Spinal Tap Today

They did a spinal tap on Andrew today. It went well and his head size went down by 1 1/2 cm. The neurosurgeon feels certain that a shunt will be needed. Based on his examination today, he also feels that Andrew has sagital craniosynostosis (one of the growth plates in his head fused early). He said because of that, he wants to move sooner in putting in the shunt. However, he needs to be sure that his stomach issues are cleared up. So, he will wait until he is on full feeding before planning the surgery. Our guess is 2-3 weeks. Andrew will require another surgery to address the craniosynostosis and will have to wear a special helmet for a while. The surgeon said that it is unusual for a child to need a shunt and have craniosynostosis. Because of both conditions, he may need a different type of shunt to try to help him have a normal head shape. So, we will see what happens. I am still praying that his suture is not fused.

Andrew was scheduled for another ultrasound today. Last night and this morning he started having desats (problems with breathing) and his head circumference increased by 1cm. I am waiting to hear from the Dr. to see what they are going to do. When I spoke with the nurse on the phone, she said she thought they were consulting the neurosurgeon and may go ahead with the ultrasound before they drain the fluid. They will either do a spinal tap or tap right into his head to relieve the pressure. I am waiting to see what the plan is. I have to give the little guy credit, at least he held off till the neurologist was back in town!

Both Anna Kate and Matthew are now on the lowest setting for their incubator. If they do well with their temps over the next two days, they will try them in a crib on Wednesday. Anna Kate is doing better with the bottle feeding than Matthew is-he doesn't seem quite as interested in working for the food. But, they will get it with time!

Andrew's upper GI results came back and the surgeons decided to start his feeds again. Although everything went through, it did go slower than they expected. So, if he has problems again, they will do another study. His head circumference stayed the same today and he hasn't had any problems. They stopped his antibiotics yesterday, so hopefully the infection is behind us. Both Brent and I held him today and he was alert and happy. He was 4lb 2oz.

Growth-in many ways

Andrew's cultures have been negative for several days and he is almost done with his antibiotics. So, his infection is gone. Today they did a GI study and we are waiting for the results. If there isn't a blockage or adhesions, then they will start his feeding back slowly. If there is a problem, they will consult the surgeon.

The head ultrasound we had earlier in the week was unchanged. However, his head circumference has increased 1/2 a centimeter each day for the last three days. So, fluid is building up and not draining. The neurosurgeon is out of town for the week. The neonatologist said they will not do an intervention until he shows signs of trouble. Those signs would include dropping his heart rate and spells of apnea. When that starts to happen, they will probably do another spinal tap to help relieve the pressure. Another concern is that there is a possibility that his growth plates in his head are fused. If so, they will have to be fixed surgically. His head is visibly larger and misshapen and that is hard to watch. He still seems to be in good spirits and is such a cute little guy!

Matthew and Anna Kate are "feeders and growers" as they call them. Anna Kate is now 3lbs! Matthew is 3lb and 12oz and since Andrew has been on fluids-he has packed on the weight and is about to break 4lbs!

I will post again when we get the results of the GI study.

First Bottles!

Today, I was surprised when they told me that Matthew and Anna Kate were both ready to get their first bottle today! Since they are 33 weeks adjusted age and both down to 30 minute compression feeds-it was time to try a bottle! The nurses were wonderful and waited until Brent and I got there. Both kids did great! They had 20 minutes to drink as much as they could. Anna Kate finished her whole bottle and Matthew almost finished his. Once they consistently do well with one bottle per day, they will move them to two and then to three. Once they are taking three bottles a day, they start trying them on bottle feeds only.

Andrew was alert today and seemed to be feeling much better. We are praying that the infection is going away.

Bath time!

Today I was able to give Anna Kate and Matthew a bath. It was a special time and both kids did really well. The nurse showed me how to take their leads off and put them back on after the bath. She was such a help and encouragement. It is a learning experience dealing with such tiny babies. I am thankful for great nurses like Sandie. They have all been wonderful in the NICU!

Andrew was a busy guy today. He has a fever this morning and his blood work showed that he still has an infection. So, the doctors consulted a specialist who ordered some of the tests. He had an abdominal ultrasound, an EKG, and some blood tests done. The results that we have gotten back look good, but he still has an infection that they are trying to fight.

I met with the neurosurgeon today and he feels that Andrew will need a shunt. However, he said it would be weeks down the road. But, we are still praying that the spinal fluid will drain on its own. The surgeon who evaluated his stomach said he doesn't see a need for surgery now, so we are praying that his stomach will heal and the infection will be treated with the antibiotics.

It was kind of a roller coaster of a day. But, I just remind myself that our joy and strength is found in Christ and He is unchanging.

A Positive Report

This morning when I went to visit I was a little surprised when I looked over and I was one kid short! Andrew wasn't in his incubator he was getting a CT scan. They forgot to tell me that they had ordered it and I was a little surprised. We had met with the Dr. yesterday afternoon after Andrew had a spell of not breathing and I was concerned that he just didn't look good. The doctor said he felt it was all due to his stomach infection and not the head situation. They will do an Upper GI on him in 10 days once the infection has been fully treated.

Today his stomach looked much better and they gave him another blood transfusion because he was anemic again. The doctors said the blood transfusion should also make him feel better.

The results of the CT scan showed that the blood has been absorbed! That is a huge blessing and we praise God for the news. The ventricles are still enlarged and there is still fluid on the brain, but there didn't appear to be any damage to the brain tissue-we are so happy about that! Now, we are praying that the spinal fluid will be able to drain on its own and that he won't have prolonged pressure on the brain. We know our God is the great physician and we are trusting him to do what is best! We appreciate everyone's prayers and support!

Update

All three kids had their eyes checked today. All three got a good report and seem to have "normal" preemie vision. They will all be rechecked in two weeks.

Andrew has avoided being put back on the ventilator-that is good news. The x-rays of his stomach are getting better each time. That is also a positive sign. We met with the doctor last night to discuss the brain issues. His ultrasound showed that the bleeding has not been reabsorbed. There is a very good possibility that he will require a shunt to relieve the pressure. However, we are still in a wait and see time. We are praying that God will cause the bleeding to absorb and that spinal fluid will be able to drain on its own. We are also praying that his feeding issues are due to an immature stomach and not an intestinal blockage or issue.

Matthew and Anna Kate are both on compression feeds. So, instead of being fed continuously through a tube, they are now being fed through a tube over shorter periods of time. Matthew just started and is being fed over a two hour period and Anna Kate is down to one hour. This is in preparation for getting their bodies ready for bottle feeding. Matthew also had his PIC line taken out and his IV removed. So, they are both making great progress!

Andrew

We just got a call that Andrew is not having a good day. His stomach is enlarged which could be due to a few things. He may have an intestinal problem and they are doing x-rays frequently and have a surgeon on stand by who is looking at the films in case it gets worse. It is possible that he simply wasn't ready for the amount of feeding he was getting and that the issue will resolve on its own. That is our prayer. Because of those issues he isn't breathing well. They had taken him off CPAP yesterday and can't put him back on it because it can cause air to build up in his stomach. So, they will probably have to put him back on the ventilator. On top of all of that, his head got larger over night, so they are doing the head ultrasound today and think they will need to do a spinal tap to relieve pressure from the brain. So, he has a lot going on right now. Please pray for God's strength for me and Brent and that these issues would resolve without further complication.

Andrew

Making Progress

We are happy to report that Andrew has had a negative culture for the past three days. So, it looks like the infection is gone. They are going to continue to treat with antibiotics for another seven days. Both boys are progressing with their feedings and are getting three CPAP breaks each day. The doctor said she hasn't heard a murmur on any of the kids over the last few days. So, that is wonderful news! Anna Kate has started compression feeding and is doing well. We have had clothes on her a few times and they are getting her out of her incubator a little bit each day. Andrew's head size has been stable and it still feels soft. They will re-scan his head on Wednesday. All three kids will have an eye exam on Tuesday.

Continue to pray for:
Matthew-to tolerate his feedings and CPAP breaks well and that his PDA will remain closed
Andrew-that the bleeding will reabsorb, and that he will tolerate his feedings and CPAP breaks
Anna Kate-that her compression feeds will go well, that she will gain weight.

A Good Report

Today I received some positive news about each of the kids. Matthew has been being treated for his PDA (the opening outside the heart). It had gotten bigger again and lots of blood was going through it. While he was being treated over the last two days, they had stopped feeding him milk. The recent medication worked to a degree and the opening has gotten smaller. So, they started feeding him again. The doctors are going to watch it and see how he does. He has had all of the courses of medication that he can, and if it reopens, it will have to be closed surgically. He has continued to grow and is now over 3lbs!

Andrew came off the ventilator today and is back on C-PAP. They also changed his antibiotics to help fight the infection. However, both boys are anemic and they treat that with a blood transfusion. So, both boys had that done today.

The tiny princess of the group is doing great! Today, she came off the photo therapy and off the CPAP. She is breathing on her own. Let's pray that continues! She is also up to her max on continuous feeding and they will start feeding her over a shorter period of time soon.

We appreciate the cards, e-mails, and facebook notes. I apologize that I have not responded to most of them. Please know we read them and they are an encouragement to us. Many of you have asked how you can pray for each child specifically. As of today, here are some needs:

Matthew-that his PDA will close and he will tolerate his feeding.

Andrew-that the bleeding in his head will be absorbed and not increase and that his infection will go away.

Anna Kate-that she will continue to do well with her respiration and feeding and will put weight on. She also has a different muscular issue with her heart that we hope will close as she grows.

Update on Andrew

The doctor met with me this evening and went over the results of Andrew's second brain ultrasound. The bleeding has gotten worse. It has gone from a grade 2 to a grade 3 and is still on both sides of his brain. The doctor said we are in a waiting game right now. They will redo the scan in another week. Please pray that we will see a significant decrease next week.

Regarding his infection, he does seem to be responding to the antibiotics. They will do another blood work up tomorrow to confirm that the antibiotics are working. But, he seems to be feeling better and was breathing more on his own today. So, that is some good news.

Pray for Andrew

Well, as my mother said when she was here, it looks like Andrew may be the Drama King! When they did the kid's cranial scans, Andrew had a slight brain bleed. The doctors said it was a grade 2 on a scale of 1-4 with 4 being the worst. The nurses and doctors said the thought it would reabsorb itself. They planned on rechecking him today.

I got a call this morning asking permission to do a spinal tap on Andrew. They think he has an infection, but don't know where it is. So, they have run a bunch of tests and are starting him on antibiotics. Once they get the results back, they hope to be able to fine tune the medication. He was having difficulty breathing, so they put him back on the vent.

Matthew is tolerating his feeding well, and they are talking about taking him off his IV very soon. He is putting on weight and doing well on the CPAP machine. He is taking 2 hour sprint off it each day. He and his brother are on light therapy.

Anna Kate is also tolerating her feeding well. At present, she is off light therapy. She hasn't gained any weight in the last few days, but the doctors aren't worried.

Overall, everything so far has been in the range of normal problems for babies that small. I am just praying the can find the infection and treat it quickly.

Thank you for your support and prayers!