Our Departure may be Delayed

We have been waiting for the weekend to pass, so we can go home. Mitchell reached his feeding goal at 1 a.m on Saturday & tolerated the progression well. Since we are a distance from the hospital, his surgeon wanted us to wait until Monday to leave.
Mitchell has had a little activity today, & it has been good that we are still here. This morning his new g-tube came out, apparently due to a faulty balloon; he took a little trip to radiology this morning & returned with a nice new tube. Wasn't fun for him, but he recovered nicely.
I think I mentioned last week that he had a small amount of blood in a few diapers; well, this morning it was more substantial. They re-visited the idea of a milk intolerance & placed him back on formula. It will take several days to transition and establish if it will make a difference.
He is being monitored, and they will recheck his labs in the morning. We should be able to go home once the bleeding has improved as long as his blood counts remain stable. His abdominal scans have remained negative as well as a G-tube study that was performed today. It is possible that the problem was exacerbated by a blood thinner used to flush his PICC line (alternative to an IV).
Thank you for your continued prayers; Maybe our next update will be telling you that we are headed home.

Photos- No Tubes

Getting Closer

Mitchell's feeding is up to 15 cc/hr; Other than the occasional cries that we think are from gas pains, he seems to be doing well. His radiology and lab reports have been good, and we anticipate leaving on Monday. Since we are out of the area, the CT surgeon prefers that we don't leave on the weekend. We are looking forward to getting home & being together as a family.
Thank you for your continued prayers & notes of encouragement.

Back in Step Down

Mitchell was transferred out of CICU back to Cardiac Step Down about 3 today. His abdominal xray this morning was normal, so the doctor is no longer concerned about the pneumotosis. They stopped the antibiotics and started his feeding at 3 cc/hr. The plan is to increase by 2 cc/hr every 8 hrs, so we will be here a few more days getting to a goal of 22 cc/hr. If all goes well with the progression of his feeding, we should be able to go home within a day or so of meeting the goal.
Thank you for your continued prayers for us.

Post Op Fundo/G tube

Just a quick update- Mitchell is still in CICU. They don't want to move too quickly. The GI surgeon wanted to give his stomach a rest- he is on nutrition via his IV for the night, and they are planning to start his feeding back via his new tube tomorrow. He has been having abdominal scans daily since Friday related to a small amount of blood noted in a few of his diapers; although radiology reports have been negative, we were told today that the GI surgeon was looking at questionable Pneumatosis (a potential issue with gas in the wall of the bowel).
He required a little blood today which is not unusual after his surgery. Other than that, he looks more like himself again- the ventilator was weaned over night & discontinued this morning about 6. A lab value indicative of inflammation was elevated today, but that could be from the surgery as well. Blood cultures were sent last night to rule out infection- the preliminary report was negative.
We are thankful for the close nursing supervision right now & praying for resolution of the intestinal issues.

Out of Surgery

Jodi called over an hour ago to report that Mitchell is back from surgery. Neither of us had computer access at the time, hence the delay in posting this. Thankfully, there were no real complications, just a little difficulty in getting an IV started, but the surgery went well and he's now back in NICU for a short time until everything has stabilized. He could be back in step-down as early as tomorrow. Please continue to pray that his feeding will progress quickly so that he can begin to put on weight.

Father's Day photos

Here are a couple pictures from yesterday; We need to get back to the hotel to load the ones from the other camera, so we'll add one of Mitchell with Daddy later. It's hard to believe that Mitchell is already a month old- he's staying right at his birth weight, but the surgery today should help him grow.

Thanks for praying with us as he is in surgery this morning!

Surgery This Morning

Ted and Jodi are just arriving at the hospital to see Mitchell off for his surgery; it had been scheduled for early this afternoon but was moved up at the last minute. He should be headed for the OR sometime around 10:30 (EDT). Provided that he has an uneventful recovery, it is very possible they will be going home later this week. Pray for his surgery and also for Jean as she is driving the girls back to Pensacola today. Thanks to everyone!

Surgery postponed.

The surgeon just came in and cancelled Mitchell's surgery for today; The OR had already called for him; but I guess he was concerned about having enough time as he needs to leave by 2:30 today.
We are less than thrilled, but trying to be patient. He is "scheduled" for Monday, but we don't have a time yet. Possibly around 1 or 2.
In addition to our nurse today, we have a student; since we have the extra attention for Mitchell this afternoon, Ted & I are going to leave the hospital for a bit.

Surgery tomorrow 11 a.m. EST.

Surgery tomorrow

A time isn't scheduled yet, but we were told that Mitchell's surgery will be tomorrow. We are thankful that he doesn't have to wait until Monday. He should be able to go home by mid week if all goes well.

Why Should I Be Discouraged?

Going into our 6th week in Atlanta, it is easy to get a little discouraged about things. We've been talking this morning as we're sitting in Mitchell's room, and we are counting our blessings. Jer. 29:11 talks about God knowing His plans for us. Looking at our time here, we have a lot to be thankful for:
Mitchell's successful surgery on May 26th with a good recovery. We have been told by many that HLHS post Norwood babies don't always look as good as Mitchell- his color is good, & his oxygen saturations are higher than we anticipated they could be.
His post-op echo looks good as far as his HLHS procedure, and his recovery has been without cardiac complication.
His IVH (brain hemorrhage) has resolved- his cranial scans are "unremarkable", & he is not showing any signs of residual effects at this time.
Clinically he is doing well- just needs be ready to receive adequate nutrition. As much as we would like to avoid another surgery, we are thankful that the fundoplication & G tube should correct his feeding problem.
We have been very thankful that we can all be together as a family during this time. Ted is on his 6th week away from work, & his company couldn't be more understanding. Thanks to mom as well as other family, we have been able to keep the girls with us.
The girls have done very well during this time- they enjoy visiting their brother at the hospital & stay busy being entertained by grandma, Bethany, Hockemas....
We have learned to be patient & are thankful that Mitchell is in God's hands.
Thank you for praying so faithfully for us & for him.
The surgeon consulted this morning for his GI procedures; apparently, his schedule is quite busy. We were informed that he may be scheduled for Friday, and if not if would be Monday. Our CT surgeon is hoping to have it moved up. We will update once it is scheduled & appreciate your prayers during that time.

Feeding Issues

Jodi had a very long night at the hospital with Mitchell, and tonight is Ted's turn. Thankfully, Jean and Bethany are now in Atlanta to help with the girls and give Ted and Jodi a little time together.

The latest news is that Mitchell hasn't shown any significant improvement with the feeding problems he's been facing. The volume has been decreased to the smallest possible amount, and alternative sources of nutrition have been tried. He had an upper GI test this morning which shows that he definitely has reflux problems. It's very common for these babies to have this condition, and when that is the case, a surgery called fundoplication is usually the solution. The surgeon was in late this afternoon and is consulting with other doctors, but at this point it is quite likely that the procedure will be done in the very near future, probably by Wednesday. This will allow Mitchell to receive milk through a G-tube that will be placed directly in his stomach through his abdomen and eliminate the need for the NG tube. While Ted and Jodi aren't thrilled with the prospect of another procedure, it should be a relatively simple solution to his feeding difficulties. He will be able to receive continuous feedings without the discomfort of the feeding tube. It sounds as if he will be fed this way until he has the second cardiac surgery, which will probably be around the end of September.

So, specific prayer requests include a safe and successful surgery, wisdom for the doctors, rest for Ted and Jodi, and strength for Jean and Bethany as they help with the girls for the next few days. Thanks to everyone for your support, concern, and prayers!

Still working on feeding

Just a quick update for those checking-
Mitchell has not been tolerating his feedings well.
He's back to the minimum 12 cc/hr and unfortunately, just spit up a fair amount not long ago.
This morning the doctor stopped the breast milk & changed him to Pregestemil, a formula that is more easily digested than others. He thinks Mitchell could have a milk allergy & wanted to see if it would help.
They re-started the Reglan (a medication to help the GI system) in the night last night when he had 2 episodes of spitting up.
After this last episode, the Nurse Practitioner said if it happens again they will have to stop the feed & put him on IV fluids while they look into things. They sent a sample this morning to check his absorption of his feedings; if it is not adequate, they will need to decrease the calorie of his feeding to help him absorb it. This would also require an increase in volume to reach adequate intake...
It is a bit discouraging for us that we have been in step down for a week without any feeding progress. We are praying that things will improve- that he will be more comfortable & tolerate the feeding better.
Thank you for praying for him & specifically for this need.

Pray for Progress with Feeding

Mitchell vomited twice in the night while on his slower continuous feed. Once last night & just about an hour ago seemed to be related to getting his medicines. When his little stomach is only getting 18 cc/hr; 6-8 cc of medicine pushed in at once is overwhelming. His feeding was turned down to 12 cc/hr for now, and I asked about spacing his medicine. They gave another dose of his Prevacid by itself, and will space the others. Hopefully, this will help for the time being.
After requiring hydration with an IV fluid bolus yesterday, his lungs are a little wet today. It's a balancing act with his hydration status- don't want him to get dehydrated, but the extra IV fluid affects his lungs.
He is definitely having reflux issues, but thankfully no signs of aspiration. The Nurse Practitioner is hopeful that he just needs some time to progress. She is going to change the product used to fortify his milk to a soy product & just take things slowly. Once again, the Speech therapist is put on hold- she'll try a bottle again and bolus once he is tolerating these feeds better. She said the Prevacid could take about 3 days to work. She is also holding his liquid vitamin for a couple of days since vitamins can be hard on a stomach.
He has overcome the big hurdles so far, we're praying he does the same with the progression of his feedings.
Thank you for praying!

Back on Continuous Feed

Just a quick update- Mitchell did not keep all of his feeding down yesterday and ended up a bit dehydrated. This morning they switched him back to the slower continuous feed and added the Prevacid (other reflux medication). The plan was to attempt the bottle and bolus again tomorrow, but he did spit up a couple of times today (smaller amounts/not as concerning); however, he needs to be able to tolerate the slow feed to advance. This is not a big surprise as babies s/p his big surgery tend to have feeding issues; but we are hoping he can tolerate a bit of a progression.
On a continued positive note- follow-up cranial ultrasound showed even more improvement today- "unremarkable" is the term used by the Radiologist. No evidence of a bleed; still monitoring to ensure no added pressure since the event- possibly still a little swelling on the scan, but the Neuro-surgeon did not indicate concern. Praise the Lord for quick resolution of his hemorrhage!
Continue to pray for his feeding issues as well as strength for the family. Jodi hasn't left Mitchell since Sunday & is getting a little tired. The girls enjoyed their time in Athens with the Hockemas & are back with Daddy tonight. Jodi is eager to see them in the morning.
We can't thank you enough for your support- your prayers for Mitchell mean so much to us.

Baby Steps

Mitchell's oxygen, pacer wires and chest tube sutures were all removed. Doing well on room air. Need to work on feedings- he had his first bottle attempt today- took 15 cc (3 tsp) over 15 -20 minutes, then the rest was started via his feeding tube as a bolus ( a larger amount over an hour vs. the continuous smaller feed). He spit up a moderate amount with the first bolus- praying he does better tolerating the feedings as they progress. We'll keep trying the bottles every 3 hrs, then following with the tube feeding. We understand this is a strict every 3 hrs around the clock, so we'll have to adjust & be ready for keeping up with everything at home.
We keep hearing that he should be ready to go within a couple of days, but we do need to get his feedings a little more stabilized as it is important that he stays well hydrated & receives adequate calories.
His spitting up episodes seem to be connected to getting congested, but he does seem to be demonstrating reflux- he's been on Zantac for a few days, & they may try Prevacid as an alternative. We may just need to slow things down a little- continuing to try to bottle, but slowing down the "bolus" to not overwhelm his stomach.
Thank you for all of your messages and encouragement. We appreciate your support.

Progress Report

We don't have a lot to report, but know that many are watching for updates.
Mitchell has been in step down since about 4 yesterday afternoon. Ted took the first night shift- that is what it turned out to be; he didn't really get to sleep. Jodi is hoping for a less eventful night tonight as she stays at the hospital. Before leaving the CICU, Mitchell was able to have his 2 femoral lines removed. He currently has his PICC line (alternative to a regular IV), his feeding tube (NG) to his stomach; and he is almost done with his oxygen via a nasal cannula. At the moment it is just a little flow of regular 21% room air. He should be off of the oxygen before morning.
He has had a couple episodes of "spitting up" / reflux? (once last night & once just about an hour ago). It seems to be connected to getting congested. Otherwise, he has been tolerating the feeding well. They will be trying a bottle feeding tomorrow. Depending on the feeding progress, we could be heading home later this week.
We will be attending a Discharge Planning Class & Infant CPR class tomorrow in preparation for going home.
Thank you to Shawnna for watching the girls yesterday & this morning; and to Bruce & Michele for picking up the girls today for a visit at their house in Athens. We will miss having them the next couple of days, but our schedule is staying quite busy now that Mitchell is in the step down. We were getting a little tired as well; so I'm sure they will have more fun at the Hockemas!
We may not have a lot to report in the next couple of days, but will try to keep you all posted on Mitchell's progress.
Thank you again for your prayers and support.

Moving Up to Step-Down!

The title is more or less self-explanatory; Mitchell is doing well enough to be moved out of NICU later today. He needs a little blood to get his hematocrit count to where it should be, but otherwise he's ready to go! He is still being fed via a N/J tube but is receiving 18 cc/hour, a big improvement over yesterday.

We will post if there is additional news today, but we're hoping for a non-eventful move as he gets adjusted to a new room. Please continue to pray that God's working in this situation will bring glory to Him.

More Improvement

Mitchell has certainly had an eventful life in just over two weeks! It occurred to me that many adults have had fewer procedures in a lifetime than he has already endured. Last night, his nurse was concerned that his pupils were not equal in size, so another ultrasound was ordered. Rather than being an inconvenience, it has resulted in a better diagnosis, neurologically, than had previously been reported. The neurosurgeon, or neurologist, not certain which, did not see any blood in Mitchell's ventricle. This news is both very encouraging and important in anticipating what he might be facing developmentally.

His chest tube was taken out this morning - a planned removal this time! - and now he has four remaining lines and a feeding tube in place. Because of some problems with feeding, he will be treated for acid reflux. Jodi is hoping that by decreasing the amount and then increasing it more gradually this may not be an issue for him. He will most likely stay in NICU for at least another day or two as they work on resolving the feeding problem, but things are progressing well.

Michele Hockema drove over from Athens today to entertain Madison and Mackenzie. She must be a very put-together type of person, because she bought the girls donuts on what happens to be National Donut Day. Very impressive! Shawnna will be arriving tonight and "playing" with the girls for the next couple of days and giving Ted and Jodi a little time together. Pray that Mitchell will continue to improve in every way and that the family can have a somewhat relaxing weekend. Thanks again to everyone for your concern and continued prayers.

Pain but Gain

Mitchell has had a fairly good day today; his heart lines were removed, and the time when there was the greatest likelihood of bleeding has passed. Mitchell, if he could talk, might differ with this evaluation of the day's events. The anesthesiologist had difficulty in starting a second IV which the doctors felt would be prudent, and, after many attempts, had to start a femoral line. It's hard to think of a tiny baby enduring what he has in such a short time, and seeing it firsthand cannot be easy. Jodi sounded good when I talked to her, but, being the bossy mother/mother-in-law that I am, I couldn't pass up advising them to have an early dinner and get everyone to bed as early as possible. The past two days and the waiting involved have been draining.

It was so nice that Pastor and Mrs. Cooley from Burgess Road Baptist, Ted and Jodi's home church, were able to be with them for part of the day. I'm sure their presence was a great encouragement. Jean and Bethany have probably arrived back in Pensacola by this time.

Will keep you updated with any news, but we are praising God for the progress today - he will probably be transferred to the step-down unit in a day or two, and then the five of them will finally be able to spend some time together.

A Very Long Day!

This will undoubtedly be remembered by Ted and Jodi as one of the longest days of their lives!

It began with another CT scan to check for possible changes in Mitchell's brain; the hope was that there would be none. Thankfully, this was the case, but the family had to wait the entire day to get these results. Both the neurosurgeon and neurologist now agree that the hemorrhage was not a Grade IV. This is very encouraging news as far as what they can expect developmentally in the future. While neither of the doctors are able to predict with certainty what Mitchell will be facing, the reclassification from a IV to a probable III is very significant.

Another slight bump in the road occurred when the nurses attempted to start a regular IV line but weren't able, and this required the insertion of a PICC line. I'm fairly certain Jodi said they made six attempts before being successful, but it is now in place. The next step was to extubate him; Jodi just called to inform me that this has been accomplished - very good news! The central line should be coming out tomorrow; there is a chance of some bleeding with this procedure, so we would appreciate prayers that this will go as smoothly as possible. His chest tube will probably be removed in a day or two. Even though this has been a setback of a couple of days, Mitchell seems to be back on track and the neurological reports are much more encouraging than they were previously.

Needless to say, Ted, Jodi, and the rest of the family are physically and emotionally exhausted tonight. Jean and Bethany will be returning to Pensacola tomorrow; they will surely be missed, and everyone has greatly appreciated their help, and the help of many others, through these past couple of weeks.

An accidental set back, but an unexpected positive

We had thought that Mitchell would be moving to Step down today- the cardiologist felt he was ready; however, Mitchell's nurse accidentally pulled out his chest tube when changing his bed. Even though this would have been on the agenda to do today, it wasn't done in the right manner. He ended up with air trapped under his diaphragm, causing difficulty breathing. As a result, he was re-intubated and a new chest tube was placed.
It is a little difficult to see him back on the breathing tube and sedated again, but we are praying that they will be able to remove the breathing tube by tomorrow.
Specific requests:
Being on the ventilator again isn't ideal for his little head or his overall progress- pray the weaning process goes as well as it did the first time. We could expect him to be extubated as early as tomorrow if everything goes well.
Pray that Mitchell remains comfortable and free of pain- the air trapped in his chest can be painful as well as the new chest tube placed and the surgical recovery.
He was already receiving feedings and had milk in his stomach; we are praying that he does not aspirate into his lungs.
Pray for our nurse today- this made us a little uncomfortable.
Continue to pray for the bleed in his brain- the neurologist came in this morning, and he said that it was not a grade IV as we were told yesterday. He said that it had not left the ventricle. We are still waiting on a follow-up US or CT and praying for it to be stable.
They need to place a peripheral IV before they pull the central lines, & they have been unsuccessful their last couple of attempts. Pray that they can get an IV line without too much difficulty next time.

Thank you for your continued prayer and support!

Update on Mitchell

Ted and Jodi have asked me to post the latest information regarding Baby Mitchell. As you have probably read, he did have a seizure on Friday night. The initial ultrasound indicated there was some bleeding on one side of his brain. This morning, a second ultrasound confirmed that and also that there were some changes, which necessitated a CT scan. The scan, sadly, shows that he has suffered a grade IV ventricular hemorrhage. A neurologist will be reviewing the scan this afternoon as well as consulting with the cardiologist to determine the best way to proceed with his medications, particularly the blood thinners which he needs for cardiac reasons. It isn't known for certain whether the stroke and seizure were even connected; apparently it's not impossible that they were isolated events.

There is some very good news concerning his general condition. He has been completely off the ventilator for over 24 hours, and he is now able to receive milk through a small feeding tube. His cardiac recovery has been truly remarkable. It is even possible that he can be moved to step-down by Wednesday; it is rare for babies with HLHS to be moved from NICU so soon after the Norwood procedure, and we are very thankful for this wonderful progress.

We have comfort in knowing that Mitchell is in God's hands, and that his future is already determined. In spite of this, the uncertainty that Ted, Jodi, and the rest of the family are facing is not so simple from a human standpoint. Please continue to pray for all of us, particularly for Ted and Jodi, that they will have confidence that what happens will bring glory to the Lord, and that we will all learn from this to trust in His love and wisdom.