Beau's Week with Nana Meredith

Thursday, October 17, 2013
Beau had another morning x-ray and his stomach and intestines look totally clear - no gas bubbles or tubules!   His IV was moved to his left foot as his hand/arm looked a little puffy.  He still has the tube in his mouth 'emptying' his tummy but the suction has been turned off so it's being 'put to gravity.'  At 5:30pm his IV was switched to his other foot because his left foot would not flush.  Poor baby is being poked left and right.  His rash (or possibly neonatal acne) seems to be spreading to his cheeks now. Today's weight: 2435g = 5 pounds, 5.9 ounces.

Friday, October 18, 2013
The NICU was closed for the afternoon to visitors due to the admittance of a very critical baby so we only got to see Beau in the evening.  Nana Meredith got into town at 4pm and we headed to the hospital after dinnertime when they re-opened after nurse change at 7:30.  Nurses began Beau's feeds again at 2pm with only 10mL so the replogle tube was removed from his mouth. They also started him on TPN. The IV was moved AGAIN into his left foot.  His air cannula was increased to 3L and he received his last dose of antibiotics at 8pm.  He has two brady events today at 0845 and 1348. Today's weight: 2475g = 5 pounds 7.3 ounces.

Saturday, October 19, 2013
No brady events today - woohoo!!!  His feeds were increased to 20mL and still TPN for additional supplements.  Today's weight: 2540g = 5 pounds, 9ounces - up 2 POUNDS from his birthday!!!

Sunday, October 20, 2013
Nana got Beau an adorable crab outfit that was hard to resist!!  His feeding tube was moved to his mouth, how uncomfortable. :(  His feeds were increased to 25mL at 5pm.  He has no brady events overnight from Saturday to Sunday but had 3 this evening.  Today's weight: 2565g = 5 pounds, 10.5 ounces, length: 47.5cm, and head 37.5cm.

 Monday, October 21, 2013
When we arrived for Today's visit, the IV was no longer in his foot and now in his leg. He has no brady events overnight but two today at 0730 and 1215; also a few de-sat events possibly related to 'bearing down.'  At 5pm, Beau's feeds were increased to 35mL and his air cannula was decreased to 2L. Today's weight: 2600g = 5 pounds, 11.7 ounces.

 This onesie is from Great Aunt Sue - she thinks Beau is a star on Facebook and in their lives!

Tuesday, October 22, 2013
We hit another milestone today - Beau was moved out of premie diapers!!  YAY!!!  His NG feeding tube was moved back to his nose at the morning nurse change.  His feeds were increased at 5pm to 45mL (where he was before tummy incident) so he no longer needs the TPN but the IV is still in his leg.  His nasal cannula was turned down to 1L.  He has a brady event at 1040.  I got to weigh Beau today and it was quite the memory - he pooped on the scale, then during clean up peed, and then pooped again!  We were all laughing hysterically!!  When we finally got the weight he was 2520g = 5 pounds, 8.9 ounces (down a little bit).

 Our friends Jackie and Steve came to visit again too after we had a nice seafood dinner together.

Wednesday, October 23, 2013
Nana got her final snuggles with Beau until she returns for Christmas. We had a GREAT day!!!  The IV was taken out of Beau's leg.  He has no brady events overnight from Tuesday to Wednesday. He was taken off his air cannula at 2pm for the first time since he was born!!  Marisa got to bottle feed Beau for the first time at 2pm and he took 15mL with the help of Donna his OT. We are going to begin PO (by mouth) feeding 2-3 times a day. Beau had one brady at 6pm.  Today's wight 2610g = 5 pounds 12 ounces.

One step forward and two steps back

October 13, 2013 
 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.

             morning x-ray - clear, gas bubble in intestines                          afternoon x-ray

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

The NICU - week 4

October 6, 2013 Beau is 3 weeks big!!   No major changes in his stats.  Some weekly measurements are weight: 2060g = 4 pounds, 8.67 ounces,  47 cm. long,  and 30.5cm head circumference.

October 7, 2013 We talked to the attending neonatologist today and he explained a few things about Beau's stats.  When he has a de-sat (drop in oxygen saturation meaning his extremities are not getting as much oxygenated blood) this is primarily related to his heart defect.  When he has a brady (drop in heart rate) followed by a de-sat and drop in respirations, this is primary related to his prematurity.  Today's weightL 2080g = 4 pounds, 9ounces.

 

Learning to pray.

 October 8, 2013  Beau's feeds were increased to 40mL and today's weight is 2065 = 4 pounds 8.8 ounces (down 15g).

                     Are you looking at ME?

October 9, 2013  Beau's cannula was increased to 2L today due to increased 'brady' events. Today's weight: 2110g = 4 pounds, 10 ounces. 

                                             KISSES   xoxo

October 10, 2013  Dr. Alderson, Beau's pediatric cardiologist, came by to visit.  She doesn't seem concerned with Beau's de-saturation episodes as they are 'typical' behavior for a child with a heart condition.  Donna (the OT) and Tracy (the Speech Therapist) came by for another visit.  They assessed him yesterday and he is showing more sucking reflexes.  They went through some possible scenarios with us about the possibility of Beau coming home with a feeding tube or a g-tube. The determining factor would ultimately be his feeding but beyond that would be the procedure.  To put in a g-tube the child has to be put under and with Beau's heart condition that would be approved or not.  Last night, Beau pulled out all his tubes on his face so nurse Leah snapped a photo of his "clean" face - this is the first time I've seen his face since the delivery room!  Tonight's weight: 2210g = 4 pounds, 14 ounces.

         

 

                                                                                                    clear face!

                                       Marisa's friend Amy's sister made Beau a special onesie!

October 11, 2013 Beau's cannula is still at 2L.  He did not have a de-sat or a brady event from 7pm - 11pm!  On Monday, they plan to trend Beau's weight to see if another diuretic is needed. A typical child gaines between 15-20g a day and Beau has been gaining more so they just want to check things out! Today's weight: 2235g = 4 pounds, 14.84 ounces.

October 12, 2013 No brady events for a whole 12 hours today! Beau's crib was moved to an awesome spot by the windows that is a little more set apart from the others!  The heat was turned off in the hospital tonight so it was super cold; Beau had to be double clothed and double swaddled to keep warm!  Today's weight: 2315g = 5 POUNDS 1.66 ounces (up 80g from yesterday).

 

Every good gift and every perfect gift is from above, 

coming down from the Father of lights with whom 

there is no variation or shadow due to change. 

James 1:17

The NICU - week 3

On Sept. 29th Beau was 2 weeks old!!!  He is now in an open isolette as a trial to be moved to a crib. His weight today was 1810g = 3 pounds, 15 ounces.

                                 Smiling eyes

                                                                                                       Story time

On Sept. 30th, Dr. Mattingly did another echo on Beau today and saw a little more stenosis below his pulmonary valve.  He said this could be the reason for a little more decreased oxygen saturation - closer to 85%  where we would like it to be.  His picc line (that ran from his arm to his heart) came out today!  Today's weight was 1790g = 3 pounds, 15 ounces... almost 4 pounds!

 This is my favorite picture of Beau so far... :)

On Oct. 1, 2013 Nurses are now adding 6g or calories per feed totaling 26 calories/ounce of milk.  He is receiving 33mL (just over an ounce) of milk at each feed every three hours. He has been sucking on his hands... this is a good thing for his mouth muscle tone. BIG DAY - Beau weighed 4 POUNDS 0.9 ounces!!!!!!!

 

                             Looks a little like a wink!

On Oct. 2nd,  Beau was moved to a crib overnight - what a big boy!!! His feeds were increased today to 35mL.  His air was turned up to 2L to try and stablize his oxygen saturation.  The doctors decreased his Lasic diuretic to once a day and decreased the sodium as well.  Laura came to visit Beau again today and she got to home him too because now that he's in a crib he can be held anytime we want!! He weighed 1860g = 4 pounds, 1.6 ounces today and measured 47 cm = 18.03 inches long.

                               comfy cozy                                                   you can see his eyelashes!

On Oct. 3rd, he was taken off the Lasix diuretic and the sodium!!  One step closer!!  Today's weight was 1885g =4 pounds, 2.49ounces.

I go camera crazy with this man and can't pick just one photo!!

                    <3  love this face <3                                   Great Auntie Sandy got Beau a dino outfit!

On Oct. 4th, Beau's feeds increased again to 38mL and still adding 6g calories. He is still having episodes of de-saturations, bradys, and low respirations in combination - all related to his prematurity. Today's weight was 1925g = 4 pounds, 3.9 ounces. The night neonatologist told us Beau's growth curve so far is great!

                            His poor little cheeks get tugged on :(                              

On Oct. 5th, Beau had no major changes today.  Weight: 1980g = 4 pounds, 5.8 ounces

Little smiles in my favorite hat.

Sons are a heritage from the LORD, 

children a reward from him. 

Psalm 127.3