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Brain Food - Week 7

Gratitude. Something we have been showing much more of recently. Even in the hardest of days we still find things to be thankful for. Things we thought were "problems" before are laughable. We have a lot to be thankful for and that isn't lost on us. Thank you all for supporting us and following our journey. We are blessed to have you in our lives.

As week seven started we were thankful for the weight gain. 9lb 10oz. Our little boy was growing. We were working through our long list of specialists and appointments but if he was eating and gaining weight nothing else really mattered.

This week our goals were to get a brain ultrasound done and meet with a craniosacral (feeding) therapist. While still three significant appointments in one week, it still felt like a lighter doctor week compared to some of our recent weeks.

Cranial Ultrasound

At our genetics appointment, Dr. S ordered a cranial (brain) ultrasound. She wanted to make sure that she had a view of every system in Nolan's body to make the most informed diagnosis. She was not concerned about anything being wrong but wanted it to be done as a precautionary procedure.

We scheduled this appointment for Tuesday, July 3rd. The idea was that even with the 4th of July holiday we would get the results before going into the weekend. Weekends always made the wait feel much longer, so we wanted to get the ultrasound and results in the same week.

Joel and I were not nervous at all about the brain ultrasound until the morning of the appointment. We kept telling ourselves that everything would be fine, but we also told ourselves that with the heart appointment. We knew that his brain would be fine -- they didn't see anything on my prenatal ultrasounds and he was doing all of the "normal" baby things. However, fear still crept in, and we were tense and emotional that morning.

We got called back for the ultrasound. Nolan was sleeping in his car seat, and the ultrasound tech let him stay there sleeping. We put his seat up on the table. She covered his head in gel and started.

Joel and I both stood the entire time. She took photo after photo and didn't speak. I asked her one question, "Can you give us any results today?" She said that she was not permitted to do so, but we would hear back by Friday.

It took about 30 minutes for her to take all of the photos that she needed. We cleaned Nolan up and started making our way out. She stopped me as we went to leave and said, "We still have to have a Dr. read this, but I didn't see anything."

I burst into tears. I knew she couldn't say what she had just said, but we were so thankful we did. It made the next three days of waiting not as stressful. We still needed a doctor to give us the all clear, but at that moment she gave us a ton of peace.

This morning (Friday, July 6) I heard from Nolan's pediatrician. The cranial ultrasound was normal. He has a normal brain. PRAISE GOD.

All of his organs have now been checked. Looking back we have had more good news than bad. It took seven weeks to get to this point, but there is a light at the end of the tunnel.

Our focus now will continue to be the ear and heart. We are so thankful that we got so many answers so quickly, even though we had some LONG and HARD weeks.

Craniosacral (feeding) Therapist

A good friend of mine is a pediatric occupational therapist and has already been a fantastic resource for us. After Nolan's second tongue tie procedure, I reached out to her about getting feeding therapy for him. I knew that he tired quickly with his heart, but I also knew that something had to be done to help him eat easier. It wasn't just him getting tired quickly, I knew his mechanics of eating needed help too.

She got us connected with a woman named Staci that does Craniosacral Therapy. We met with her this morning (Friday, July 6). We talked her through the issues that we were having with feeding, and she talked us through how to help him.

His tongue, lips, jaw, and overall mouth were very tight. He wasn't using all of the muscles in his mouth to latch onto a bottle and suck. She massaged parts of his mouth and neck, and also did body work on him to loosen him up. By the end of the hour appointment, our baby that can hardly suck on a pacifier was moving his entire jaw, lips, and tongue to suck on her finger. It was amazing.

We came home, and he has the biggest bottle he has ever eaten. Not only was it a lot of ounces it was not a fight. It was still slow (took almost an hour) but he did the majority of the work. He sucked and hardly spit out any. Incredible considering yesterday he screamed through nearly all of his feedings.

Joel is currently in the other room giving him another bottle. I haven't heard Nolan scream once. Success.

We needed some victories. Nolan needed some victories. This week we got them.

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Laina and Joel, while my heart breaks for Nolan and all you have been through in his short life, you are so inspiring and your courage and positivity are so unbelievable. Nolan is blessed to have you as his parents. You are in my daily prayers for his full recovery. Your blogs are so inspiring. Thanks for sharing this personal part of your lives. Love and hugs to you all.🙏🙏❤️❤️

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