The hard yards

Hi all,



Sorry it's been so long since the last post. Abbigail was discharged on the friday after her surgery. We had to starve her for 5 hours before the surgery, which went well, and had the expected result. She was very dopy but still rather sore straight after surgery, and then only had a little feed off Sarah, and then struggled to get any kind of routine going straight after the surgery. That night was not fun. She woke every hour of so, and would only drink a little bit each time. But friday was better, she finally had a good feed in the afternoon, and they decided to discharge her at that point. She wasn't really happy that night, but Saturday was a great day, she slept and fed well, until the night which again wasn't one of her best, and then Sunday we struggled through. She was increasingly agitated and was very grizzly. She didn't eat well, and we had a really nasty night with her. Then on monday she just refused to drink. Sarah couldn't get her to take anything off her, and she would scream whenever Sarah put her to the breast. I came home from lunch and essentially tried my whole lunch break to get her to eat. Nothing doing! We luckily had our first appointment with her pediatrician that afternoon, so I took time off for it to be there with Sarah. And just as well too. She was inconsolable. She litterally cried the whole hour that we were there. Did I say cry - I meant SCREAMED. I had to take her out of the consultation room for at least half of the appointment so that Sarah and the pediatrician could talk. The pediatrician was great. He was very concerned for her, and one of the things we wish had been done differently with the surgery was that she was weighed immediately before the surgery, but not immediately afterwards. So with all her weight gaining issues we were now completely in the dark as to exactly how much weight she had lost since the operation. She weighed 4.0 kg (I think) immediately before the surgery, and then four days later she weighed 4.8kg because of the cast she was wearing. And we had no idea how much weight she had lost. We know she lost weight because she drank very little, and also she was starting to be able to wriggle around in her cast. We could litterally slide our hands down the front of her cast! So he decided that she needed to be admitted to the children's ward again to be monitored and fed nasogastrically if need be. We got there at about 5pm, and at about 8pm we saw an intern doctor who basically took a history (do interns do anything else?) and then we were left to continue to try to feed her - she refused the breast point blank, and we had to resort to using a dummy to quiet her and soothe her, and then switch it for the bottle - she took some but very little. Over the next day we continued to struggle to get her to drink, and she continued to loose weight. So they eventually tubed her and this allowed us to attempt to breastfeed her and top her up as needed. Which was quite frequently. She has been put on omeprazole 5mg twice daily, and they have stopped the ranitidine, as the pediatrician suspected that it may actually have made her reflux worse. She is on daily weighs, and has had two days where she hasn't put on weight, but also hasn't lost weight. There is little more we can do other than struggle through, but they are going to do some investigation on monday to see what more they can find. They may do a gastroscopy (camera down to stomach) and may biopsy the lining of the osophagus to check for issues. So she is spilling a lot less, but still screams when sarah tries to feed her from the breast a lot. Sarah is struggling with this a great deal, and understandably. we are greatful that she is able to express and keep up with Abbigails needs that way. She doesn't just cry, but screams like she is in pain.

Hopefully we will find out more information with the new week that will help us to get to the bottom of the issue.
Abe

Surgery in 2 hours...

Hi all,

I can't believe what has happened in the last 24 hours...

Let me begin the story last week...

Abbigail had an appointment at the hospital last Thursday to have her Hip joints ultrasounded as a routine check to make sure that she didn't have a congenital hip defect that her cousin had. We had previously had 2 paediatricians, 1 orthopaedic surgeon, 1 GP, 1 nurse and 1 Midwife look at her hips and say that they felt she was fine as there was no audible click on performing the usual tests on her hips. So we thought everything was fine...

At the hospital the ultrasonographer had no problem doing the right hip, and that was fine. So they moved on to the left hip, and had trouble getting a clear picture because Abbigail was quite upset and squirming so much. The ultrasonographer got a little annoyed and got peed on for her trouble. (Haha! Serves you right for hurting my daughter!) After waiting an hour for the orthopedic doctor to see her, the call was made to give her a brace to ensure her hips were in the proper place. After searching for a brace her size they came up empty handed and so Sarah was told to bring her back next week when a brace would be available, and they would try to do the scan again.

So fast forward to yesterday... The head orthopedic surgeon was present to inspect Abbigail's hips. He immediately diagnosed a dislocating hip due to a really shallow hip socket, and a tendon that was too short that would continually pull the ball out of the socket when attempts were made to relocate it into the joint. Apparently it is possible for a joint to be fine at birth and slowly degenerate over the first couple of months. Apparently the only option is to operate. And so she has been scheduled for surgery today!!! She is on the emergency list, so we are hoping and praying that she doesn't get bumped by something more serious. We are currently starving her so that she can have the general anaesthetic, she is currently an hour overdue for her feed, and she is currently handling things, but we know all hell is about to be unleashed as she has at least another two hours to wait before her surgery.

After her surgery she will need to be in a CAST for 18 WEEKS!!! That is longer than she has been alive! The cast will start at her armpits and finish at her ankles, it cannot be removed. There is an opening for her bottom and vagina for obvious reasons, but that is all. No showers or baths will be possible, and somehow we have to prevent poos and wees getting inside her cast. She is going to be 7 months old before we will be able to cuddle her unimpeded by her cast. 18 weeks of time between now and when we will be able to look at her without her cast on.

Of course this may explain some of the incessant screaming that she has had over the last month or so, as it can't possibly be comfortable - the doctors say it's not painful and demonstrated the dislocation without Abbigail reacting painfully. But seriously! How could it not be at least a little uncomfortable!

I particularly feel really bad. Since she was born I have had a number of times where I've gotten so frustrated with her for crying for "no reason", and there were no real reasons obvious at the time, but I still feel like an incredibly selfish and impatient father for being angry with her. She couldn't tell me what was wrong, and we couldn't have known. Her tears are not for no reason, and now we understand what she has been trying frantically to tell us for goodness knows how long.

So in several hours we will have a cast Baby girl, that will no doubt be in serious pain, and will be frantically desperate to be fed once the surgery is over!

I'll post by phone with updates as I can.

Thanks in advance for thoughts and prayers,
Abe

Long time ... no post...

Hi all,

Abbigail will be 11 weeks old next Tuesday. That statement by itself is fairly amazing! But there have been trials along the way. The regular day to day of feeding, changing nappies and sleeping are just par for the course now - those aren't trials. Silent reflux, hip dysplasia, spilling milk and poor weight gain are our most recent trials. We realised after starting to treat the reflux that Abbigail actually spent most of her awake time crying. It's funny how when something that's abnormal happens all the time, it becomes the normal. It was kind of summed up well by an incident that occurred after the reflux started to be treated on Tuesday. Sarah needed something from Abbigail's room, and thought she was asleep because all was quiet, so she walked in and discovered Abbigail staring back at her from her cot! A quiet baby has been a foreign concept to us! On Thursday Abbigail had an appointment to have an ultrasound scan of her hips to check they are fine. We both thought it would be a formality, but Abbigail screamed blue urder the whole time, and after several atempts they decided that her left hip isn't properly positioned and that she needs a hip brace to ensure they stay in the right place for some undetermined period of time. So they proceeded to try to fit her to a brace, only to discover that there were none her size, so she has to go back next week to be fitted appropriately and have another scan to try to get a better picture of what is going on for her. On Monday we had the plunket nurse come and visit to weigh Abbigail and check on her progress. Apparently she had only put on 50g in the previous 11 days since the last weigh. Since then practically every feed has been a huge disaster - she simply struggles to feed well. We have put it down to silent reflux for which she is now being treated with Ranitidine. I've been feeding her at night to give Sarah a break between feedings to get a decent sleep, and ordinarily she would cry to wake us up to feed her, then she would settle as she fed and really guzzle it down, but the last three nights she has continued to scream (not just cry) and I litereally have to hold the teat in her mouth so that she swallows some milk between breaths as she screams. That is until she passes out from exhaustion and finishes the rest of her bottle while she is asleep. There are times when she is very happy and alert, so we're not so concerned about her not getting enough, but it's so hard on us, and of course her.

Don't get me wrong - this is not a complaining session, or a I wish we hadn't done this, because she is still the most amazing thing that has happened to us, and we thank God for her every day. But it has sure kept us busy, and emotionally drained. The thing is that there are people out there who have much harder times as parents, and considering where we've come from we have no right to complain.
She is still a (between screams) constant source of joy and pride to us both. She is more beautiful today than the day she was born! She just continues to get more georgous as the days go by. She is still under 9 pounds. Here are some more recent pictures...

Isn't she beautiful! We just busted her sucking her thumb! :-) That made us both laugh! I had a bout of awesome smiles from her a few weeks ago, and she's teased us ever since with the odd smile. It's a magical thing to behold. So that has caught you up on where we are at right now. The next week or so will be very interesting as it will lead us on to pathways of solution for many of her problems so far.

Take care all,

Abe