they will be able to tell you which vaccinations you may or may not need (or just get the vaccines if you know for sure you have never been vaccinated). This will not take much time and most of the time you do not need an appointment, just walk in on your lunch break. If you are not vaccinated, we would respectfully ask you to not see her until such time. The risk is too great. We can do this for Dalley! She has fought so hard to be here and we can help her by doing this simple task. Thank you all for your love and support!!! We appreciate everything you have done for us. Now let's get her home to meet her tribe!
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"The babies in here cry too much. Time to go home."
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Sorry for any grammatical errors. It's 1:15 AM. I have to get up at 6:00 to go to work. I'm tired. :)
