I can't help but post this little collage! One of Beau's primary nurses, Lisa, has a neighbor who makes these CUTE hats for her 'babies' so we got one! It's my favorite hat he has. :) Weight: 2350g = 5 pounds, 2.8 ounces. Length: 49cm = 19 inces and head circumference is 31.5 cm.
October 14, 2013
I got to the hospital this morning and immediately noticed an IV in Beau's arm. My initial reaction was 'oh no, what happened?!?' so the nurse called the doctor over right away. He explained to us the Beau continues to have ABD events (Apnea - drop in breathing, bradycardia - low heart rate, and decreased saturation). They tested his hematocrit and hemaglobin levels in his blood and they were lower than they would like. Beau's hematocrit level was 33.8 and his hemaglobin was 11.1. The doctors told me Beau needed a blood transfusion. I knew premature babies often get blood transfusions during their NICU stay but the words BLOOD TRANSFUSION seem a little scary! He received 35mL of packed red blood cells over 3 hours. Their hope is to raise the hematocrit level to 40 and stabilize (but not increase) his oxygenation to decrease the ABD events. He was also given a diuretic (aldactone) for fluid overload. Beau's stats stayed stable throughout the entire transfusion. Doctors also increased his cannula air to 3L/min. They plan to re-test his H& H levels next Monday. Immediately they saw a decrease in ABD events - NONE from 7pm Monday - 7am Tuesday!!
Today's weight: 2385g = 5 pounds, 4.1 ounces.
October 15, 2013 Beau is 1 MONTH OLD!!!
However, he began having more residual at his feeds... he has 14mL residual at his 2am feeding, and 4mL at his 5am, 8am, and 11am feeds but had minimal the rest of the day after some tummy time. He had 4 ABD events at 0800, 1230, 1430 and 2330 which is relatively less than before but still occurring. Today's weight: 2405g = 5 pounds, 4.8 ounces.
October 16, 2013
When I arrived at the hospital at 12:15, the nurse immediately said she was going to let the doctor know I was there so he could come over right away. I noticed the IV was back in Beau's arm so I patiently waited for him to come over. I will try to explain in the best way possible the information overload I got!
'Dr' Mason informed me that Beau had blood in his stool at his 5am and 8am 'hands on' times where the nurse changes his diaper and feeds him. So the stool was sent the lab to confirm that it was blood and it was. They began holding his feeds starting at 5am and did a stomach x-ray which came back clear. He was showing no signs of stomach tenderness or discomfort. They put him back on the TPN (total parenteral nutrition) as he will not receive milk today. The doc said they re-tested his H & H levels from the transfusion and his hematocrit was at 47 (they were hoping for 40) and his hemoglobin was at 15 which means it was a success!!
Dr. Alderson, our pediatric cardiologist, did another echo on Beau today and said he had a little increase in pressure of the pulmonary valve and arteries as his oxygen levels are increased (from the blood transfusion) and more blood is going to his lungs. The PDA is also still open just a little bit. She reaffirmed to me that when he has the ABD events that it is premie behavior still and that the stand-alone de-saturation events are caused by his cardiac defects. I asked about surgery and the plan is still for when he is 11-13 pounds (potentially January) but I asked about what happens if these ABD events do not get resolved or if he does not grow out of them. She said that the next step would be to check if he has reflux. If he continues to have the ABD events it will actually postpone his heart surgery.
Two days ago, I noticed some small red bumps on Beau's face but didn't seem to think too much of them. I mentioned it to the nurses who also were not concerned. However, when I got to the hospital this morning the rash had taken over his face. We are not sure if it's an allergic reaction, infant acne, virus related, or what?!?! :( He continued to smile but poor little guy..
The afternoon hours rolls by with a little kangaroo snuggling and they came back to do another abdominal x-ray that checks everything from his stomach to rectum. This time the results were very different. Doctor Englert tried to explain to me that Beau's intestines seemed to be dilated and elongated which he believes is probably caused by an ileus (functional blockage) in his intestines which you can see on the right side of the right picture below. They are going to decompress the stomach by inserting a replogle tube down into his stomach to essentially suck everything (including air) out of his tummy. However, this tube does not do the same job for the intestines so any air down there must be absorbed or excreted as gas. They did a blood culture to check for bacteria and will be putting Beau on antibiotics (for 48 hours) for precautionary measures. They are not going to let anything into his stomach for 48 hours so his feeds will be held until Friday. They plan to do another stomach x-ray in the morning. The doctor believes that this is probably related to a virus that he believes another baby has as well, and unfortunately, there is nothing a doctor can do medicinally for a virus except treat the symptoms. They plan to do another x-ray in the morning.
You can notice in the picture on the left how there is movement in the intestines as you can see the intestinal coils. In the picture to the right, there is blockage on his left side (right side of picture) and you cannot see movement in the rest of his intestines.
On a positive note, Beau does get stronger and more alert everyday! He is showing more sucking and rooting skills and his occupational and speech therapists are very excited. Today's weight: 2425g = 5 pounds, 5.5 ounces. I'll be honest, it's a helpless feeling watching doctors and nurses poke and prod at your little miracle and all we can do is watch and pray. We know that in life, and the NICU, sometimes it's one step forward and two steps back... today we went back but we know The One who has traveled the path ahead of us and paved the way. The LORD has a mighty healing hand on Beau and we trust that he is in the best of care. Thank you for praying on Beau's behalf.
Trust in Him at all times, O people;
pour out your hearts to Him,
for God is our refuge.
Psalm 62.8
I know it's frustrating to see all the changes that Beau is going through and all the obstacles he's been faced with so early on in life. Y'all are doing great though! It's so tough to be a parent in the NICU. I hope y'all are happy with his care. And let us know if we can make anything better for him or for you.
ReplyDeleteContinuing to pray for you, Andrew, and Beau, as well as all the doctors and nurses who get to care for him. I have Beau on our prayer chain here at church.
ReplyDelete