Week 3- PICC lines, IVs, De-Sats, & More Lessons in Patience

This week was a hard adjustment for me. On Sunday, Andy left to travel back home to NC for the week. He was needed back at the office for a few days, and our home & dogs needed some attention. His time back in NC meant Nicholas and I were 1:1 most of the time in the NICU. Thank goodness for my mom & dad who were on hand everyday to get me to the hospital, have dinner with me, and help with our bedtime routine in Andy’s absence.

When the nurses learned Andy would be away for a few days they gave us a great idea that we tried (and loved!) and would recommend to everyone in our situation in the future. When mommy or daddy can’t be at the bedside, FaceTime is a great resource. Each night my dad would get Andy on FaceTime and place him face down on the isolette so he could watch and hear everything that went on during our bedtime routine. While he wasn’t physically there with us he was able to ask questions, hear the latest vitals, and cheer me on during diaper duty.

We started this week much the way we ended week 2- on the NIV NAVA – a less invasive breathing support system, and on some meds and IV fluids to help Nicholas gain weight through nutrition support.

During much if the week, Nicholas struggled to breathe. A lot. We went from worrying about bradys to focusing on “de-sats” or “desaturations”. A de-sat occurs when a baby forgets to, or cannot, breathe and his oxygen saturation level drops quickly and without warning. As Nicholas was learning to breathe with less assistance than he received while on the oscillator (which essentially breathed for him before) he struggled to breathe with strength and consistency. His breaths would be quick and shallow and when you looked at him it almost appeared as though he was winded from running a race. I spent much time by his bedside watching his saturation levels go up and down and every time the alarm would ring I would find myself saying “Just take a deep breath, buddy. Deep breath.”.

Nicholas did begin to respond more and more to us this week than he had in the past. He began regularly opening both of his eyes at the same time. While I know he cannot see anyone or anything with clarity just yet, it’s wonderful to see his eyes open and look around.

On Monday, one of our doctors, Dr. Singh began to ween Nicholas from the IV fluids while he continued to increase his feeding amounts. As he continued to hold his feelings down without trouble, it was time to begin pulling him off the IVs and let Nicholas and the breast milk work together on their own. By Wednesday morning, Nicholas was pulled off all IV fluids and placed on a multivitamin he takes through he feeding tube during one of his afternoon feedings each day.

By Thursday morning, we hit another milestone for Nicholas – he had his PICC line removed. This meant the doctors saw no more need for large blood draws or for medicines that would need to be administered through his PICC line. I was happy to be able to say good bye to the PICC line machine that hung by his head and to the large lines that ran through and around his left arm.

Even though we made strides in removing more equipment from Nicholas’ care, he was still struggling to breathe. He remained on a medium level of support on the ventilator and had increased trouble breathing during each touch time and simple diaper change he experienced. The doctors continued to offer more support through increased oxygen and experimenting with his position to find him the most comfortable position.

During this entire week, I got to practice the fine art of trying to be patient. And I say “try” because it wasn’t easy for me. Each day I would come in to the NICU to see not much had changed in his support levels. I would spend much of the days and nights watching him struggling to breathe and repeating my mantra “Deep breaths, buddy, deep breaths.”.

Andy arrived back into Florida Thursday evening about dinner time. It had been a long day of work and travel for him but I was happy to have my husband back. He got to see Nicholas without his PICC line and see him continuing to open his eyes and look around and squeak out a smile. He quickly joined in on my never ending mantra “deep breaths” with me though as he saw our son struggle to breathe.

One of the most amazing things to witness (this week in particular) was Nicholas’ smile. Even though he was struggling to breathe and had some tough days, he has a way of flashing a smile that just says “give me some time. It will get better.”. That smile helped us through much of the week and the weekend as he continued to learn to breathe.

Week 1- Ultrasounds, PICC lines, and Transfusions

For the 24 hours after my c-section, I was on bedrest with a constant drip of magnesium sulfate or “mag bags” as the nurses lovingly referred to them. This drip is intended to stop seizures which can be common in both preeclampsia and HELLP syndrome patients if left untreated. While on the “mag bags” and several other medicines for pain, I was essentially pain free but was in a constant state of “Gee, its hot in here. Andy, isn’t it hot? Why is it so hot in here? Can we turn the air up?”. Andy took my constant interrogations about the temperature in our hospital room in stride for those 24 hours by simply agreeing that “Yes, dear, it is hot in here.” and turning the air up. Shortly after I was pulled off of the mag bags and made my first comment about how cold it was, Andy felt vindicated and let me know that everyone else in our lives (and in our hospital room for those 24 hours) thought it was colder than a meat locker and simply asked, “Can I turn the heat on now please?”. Ah, the “joys” of modern medicine.

During the 24 hours I was on bedrest, Andy was nothing short of an amazing husband and new daddy. He hardly slept all night the night Nicholas was born worrying about his comfort and well-being since he was in the NICU and not with us in my hospital room. After several hours of worrying and tossing & turning on the pull out bed, Andy finally went to check in on Nicholas at the NICU. (Side note: I use the term “bed” loosely here as it was a hospital chair that pulled out into a cot. It was very firm and hardly long enough for Andy’s long frame to sleep on but, he never once complained. He slept there every night during our 10 day stint in that hospital room.)

After Andy’s 1st trip up to the NICU (which was at 4:30 AM), he spent the next 24 hours going back and forth between Nicholas’ bedside and mine. He quickly learned how to help calm Nicholas through touch in his isolette, changed his 1st diaper, and met with the nurses to learn as much as he could before we could both meet with the doctors. He also coordinated (proudly) how to let our family see Nicholas in shifts (the NICU only allows 3 folks in at one time to see the baby).

I should take a moment here to brag on our family, especially my brother. Parker & I have always been close. He is my best friend & my super hero. He and his fiancee Jen were traveling back from Nashville, TN when Andy called to let them know that Nicholas was on his way into the world. As soon they arrived back at their home in Charlotte, NC they booked flights to Fort Myers, Florida and were by our side within 18 hours of Nicholas’ birth (complete with smiles, hugs, and Nicholas 1st stuffed animals in tow). They stayed for 2 days dotting on our son and helping Andy anyway they could (even if it was a trip to Five Guys for burgers and a break from the constant rotation of doctors and nurses). They were (and still are) a blessing to us during such a scary and uncertain time.

On Tuesday morning, October 7th, Andy and I visited the NICU – just the 2 of us and Nicholas. Once there, we met with one of Nicholas’ primary doctors, Dr. Abril. Dr Abril is a young doctor with a calm demeanor and a love of numbers. He spoke to us about Nicholas’ current condition and his recommendations for immediate care. He let us know that overnight Monday Nicholas exhibited an “episode” that may be linked to a ruptured blood vessel in his brain and the only way we would know if that was the cause and what the long term ramifications may be was through a cranial ultrasound. He also let us know that due to the amount of blood work that would need to be done and the amount of medicines he would need over the next few weeks, that he recommended placing a PICC line in Nicholas’ arm immediately (a PICC line is a catheter that runs from his arm through a vein and lands at his heart for maximum efficiency in his treatment. Its still amazing to me that they can successfully place a PICC line in a baby that only weighs 1 pound 12 ounces). We were also told that Nicholas needed steroids for his lung capacity to continue to increase. Finally, a blood transfusion was recommended immediately as his hemoglobin counts were so low (so were mine – more on that to come). We agreed to all treatments – Nicholas was given his 1st blood transfusion that afternoon, and his PICC line procedure and cranial ultrasound were scheduled.

I’m very thankful to say that his PICC line procedure was successful on the 1st try. The doctors and nurses were now able to administer medicines efficiently through this line and are also able to take blood as needed for testing. The beauty of a PICC line for Nicholas also meant that they could put back any excess blood they may have drawn but didn’t need back into his system (which is a blessing when you consider what a valuable resource blood is to such a little baby).

Nicholas’ cranial ultrasound was scheduled for Friday. Dr. Abril told us that there were 4 ratings a cranial ultrasound could return: a 1,2,3 or 4. A 1 or 2 meant minimal damage from a blood vessel rupture. A 3 or 4 meant that the rupture was worse and would most likely lead to developmental issues further down the road. He had no guidance on what rating he thought our scan may produce and told us to just be patient and hope for a 1 or 2 (this would be our 1st of many “be patient” moments). On Friday morning after the ultrasound results were returned we are happy to report that Nicholas’ scan returned a “negative” reading which is the best reading you can receive. In short, the scan showed no blood vessel ruptures! Dr. Abril himself said he wasn’t quite sure what caused Nicholas’ episode Monday night but to be thankful there were no blood vessel ruptures.

As for me and my health, while I was happy to be off “mag bags” and able to go see Nicholas, I wasn’t feeling 100%. I was in a constant state of “woozy” – feeling lightheaded, short of breath, and still experiencing pain in my right ribcage (where my pain resided before Nicholas’ birth). After several times complaining to the nurses about the way I was feeling (they would respond with a calm “that’s normal”), I decided to tell my doctor in detail about the way I was feeling. Dr. Brown ordered an ultrasound to see if he could find reason for my pain. My ultrasound returned a “silver dollar pancake sized” hematoma or blood bruise on my liver. My hematoma was a rare after-effect of HELLP syndrome. So rare that Dr. Brown himself hadn’t seen this himself in his many years of practice so he was cautious in how to move forward.

Dr. Brown had several other doctors come see me to learn more about my condition and make recommendations on treatment. Two of my favorite doctors that we saw during this ordeal were 2 ex-military surgeons who had served in Iraq and Afghanistan. Not only were they fun to be around, they were the most down to earth doctors about my condition and my limitations while healing. They did keep me in the hospital to monitor the hematoma for a week and did order my very own blood transfusion to help with my healing but were very realistic and supportive of my desire for time with Nicholas everyday.