Resoivoir Surgery

I thought it was time for another update on our sweet Seraya!     

Last week Monday Seraya went for another surgery. I know I had wrote earlier that it was Dr. Ajani's plan to leave the resoivoir in for a couple months, but he decided he wanted to take it out now. The reason was because a lot of fluid was still pooling in the resoivoir creating a large bump on her head. This fluid was building up because there was a small hole in the brain ventricle from the resoivoir. Whenever Seraya would cry, fluid from the ventricle would fill up into the resoivoir. Her shunt is inside the ventricle and so that's why this fluid wouldn't drain, because it was outside the ventricle. The surgery went really well which we were so thankful for! Dr. Ajani was able to remove the resoivoir and block the hole where the resoivoir had been. Once again God answered our prayers and guided the hands of the surgeons! All praise be to Him!! 

Seraya is on low flow breathing help right now. Basically she is just receiving a little bit of oxygen to help her breathe, but not receiving any pressure to keep her lungs open anymore. We are so happy that her lungs have come this far after so many difficulties! We are pretty sure she will come home on oxygen.

With Seraya being on low flow, I am able to breastfeed her now. This has been such a rewarding gift after all these months of pumping:) She does not have the full endurance she needs yet, to consume an entire feed, which is 87 mls at the moment. Usually she will drink for about 20-30 minutes and take in about 40-50 mls which is still amazing for her to do. It takes a lot of strength for her to orally feed, but so far she has surprised everyone with how well she is doing:) I try to feed her at 9:00 am, 12:00 pm, 3:00 pm, 6:00 pm, and 9:00 pm. She still has an ng-tube in and so they top her up with that, or we try to top her up with a bottle, if she will tolerate it. The three feeds through the night, she was being fed through her tube, but just recently, we asked the nurses to start feeding her bottles through the night. We are hoping this will improve her ability to do complete oral feeds. We hope for her to be on full oral feeds when we go home, but we are not sure yet. She is currently weighing around 9 pounds 10 ounces!! Her weight gain continues to be really good which is a blessing! 

Brian and I continue to be amazed at how far Seraya has come. She is starting to be more alert and showing us some character. She can have quite the temper when we are changing her:) We are so thankful at how God has allowed her to come this far, despite all the obstacles she had to face in her life already. She's a little fighter and we call her our miracle baby. She is our amazing gift and we are so thankful for her. We are really hoping we are on the road to home, but we have not been given any dates yet, so we shall see:)

We would like to thank everyone for their prayers, cards, gifts and words of encouragement. We appreciate everything so much and are so thankful to be part of the communion of saints:)

Psalm 145: 13b,14

"The LORD is faithful to all his promises and loving toward all he has made. The LORD upholds all those who fall and lifts up all who are bowed down."

Shunt Surgery

Psalm 100:5

“For the Lord is good and his love endures forever; his faithfulness continues through all generations.”

Seraya has been doing good the last couple of weeks and there has been a big change for her this week.
She had a reservoir in her head which the doctors had been monitoring for a  couple of weeks now. Up until last week it had remained stable and seemed like it was draining the fluid, to prevent pressure from building up. But last week Wednesday, they did a head ultrasound and noticed that the ventricles inside her brain were a lot larger than they had been two weeks ago. So, they called a neurosurgeon to come up and take a look at Serayas reservoir. Dr. Ajani who was the surgeon who installed the reservoir, came up and examined her. He instantly noticed that there was pressure that had built up, as the area at the top of her head, where the reservoir was, was bulging and tense. He had to tap into her reservoir , and removed 32 mls of csf fluid to relieve some of the pressure. During and after this procedure, Seraya had several heart rate drops and started desatting quite a bit. So, they bumped up her oxygen and provided her with a little more pressure through her opti-flow. After a couple of hours she settled out and was more stable again. He ensured us that the reservoir was no longer working and that he would have to insert a vp shunt within the next couple days. A ventriculoperitoneal (VP) shunt is a medical device that relieves pressure on the brain caused by fluid accumulation. VP shunting is a surgical procedure that primarily treats a condition called hydrocephalus. This condition occurs when excess cerebrospinal fluid collects in the brain’s ventricles. CSF cushions your brain and protects it from injury inside your skull. The fluid acts as a delivery system for nutrients that your brain needs, and it also takes away waste products. Normally, CSF flows through these ventricles to the base of the brain. When this normal flow is disrupted, the buildup of fluid can create harmful pressure on the brain’s tissues, which can damage the brain. Doctors surgically place VP shunts inside one of the brain’s ventricles to divert fluid away from the brain and restore normal flow and absorption of CSF.

Brian and I had a meeting the following day with the neonatologist and the neurosurgeon, and they informed us that the surgery would take place on Monday, April 18th. 

She was doing good up until Friday early in the morning. The nurse went to handle her around 3:00 AM, but noticed that the blanket under her head was all wet. They quickly figured out that the puncture hole they had made with the needle, when they tapped her, had re-opened due to pressure that had built up again. The csf fluid continued leaking until they glued it shut with dura bond. Once it dried, they put a second layer on to ensure it stayed closed, and to prevent further leakage. Once again she started having clusters of heart rate drops, and started desatting a lot. They bumped up her oxygen and pressure again to help her body adjust to the change. They figured she lost 36 mls of csf fluid from the leak. Her reservoir was still bulging a little, and so Dr. Ajani came up around 11 Friday morning and tapped her again. He wanted to relieve as much of the pressure as he could to ensure that she would not leak again before Monday. He took out 18 mls of csf fluid during that tap. They started her on a broad spectrum antibiotics, just to be cautious and to prevent any type of infection, particularly meningitis from setting in, as her head was exposed during the leak. They also started her on ivs to replace all the fluid she lost during these taps and from the leak. She remained stable over the weekend.

Monday at 1 o'clock she went down to the OR, for her shunt surgery. She was in and out within an hour and a half, which we were happy about. We talked to Dr. Ajani afterwards and he said the surgery went really well with no complications. Once again we were so thankful that God blessed the hands of the doctors, as they worked on our little girl. All praise be to God for answering our prayers again! They did leave her reservoir in for now, as there was quite a bit of fluid in it, so he said if they had removed it, it would have been too much of a shock for her body. He will have to remove the reservoir at a later date. They wanted to be very cautious with her this time, just because after the last surgery she was so unstable for awhile. 

Currently she is recuperating nicely. They extubated her yesterday and put her back on opti-flow. She is back up to her full feeds, which means she is iv free:) She is still being fed through a ng-tube, as she is not able to orally feed yet. Her food is now being pumped into her, over an hour. She has been handling this really well. She is weighing in at around 8.5 pounds at the moment, but does have a little extra fluid on board from the surgery. They have stopped her antibiotics, as all her blood cultures have come back negative, which means no infection:)

Brian and I are extremely thankful she is doing so well after her surgery. We are continually humbled at how we have such a gracious and loving Father, looking after us. We are amazed at far she has come and for Gods goodness in our life. He continues to watch over her and us, and provide us with the strength we need to continue on our journey with Seraya. We are happy the shunt surgery is over, as this, is one step closer to going home!! 

We would like to thank everyone for their continued support and prayers for our family. We appreciate this very much!! 

Psalm 95:7

“For He is our God and we are the people of his pasture, the 

flock under his care.”

Wednesday March 30, 2016

Since the last blog post there have been some great improvements with Seraya!

The first thing is that she graduated to a different pod which is for babies who only need to receive intermediate care. She is no longer in need of intensive care which is great! We have a window seat which is really nice. We like this a lot better than her old spot:) Praise be to God for this incredible blessing that she can be one step closer to eventually coming home!!

Seraya is still being fed every 3 hours from a ng-tube. She is now up to receiving 60 mls per feed. It is still pumped into her over a 2 hour period and so she only gets an hour break between her feeds. She has been steadily gaining weight and so last week they discontinued most of the extra fortifiers they were adding to my milk. Currently they are only adding a human milk fortifier. We are grateful that she continues to gain so well, as she has still has to work hard to breathe and so her body uses a lot of her energy on this. Currently she is weighing in at around 6 pounds 8 ounces:)

Another big change for Seraya is that they switched her to an opti (high)-flow breathing machine instead of cpap. This machine still provides some pressure to help keep her lungs open. She is also still requiring around 30-35% oxygen. Brian and I are enjoying this alot more than cpap, as there are less tubes. It is easier to take her in and out of bed which is great. We find that she seems to be a lot more comfortable on this type of machine as well.

So far they have not had to tap her resoivoir at all, as it has been helping to drain the fluid properly from her head down her spine. Each day the neurosurgeon comes up and takes a look and feel of her head, but so far he has felt no pressure. We are very thankful for this good news. Eventually she will need this resoivoir taken out and they will put in a shunt which will be permanent. But we are not there quite yet:)

She had an ultra sound done of her kidneys. When a baby is born as premature as Seraya was, they want to do routine checkups of their organs just to make sure they are functioning properly and are not damaged due to the effects of being born so early. The results showed that her kidneys seemed to be functioning properly! We were very happy to hear this news.

Last week we were able to give Seraya her first “real” bath in a little white tub. This was very exciting for us, as it shows she is getting stronger and is able to tolerate more. She seemed to enjoy it very much and hardly cried at all. We bathe her every other night.

We continue to be thankful for the progress Seraya continues to make, as each week goes by. She is slowly becoming stronger and continues to grow. In the coming weeks we hope that her lungs will continue to grow and develop, so she will be able to go onto a low-flow breathing machine. Once she is on this, she will be allowed to start oral feeds. We are starting to very much look forward to being able to take our daughter home. We would like to thank everyone once again for their prayers, gifts, cards and words of encouragement. They are always very appreciated and are a great comfort to us. 

Psalm 57: 9-11
"I will praise you O Lord among the nations; I will sing of you among the peoples. For great is your love, reaching to the heavens; your faithfulness reaches to the skies. Be exalted, O God, above the heavens; let your glory be over all the earth."

Saturday, March 5, 2016

It has been quite a trying week for our sweet Seraya. Each week they have just been monitoring her head with ultrasounds to make sure the fluid was draining. Once a week her nurse would measure her head circumference as well just to make sure it wasn't increasing rapidly. So far there had been no change which we were really happy about. But this Monday morning I was holding her when the neurosurgeon came up to examine her head. He immediately said she would need surgery as he could tell she had pressure building up. A few of the signs were, her fontenelle was bulging and it was tight at the top of her head. So they explained the procedure to us. 

Basically what they had to do was relieve some of the pressure on her brain. So they inserted a ventricular reservoir to help drain some of the fluid. A reservoir is tubing which allows the doctors to remove extra fluid from the ventricles that may be causing pressure. They insert a small needle into the reservoir and extract fluid that way. This will continue to be done whenever necessary, or whenever she has pressure building up again.

The surgery would only take about 30 minutes we were told and they said it was quite a straightforward procedure so we weren't too concerned. Brian and I took turns holding her up until 8 o'clock Monday night which was when the surgery was supposed to be. It ended up being a little late and she was rolled into the OR at around 8:45. We waited patiently for it to be over and hear how she did. She came out at 10:15 and they told us that it had went really well with no complications. What a relief this was to hear. 

Seraya was doing good after the surgery, but her heart rate was over 200. They thought this could be because she had pain and so they started her on fentanyl. Brian and I left her for the night around 2 AM Tuesday morning as they ensured us she was doing good. Her heart rate had come down a little to about the 190's. As the night went on Seraya started to decline very rapidly and they were not sure why. Her head continued to grow and she was needing 95-100% oxygen all night. They tried her on a few different ventilators doing their best to try and stabilize her. She was given 2 blood transfusions and a platelet transfusion. They started her on a broad spectrum of antibiotics just to cover all bases in case she was developing another infection. They inserted an arterial line in, so they could monitor her blood pressure at all times as it was all over the place. Her one lung had totally collapsed and a part of her other lung. This is why her breathing was so unstable. They also gave her a dose of hydrocortisone steroids to help relieve some of her stress. They put her back on high pressures to re-open her little lungs. The nurse called us back at around 5 AM as they weren't sure what else they could do for Seraya. Things were not looking good! The doctors and rt's spent all night around Serayas bedside doing everything possible they could to help her. It was extremely difficult to see Seraya in the shape she was in when we arrived, as she had been doing so well before her surgery. She had 3 ivs in her little body and did not look herself at all. They had given her a paralytic to keep her completely still. But as the morning went on she slowly started to stabilize. She was able to continue to go down on her oxygen slowly as her lungs were blown up again. Her head had stopped growing. As the day went on things started to improve with our sweet baby girl once again. The next day she was alot more stable, so she was switched back to cpap, as she had been intubated for the surgery. She is back on a pressure of 8 which is what she was on before surgery. They started feeding her again on Wednesday also which was great as then she could be off the iv feeding. Her head circumference went down, and after the surgeon examined her head, he ensured us that the reservoir was working! What a blessing this was! We did not think something this serious and scary would happen with her again, but it just shows how she is so completely in Gods loving arms at all times. Brian and I are so very thankful once again for answered prayers!!

Serayas eyes have continued to stabilize. She is still receiving weekly eye exams and so far they have remained a stage 2 instead of a stage 3 which is good news!

She is currently receiving 38 mls of milk which is pumped into her over 2 hours. She is fed every 3 hours and so basically she is always being fed:) She is gaining nicely and currently weighs around 5 pounds! She's getting nice and chubby.

Praise be to God for his great love toward us. He continues to watch over Seraya and enable her to continue to grow and get stronger. He also continues to provide Brian and I the strength we need to continue on this roller coaster we have been on. We would like to thank everyone for all their continued support and prayers for our family. It is very greatly appreciated!!

Isaiah 40: 10-11

"See, the Sovereign Lord comes with power, and his arm rules for him. See, his reward is with him, and his recompense accompanies him. He tends his flocks like a shepherd; He gathers the lambs in his arms and carries them close to his heart; He gently leads those that have young."

Thursday, February 18, 2016

Seraya has continued to make small improvements last week and this week!

Seraya is doing well on her cpap so far. She is current on a pressure of 12 to keep her lungs open. At one point last week they tried to wean her pressure down to 11 but Seraya didn't tolerate it very well. She immediately started desatting and so they turned her back up. She is very dependent on extra breathing help still at this time. 

Seraya received another eye exam this week Tuesday. The eye doctor explained to me that she could see that Serayas eyes were not growing properly, or I should say the blood vessels were beginning to grow crookedly already. So on Wednesday Seraya was given an injection of avastin in both eyes to stop the blood vessels from growing crooked. Today the eye doctor checked her eyes again and she said there are no complications from the injections and for that we are extremely thankful. Seraya will continue to have weekly eye exams, so they can continue to monitor the growth of her eyes.

Seraya wasn't gaining enough weight and so they added some extra fortifiers to my milk. They did not want her losing weight as they ensured us that this would not be good for the development of her lungs. In order for her lungs to continue to grow and develop, she has to continue to grow and gain weight. Lately she has been gaining about 30-40 grams every night. They switched her feeds to every 3 hours and they are pumped in to her over an hour and a half. She receives 30 mls every 3 hours. Currently she is weighing in at about 3 pounds and 9 ounces. We are very thankful that the Lord continues to enable her to grow and become stronger. What an immense blessing this is:)

I know that the last blog post I talked about the steroids she was given. They have completely weaned her off of the steroid doses, and are waiting to see how she does with this. We are hoping her lungs continue to grow stronger without the help of another round of the hydro-cortisone steroids. 

We continue to be able to enjoy lots of snuggles with Seraya which is amazing. It's a lot easier to take her out of the isolette now, without the worry of extubating her now that she's on cpap. If her prongs fall out we can just stick them back in her nose:)

 

 I know in the last blog post I had also mentioned about her bilirubin levels and platelets improving. The bilirubin levels have continued to come down which is wonderful. The ursodile medication she is on seems to be helping. Her platelets have continued to come up on their own as well. They are currently sitting at 118 which is a good number for her.

Brian and I continue to be thankful and amazed at how far Seraya has come in these last few weeks. We still have a long road ahead of us, but we are grateful for how she is doing. We truly see God's loving hand in our lives, and see how he continues to give us the strength, to travel on this road we are on. Once again we would like to thank everyone for their continued support and prayers for our family.

Psalm 57: 9-11

"I will praise you, O Lord, among the nations; I will sing of you among the peoples. For great is your love, reaching to the heavens; you faithfulness reaches to the skies. Be exalted, O God, above the heavens; let your glory be over all the earth."

Monday February 8, 2016

Since the last blog post there has been some great improvements with Seraya! The LORD continues to hear and answer our prayers! What a blessing!

Since Seraya was born, she has been intubated on a high frequency oscillator to assist her lungs and help her to breathe. She was on high pressures with this machine to help keep her underdeveloped lungs open and keep them from collapsing.

The doctors were not seeing enough of an improvement in Serayas lungs and so they decided it was time to intervene. They started her on doses of hydrocortisone steroids to speed up and help the development of her lungs. They assured us that we would see these results in 2 days and they were right. Seraya was given her first dose of steroids on Thursday when she was on a map (which is pressure) of 12 on the oscillator. On Friday morning she seemed to be doing well and so they weaned her map to 11. She continued to do well and did not require any extra oxygen which they thought might happen. So by Friday afternoon they weaned her map again to a pressure of 10:) Again she surprised us and did really well, so we could clearly see the steroids were helping. So, by Saturday morning, they wanted to switch  to cpap, which would mean extubating her! We were very excited to hear this, but also a little nervous for the procedure. Cpap is when two little prongs are inserted into her nose and she receives her pressure and oxygen that way. When she was on the oscillator she had a breathing tube going through her nose all the way down into her lungs. Right now she is doing well on the cpap and is currently on a pressure of 13 and in about 30-35% oxygen. We are relieved that she has finally moved into cpap as it is a lot less damaging to her lungs.

Also I know that in the last blog post I mentioned about the problems with her bilirubin levels. For the last two weeks they had remained the same and hadn't improved at all. So late last week they decided to start Seraya on a medication called ursodile. The doctors were not sure but thought maybe she had a blockage in her liver. The Med was supposed to help break down the blockage and help her to excrete the bile that had built up. They weren't sure if this would work. This morning I received some great news. The conjugated part of her liver has finally started to come down. Last week the number was over 200 and today it had come down considerably to 137:) We were extremely pleased to hear this! We will see over time if her liver continues to heal and begin to function properly.

Also her platelet count has been a concern for a couple weeks now, as they had continued to drop. But, today I received the good news that her platelet count had went up. Last week her count was around 50 and today it was 60 which is great, as they have never went up on their own before, without the doctor giving her a platelet transfusion. This number is still low however, as it is supposed to be around 150. Again with time we will see if this issue is beginning to resolve. Praise be to God for his goodness!

Seraya had received another echo last week and they discovered that her heart pda has re-opened and is about a moderate size right now. However it does not seem to be having any negative effects on her as of yet, and for that we are thankful!

 She received her first eye exam last week Monday but unfortunately it was unsuccessful, as they were not able to see anything. They said her eyes were too hazy at this point to see her blood vessels. She will continue to receive eye exams on a weekly basis. 

Seraya continues to tolerate her full feeds at this time. She is currently receiving 20 mls every 2 hours. She is gaining nicely and is weighing about 3 lbs 4 oz at the moment. 

Brian and I are very thankful and pleased at the progress Seraya has made within the last two weeks! Thanks be to God for his steadfast love and goodness in our lives. We continue to covet all the prayers that go up for our little family. We know we could not continue on this journey alone!!

Psalm 92: 4,5
"For you make me glad by your deeds, O LORD; I sing for joy at the works of your hands. How great are your works, O LORD, how profound your thoughts!"

So I know it has been awhile since the blog has been updated and so I thought I would update everyone on what has been happening in the last couple of weeks!

Seraya has been quite stable these last couple of weeks. She hasn't had any extreme incidents. Her breathing has been around the same though they continue to try and lower the pressures from the ventilator on her lungs. Current she is at a pressure of 15 which is good for her as two weeks ago she was on a pressure of 19. She is currently still on the high frequency oscillator as her lungs have a lot of growing and maturing to do yet. We had a meeting with the doctor last week and they were hoping to try and switch her to cpap this week. I don't think this will go well as she seems very dependent on the ventilator still. I am not sure if their plan of cpap will happen this week yet as she has been having a lot more desaturations lately with her oxygen etc. Overall we do see a lot of improvement in her lungs and for that we are so thankful and continue to see God's hand in her life!

She has been on a few more rounds of antibiotics over the last couple of weeks for various infections. Again they weren't able to pinpoint exactly where the infection was coming from and so each time they put her on a broad spectrum antibiotics to ensure all bases were covered. Currently she is free of any infection and not on any type of antibiotics, another reason to be thankful!

The concern of Seraya's bowels has improved immensely over the last couple of weeks. She is currently up to her full feeds which is 16 mls every 2 hours. They feed her through her gtube and it is pumped into her stomach slowly over an hour each time. She seems to be tolerating her feeds beautifully and growing!! As of last night she has doubled her birth weight and is sitting around 2 pounds 12 ounces:) The extra weight she has gained is quite visible in her cheeks and body as she is starting to look chubby and a lot more filled out:) She is pooping regularly and her stomach is no longer blue or distended. She seems to have overcome this hurdle in her life. Praise be to God for this immense blessing!!

Seraya continues to receive head ultrasounds but so far they have remained the same since her birth. Her bleeding has not become worse and has not started up again which is great news!

Seraya no longer has a picc line as they had to remove it early last week due to there being a blood clot at the end of the line not allowing it to work properly. We were not happy to see this happen as we knew it meant a lot more pokes for her with pivs. She has a lot of bruises over her small body as her veins are so tiny and so it was not easy to insert an iv line into her veins. It would often take 3 or 4 tries before they would get the needle in:( it was not easy to see her be poked continually and not be able to pick her up to comfort her. But at the same time we knew she needed to have this done. On another note she is completely iv free today as she is up to full feeding and is done antibiotics:)

They have not been able to insert a new picc line in yet as her platelets seem to keep dropping. They are not sure why this is yet as platelets  usually drop due to infection or a blood clot. She doesn't have an infection and her blood clot hasn't got any bigger. The medical team will continue to monitor her closely to see as to why they are dropping.

Another new thing that they want to start this week on Seraya is eye testing. We all have blood vessels growing in the back of our eyes behind our retina. Now these blood vessels are supposed to grow straight but often what happens in premature babies is the vessels will begin to form crooked which will cause problems with her eyesite. This is because they are born so early and they're eyes are exposed to light a lot sooner than they are supposed to be. If they see when she is examined that her blood vessels are in fact growing crooked there is a treatment they could give her. We are not sure what this treatment is yet as we have to wait and see what the results of her eye test are first.

The last thing I wanted to mention is our snuggles with Seraya. Since she is more stable the nurses are fine usually with her coming out for skin to skin once a day if she is doing good. This is our favourite part of the day! When we get to hold her it is for at least 1.5-2 hours or more as it is quite the ordeal to get her set up on our chest:) They have to work around all of her wires etc. and she still is not totally pleased when she is moved around a lot. She tends to desat when she is jostled around but then quickly settles down when she is in our arms! It is amazing to be able to hold her and give her comfort in this way!

As the weeks pass by we fall more in love with our sweet Seraya:) We are so thankful for the time we have been able to spend with her so far! We see how small and fragile she still is and know she is so completely in Gods hands at all times. We continue to put our trust in God, and take life day by day as we do not have to worry about tomorrow! We continue to be amazed and thankful for the medical team and all the equipment which God has allowed  and provided to take care of Seraya! She is a tremendous blessing in our lives and we feel so blessed that we were given such a wonderful gift!

We would like to say thank you again for all the prayers, words of encouragement and support we have received so far! We appreciate this all so much and know that we could not face this journey alone!


"I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord." Ps 27: 13,14